LA HIV/AIDS Comprehensive Care Plan: 2004

DRAFT NOT FOR CITATION

© PCH and County of Los Angeles December 2004

COUNTY OF LOS ANGELES

HIV/AIDS COMPREHENSIVE CARE PLAN

August 2002

Updated December 2004



COUNTY OF LOS ANGELES

HIV/AIDS COMPREHENSIVE CARE PLAN Prepared for The Los Angeles County Commission on HIV Health Services December 2004

Submitted by Partnership for Community Health, Inc.

PCH Contact Information: Mitchell Cohen, Ph.D. 245 West 29th Street Suite 1202 New York, NY 10001 Phone: 212 564 9790 E-Mail [email protected]



TABLE OF CONTENTS

ACKNOWLEDGEMENTS .............................................................................................................................ii THE FACE OF AIDS......................................................................................................................................iv

African American MSM.............................................................................................................................iv Recently Incarcerated ...............................................................................................................................viii IDU..............................................................................................................................................................x Non-IDU....................................................................................................................................................xii Homeless ..................................................................................................................................................xiii Anglo MSM...............................................................................................................................................xv Women Aged 13 to 49 ............................................................................................................................xvii Youth (13 to 24 Years of Age)..................................................................................................................xx Chronically Mentally Ill ..........................................................................................................................xxii

EXECUTIVE SUMMARY ..........................................................................................................................xxv Positive Outcomes with Some Cautions .................................................................................................xxv Changing Profile of the HIV/AIDS Epidemic .......................................................................................xxvi

More Service with Fewer Resources ..............................................................................................xxvi Unmet Need ....................................................................................................................................xxvi Profile of PLWH/A .........................................................................................................................xxvi Service Needs................................................................................................................................xxviii Service Gaps ....................................................................................................................................xxx Barriers to Receiving Services ........................................................................................................xxxi

Vision of the Commission....................................................................................................................xxxiii Goals.....................................................................................................................................................xxxiii

Goals for 2005-2008 .....................................................................................................................xxxiv Last Word ..............................................................................................................................................xxxv

INTRODUCTION ....................................................................................................................................xxxvii How the Plan is Organized.................................................................................................................xxxviii Methodology ........................................................................................................................................xxxix

HIV/AIDS Care Assessment Project: Questionnaire and Focus Groups (H-CAP) ......................xxxix Sampling .............................................................................................................................................xl Recruitment ........................................................................................................................................xli Consumer Survey ............................................................................................................................ xliii Analysis...........................................................................................................................................xlvii

Compensation....................................................................................................................................... xlviii Data Sources......................................................................................................................................... xlviii

1. WHERE ARE WE NOW..............................................................................................................................1-1 MISSION OF THE COMMISSION............................................................................................................1-1 VISION AND VALUES OF THE COMMISSION....................................................................................1-1

Regional Planning .............................................................................................................................1-2 CONTINUUM OF CARE.............................................................................................................................1-3

Interface with Comprehensive Prevention Program ................................................................................1-6 PRIORITY AND ALLOCATIONS.............................................................................................................1-8

Priorities ...................................................................................................................................................1-8 FUNDING THE CONTINUUM OF CARE..............................................................................................1-13

An Overview of Funding........................................................................................................................1-13 Ryan White Title I, II and MAI CARE Act Funds ................................................................................1-14

Minority AIDS Initiative (MAI) .....................................................................................................1-14 Non-Commission Allocated Ryan White CARE Act Titles II, III, and Part F Funding........................1-16 Service Allocations ................................................................................................................................1-17 Medi-Cal and Medicare..........................................................................................................................1-19 Veterans Administration ........................................................................................................................1-19 Housing and Urban Development (HUD)..............................................................................................1-19 Los Angeles County Department of Social Services .............................................................................1-20



Food Stamps...........................................................................................................................................1-20 Substance Abuse and Mental Health Services Administration (SAMHSA)..........................................1-20 Child Health Insurance Program ............................................................................................................1-21 Department of Children and Family Services (DCFS) ..........................................................................1-21 California Children’s Medical Services .................................................................................................1-21 WIC and Child and Adult Care Food Program ......................................................................................1-21 Los Angeles Department of Transportation (LADOT), Metropolitan Transit Authority (MTA), and Access Services, Inc. (ASI)....................................................................................................................1-21 Recommended 2004 RW TI and TII Allocation ....................................................................................1-23

OUTCOMES................................................................................................................................................1-25 Mortality: Death Rates and Case-Fatality Rates ....................................................................................1-25

Progression from HIV to AIDS ......................................................................................................1-27 New AIDS Cases by Ethnic Populations ........................................................................................1-27 New AIDS Cases by Risk Group ....................................................................................................1-28 New AIDS cases by SPA ................................................................................................................1-29

Medication and Adherence.....................................................................................................................1-30 Taking Medication ..........................................................................................................................1-30 Adherence .......................................................................................................................................1-31

Opportunistic Infections (OIs) ...............................................................................................................1-33 Quality of Life ........................................................................................................................................1-35

PROFILE OF THE LOS ANGELES EMA AND THE EPIDEMIOLOGY OF PLWH/A..................1-38 Persons Living With AIDS ....................................................................................................................1-39 The Risk Group Profile of PLWA..........................................................................................................1-39 The Gender Profile of PLWA ................................................................................................................1-40 The Ethnic Profile of PLWA..................................................................................................................1-41 Subpopulations with Small Numbers of PLWA ....................................................................................1-42 PLWH/A: Disproportionate Impact .......................................................................................................1-43

Ethnic Racial Distribution of HIV and AIDS .................................................................................1-43 Regional Variation .................................................................................................................................1-44

CO-MORBIDITIES ....................................................................................................................................1-50 Substance Use ........................................................................................................................................1-50

IDU and non-IDU ...........................................................................................................................1-50 IDUs (Not MSM/IDUs) ..................................................................................................................1-50 MSM/IDUs......................................................................................................................................1-51

Poverty ...................................................................................................................................................1-51 Insurance ................................................................................................................................................1-52 STDs.......................................................................................................................................................1-53

Syphilis............................................................................................................................................1-53 Gonorrhea........................................................................................................................................1-54 Hepatitis ..........................................................................................................................................1-55 Tuberculosis ....................................................................................................................................1-56 Homelessness ..................................................................................................................................1-56

NEEDS, UNMET NEEDS, GAPS, AND SERVICES DELIVERY BARRIERS ..................................1-60 Service Categorization ...........................................................................................................................1-60 Most Needed Services ............................................................................................................................1-60 Top Rated Needs ....................................................................................................................................1-61 Top Service Needs: Gender Differences ................................................................................................1-64 Top Service Needs: Ethnic/Racial Differences ......................................................................................1-65 Top Service Needs: Risk Group Differences .........................................................................................1-68 Top Service Needs: SPAs ......................................................................................................................1-71 Top Needs by Stage of Infection............................................................................................................1-73 Awareness, Demand, Utilization, and Satisfaction with Care Services.................................................1-74 Service Gaps...........................................................................................................................................1-79

BARRIERS ..................................................................................................................................................1-83



Structural ................................................................................................................................................1-87 SPECIAL POPULATIONS........................................................................................................................1-93

Men of Color Who Have Sex With Men (MSMC) ................................................................................1-94 Recently Incarcerated .............................................................................................................................1-96 Undocumented PLWH/A .......................................................................................................................1-99 Men who have Sex with Men (MSM)..................................................................................................1-102 Latinos/as or Hispanics ........................................................................................................................1-105 Severely Mentally Ill (SMI) .................................................................................................................1-108 Women of Childbearing Age (WCB)...................................................................................................1-111 Homeless ..............................................................................................................................................1-115 Youth ....................................................................................................................................................1-118

2. WHERE ARE WE GOING?........................................................................................................................2-1 GOAL AND OBJECTIVES .........................................................................................................................2-1

Overall Goals............................................................................................................................................2-1 Progress Since 2002 .................................................................................................................................2-1

Service Achievements.......................................................................................................................2-3 Planning Accomplishments...............................................................................................................2-4 Infrastructure Development Accomplishments ................................................................................2-5

Objectives through 2008 ..........................................................................................................................2-6 Service Delivery Goals .....................................................................................................................2-7 Planning Goals and Objectives .........................................................................................................2-9 Infrastructure Goals.........................................................................................................................2-10

3. HOW WILL WE MONITOR OUR PROGRESS AND RESULTS .........................................................3-1 SERVICE DELIVERY GOALS AND OBJECTIVES ..............................................................................3-1 PLANNING GOALS AND OBJECTIVES.................................................................................................3-5 INFRASTRUCTURE GOALS AND OBJECTIVES.................................................................................3-8

4. ATTACHMENTS..........................................................................................................................................4-1 TABLES Table 1-1 Sample Quotas by Ethnicity and Gender........................................................................................................xli Table 1-2 Open Recruitment Sessions..........................................................................................................................xliv Table 1-3 Final Sample.................................................................................................................................................xlvi Table 1-4 Sample Quotas by Ethnicity and Gender vs. Unweighted and Weighted N=732 .......................................xlvii Table 1-5 Focus Groups............................................................................................................................................. xlviii Table 1-1 Data Elements of Service Category Summary Sheets...................................................................................1-9 Table 1-2 Decision Making Paradigms..........................................................................................................................1-9 Table 1-3 Decision Making Values .............................................................................................................................1-10 Table 1-4 Funding Scenarios .......................................................................................................................................1-10 Table 1-5 Service Category Prioritization ...................................................................................................................1-10 Table 1-6 Continuum of Care Services by Ranking and Priority ................................................................................1-11 Table 1-7 Year 16 Allocation Timeline .......................................................................................................................1-12 Table 1-8 All 2004 Care Service Funds.......................................................................................................................1-13 Table 1-9 Trends in HIV/AIDS Funding .....................................................................................................................1-18 Table 1-10 2004-5 Allocations ....................................................................................................................................1-23 Table 1-11 PCP by Ethnicity (per 100,000).................................................................................................................1-34 Table 1-12 PCP by Race among PLWA (per 100 –year) ............................................................................................1-35 Table 1-13 ESTIMATE OF PLWH/A.........................................................................................................................1-38 Table 1-14 Population and PLWA by SPA .................................................................................................................1-44 Table 1-15 Insurance by Ethnicity and SPA................................................................................................................1-53 Table 1-16 Needs Assessment Survey Services (2004)...............................................................................................1-61 Table 1-17 Top Ranked Service Needs by Gender......................................................................................................1-64 Table 1-18 Service Need Rankings by Ethnicity .........................................................................................................1-66 Table 1-19 Comparison of Risk Group Ranking of HIV/AIDS Service Needs ..........................................................1-69



Table 1-20 Service Need by Stage of Infection ...........................................................................................................1-73 Table 1-21 Types of Barriers .......................................................................................................................................1-84 Table 1-22 Special Population Estimates1 ...................................................................................................................1-93 Table 1-23 MSMC: Top Barriers to Care ....................................................................................................................1-96 Table 1-24 Recently Incarcerated: Top Barriers to Care .............................................................................................1-99 Table 1-25 Undocumented: Top Barriers to Care......................................................................................................1-102 Table 1-26 MSM: Top Barriers to Care.....................................................................................................................1-105 Table 1-27 Latinos: Top Barriers to Care ..................................................................................................................1-108 Table 1-28 Severely Mentally Ill: Top Barriers to Care ............................................................................................1-111 Table 1-29 Women of Childbearing Years (18-49): Demographic Profile ...............................................................1-111 Table 1-30 Length of HIV Infection in WCBA.........................................................................................................1-112 Table 1-31 WBCA: Top Reasons for Skipping Medications ....................................................................................1-113 Table 1-32 WCBA: Reasons for Not Seeking Care...................................................................................................1-114 Table 1-33 Homeless: Top Barriers to Care ..............................................................................................................1-118 Table 1-34 Youths: Reasons for Not Seeking Care ...................................................................................................1-121 Table 2-1 2002 Goals and Accomplishments ................................................................................................................2-1 FIGURES Figure 1-1 Recruitment Process.....................................................................................................................................xlii Figure 1-1 SPA Map ......................................................................................................................................................1-2 Figure 1-2 Continuum of Care Model ...........................................................................................................................1-5 Figure 1-3 Comprehensive Prevention Program............................................................................................................1-7 Figure 1-4 Priority and Allocation Process....................................................................................................................1-8 Figure 1-5 Distribution of $547 Million in Care Funding ...........................................................................................1-14 Figure 1-6 Distribution of $36.6 million 2004 RWT I, II, MAI Funds .......................................................................1-15 Figure 1-7 Breakdown of Title I & II 2004 Funding ...................................................................................................1-16 Figure 1-8 Resource Expenditures for 2004 ($41.8 million) .......................................................................................1-24 Figure 1-9 HIV/AIDS Deaths by Ethnicity per 100,000 of L.A. EMA Population ....................................................1-26 Figure 1-10 Case-Fatality Rates...................................................................................................................................1-27 Figure 1-11 AIDS Cases by Year of Diagnosis by Race .............................................................................................1-28 Figure 1-12 AIDS Cases by Year of Diagnosis by Risk Group ..................................................................................1-29 Figure 1-13 AIDS Cases by Year of Diagnosis by SPA..............................................................................................1-30 Figure 1-14 Medication by Stage of Infection.............................................................................................................1-31 Figure 1-15 PLWH/A Adherence to Medication.........................................................................................................1-32 Figure 1-16 Reasons for Skipping Medications by Ethnicity......................................................................................1-33 Figure 1-17 Reasons for Skipping Medications by Mode of Transmission ................................................................1-33 Figure 1-18 Quality of Life – Physical Health.............................................................................................................1-37 Figure 1-19 Quality of Life – Emotional Health .........................................................................................................1-37 Figure 1-20 Living with AIDS by Risk Group ............................................................................................................1-40 Figure 1-21 PLWA by Gender.....................................................................................................................................1-41 Figure 1-22 Living with AIDS by Ethnicity ................................................................................................................1-42 Figure 1-23 Impact of HIV/AIDS Epidemic on Racial/Ethnic Communities in LAC ................................................1-43 Figure 1-24 Population and PLWH/A by SPA ............................................................................................................1-45 Figure 1-25 AIDS by Zip.............................................................................................................................................1-46 Figure 1-26 Regional Variation - PLWH/A.................................................................................................................1-49 Figure 1-27 PLWH/A Living Below Poverty Level....................................................................................................1-52 Figure 1-28 Syphilis Cases (1998 -2003) ....................................................................................................................1-54 Figure 1-29 Gonorrhea Cases (1998 - 2003) ...............................................................................................................1-54 Figure 1-30 Trends in Tuberculosis by Ethnicity ........................................................................................................1-56 Figure 1-31 Homelessness & Transitional Housing by Race, Gender and Risk Group ..............................................1-58 Figure 1-32 Ranked Service Needs..............................................................................................................................1-63 Figure 1-33 Need - Difference by Gender ...................................................................................................................1-65 Figure 1-34 Comparison of African American Service Need to ALL PLWH/A ........................................................1-67



Figure 1-35 Comparison between Latino Service Need and All PLWH/A.................................................................1-67 Figure 1-36 Comparisons between API/Other Service Needs and All PLWH/A .......................................................1-67 Figure 1-37 Comparison between MSM/IDUs Service Needs and All PLWH/A.......................................................1-70 Figure 1-38 Comparison between IDUs Service Needs and All PLWH/A .................................................................1-70 Figure 1-39 Comparison between Heterosexual's Service Needs and All PLWH/A ..................................................1-70 Figure 1-40 Top Service Needs by SPA ......................................................................................................................1-72 Figure 1-41 Comparison of Need between PLWH and PLWA...................................................................................1-74 Figure 1-42 Consumer Awareness, Demand, Utilization, and Satisfaction of Most Needed Services .......................1-76 Figure 1-43 Consumer Awareness, Demand, Utilization, and Satisfaction of Moderately Needed Services .............1-77 Figure 1-44 Consumer Awareness, Demand, Utilization, and Satisfaction of Less Needed Services ........................1-78 Figure 1-45 Need – Ask Service Gaps.........................................................................................................................1-80 Figure 1-46 Ask-Receive Service Gaps.......................................................................................................................1-82 Figure 1-47 Barriers to Services ..................................................................................................................................1-86 Figure 1-48 Top Service Needs for MSMC.................................................................................................................1-95 Figure 1-49 Top Service Needs Among Recently Incarcerated ..................................................................................1-99 Figure 1-50 Top Service Needs for Undocumented PLWH/A..................................................................................1-101 Figure 1-51 Top Service Needs for MSM living with HIV/AIDS ............................................................................1-104 Figure 1-52 Top Service Needs among Latinos ........................................................................................................1-107 Figure 1-53 Top Service Needs among Severely Mentally Ill ..................................................................................1-110 Figure 1-54 Top Service Needs for WCBA...............................................................................................................1-114 Figure 1-55 Injectable Substance Use in Last Six Months ........................................................................................1-116 Figure 1-56 Top Service Needs for Homeless PLWH/A...........................................................................................1-117 Figure 1-57 Top Service Needs for Youths living with HIV/AIDS ..........................................................................1-120 ATTACHMENTS Attachment 1 2004 Needs Assessment Survey..............................................................................................................4-1 Attachment 2 Focus Group Outline for Selected Populations .......................................................................................4-1 Attachment 3 Focus Group Outline for Out-of-Care.....................................................................................................4-1 Attachment 4 Secondary Information Sources ..............................................................................................................4-1 Attachment 5 SPA Descriptions ....................................................................................................................................4-1 Attachment 6 Service Provider Network Plan ...............................................................................................................4-1 Attachment 7 Service Category Summary Sheet - Example .........................................................................................4-1 Attachment 8 Formula for Estimating PLWH/A ...........................................................................................................4-1 Attachment 9 Poverty Levels.........................................................................................................................................4-1 Attachment 10 2004 Survey Cross Tabs........................................................................................................................4-1 Attachment 11 2004 Survey Cross Tabs – Selected Populations ..................................................................................4-1 Attachment 12 HIV/AIDS Interface Technology System (HITS) Project Description.................................................4-1 Attachment 13 Community Advisory Boards and Consumer Involvement ..................................................................4-1 Attachment 14 2002 Recommendations from the Assessment of the Administrative Mechanism...............................4-1 Attachment 15 Core Service Program Indicators ..........................................................................................................4-1 Attachment 16 Goals and Objectives for Implementing Core HIV/AIDS Services......................................................4-1



Abbreviations ADAP AIDS Drug Assistance Program Af Am African American API Asian / Pacific Islander ASD Adult/Adolescent Spectrum of Disease ASO AIDS Service Organization CHHS Commission on HIV Health Services CPG Community Planning Group EMA Eligible Metropolitan Area HARS HIV/AIDS Reporting System HAV Hepatitis A H-CAP HIV/AIDS Care Assessment Project HCV Hepatitis C HET Heterosexual HITS HIV Interface Technology System IDU Injecting drug user IMACS Information Management of AIDS Clients and Services LAC Los Angeles County MSM Men-who-have-sex-with-men MSMC Men-who-have-sex-with-men of color Native Am Native American OAPP Office of AIDS Programs and Policy OI Opportunistic infection PCH Partnership for Community Health PLWH/A Person living w/ HIV/AIDS PP&E / P&P Planning, Priorities, and Evaluation renamed to Priorities and Planning Committee PPC Prevention Planning Committee RWCA Ryan White Care Act SCSS Service Category Summary Sheet SHAS Supplemental HIV/AIDS Study SPA Service Planning Area STD Sexually transmitted diseases TB Tuberculosis TG Transgender VA Veteran’s Assistance WCBA Women of Childbearing Age Youth PLWH/A 24 years of age or younger


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ACKNOWLEDGEMENTS This Comprehensive Care Plan has benefited from the collaboration of many persons and organizations. First, and foremost, it reflects over 1000 people living with HIV/AIDS (PLWH/A) who completed surveys, focus groups, and key informant interviews in 2002 and 2004. We further acknowledges those who have participated in various other studies and tracking tools used for secondary analysis, such as SHAS, ASD, Young Men’s Survey, and the African American Men’s Study. In 2004 the data was collected under the umbrella of the HIV/AIDS Care Assessment Project (H-CAP). Los Angeles County HIV/AIDS care providers played a key role in the recruitment of participants for H-CAP, and in addition to their day-to-day responsibilities, 34 recruiters at different agencies successfully recruited clients. We acknowledge the substantial effort that went into this effort. Special thanks is extended to those agencies that nearly reached or exceeded their recruitment goals including: AIDS Project Los Angeles, Northeast Valley Health Corporation, Valley Community Clinic, Prototypes, Tarzana Treatment Center, Being Alive Long Beach, Bienestar, Common Ground, Project Angel Food, El Proyecto del Barrio, City of Long Beach Department of Health & Human Services , Children’s Hospital of Los Angeles, HALSA, Los Angeles County Olive View Medical Center, Caring for Children and Families with AIDS, JWCH Institute, Inc., Project New Hope, Los Angeles SHANTI Foundation, The Catalyst Foundation for AIDS Awareness, and Cri-Help, Inc. The Commission on HIV Health Services (Commission)’s Priorities and Planning (P&P) Committee oversaw the needs assessment and comprehensive care planning project: Brad Land, Kathy Watt (Co-chairs), Hugo Farias, Mark Parra, Anna Long PhD, Elizabeth Marte, and Kevin Van Vreede donated considerable time and energy toward this work. They have participated in the process, guided the effort, and been invested in the outcome. Los Angeles County’s Commission on HIV Health Services (Commission) staff, led by Craig Vincent-Jones, has provided critical input and supervision. H-CAP would have been impossible to implement without his support and commitment to have the voice of PLWH/A systematically represented in the planning process. Commission staff, Libby Boyce, Sherry Rolls, Jane Nachazel, Nicole Werner, and Virginia Gomez provided logistic support during the many facets of the process. Doug Fry, MD MPH of the Department of Health Services, HIV Epidemiology Division, was the conduit for much of the epidemiological information used in this Plan. Several persons at OAPP provided support. Michael Green, PhD, provided helpful feedback on the methodology. Ms. Diana Vasquez, RN, MPH, has assisted in assuring that providers participate in the process, and her support and that of the other contract managers helped make H-CAP’s first year a success. Juhua Wu was instrumental in assisting with the beginning phases of H-CAP including the IRB Application and provider training. The H-CAP staff and interviewers spent numerous hours contacting recruited PLWH/A, scheduling interviews and conducting them. Their conscientious efforts and patience in


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conducting interviews helped assure the high quality of the data. Ms. Irene Hung provided oversight of the field procedures and interviewers were Matt Rowe, Felipe Hoyos, Vanessa Unkeless, Lavern Maison, Jeannie Kim, Sara Lee, Jose Luis Toledo, and Sam Morris listened and recorded the service needs, gaps, and barriers of PLWH/A in the Los Angeles EMA. The main analysts and synthesizers of information in the Plan, Mitchell Cohen, PhD, Lucia Orellana, Irene Hung, Felipe Hoyos, and Lavern Maison from the PCH, deserve special mention for their efforts in synthesizing the H-CAP information so that a representative voice of PLWH/A can express their needs, barriers and gaps in services can be part of the HIV/AIDS care planning process.


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THE FACE OF AIDS The first step in planning HIV/AIDS care services is to understand the health care and social challenges faced by a wide diversity of populations infected with HIV and AIDS. Below, nine composites are compiled based on epidemiological, survey, and focus group data. They place a face on AIDS and a referent for health care planning. These are the communities whose life can be improved when their needs are met. Listen to how they talk about their lives, and ask yourself what HIV/AIDS services can address the many challenges they face as PLWH/A. African American MSM I live in Los Angeles proper – in the central part of LA. I’m in my mid-thirties, and I like having sex with other men. Maybe I’m gay, but I don’t like that label – it’s for White boys and doesn’t describe me. I hear that most Black men living with HIV and AIDS are around my age, but I know infected Black brothers who are teenagers and I know brothers who are grand-dads. I’ve been to school and completed college (a lot of us have). I’ve never been married, but some of my buddies that I have had sex with are married and have kids. They are on the “down-low” if you know what I mean. I first took the test in 1992. I had a good reason to take it at the time, but wasn’t ready to go back for my results two weeks later. I waited and was tested again about a year later. This time I got my results, but I didn’t really try to get any medical services for about three years – I felt fine, and I hadn’t heard anything but bad news about the medication they were putting people on. In school I read about that Tuskegee experiment where Blacks were infected with STDs and I am really suspicious of clinics run by White folk. When I finally did go for help, it was only because I had pneumonia. Since then I’m feeling better than I have in a long time. I know a lot of this is because of the medication. I’ve been on antiretrovirals and protease inhibitors. I’ve never liked them but I know they help. At first it was really difficult. The clinic was really busy and the doctor didn’t really have the time to explain everything to me. That was okay, because I’m a college graduate. I can read right? But things were really complicated, so I didn’t really get all the detail, and at first I had all the different meds and times mixed up. But after a while you get the hang of it, and you know what to take, how and when. But even then, sometimes it gets to be too much, trying to eat regularly, dealing with rashes, numb legs, and the worst is the diarrhea. Besides sometimes I’ve got other things on my mind and just forget to take my meds, and at least a few times, I’ve just gotten tired of the whole routine and taken a little holiday from my meds. For some of my infected brothers, HIV isn’t the only problem we have. A lot of my friends have had other STDs and quite a few people I know are hooked on drugs. Some of my unlucky friends have spent time on the street or in a shelter. About ten years ago I had a friend that was put out by his family and ended up on the street. People may be a little more accepting now, but believe me, not that much has changed.


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Before, when I saw a person sleeping on the street I thought, how can a person sink so low? But later, when I was sick and between jobs I came pretty close to being on the street myself. But I was lucky; friends and relatives let me crash in their apartments. Still, even for me with a college education, being homeless is just a matter of a little bad luck. While I don’t qualify for food banks some friends say they can help. But they say it’s difficult to get there during work, and it’s impossible to get good fresh food. There’s only so many times anyone can eat canned soup and boxed macaroni and cheese, and that’s when we’re lucky enough to meet the income level for the food bank. You might not think about it but sometimes, but something as basic as food is hard to afford, and we need nutritious food that is familiar to us and good for us. I’ve never been in jail and never been arrested, but maybe half the guys I hang with have. They tell me “you don’t want to go to jail, especially if you have HIV”. They say others in jail avoid you or worse, and it can be impossible to get the right meds. It’s tough to get linked to services and programs when you get out. One of the hard things for me is finding and staying employed. It’s never been easy, but since I’ve been sick off and on it’s harder to find and keep a job that pays all the bills. Health benefits don’t come with part-time work. I’m lucky I guess, I’m working now, but I won’t make more than $20,000 this year. That doesn’t seem too bad when you just hear it, but here’s the deal: I take home maybe $1,500 a month from my part-time work and sometimes the side-effects of the meds make me miss work so it’s less. My rent is $850 a month, not including my utilities, or stuff for my oral hygiene, or household cleaning products --you have to live in a clean place. Some of my friends have Section 8 housing, and while it is less rent, many Section 8 apartments are in unsafe neighborhoods. Besides, Section 8 is all but impossible to get these days even for people who don’t work. So, my rent is way over half of what I make, and with food and medical costs there is nothing left. I need my car to get to work and to my medical appointments. Even then, sometimes I’m too sick to drive around to all my appointments. The car is a big expense, but it’s not safe to take the bus at night in certain areas and if you have to go across town it can take hours with all the transfers and I can’t spend all that time and still keep a job. Let me tell you about what folks like me need to stay alive. First, we need medical services. Thanks to the CARE Act we get that. The basics follow, housing (not a shelter or SRO), but a place to live that is safe and our own and then food. We need information about affordable housing, programs, and support services to help us get housing and keep it, and food and nutritional support so we can stay healthy. And man, the system works against people like me who try and work. I can’t afford health insurance, but Medi-Cal keeps telling me I make too much money to qualify. I really need help with paying for the medication. The same goes for housing and food programs. Even the food


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banks say I make too much. So, maybe I’m thinking I’ll have to quit my job just to get the benefits I need to stay alive. If someone were to ask me if there were enough services out there, I’d have to say yes there are. Is it easy to get those services? Are they easy to use? Not always, not even generally. My case manager tired to help, but sometimes I think she is guarding the gate to services I need rather than helping me get them. When I first entered the system I didn’t know what services were available to me, and, like I said, eligibility rules are a maze. Finding out the range of services is hit and miss, it’s more word of mouth than some comprehensive source you can go to and say hook me up. If you’re lucky, solid directories and word of mouth will point you to where to go. But sometimes I find that the best services are across town or the Valley and the folks don’t look or act like you and that’s another problem. Even when I have found a service I really need in a directory, it doesn’t tell you how to get in, what to say, what you have the right to ask for, or question. Sometimes, once you’ve made it through the door, the treatment is impersonal; you feel like a number or a fly on the wall someone suddenly noticed after a half an hour. Will that keep me from getting services? No, not me. But it might make someone that was just diagnosed think they’ll come back later, or a young kid head for the door. Right now I’m doing ok. I’ve learned enough about the system to get what I need. But like I said, it would be much easier for me to just quit my job and accept the hand-outs. When you don’t have anything that’s when you get the most help. But then the disease would take my sense or worth and esteem, and then what would be left? Undocumented PLWH/A I’ve been in LA for seven years now. Right now I’m living in Pico Union with some other guys from my country, friends I made after I got here. They don’t know my HIV status, and they can’t. I’d lose my bed and my space when we get jobs. I got tested when I was really sick with the flu about two years ago. I’d been going to the botánica to get the remedies we use at home, but nothing helped. Finally I went to a clínica in my neighborhood – one that will see us for free or low cost, won’t ask about papers and really just wanted to help. They had some people in that day doing a special outreach and HIV and STD testing. I got talking to some of the outreach workers and it sounded like it was really something I should do. So I got tested and made another appointment to get my results. When I went back the doctor told me what I didn’t want to know and gave me a form to take to an AIDS clinic. When I left I burned the form so that no one would see it. My flu symptoms went away. So I prayed I’d stay healthy and didn’t talk about it. I had to be sure nobody would see me near an AIDS clinic. It’s a really small world where I live. At that point I just got a place to live. I spent the good part of two years since I arrived on the street, doing any day work I could find. I


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couldn’t jeopardize what I’d worked for. What if Immigration found out? What if my family back home found out? I’m not like some of my friends who whore around a lot and do heavy drugs. I drink a little and do some weed on weekends. When I work, I am able to send some money home to my mother and sister. I have a girlfriend in my hometown and I try to stay faithful, but sometimes, when I drink too much, I get lonely and things happen. I hoped to bring her up here and we could get married and start a new life with some possibilities, but now I’m positive, and I don’t know what to say to her. When I look back at it, it was the drinking that probably got me in trouble. You do stupid things when you’ve had too much to drink, and even though I knew about HIV I thought about my friends who take really big risks and they aren’t HIV positive. I didn’t think it would happen to me. It’s not fair. After that first bout of the flu, my health got better and stayed pretty good for about two years. But about three months ago the virus really got hold of me. My color was bad, I was tired all the time, and I lost a lot of weight. I could tell everyone was talking about me. I knew I had to go see a doctor, but I don’t have health insurance – who can afford it? So I went back to the clínica for that piece of paper, and they referred me to a place a place in East LA. I was surprised when I went to the AIDS clinic. They speak Spanish so I understand what they tell me, and the services are good. This place understands people in my situation; they only ask the questions they have to. They gave me a good case manager that has good contacts for other services that I need. The clinic said the virus has really taken over my body – my viral load – whatever that means – had skyrocketed and I had to start taking these pills. They are very expensive but the clinic says they can help me get them for free. But even if I could get the pills where would I keep them and how would I take them? Because I live with a lot of other guys, I couldn’t take them the way the doctor told me I needed to (some with food, some three times a day). If I started taking all these pills every day for a long time my friends would know. So I took the pills they gave me, then I stopped. I still have the prescription slips for more, and I need to put them someplace safe because people may see them and know that I have an illness. I could lose everything. Anyway, I’m feeling better now both physically and spiritually, so I don’t think I really need the medication anymore. It’s better to wait until I really need them again to take them. I figure I’ve come through worst than this and I’m a fighter. I have to be. At the clinic my case manager invited me to a private group of other HIV positive persons working in LA without legal papers to discuss our HIV care needs. We were all pretty thankful that the clinic gave us good care. If we were sick back home we couldn’t get this kind of care. Besides the medical care we mostly need really basic things like food and housing, and someone to tell us where to go to get them. If I had a place to live, even just a room by myself, then I could take the medicine in a private place and I wouldn’t have to worry about others finding it. Like me, others in the group said they got referrals from their case manager to other services, but I don’t know if they are safe to use. Sometimes when I went to other services people didn’t


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speak my language or understand my situation. The only way to find out about good services is by talking to others you know understand your situation. But even sitting in a waiting room you’re not going to ask somebody where you can find safe AIDS services. You don’t really know who they are. It used to be that facing my condition was my biggest problem. Now that I accept that I am HIV positive, I have different issues. The AIDS clinic provides good medical care, but I can’t find many services that will help you without papers. Even with my case manager, I don’t know what is available to me, and I’m afraid that if I ask they’ll take away what I have. For housing and food everyone wants you to fill out papers; it’s the first thing they ask for when you come in the door. I’ve seen people go in speaking English and they still ask first about papers. I see people getting into apartments, and getting on special programs for medication, but no one really offers that information. I don’t know if it’s for people in my situation, or if you have to be a citizen. I am really thankful that I get medical care, and, you know rather than jeopardize that, I am better off not asking too many questions. Recently Incarcerated I’m White, 40 and have AIDS. I was caught again tryin’ to support my habit -- armed robbery. This time around I was sentenced to 5 years. This isn’t my first time in the joint. I did a lot of time with the CYA, and then little time in other states. Sometimes it seems like I’ve been inside most of my life, and being White, I’m used to being in the minority. Like a lot of us in the joint, I have both H’s: Hep C and HIV. Rumor has it if you stay inside for long you’ll end up with TB too. Before a few pills would get rid of TB, but now they have this resistant type. .If AIDS doesn’t kill me, then I guess the Hepatitis or TB will unless I get both a cure and a liver. I got diagnosed with HIV maybe 12 years ago, and probably got it in jail. Maybe it was sharing a needle for drugs or a tattoo. Maybe it was sex; I was passed around a lot when I was younger. And, you know, they don’t even have condoms in the jail! Anyway, when I was arrested this time HIV was in my record. Still, it didn’t make any difference to the sheriff. When I was arrested I was put in a cell in the city jail for days with no meds and no doctor. Then after I pled guilty and was sentenced to Lancaster it was like being in a leprosy colony. Maybe 50 of us were positive, and they put us all together. There were teenage gang members and older guys in their 60’s. There were first timers for doing some drugs right along with rapists and killers – real nasty freaks. Still, we were all put in the same area and couldn’t do regular activities. We didn’t get to do nothing except sit around. Even when they finally hooked me up with a doctor and he gave me meds the rest of the guards and staff really didn’t understand or care about my disease. Sometimes we got our meds and sometimes we didn’t. Sometimes the staff wouldn’t be there and you’d go without a dose, or two or three. It didn’t matter if we were supposed to take it with food – it was “take it now or not at all”. Once I got someone else’s medication. I looked at it and was going to take it until I


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realized there were too many pills and some of them didn’t look like mine. I feel sorry for whoever got mine that day. It wasn’t until I got really sick with AIDS and they moved me to the Medical Facility in Vacaville, North of San Francisco. The medical care was better there and I recovered enough to get out of bed after a few months. The worst part was it was so far away. Only a few friends or family could come up from LA to visit – and then only one or two times when they thought I was dying. I thought I had it bad, but this HIV positive con on my ward from another state said that when he got sent to prison in California all his medical records were in another prison system in his home state. He was mad as hell because when they tested him he had to start all his paperwork again. They didn’t even try to get his medical record! He couldn’t even get a case manager before his test result came back. I just got out the joint, so what I told you before is water under the bridge. I’ve seen people beat themselves up with regret, and done a fair bit of that myself, but I’ve got to look forward, not back, not now. As soon as I was out I headed for LA, and now I’m tryin’ to get re-re-established. Having AIDS puts things in perspective, and now I want to re-connect with my family and kids. If you think bein’ in the joint with AIDS is hard, let me tell you bein’ free and living with AIDS on the outside is no piece of cake. I don’t think my story is much different from most guys that have been in jail and have AIDS, but it might help you understand who we are, what we deal with, and what we need. When I got out I was on parole and was sent to a post-incarceration program in LA. They gave me 2 weeks of pills to tie me over. The program tried to hook me up with a clinic and doctor and housing, but I spent a few weeks on the street and in a couple in shelters. I don’t know how people do that, shelters I mean. I’d rather sleep on a bench. Finally the program came through with an SRO. I’m waiting for something better, an apartment or somewhere where I don’t have to bundle everything up every 28 days and move over to another room. At least I’m on a list. I’m one of the few White guys down here, and I’m one of the luckier ones I guess. At first there was too much going on to keep my medical appointments. I had to see my parole officer, and I looked up a couple of old friends. They were infected too, and they were really into crystal meth. But that stuff was way too crazy for me. Sometimes, I smoke a little weed (it does help me feel better, makes it easier to eat, clears my head…). But I’m careful, I try not to take too many chances, I can’t risk going back inside. Anyway, one of the hardest things about being out is not having everything in one place, having to schedule doctor appointments and parole meetings and having to get here and do that. It’s hard having all those choices and responsibilities without a phone and a car.


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Bottom line, I finished my 2 week supply of meds and then I was off them for a couple of months. At first I was feeling pretty good – even some of the side effects of the meds like diarrhea and numbness went away. And I was lucky, and found a place to stay and a job (a major accomplishment) which paid some bills even if it didn’t have insurance. Things were really looking up when I started to feel bad. Pretty soon I was too sick to go to work and, well, that was the end of that job. Down here it’s hard to stay out of trouble. You get down in the dumps and you buy a bottle. After a few months I had to go to the ER with pneumonia. They admitted me and I was lucky. I got better and a case manager there hooked me up with an agency. The agency got me back on my meds and got me GR, which was actually easier to get that than SSI. Now I’m waiting for SSI to kick in. I still hope for better housing and still need a job and food. But everywhere I go you have to fill in papers and unless I lie about my time in jail, I’m not eligible for a lot of the services. Sometimes when I look back at things – where I am, what I have to run around and do, how much things have changed in just five years – sometimes it seems like it would be been easier to just be back inside. If you ask me, what incarcerated people need (those just getting out and those on parole) is a comprehensive program. One that understands all the adjustments we have to make when we step outside those walls. One agency with a whole array of services we need would help, not “just go here for this and see this person for that”. Hey, even the streets have changed, the busses are different, I don’t remember how to get from one end of town to the other. We need services that deal with medical care, food, housing, transportation, drug treatment, and mental health. For the last five years the biggest thing I had to do was to go from my cell to the doctor, to the yard and to the mess hall. Now people expect me to get half way across town and back just to get medication that will make me feel even worse, take a bunch of tests, and fill out forms to get on waiting lists! Once you’ve been in jail you’re labeled so it’s even harder to get any services. Hey, sometimes it’s just too much. For me it was, and when I didn’t get my meds, I got sick and almost died. But that’s water under the bridge. IDU Most of the IDUs I run into with this problem are men. The women, I guess, they don’t share as much, are around, but not as many as men. A lot of IDUs are gay, or have both men and women, but there are some of us that are just IDUs. We’re heterosexual, like back east, where the epidemic is as much about IDUs as it is about gays. Our group is pretty mixed, mostly White and Black guys when you go downtown; on the east side there are a lot of Latino IDUs and in San Fernando where I live, too. I don’t have insurance; actually I don’t have much of anything. Right now I’m in a treatment program (again) so I have someplace to live. Otherwise I’d be on the street unless I could hook up with some of my friends. Like most of the guys I know I’ve got the double whammy – HIV


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and Hepatitis C. I know that I really have to leave the drugs and booze alone with my liver half shot the way it is. I don’t know when I got HIV or Hep C. I know I got really sick a year or so ago and was living on the street and ended up in the hospital. That’s when I got the news. I spent about two weeks in the hospital and then I got set up with some services, and was on a waiting list for drug treatment, but could only get methadone outpatient. So after that I just messed around. I figured they got the wrong blood or something. I was fooling myself – I wasn’t ready to deal with where I was in my life. Since then I’ve been taking it a day at a time. Like my addiction, I'm learning how to deal with the HIV on a daily basis. Dealing with this information is like learning how to walk again. So many things have to change. It’s knowing that I've got to use a rubber, knowing that I've got to abstain from sex and know that I've still got a drug addiction, and any little thing might push me over. It's a lot to deal with. I’m doing some job training, trying to eat right, but taking my meds is really difficult. In the program I’m in, everything is pretty set. It’s hard to eat when you’re suppose to, its hard to go to group and hear folks talking about the problems they’re having trying to kick and cope with your health. Every other day or so I’ll ask what’s the point of trying to get and stay clean; I figure I’ll die from the hepatitis or the HIV in a few years anyway. I think we need different services that are more sensitive services for us. Sometimes I feel it would be easier to get services if I were gay; here in L.A most of the services seem to be for them. There are fewer programs that really understand what we need. Sometimes not being gay can be a stumbling block. I went to one service and as they got to know me better and found out I was a junkie and had junkie behavior and that stuff, that just made things worse. First, we’ve got to have the basics – food and shelter. We need to be able to spend our time doing something more productive than scrounging for a bed and figuring out where we can get some food. Then, we need medical services with doctors that understand addiction; that understand how hard it is to get clean and why we sometimes have a problem with all the medication they want us to take. We need transportation to get to all our appointments and medical and dental care. We need really comprehensive services that can help us get back on our feet and be there when we feel like we’re going to just give up or go crazy. One thing we really need is people that have been there out there, who are there to help with mental health services. The folks you meet in the centers and programs don’t have a clue. They know the addiction side, but many of them don’t know what rock bottom really means and how desperate you get when you know you’ve got the HIV ticking away with the Hep C right behind it. Is it hard to use services? Sort of, once you find them, once they get past your addiction, once you’re clean and ready to use them. The hardest thing about using services is really getting past


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the denial, and then getting past the “less than” feeling (like you really do deserve the illnesses you got and you don’t deserve a second chance.) I want to go back to work. I know it will be hard, but I remember how it used to be; you know how you get that good feeling about working and the extra money. But I’m worried, too. I’ve heard that if you make too much they start messing with your money, and your services. Seems like there’s always a catch someplace. Non-IDU People don’t like to think about it but you can get HIV from using drugs, not shooting, not needles, just drugs. You say you have HIV and people think you’re gay or an IDU. But drugs will make you do things you would never do and makes you take chances you don’t even think about. People say we (us non-IDU drug users) make up less than 3 percent of all people with HIV and AIDS. I think it’s more like ten percent. The drugs, we use it all, crystal meth and speed, but we don’t shoot it. I know some folks that still smoke heroin too. Weed is common and used regularly. In some crowds GHB, poppers and ecstasy are used pretty regularly (or at least at party time.) I’m pretty typical I think. I’m living with some friends in Hollywood. I left home before I finished high school and even though I keep saying I’m going to finish my GED, I haven’t gotten around to it yet. I get by doing odd jobs, when they present themselves, and the four of us that live here manage to pull together enough to get what we need and pay the rent. You know I think I know exactly when I got infected. I knew that I was in a bad place, at a bad time and I got high anyway. I just didn’t care. I just figured okay, just a little fun, a little harmless fun and nobody gets hurt. Right... I think when I found out I was infected it was like just another day, I didn’t think much about it at the time. I said yeah, what else is new. And that was that. I just refused to think about it. Couldn’t, what was I going to do about it anyway? I started to feel like it was just part of some big plan, leave home, get off the streets, manage to dodge bullets and the other dangers of the streets just to put myself it a stupid position and jump right into the fire. I didn’t care, what was I going to do anyway? But then I got sick, really sick and for some reasons I figured I was too young to die. About six months after I was tested, I got into services. By default of course, it wasn’t like I made the effort on my own. I got really depressed. My friends got worried. I wouldn’t eat or get out of bed (part of it was I felt like crap, the other was that I couldn’t move, I didn’t see the point.) So I spent about a day and a half in the ER. They didn’t have a bed and my friends wouldn’t take me back home. Then I got admitted for a couple of days and talked to a social worker that hooked me into services. The most important thing was the case management. I got fixed up with appointments and got my meds (which I really hate to take). I know it’s stupid, but I just have problems with it. We don’t have the right food and the right time. I can’t make it to the food pantry and back on the bus. I get worn out trying to get to my doctors’ appointments.


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Sometimes I know the services are there, but the door seems so far away, and the wait seems so long, that I just get half way there and turn around. I figure someone else will take my place and maybe they really need it more anyway. Sometimes I still use. One thing hard about having to have HIV and be a drug user is that there are so few programs for people like me. I’m not an IDU, I don’t need methadone and I don’t understand programs that say stay clean one day at a time. I never used everyday. I don’t use once a week. Those programs aren’t for me. There need to be programs that deal with the guilt you have after you’ve done something stupid that has changed your life forever, what drives me back to the drugs is that guilt and anger, not a physical addiction. My worst fear is that I’ll end up using, and risk taking and someone else will end up like me. Point me to a program to help me with that and I’ll show up every day. I’ll even take my meds, and finish my GED. I may even write home… Homeless As if things aren’t bad enough all my stuff got picked up by the city and dumped this morning, or at least everything I couldn’t carry or pull. Why don’t I take my meds? The few things I had are in the bottom of a trash truck right now. Even if I could hold on to some of the medication, where would I keep it safe, dry? Forget about refrigeration. Right now I’m concerned about my other poncho and tarp, my dry shoes and my other big bag on wheels. I’m concerned about the $8.50 that I had in cans and bottles. I’m trying to figure out where I’m going to sleep tonight. If I have to sleep on the street, on the ground -- I won’t. I’ll sit at a bus stop or lean in a doorway. When you are homeless and you can’t find a place, you don’t sleep. Once I slept on the sidewalk. It looked okay at the time, but I woke up with ants all over me. Never again, it wasn't cool. Every one that slept on that sidewalk always woke up with ants covered all over them. In some places you get the red ones. But even then no doubt better here than back home, no snow, no freeze and you can stay cool most days in the summer, but it’s different here, especially since they keep herding us around. Get comfortable move over there. Get settled, pick up and don’t come back up here. Problem is, the services (what little there are) are here. When I get those sores on my hands from the cans that I can’t shake, there’s a place were I can get food and a shower. I can even get nurse to take a look at me when it’s bad. That time I had the flu so bad it turned into pneumonia, by buddies dragged me to the clinic and they got me in the hospital. That time, if I was where the police are telling me I to go today, well, I would have died on the street. The clinic, the kitchen, the services are all miles away. What came first, the HIV or the homelessness? I can’t really say. I’ve always knocked around a lot. Can’t stay in one place too long. Back when I was younger, say 25, I actually had a job and a car and I had a year of college under my belt. That was when you could have a decent job with a high school diploma. But something happened. I think I just fell off a ledge someplace and things go dark and confusing and I lost one job, found another, lost it and kept spiraling into a deep hole. The whole


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time I was living fast and furious. I know what they say about how you get HIV. A lot of stuff happens when you’re on the street and get to drinking and smoking rock and you don’t care. I got tested once when I was in the clinic. The nurse said I should because I told her I’d shot drugs and had sex without condoms. (Condoms are like money with the right folks.) So I got tested and was told I could get housing and food and medication. And, I got a lot of papers, and a chair in a waiting room and a list of rules. I felt fine at the time (I had a place to crash and a little money in my pocket) so I didn’t need to wait around all day so someone could look at me the way people do. So I left. I didn’t go back for three years. So now, I had an appointment with a case manager, or at least I think it was, but I stashed the card in one of my books and I’m still trying to figure out if that’s in my backpack or in the city trash truck. I know if things get really, really bad, I can pick up something at the 99 cent store, act a little wild and get a shower, medication and three meals a day. Only problem, I wouldn’t be able to leave when I wanted to. I figure that’s my best bet right now for comprehensive services. A couple of years ago I was getting a check, but I lost track and really don’t have what it takes to go back through all that paper work again. You need help and encouragement to do that, and my best friend lost it and is doing time. Thinking back, us and a couple of other guys had a place to live. We started with a loose SRO and bunked when we could get in and finally got a room and a hot plate and had some pretty good times all things considered. We even got a used little icebox and kept some soda and stuff in it. I could have used it for my meds if I had meds then. I took antiretrovirals for a while, but the stuff was too difficult, and I couldn’t eat right so I stopped. They didn’t go to waste because those are like the condoms; like money on the street. People ask about my health. Well I figure I’m doing pretty good right now. I tested positive for TB but got on some county program and actually got put up in a room as long as it took to take all my meds. But then I finished my meds and well, something else like transitional housing sort of didn’t fall into place. I’ve had Hep A (laid me up for a while), no surprise considering where I get my food sometimes. I don’t have that much sex – where am I going to do for a date? So I don’t and haven’t had VD since I was a kid. But I drink, especially on a day like to day, where I’m all shuffled up and half my stuff is God knows where. Yeah, this is a day for a drink or two or three. I know who the president is, and I know what date it is. I don’t see or hear things like some of the folks down here do. But I’ve had my share of really low times, and sometimes it’s hard to ignore the looks, and stares and inhumane treatment people throw at us, when you know that they may be only a few hard knocks away from the pallet next to you. I’ve tried counseling (it’s not for me.) I’ve already told you what I need right now; my stuff and a place to keep it and me safe and dry, some food and some decent treatment. I need a place to relieve myself that’s not dirtier than the curb or a corner rat alley. I need what everyone else needs, shelter, food first, then a way to get around; I can’t get to services in the valley by bus and back before dark – and if I did, who’s going to watch my stuff. Then I guess I need my teeth pulled or at least some of


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them; try to floss when you don’t even have clean water to drink without loosening a hydrant. Medical care is important, but not as important as the basics. Anglo MSM We remain the largest group of people living with HIV and AIDS, there are estimated to be more than 115,000 of us. More than one in four persons living with HIV and AIDS is an Anglo MSM. I live in West Hollywood; about half of Anglo MSM live in the heart of the city (the Metro Service Planning Area). Many of my friends live in the Long Beach area and some in the San Fernando and San Gabriel Valleys. Although Anglo MSM with HIV/AIDS range in age from the mid twenties to the mid fifties, almost 10 percent of Anglo MSM are older than 55. We tend to be more highly educated than other groups with HIV/AIDS. More than sixty percent of us have spent some time in college and close to one in five have attended graduate school. Although most of us are single, close to one in three lives with a partner. Even though we tend to have higher education only about one in five are employed full or part time. Our incomes are not what they should be; about 85 percent of us are trying to make do with an income of less $27,000. It depends on who you ask, some people say that more than 90 percent are living within 300 percent of the federal poverty level (about $56,500). That’s a lot of variation, and I think that’s the point. There are Anglo MSM living in poverty, and others that see private doctors and have plenty of money. But for most of us, we are okay today and are never quite sure what tomorrow will bring. We can pay most of our bills (excluding medical), as long as we are working, and we are working as long as we have jobs and are well enough to keep them. There are other groups that are worst off, every day. But many of us have spent some time living under those circumstances also. About one in five Anglo MSM have been in jail. I’ve never been incarcerated but I’ve met men that have been and have had friends that have been arrested. I’m one of the lucky ones with decent health insurance, but then I’ve got a job. About half of Anglo men with HIV and AIDS are uninsured. Of those with some type of coverage it’s generally through Medi-Cal or Medicare; less that 12 percent have private insurance. I’ve been infected for about ten years now and that’s pretty typical. More than sixty percent of Anglo MSM have been infected for over eight years. About three of every five of us have some sort of disabling symptoms, with two-thirds of us having an AIDS diagnosis. Despite the length of time most of us have been infected, many of us are doing okay physically. I’m in better health than when I first finally dragged myself to the doctor. (I went once to get my test results and a second time to get my T-cell count. I was doing okay and not interested in getting on any drugs at that time, so I just dropped out of the system for a while. It wasn’t until I started getting sick that I finally had to accept that it was time to get into treatment. I needed to wait as long as I could. It seemed that so many of the people I knew, started on treatment and then the periods when they were doing well got shorter in duration and they seemed to be doing poorly a larger percentage of the time. I felt that once I started treatment, or even paying too


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much attention to the test results that my health would start to deteriorate. I held out as long as I could. If I had known then that I would feel this good, I would have started seeing my doctor sooner. More than three-fourths of us have been on some type of medication (antiretroviral or protease inhibitor) at some point. I’ve heard we are more likely to be on medication as a group when compared to the overall group of people living with HIV and AIDS. Once we’re on, we tend to be reasonably compliant, with approximately 30 percent never skipping medication (more than any other group). Among those of us that aren’t that perfect, about 45 percent of us simply have forgotten a dose here and there (I’ve done than myself more times than I like to admit). Still about 25 percent just don’t want to take the medications and stop at some point, and another 20 percent just can’t tolerate the side effects. Among my friends, two out of three of us have taken a little time off from the medication at one point. We tend to have different rates of some co-infections than other groups. TB is pretty rare, with only about 12 percent even having a positive skin test. I don’t know anyone that has had active TB. A higher percentage of us tend to have had gonorrhea (over 45 percent) and that is higher than among other ethnic groups. About four in ten report a history of syphilis and one in four of us have had hepatitis B. Maybe because we seem to get medical care, although we have a history of these infections, recent STD diagnoses are low. Less than four percent of Anglo MSM have been diagnosed with gonorrhea in the past two years. Although less than ten percent of Anglo MSM feel that injection drug use led to their HIV infection, about 40 percent of us have used a needle at some point. Crystal meth is by far the drug most frequently injected, followed by crack and heroin. Most of us drink alcohol (almost 70 percent), and of those about ten percent report drinking at least once per week. You might find it hard to believe, I did when I first started to realize it, but one in five Anglo MSM have been homeless at some point. Transitional housing, the type that is provided through AIDS services, has been used by almost one in four MSM. I was close to using it once, but had a friend that I was able to stay with until my situation improved (an informal type of transitional housing that I think we use more often than we admit.) Among the people I know, at least one in ten has a precarious housing situation and could be without a place to live in the next three months. Our service needs are pretty much what you would expect; medical and dental services are needed by over 90 percent. Case management is very important with 75 percent identifying this as a critical need. Support services like food and housing are also needed by a substantial proportion (approximately 70 percent). Actually, I’m able to get most of the services I need due to my insurance. I have friends who are uninsured, but they have been linked up to a variety of health and support services. They tell me that once you have a good case manager it’s much easier to get the services you need.


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I’ve heard that the initial experience is pretty overwhelming. I have a friend who told me that it took him a week to go through the directory of services to try to figure out what was available, and what was close to him and then to try to match that information with what he really needed. He said, “I knew every food bank that was offered to me out there. I knew of every different place I could go to get medical help and what was offered where. I knew how to go about getting prescriptions. I knew how to go about doing the things I needed to get done. Now it was up to me to go knock on the doors and find out what help I wanted to take advantage and what help I didn't want to take advantage of.” Not knowing about a service seems to be the number one barrier. Unlike my friend, three out of every four Anglo MSM don’t know certain services are available. Another frequently reported barrier is the long wait to get an appointment. Although the services are available, we frequently discuss problems that we see with the services. In addition to having to wait a long time to get appointments, especially for some specialty services, I’ve talked to several people that share my concerns about the experience and expertise of the provider. I sometimes wonder if the quality couldn’t be better, if the wait for an appointment really needs to be as long, or if more of the staff could be up on the latest information. If someone were to ask me I’d say that access to services is pretty good, but the services need to be enhanced to make them more up to date and easier to use. One of the biggest problems we face is the excessive paperwork. I wish there were a way not to have to keep filling out the same papers, and having to take the same information with you every time you go to a new provider. But on the other hand, there are still very real concerns about confidentiality so for now, I’d be happy if they could find a way to streamline the paperwork. Women Aged 13 to 49 Sometimes I think women are the forgotten victims of HIV and AIDS. Most people think about men, at least in the United States. But there are plenty of women living with AIDS and HIV (often living in spite of it) that people don’t really think about enough. We live for our children and our families and for ourselves, in hope that others won’t have to go through what we do. We’re about 12 percent of all people living with HIV and AIDS, but we tend to get lost in the bigger picture. About 10 percent of us are 24 years or younger. When I think about young women, sometimes under the age of 21, trying to navigate the service system it makes me shudder. Most of us are women of color, African Americans or Latinas, and most of us live in the central and southern areas of Los Angeles County. Two out of every three women with HIV and AIDS have children, like me. I meet women in support groups and a few of them don’t know how they were infected. I know; I have my ex to thank for it, curse him for it, but I know I have to get past the anger, and I have for the most part. I don’t have time to waste on anger now. Like me, most women were infected through sex with a man. Less than 15 percent of us got HIV from injecting drugs.


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Women are frequently in a bad situation in society anyway and this is very clear among women with HIV and AIDS. Almost half of us have not finished high school and fewer than one in three are employed. Most of the women in my support group are like me, living below the poverty level (you try living on less than $720 per month). Many of us, about one in five, feel that we could become homeless in the near future. A lot of us, even though we have a place to live, don’t feel it’s a safe place to live. Sometimes I look around and think what a terrible place to have to raise my kids. But then I remember having to sleep a couple of nights in the car (when we had a car) and then I realized, this isn’t great, but it could be a lot worse. I’ve mentioned my kids but haven’t really told you much about them. My youngest is seven, she’s doing really great and because I knew my status and I took medication when I was pregnant so she’s negative. Then there was my oldest girl; she would have been eleven years old now. Didn’t find out I was infected until I got her test back, she was almost three at the time. My ex, well we were still together at the time, never told me he had HIV. I’m not sure he even knew. My little girl didn’t grow as well as she should have. She always seems to be sick. If a kid around the corner had a cold, she caught it. She was so sickly. I tried all the home remedies that my aunties, cousins and the ladies at church recommended, but she didn’t do any better. The doctors just kept telling me to feed her better, more often, that babies get colds and ear infections. Then they started to ask me about HIV. I thought they were crazy. I was fine, my husband was fine and we were good church going people. So I said, go ahead, do whatever tests you want, just find out what’s wrong with my baby. Well, I’m sure I’m not the only woman with this story. I’ve heard it from other women throughout the years. People have to start talking to each other, protecting themselves and the people they say they love. This should never have to happen to anybody, and especially not a baby. So I figure I’ve been infected for at least 12 years. That’s longer than most women I meet. Most have been infected for between 6 and 12 years, and about a third, less than six years. It’s so sad to know this is still going on, now when the word is out there and women know about HIV. But hey, somehow we always trust our men. Maybe we need to learn to trust ourselves and take care of ourselves. I’ve learned that you have to look out for yourself and your family and sometimes that’s not comfortable and not easy. It’s hard on a family when a kid is sick. I can’t tell you what it’s like to lose a child. For a while I stopped taking my medication, I stopped taking care of myself completely, and then my youngest came in when I was feeling really bad. Even at her young age she knew what was going on. She said, “Mommy, are you going to leave me too? Can’t you stay with me? Sis is okay; Grandma is in heaven with her. I need you to stay here with me.” And she’s what has brought me through. I do all I can to stay as healthy as possible because I am going to be there for her. I will be there to see her graduate from high school and college, she needs me and I’m not going anyplace, not yet.


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So now, I take my medicine (even though it really has some ugly side effects). I felt like a big bloated frog. I started to look at myself in a different way. Nothing fit me anymore; I got bigger in all the wrong places. I’d ask myself, "What is going on with this medication?” Finally I’d had enough and I told myself, “I’ m going to the doctor and he’s going to fix this". Then the doctor tells me that I have to keep taking the medicine. So I do, and the side effects don’t improve and I feel about as ugly and sick as I ever had. Then right when I’m ready to throw all of it out the window, there’s my girl saying, “Mom, you look pretty today. Mom, you took your medicine didn’t you?” I swear she can read my mind.” So yes, I do think about not taking it, but I never miss a dose. I think, what if I hadn’t taken it when I was pregnant with this angel? No, I take it no matter what. Even though we don’t have much money, we’ve got pretty good healthcare. I have Medi-Cal and that helps a lot. Some women (about one in five) don’t have any health coverage and although this is less than the overall groups of people with HIV and AIDS, it’s still too many. Then there are the women with good jobs and they are able to get private health insurance, but that’s not most of us, only about two in every ten. (Those in my group pray they can stay healthy enough to keep working.) My daughter had really good care. They had special pediatric programs set up for children with HIV. And there were even activities for siblings, they really helped my youngest understand what was going on. Of all the services I need, I really need dental care. My teeth are terrible; sometimes I’m embarrassed to smile. We don’t have a car so we spend a lot of time on the bus. On those days when I have a lot of appointments, taxi vouchers are really important. Besides transportation, we need basic things; food, housing. It’s sad to say, but when you’re unable to work and have a child to support, you can’t live on $800 a month. I use the food pantry and vouchers to supplement what I put on the table. It helps so that I can spend the little we have on other things we need. Going to my group really helps. Having other women that know what I’m going through is really important. It also helps to be able to talk to women who were where I was a few years ago. After all, someone was there for me. Being there for others helps keep me going during those hard times. My daughter has also made some good friends, other kids with moms that are living with the same thing. It’s the group that really turned me on to a good case manager years ago. I was able to get a female. That was important for me because I feel that she understands my needs more than a man could. Finding services was a big problem for me. Once I was diagnosed they referred me to medical care and other services. My baby was sick so I took care of her. I was in denial so I didn’t go to my appointment and really sort of ignored the whole issue. Finding the services once I started tying to address my own issues wasn’t easy, the case manager and group really helped with that. Another problem for me and I guess other women is using the services. Sometimes I don’t feel the services are sensitive to women. Most of these services are set up for men since there are more men infected than women. When a woman, especially someone like me, (church going,


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not really exposed to a lot) goes in and sees the posters on the wall that really are aimed at gay men, I get embarrassed. It makes me uncomfortable. I understand they are just trying to be sensitive to the majority of people that they serve, but they should try a little harder to be sensitive to the rest of us too. Another problem is all the paperwork, and that’s not just a problem for women. I hear everybody complaining about that. There is so much red tape, so many complicated forms; I’m never sure what stage of applying, getting, being denied, reapplying that I’m in. It’s so confusing and tiring. Once we can get our benefits, things really improve. But they make it so hard to get them. I’m lucky, I was born here, I can speak the language and read. I was the one that use to do our tax return. Some of the women at the agency where I go for support don’t speak English and even though there are interpreters and people to help them with the paperwork, it has to be overwhelming. I mean, if it’s hard for me; I know it has to be worse for these women. Youth (13 to 24 Years of Age) We are a small but growing group and represent about 12 percent of people living with HIV and AIDS. We are called “youth”. But I think it’s not really fair for us to all be grouped in together. Someone forgot to notice that a 13 year old has almost nothing in common with a 24 year old, except in the case of HIV. We are very different (even though it might not seem like it to someone 50). But I don’t know how we all keep getting lumped together like this; maybe it’s easier for somebody’s paperwork or computer program. Anyway – I’ll humor you. I’ll talk about us like we are a nice neat group. Some of us are just kids that got HIV through no fault of our own (their parents or doctor or somebody else screwed up). Others are more like “adults” because we engaged in the behavior that got us where we are today. There were some, if not most of us who really didn’t know any better, even in these times, we just didn’t know and if we did we sure didn’t believe we knew anyone with HIV. After all we were strong and invincible and the people we hung with were like us. They looked healthy and safe. We just didn’t think and didn’t really know. About two-thirds of us live on the south, South Bay, Long Beach and Metro areas of Los Angeles County. Only about one in ten live in the San Fernando Valley. Unlike older folks with HIV almost half of “youth” with HIV are female (this is really scary when you think about it.) So most of my friends (at least people my age that I see in my youth groups) are people of color. We really don’t match the general population in terms of ethnicity. Most youth with HIV are Latino (about 45%) or African American (40 percent); only about three percent are Asian. More than half of us are gay. This is pretty similar to overall group of people living with HIV and AIDS. Most of us are young and single although about 18 percent have partners. Like most “youth” we don’t have good steady jobs or equity in a nice house. In fact, for the most part it’s pretty pathetic. Almost one in three of us have no income at all (and it’s not


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because we’re too young to work.) No funds coming in means we are just living the best way we can. But what do you expect when all most one in five haven’t finished high school (not that that diploma really gets you enough to live on). But for every youth I know that didn’t graduate, I know another that did. And out of every five that did graduate, three actually did do some college level work. Like many I’m putting in my time at the local community college. I’ve got a friend that is on his way to grad school. For me, if things work out, I’ll transfer to a four-year college soon. I think many of us know that you need to get an education or else you’re doomed. But some of us are so messed up or are just trying to deal with the next day, the next week, that a future really isn’t a real thing for us. The income structure for “youth” seems to be one of extremes. Along with the 25 percent of us with no income, two-thirds make $25,000 or less. Still there’s the group that make as much as $34,000. When you’re young and don’t have kids (some of the young women do), $34,000 is okay even in LA. Most if not all of us are eligible for HIV CARE services (translation – we make less than three times the poverty level). I know some younger folks that have been in jail, mostly for drugs but sometimes for theft and other crimes. It’s tough for kids especially those under 18. A lot of times the young ones (13, 14, 15,) end up in the situation where they have to care for themselves but legally can’t make decisions or sign papers without getting emancipated. I know because I’m not from LA. I came here when I was 13 from Nevada. I spent some time on the streets, got infected, did some drugs and then got cleaned up, got emancipated and pulled my life together a little better than it had been. (Didn’t I make that sound easy? It’s not; it was hell and it still is. But I can see a little further down the road now.) When you don’t have parents in the state (not that you would call them up if they did) and there’s no one to take care of you or to speak up for you, you end up in Juvie for any little thing you do. Sometimes I don’t think it’s because they think it’s where you belong, sometimes I think they just don’t know what else to do with us. I mean, foster parents don’t want teenagers and generally teens don’t want their own parents or anyone else trying to act the part. So you end up in Juvie and then if you don’t straighten up you get a record that sticks (get charged and convicted as an adult). About one in five “youth” I know spent some time in the CYA (Cal Youth Authority) or adult correction system. Given our lack of income, education and just about everything else, it’s no surprise that four out of ten of us have no health insurance. When we do have coverage it’s generally through Medical (about 44 percent) and Medicare (38 percent). If you do get a job or live with your parents (fat chance) you might have private insurance. Most “youth” haven’t had HIV very long. About one in five of us have had HIV for about a year. Another two in five have had HIV between one and three years. Occasionally you meet


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some of the older “youth” that have had HIV or AIDS more than 8 years (but that’s really unusual). Most of us are in pretty good health – about three-quarters don’t have any symptoms yet. That’s really good, but it makes denial more lingering. You can play games with yourself, “tests can be wrong, false-positives…” and all that. Then if you’re in denial, you might not be responsible (being safe for the next person). Because so many of us haven’t been infected that long, the majority don’t use any medication. Only about 45 percent of us are on medication and about half are tolerating it pretty well and not having side effects. Only about a third say that they have some side effects that bother them a little. Less than one in five that are on medication say they really have bad side effect. Even though you may hear that a lot of kids use drugs, I’ve yet to know any anyone with HIV that thinks they got it because they were using needles. I know that about one in ten “youth” inject something, but I think they have access to clean needles even though the system makes it really difficult for you. About ten percent do some crack and another ten percent do cocaine. Among all youth, about one in five have used cocaine, crystal meth, speed or uppers; and about ten percent use poppers and ecstasy and marijuana. The things that we don’t talk about is the impact of drugs on HIV (bad for your body, screws with your immune system) and bad on your mind. I mean we’re still having sex. And I still haven’t figured out how to make safer sex automatic, so if I’m loaded and horny, chances are sex isn’t going to be safe. So I don’t do drugs…. not when I’m going to party; I know what can happen. So about services… We need what everyone else needs, but we need it to be sensitive to us. We’re 24 at best and sometimes as young as 13. You can’t treat us all like adults; it’s not fair. It’s like we come in for services, and get this big run around. It hasn’t happened to me in a while but I remember what it was like, “Hey do you have a parent… guardian someone that can sign this permission form for you. Oh, well uh, let me get my supervisor…” And don’t even try to go into an emergency room or apply for housing or funding. You can’t even get in some shelters unless you lie about your age. If you’re messed up and really ready to get clean, try to find help without getting involved in some type of government system. Actually if you are a homeless, sick strung out kid, under the age of 18, the fastest way to get help is to shoplift enough stuff so that they just don’t rough you up and throw you out. Stash enough in your pockets so they call the police and so that the police take you in. What do we need? Somebody to realize that some of us are on our own and that we are people too. We need guidance, but respectful guidance and care. More like mentoring instead of taking care of us. Chronically Mentally Ill I was 45 last year; I spent my birthday in a psych ward under observation because I just couldn’t go on. I have a lot of trouble getting on with my life, the days seem to melt into one another and I just can’t cope sometimes. For a while I’m fine, I go to work and clean my apartment just like everyone else. But then there are times when the whole world turns against me and I can’t fight the tide. It was during one of those times when I think I got HIV, one of those dark times when I didn’t care if I lived or died.


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I’ve seen the inside of a lot of psych units and offices, the longest for six months. I always seem to get myself together after a while. I’m back living with my mother now; she takes me in sometimes when I’ve lost a job, when I can’t take care of everything on my own. My mother takes care of my daughter when she visits in the summer. She’s 12 now and her visits are less frequent. Her dad took her when she was three. Given the HIV it’s better this way. I don’t want her to see me when I’m sick or when I’m not thinking straight. I don’t have a check to help my mom with the bills right now. Because I was working for a while last year I don’t have my Medical or disability, but I’m working on it now. Even with the HIV I’ve been pretty healthy. I’ve had HIV for about ten years; during a particularly deep spiral. I left home for a couple of months, lost track of time and who I was. I wound up in a psych unit eight months later, pregnant and with HIV. I’m still not too sure where I was for all that time. The important thing is that I found my way back. I found out because they tested me when I got pregnant the second time. I think I stay healthy because my mom really takes care of me. She forces me to eat, even when I don’t want to. She makes sure I eat the right food and take my medicine when I’m supposed to. She nags me about my appointments and makes sure I get enough rest. I always thought I was supposed to take care of my mother but now she’s taking care of me. It makes me feel helpless and sad and dark. I take my medication most of the time because my mom reminds me. I know when she’s not around I forget. When I was living on my own it got to be too much for me. I’d get confused and end up with a bunch of medicine left at the end of the week. I seem to keep a yeast infection. Otherwise I’m pretty healthy, somehow I escaped hepatitis and most of the other STDs. (Okay, I think I did. I might have gotten tested and treated during one of those times when I was in that deep dark hole I can’t see out of.) I smoke too much and drink sometimes, but mom doesn’t keep alcohol in the house (not since dad died) and I can’t smoke in the house. In terms of services, I don’t need much other than medical, dental case management and mental health services, transportation sometimes. When I was on my own I needed everything – housing, food, the basics. Right now group therapy is working well. Especially since the group is folks that all have HIV. Groups with folks without HIV don’t really help much, they aren’t coming from the same space and they don’t have the same nightmares. It would be good to get more individual 1-on-1 help, but it’s hard to come by. I’m open to more mental health services, but a lot of times the problem is that the psychiatrists don’t seem to want to help you; they just want to prescribe you drugs. Every time you go in and say the anti-depressants aren't working they say, “Don’t give up on it, let's increase the dosage”. Then I get into a fog and before I know it I’m back inside again. What makes it hard to get services? Going through all the paperwork all the time, over and over. Finding people that will take the time to listen to me, treat me like an individual instead of a number. When I’m having problems I barely know my name or address, it gets lost in the dark with all the other information that I need like my social security number or why I walked in the door in the first place. Sometimes I think maybe it’s not safe to give the person asking the questions all that personal information but they won’t tell me why they need it or what they’re


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going to do with it. Then it’s really hard to complete the paperwork and I tell them I have to go and I’ll finish some other time. I think my state of mind is my biggest problem getting and using services. Luckily when I’m not having problems I do pretty well and the people at the clinic get to know me.


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EXECUTIVE SUMMARY Positive Outcomes with Some Cautions Los Angeles County receives high marks for its continuum of HIV/AIDS care. Medical care is available to those who seek it, and overall mortality and morbidity of PLWH/A continue to decline. Large disparities in mortality between ethnic communities have been significantly reduced but not eliminated. One reason for continued disparities is that communities of color enter the care system later in the disease progression. Improved access to early intervention services, and the referral links between HCT and care should improve this outcome further. Regarding morbidity, PCP rates continue to decline, with the most dramatic decrease among African Americans. However, African Americans are still significantly more likely to be diagnosed with PCP than other ethnic communities. The number of new AIDS cases continues to drop, but the pattern is not consistent and ranges from a slight increase in 2002 to nearly a 20% decline in new AIDS cases in 2003. Clearly some variation is due to reporting lag, but given the effectiveness of the medication, there is room for improvement in keeping HIV from progressing to AIDS. Additional epidemiological research might be done to better understand the factors leading to the progression to AIDS. One area for improvement is increasing the number of PLWH on medication. Where nearly 90% of PLWA are on antiretrovirals, 60% of the PLWH who are symptomatic report taking antiretrovirals. Another areas is adherence, where 50% of PLWH/A say they have skipped talking their medication. Those most likely to skip are African Americans, and there is a strong relationship between drug use and poor adherence. When asked why they forget to take their medication, the majority of PLWH/A say they forget, suggesting the need for adopting a better method of reminders. Other reasons are “didn’t what to take them” and “side effects”. These suggest a need for demonstrating the positive impact of medication and better side effect management -- in short, more personal attention to these issues at the clinics and by case managers. Confirming the drop in morbidity, the majority of PLWH/A say their current physical and emotional health are good to excellent. As expected PLWA are much more likely to report fair or poor physical and emotional health, but still only about 15% of PLWA say their physical or emotional health is poor. Regardless of stage of infection, the majority of PLWH/A say that their physical and emotional health is better now than when they found out they were infected. Of all stages of infection the symptomatic PLWH appear to be having a worse time, particularly with their emotional health. This, and other data, suggests a need for mental health counseling among those symptomatic HIV persons who are at risk of progressing to AIDS.


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Changing Profile of the HIV/AIDS Epidemic More Service with Fewer Resources The number of PLWH/A continues to increase, and they enter the Continuum of HIV/AIDS Care poor, or become poor, as they spend down their resources. The number of PLWA in Los Angeles County has grown from 14,811 in 1997, to 19,752 in June 2004. As more individuals become infected with HIV and fewer infected progress to AIDS, the number of PLWH will increase. As of June 2004 there are an estimated 57,654 PLWH/A, up over 5,000 cases from 2002. At the same time the Ryan White CARE Act funds have decreased from $42 million in 2003 to about $36.6 million in 2004. According to the client tracking system, of those who know their status, nearly 22,500 or about 52% of PLWH/A receive some CARE Act funded service, of which about 15,700 (36%) receive medical outpatient care provided by CARE Act funded providers. As estimated, 53% - 60% of PLWH/A would be eligible for outpatient care paid for non CARE Act sources like Medi-Cal, Medicare, or the Veteran Administration. Consequently, the number being served is about the expected proportion. According to the Financial Needs Assessment there may be room for additional Medi-Cal or Medicaid coverage, and, at the same time, according to the unmet need estimate, there are those eligible who are not being served. Unmet Need Based on a methodology accepted statewide, there are an estimated 15,185, or about 35% of PLWH/A who are aware of their status and have not received medical care for a year or more. The protocols linking HCT to Care will help bring those who test positive but don’t seek care into care. A challenge for the care system will continue to be improved tracking those in the care system who drop out and encourage them to continue in care. Profile of PLWH/A The biggest shift in the profile of PLWA in the last 7 years is that Hispanics have overtaken Anglos and now present a plurality of PLWA. The risk group and gender proportions have remained roughly the same. However, although exact figures cannot be calculated because HIV reporting that started in 2002 is not yet considered generalizable, the disproportionate impact of HIV in the African American and Latino communities is clear. While nearly 10% more Anglos are living with AIDS than HIV, nearly 4% more Latinos and African Americans are living with HIV than AIDS.


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In 2002 the Comprehensive Plan noted, “Los Angeles County is witness to many different HIV epidemics divided by age, race, and lifestyle.” The Plan identified a number of epidemics that can be identified and they are updated below in this Plan: 1. A mature epidemic represented by Anglos and MSM, and those IDUs who were

infected early in the epidemic and have survived. 2. Those more recently infected represented disproportionately among communities of

color. Latinos represent the largest numbers, but African Americans with just under 10% of the population represent nearly 22% of the PLWA and over a quarter of PLWH.

3. A growing epidemic among young gay men, particularly young gay men of color and “party drug users” who engage in high risk behavior for both disease progression and transmitting HIV to others.

4. A hidden epidemic among the undocumented, which are most likely to be undercounted due to significant barriers to care including lack of knowledge, fear of being reported, and discrimination within their own community.

5. The transgender population which has a much higher infection rate than other populations and are more likely to be diagnosed with AIDS.

6. The American Indian population, who make up a very small segment of the overall population, but are disproportionately impacted by HIV.

Greater efficiency and effectiveness of care services can be achieved by targeting services among these different populations. That is, developing models of service delivery for the different population segments noted above. For example if outpatient care and case management were based on a system wide acuity service model, then those who are stable and have less demand for services would be allocated fewer units of care, while those with multiple co-morbidities and health care needs would be allocated a wider range of CARE Act funded services. For wrap around services, the care system has made progress in targeting high-need low demand services such as child care to those most in need. On a service by service basis the Commission and OAPP should continue to develop protocols for services such as dental care and transportation that target those most in need. To target these populations successfully across all SPAs require the SPNs understand their populations and work together to identify underserved populations. Knowledge can lead to more realistic expectation for services among PLWH/A. It is a challenge for the Commission and OAPP to explain their rationale for service allocations and the Continuum of Care to PLWH/A. For example, the needs assessment demonstrates that PLWH/A continue to have very high expectation for food and housing services, but within the context of all services, CARE Act funds cannot be expected to fulfill many of these basic needs. While the Commission is doing an excellent job in involving different populations into the planning process, conveying their rationale to both providers and PLWH/A remain a priority.


© PCH and County of Los Angeles December 2004 xxviii

Service Needs Based on data collected from 732 PLWH/A who participated in the HIV/AIDS Care Assessment Project (H-CAP) survey and focus groups, Figure 1 below shows the top needs as well as the awareness, demand, utilization, and satisfaction for each of the top services. The highlights of the graph indicate: • The most needed service in 2004 is outpatient medical care, the same as in 2002. In

2004 about 95% of PLWH/A said they needed outpatient medical care in the past year.

• The second and third most needed service in 2004 is dental care and psychosocial case management, both 77%. Dental care remains the second rank need followed by psychosocial case management which is up from fourth in 2002.

• Bus passes were the fourth ranked service in 2004. In 2002 bus passes were not ranked, but taxi vouchers were ranked as the fifth most important service. Notably when more transportation options were presented to the consumer in 2004, taxi vouchers were ranked significantly lower, while bus passes were among the top five most needed services.

• Food pantry, part of the removal of barriers cluster, ranked fifth, with 69% of PLWH/A saying they needed the service in the past year.

• Nutritional education stayed in the top ten most needed services in 2004 with just under 64% reporting a need for nutrition services in the past year.

• There was a greater reported need for medication reimbursement in 2004 than 2002. In 2004, 63% of PLWH/A said they needed medical reimbursement in the last year and it was ranked as the 8th most needed service. In 2002 53% said they needed it in the past year and it was ranked 11th.

• Within the primary health care core, over 50% of the participants also said they needed individual mental health counseling, visits to medical specialists, and prevention information from the primary care giver.

• In addition to the 4th ranked need for bus passes and 5th ranked need for food pantry, other services needed by over 50% of the participants in the ‘removal of barriers’ cluster were independent housing and food vouchers.

• Consumers reported a greater need for psychosocial case management than medical case management. Still, over 56% of the participants reported needing medical case management in the last year.

• None of the services in the “economic well being” cluster or the “enhancement service” were rated among the top twelve needs of the participants. There appeared to be a significant decrease in perceived need for peer counseling in 2004 (44%) compared to 2002 (54%), although this may be attributable to the different sampling strategies used in the needs assessments.

• Substance abuse services were reportedly needed the least by the participants. Given the relatively low percentage of IDUs in the population of PLWH/A (14%, including MSM/IDUs), this is not surprising. However, as seen in the later subgroup analysis, even among drug users, the relative demand for substance abuse programs is low.


© PCH and County of Los Angeles December 2004 xxix

Figure 1 Service Needs

Primary Health Care Core

0%

20%

40%

60%

80%

100%

%

PLW

H/A

PLWH/A

95.1%

77.6%

63.9%

63.2%

58.7%

57.9%

54.5%

39.3%

35.7%

35.3%

23.3%

18.2%

17.6%

14.0%

11.4%

10.9%

6.4%

Outpt med

Dental

Nutri ed

Med reim

b Ind MH

Med spec

Prev@ Dr

. HERR

Ad- here

Grp MH

Home hlth

Fam cnslin

g

Res MH

Out SAT

Res SAT

Hos- pice

Detox/ Meth

4 5 7 9

3

12

1

2

6 8 10 110


© PCH and County of Los Angeles December 2004 xxx

There are significant differences by subpopulations and these differences are fully discussed in the Plan. Differences tended to be defined by socio-economic status, drug use behavior, and cultural beliefs. All PLWH/A place outpatient care at the top of their lists, with case management and dental care also among the top needs. MSM have a much greater focus on services in the primary health care core. Poorer PLWH/A -- defined by gender, ethnicity or risk group, like women, African Americans, and IDUs– report a greater need for transportation, food, and housing. Prevention is reported as a much higher need among women and Hispanics. Substance users, both IDU and IDU/MSM tended to have a greater need for mental health services particularly individual counseling. There are, however, important differences I the needs of different populations. As shown in the table below, when the top differences between MSM/IDU, IDU, and heterosexuals are listed, there are some overlapping services, but each group is defined by their particular needs. SUBPOPULATION DIFFERENCES MSM/IDU IDU HETEROSEXUAL

Outpatient substance abuse treatment √ Individual mental health counseling √

Workforce reentry √ Residential substance abuse treatment √ √

Detox / Methadone √ √ Buddy √

Bus Token √ Non-housing emergency financial

assistance √

Transitional housing √ Group housing √

Spiritual counseling √ Housing information √

Treatment adherence √ √ Taxi voucher √

Prevention at doctor’s office √ Child care √

Translation √ Prevention education √

Service Gaps The most important service gap measured was the difference between asking and receiving a service. A significant “ask-receive” gap is an indicator that the system is not fulfilling the expectation of the PLWH/A. In some instances, like emergency financial assistance for rent and utilities and food vouchers, the expectation is unrealistic because CARE Act funds are not allocated. In others, like nutritional supplements and dental care, some adjustments can be made in the service delivery or allocation to better meet the needs of PLWH/A. Notably for some services such as prevention and outpatient medical care, participants in H-CAP report receiving more services than they asked for. This relates back to the earlier comment that not all persons may need the level of services that the system mandates. The gaps are shown in Figure 2 below.


© PCH and County of Los Angeles December 2004 xxxi

Figure 2: Ask-Receive Gap

Barriers to Receiving Services PLWH/A reported individual, structural, and organizational barriers. As shown in Figure 3, over 50% of PLWH/A say that they didn’t knowing what treatment was available and 46% say that their awareness of the location of service was a problem. For those mentioning these barriers they were moderately high. Fewer persons had structural barriers, but for those with them, they tended to be higher. Between 30% and 40% of PLWH/A said that ability to pay, expressed in terms of insurance or affordability, was a problem. However, for those with a problem it was a big problem. Interestingly, relatively few PLWH/A (29%) said transportation was a problem, and for those mentioning it, it was a moderate level barrier that did not rank among their top barriers. Organizational barriers were ranked relatively low by PLWH/A. However, for the relatively small percent who claimed feeling like a number (14%) or discrimination (6%) was a problem, it was a big problem for them. The following chart displays the percentage of those indicating structural, organizational, and individual barriers and the magnitude of those barriers among those who named them.

-25%

-20%

-15%

-10%

-5%

0%

5%

10%

15%

20%

Ind hsing

EFA rnt/util Rent asst

Food Vchr

Hsing info

Dental

Nutri sppl

Legal

Taxi Vchr

Wrkfce entry

Hme Dlvd mls

Food pantry

Nutri ed

Med CM

HERR

Outpt med care

Prev@Dr.

Primary Health Care COre Removal of Barriers

Unfunded by RWCA Title I

Patient Care Coordination

Economic Well-being

KEY


© PCH and County of Los Angeles December 2004 xxxii

Figure 3: Structural, Organizational, and Individual Barriers to Receiving Services


© PCH and County of Los Angeles December 2004 xxxiii

Vision of the Commission The shared vision of the Commission remains constant: There will be 100% access to health care with 0% disparities among the populations infected and affected by HIV and AIDS. This will be accomplished through: • Multiple points of entry for clients to gain access to services with an expectation that,

regardless of entry point, the client will be assessed for need of primary health care core services and referred to needed resources in a timely manner.

• Improved integration, coordination, collaboration, and outreach between and among all care and prevention service providers in both urban and rural areas of Los Angeles County.

• Maximizing Ryan White CARE Act funds through uniform intake and eligibility screening processes and the subsequent coordination of care for PLWH/A that maximizes non-emergency funds for providing quality and sustained HIV/AIDS care.

• Reducing barriers to care, therein empowering PLWH/A to seek and access HIV/AIDS prevention and care services without impediment of structural, language, literacy and/or cultural disparities.

Goals To achieve this vision in 2002 the Comprehensive Plan established a number of goals and objectives. Substantial progress has been made on several, as shown in the table below and detailed in the full Plan. Table 1: Progress on 2002 Goals

2002 Comprehensive Care Goals Accomplishments 1. Within the next three years there is a

commitment by the Office of AIDS Programs and Policy (OAPP), the Commission on HIV Health Services (CHHS), and the Prevention Planning Committee (PPC) to move toward an integrated prevention and care services continuum of service, and using a web-enabled data collection and tracking system to support that effort.

After considerable discussion, the merging of the Commission and CPG was decided against. However, there have been a number of initiatives to better integrate prevention and care including: 1) tracking of the newly diagnosed, 2) OAPP contracts include compensation for the costs of linked referral, and 3) the data provided by HIV Epi for behavioral risk groups (BRG’s) is coordinated with the epi data use for care. These are discussed in greater detail below.

2. HIV reporting and the active follow-up of those testing HIV positive is likely to significantly reduce the number of PLWH who are not in care and allow better coordinated care for individuals in the system.

Tracking newly diagnosed will be achieved through the implementation of the HIV/AIDS Interface Technology System (HITS) which has been in development since 2002. When implemented it will provide newly diagnosed PLWH with direct access and entry into medical outpatient care at the HIV counseling and testing (HCT) entry point.


© PCH and County of Los Angeles December 2004 xxxiv

2002 Comprehensive Care Goals Accomplishments 3. With the implementation of HIV reporting

statewide, the Los Angeles County’s HIV Epidemiology Program will be able to more accurately track and describe the epidemic. Once a person tested HIV positive, a system will be implemented to encourage those in care to seek care and stay in care.

HIV reporting was implemented in California in July 2002, and HIV data can be considered reliable and complete no earlier than July 2005.

4. Further development and implementation of standards of care, quality assurance, outcomes and indicators for services will increasingly play an integral role in the monitoring process.

Continuous quality improvement processes will be implemented to ensure ongoing updates to standards, outcomes and indicators and to achieve best practices in HIV service delivery.

5. The Commission will separate from OAPP oversight, and, in so doing, will engage its own professional support staff to carry out its responsibilities.

The move of the Commission from OAPP in the Department of Health Services to the Board of Supervisors was achieved in 2004. The new Executive Director and professional staff of the Commission bring a dedicated level of service to the volunteer Commissioners.

6. The Commission will undertake a more comprehensive ongoing needs assessment process by adopting a continuous data collection model that utilizes ongoing data collection tools, as well as specialized needs assessment studies where data is lacking and further research needed.

The Commission has implemented the HIV/AIDS Care Assessment Project (H-CAP) that provides input from PLWH/A into the planning process.

7. Service planning will be done at the SPA and potentially at the sub-SPA neighborhood level in order to reflect the different needs of communities throughout Los Angeles County. Service Provider Networks (SPN)–--and the Coordinated Prevention Networks (CPNs) (as described in the Prevention HIV Prevention Cooperative Agreement for 2002) will lead these efforts with support from OAPP and the Commission.

The SPNs have been initiated in each of the 8 SPAs. The SPNs bring together many service providers, both Ryan White CARE Act funded and not, within the SPA to promote collaboration networking and partnership in HIV service delivery.

Goals for 2005-2008 For the next three years the Plan highlights a set of fifteen different goals, and establishes tasks to accomplish them and tools to monitor their progress. They are divided by those relating to service delivery, those related to planning, and those promoting the infrastructure needed to improve the Continuum of HIV/AIDS Care. The fifteen goals are shown below and the specific objectives and timetable for their completion is shown in the full Plan.


© PCH and County of Los Angeles December 2004 xxxv

Table 2: 2005-2008 Goals

SERVICE DELIVERY GOALS 1. Disseminating the Continuum of Care to PLWH/A and consumers to increase

knowledge about the prioritization of services and their availability. 2. Assuring Access to Early Intervention Services 3. By 2006 Providers will use a Standard Intake Form and procedure 4. Confronting discrimination and encouraging public support 5. Secure services in accordance with the continuum of care and its five priority areas. 6. Standards and outcomes will be established for every service category and written

into contract language by OAPP. 7. By 2007 unit costs and cost reimbursement will be in place for all CARE funded

services. 8. The Commission will establish benchmarks for the Administrative Mechanism. PLANNING GOALS 9. Develop a Los Angeles County Continuum of HIV Services that will incorporate

care and prevention services to allow a seamless integration of detection, early intervention, and sustained care.

10. Epidemiological, consumer, and patient data will be used to plan for the best combination of services and used to allocate funds to services.

11. Targeted population planning and use of targeted funds 12. Data for Decision Making INFRASTRUCTURE GOALS 13. Shared information on clients to reduce red tape, facilitate access to services,

determine eligibility, and the health status of patients. 14. Identify alternate sources of funding to enhance local HIV service delivery

systems. 15. Improving Consumer Satisfaction

Last Word In 2004, over 20 years into the epidemic, some born with HIV are now adolescents and the vast majority of people living with AIDS are middle age, and many are in their 50’s. Latinos make the plurality of those living with HIV and AIDS. African Americans are disproportionately infected, and MSM continue to represent over three-quarters of those infected with HIV and AIDS. While the spotlight is often on younger PLWH/A, and the rates of infection among young gay men are disturbingly high, the vast majority of those needing and seeking care are older. As mortality continues to decline and people are living with AIDS for fifteen or more years, one challenge is how to best coordinate the general health care needs of PLWH/A with their


© PCH and County of Los Angeles December 2004 xxxvi

HIV/AIDS service needs. Among long term survivors understanding and treating the side-effects of toxic medication regimens will add to the complexity of treating HIV infection. Organizationally there has been a greater emphasis on planning and establishing uniform standards of HIV and AIDS care. This was facilitated by the move of the Commission to the Board of Supervisors from the Department of Health Service’s Office of AIDS Programs and Policy (OAPP). A primary objective of the Commission has been to include PLWH/A in the planning process and the HIV/AIDS Care Assessment Project (H-CAP), started in 2003 by the Commission, systematically collects and analyzes care needs, gaps, and barrier information from PLWH/A. The Commission has also implemented a more rigorous and formal priorities and planning process. For the grantee, this past year and upcoming year will show the results of re-bidding the services offered in the continuum of care, thus starting with new contracts for services among those with past experience and some new providers. Over the next few years the system will move to cost reimbursement based on uniform unit costs. While each of these changes promise improved services for PLWH/A through more rigorous standards and quality management, the system will be absorbing these changes over the next few years. They will require more sophisticated systems, close collaboration of the partners in the administrative mechanism, and clear understanding of the continuum among PLWH/A and providers. Past experience demonstrates that bringing new systems into the process is difficult and challenging. This Plan recognizes that HIV/AIDS is likely to be with us for many more years. Los Angeles has handled the crisis with great success. Now the challenge will be to incorporate HIV/AIDS care into the overall health care system as it becomes a chronic disease that needs long term and expensive management with increasingly limited resources.


© PCH and County of Los Angeles December 2004 xxxvii

INTRODUCTION This update of the 2002 County of Los Angeles HIV/AIDS Comprehensive Care Plan is a major revision. Epidemiologic estimates have been updated through June 2004. Consumer service needs, gaps, and barriers reflect data collected from spring through winter 2004. A new leading section, “The Face of AIDS” presents composites of nine key subpopulations based on much of the information in the Plan. In 2004, over 20 years into the epidemic, some born with HIV are now adolescents and the vast majority of people living with AIDS are middle age, and many are in their 50’s. The number of Latinos moving to the LA area continues to grow and now represent 46% of the population, and the HIV epidemic continues to shift more to the Latino and African American communities. Of the estimated 43,454 people living with HIV and AIDS (PLWH/A) who are aware of their infection, 40% are Latino, 32% are Anglo, and 24% are African Americans. African Americans who represents are 9.5% of the population have a much higher rate of HIV infection and AIDS than any other ethnic community. While the spotlight is often on younger PLWH/A, and the rates of infection among young gay men are disturbingly high, the vast majority of those needing and seeking care are older. As mortality continues to decline and people are living with AIDS for ten or more years, one challenge is how to best coordination the general health care needs of PLWH/A with their HIV/AIDS service needs. Among long term survivors understanding and treating the side-effects of toxic medication regimens will add to the complexity of treating HIV infection. Organizationally there has been a greater emphasis on planning and establishing uniform standards of HIV and AIDS care. This was facilitated by the move of the Commission on HIV Health Care Services (Commission) to the Board of Supervisors from the Department of Health Service’s Office of AIDS Programs and Policy (OAPP). A primary objective of the Commission is to include PLWH/A in the planning process and the HIV/AIDS Care Assessment Project (H-CAP), started in 2003 by the Commission, which systematically collects and analyzes care needs, gaps, and barrier information from PLWH/A. The past two years has not seen major advances in curing AIDS. Medications to control the virus have steadily advanced, making managing HIV easier and more effective. But no cure has been discovered, and the cost of an effective medical regimen continues to be high. While the number of PLWH/A continues to increase, The Health Resources and Services Administration (HRSA), the federal agency that administers the Ryan White CARE Act, has decreased the 2004 funding level from about $42 million to $39 million. At the same time a sluggish economy has made it more difficult for community based care providers to raise contributions. In short, there is a growing demand for CARE Act funded HIV and AIDS care services, as mortality continues to decline and the number of PLWH/A without insurance increases. If this challenge is to be met, it is critical to have a planning process that identifies and prioritizes the care needs, maximizes the use of funding sources other than CARE Act funds, and provides clear standards for quality care.


© PCH and County of Los Angeles December 2004 xxxviii

In 2002, The Los Angeles County HIV/AIDS Comprehensive Care Plan (Plan) presented a road map of the County’s response to HIV/AIDS epidemic. This updated plan continues to describe the journey made by the Commission and its partners to address the service needs of PLWH/A, while presenting future routes for meeting its mission of: • Decreasing HIV/AIDS mortality and morbidity. • Improving the quality and availability of comprehensive HIV/AIDS-related services to needy

individuals and families. • Collaborating with other HIV/AIDS services organizations to assess and identify emerging

HIV/AIDS services delivery needs. • Facilitating a coordinated and community-based viable regional voice for HIV-impacted

populations. How the Plan is Organized The first section of this Plan reviews the history of the HIV/AIDS epidemic in Los Angeles County (LAC). This section: • Reviews the overall context of the Plan by describing the vision and values of the

Commission, and its continuum of HIV/AIDS care. • Provides an overview of economic, social and health indicators in the LA EMA and its

Service Planning Area (SPAs).1 • Summarizes the epidemiology of the HIV/AIDS epidemic in Los Angeles County and

highlights the diverse linguistic and cultural heritages of the various populations affected by the epidemic, including composites of PLWH/A in each Service Planning Area (SPA). The epidemiology focuses on people living with HIV/AIDS, as this will be the population that must be served by the continuum of HIV/AIDS care. This section has been updated to include PLWH/A through June 2004.

• Estimates the number of PLWH/A who are not in care. • Profiles the new infections and discusses trends in the epidemic. • Describes HIV within a larger fabric of community needs, and discusses how the co-

morbidities of drug use, homelessness, STDs, mental illness, and poverty intersect and affect the HIV/AIDS service needs of PLWH/A.

• Summarizes the needs, unmet needs, service gaps, barriers, and disparities to services confronting PLWH/A based on a 2004 needs assessment survey, focus groups and supporting data from a variety of empirical studies and economic analyses. The needs of different ethnic and risk group subpopulations are presented, highlighting the needs and barriers of the nine target populations2.

• Reviews the services available for PLWH/A in Los Angeles County. • Provides a service provider profile indicating locations and current utilization of services. 1 The County of Los Angeles is divided into eight Service Planning Areas (SPAs) that are used for health planning purpose. They are discussed throughout the report. This section is not updated from 2002. 2 1) Men of Color who have sex with men, 2) Recently Incarcerated, 3) Undocumented, 4) MSM, 5) Latino/as or Hispanics, 6) Severely Mentally Ill, 7) Women of Child bearing age (18-49), 8) Homeless, 9) Youth (18-24)


© PCH and County of Los Angeles December 2004 xxxix

The second section details the route to be traveled to reach the Commission’s goals and objectives for HIV/AIDS services in Los Angeles County. This section: • Summarizes the strategic planning process undertaken by the EMA’s Core Planning Partners

[the Commission, the Office of AIDS Programs and Policy (OAPP), and the Select Committee on Prevention Planning (PPC)].

• Outlines core competencies and weaknesses of the care services system. • Delineates the HIV/AIDS service system’s primary goals and objectives for the next three

years. • Proposes how Ryan White CARE Act funds can fill critical gaps in the continuum of care or

be used to build bridges to existing services that may meet complementary needs of PLWH/A--such as substance abuse or housing--which need to be more sensitive to the specific needs of PLWH/A.

• Recommends budget priorities and allocations for key services, as well as for systemic program support and planning council (Commission) support.

The final section discusses how the Commission and OAPP will monitor the progress and outcomes of the Comprehensive Care Plan. For each objective, mechanisms to monitor the process and measure outcomes are discussed. As work continues on the Plan, data sources and indicators will be developed, benchmarks noted where data is available, and if not available, data that is needed for benchmarks and subsequent measurements of progress will be identified. Both quantitative and qualitative measures are discussed. Methodology HIV/AIDS Care Assessment Project: Questionnaire and Focus Groups (H-CAP) This updated Plan reflects a significant improvement in the methodology used to collect data on the service needs, barriers, and gaps of PLWH/A. The primary source of the needs data in 2002 were 30 community forums where 308 PLWH/A participated in interviews and/or focus discussion sessions. A needs assessment survey was completed by 246 PLWH/A who were recruited by their providers or heard about the forums through leaflets or other advertisements. The community forums were held in each service planning area (SPA), with twenty-one out of twenty-six forums done in April 2002. Five other forums were completed from May through July 2002. The constraints in 2002 was the unknown representativeness of the sample, the small time frame for interviewing, and the small sample size. In 2003, these constraints were addressed. The Commission and OAPP worked together to establish the HIV/AIDS Care Assessment Project (H-CAP), a continuous data collection process where a proposed 825 PLWH/A are randomly recruited and surveyed based on a stratified sampling plan and interviewed throughout the year. Each year the survey is supplemented by eight to ten focus groups on special subjects. H-CAP measures the care needs and barriers of participants, and updates their demographic profile, incidence of co-morbidities (such as substance use, homelessness, STDs, and mental illness), and measures their physical and


© PCH and County of Los Angeles December 2004 xl

emotional health. H-CAP is a multi-year needs assessment where participants are re-interviewed each year. Those who withdraw from the sample are replaced by new participants. The longitudinal design allows for the analysis of trends at an aggregate and individual level. Providers are the primary source of recruitment for survey participants because laws restrict direct access to personal information about PLWH/A and providers have established a rapport with their clients which facilitates recruitment. H-CAP establishes a protocol for providers to randomly sample clients to limit sampling bias. Provider recruitment is supplemented by direct outreach efforts for out-of-care and difficult to reach populations. H-CAP planning and discussion began in August 2003. The IRB applications for the two components of H-CAP, Questionnaires (H-CAP:Q) and Focus Groups (H-CAP:FG), were submitted to the Department of Health IRB in December 2003 and February 2004, respectively. H-CAP:Q was given final approval in April 2004 and H-CAP: FG was exempted from review. Due to a lengthy IRB process and difficulties in establishing recruiting procedures during the start-up, 732 PWLH/A were interviewed in 2004 rather than the expected 825. Sampling PLWH/A are recruited based on a stratified random sample plan shown in Table 1-1. All respondents must be HIV positive and over 18 years of age. The stratification is based on a matrix which includes ethnicity, risk group, and gender. It also includes special need populations. Most special need populations are accounted for “by chance” when participants are recruited using the stratified random sampling protocol, but certain populations such as out-of-care, youth, and Native American participants are separately recruited. A stratified random sample is used to assure that different populations have sufficient sample size for analysis. Consequently women-of-childbearing age, heterosexuals, IDU, youth, Native American, transgender, and undocumented clients are over-sampled relative to their proportion in the population of PLWH/A. While they are weighted back to their population proportion in the analysis of all PLWH/A, this sampling strategy allows more accurate subpopulation analysis.


© PCH and County of Los Angeles December 2004 xli

Table 1-1 Sample Quotas by Ethnicity and Gender Anglo Af Am Latino API Other/Mixed

Male Female Male Female Male Female Male Female Male Female TOTAL MSM* 50 NA 50 NA 70 NA 35 NA 10 NA 215

MSM/IDU 40 NA 20 NA 30 NA 10 NA 0 NA 100 IDU 30 25 50 45 20 25 10 5 0 0 210

Heterosexual* 30 45 30 50 30 45 5 5 5 5 250 TOTAL 150 70 150 95 150 70 60 10 15 5 775

Special populations Transgender To be recruited separately 25

Native American To be recruited separately 25 Special pops below this line are included in above sample

Youth (18-24) Will recruit specifically for youth within populations above 40 Non Injection Drug Users (IDU) Estimate of at least 50% of sample 462

MSM of Color (MSMC) Included above in African-American, Latino, and API MSM. 165 MSM and Women (bisexual/ MSMW) Estimate from HIV Epi at 7.5% of PLWH/A. 60

Women of Childbearing Age (WOCBA) Estimated 90% of all women 225 Seriously Mentally Ill (SMI)* Estimated at more than 20% of recruited pop. 160

Recently Incarcerated (w/in past 2 yrs) Estimated at least 25% of sample 200

Undocumented Will recruit specifically for undocumented within populations above 30

Homeless / unstable housing Estimated about 15% of recruited population. 120 Out-of-Care (12 mo. W/out medical care) Recruited through outreach 100

TOTAL 825 * Severely mentally ill is a HRSA special need population and defined as the participant reporting a history of being an

inpatient or using prescribed medication for a mental illness. Recruitment All CARE Act funded providers of care services were contacted to assist in the recruitment. Fifty-five agencies were asked to assist in recruitment, and thirty-six agencies participated. Their motivations were: • The value of the project in assuring continued funding for HIV services. • The burden is small for each provider. • At the conclusion of each project year, providers are compensated $8.00 for each client they

recruit who participated. • Providers are required to help collect needs assessment data as part of their OAPP contract. Provider staff was asked to recruit twice the number of persons expected to be interviewed in each stratum noted in Table 1-1 because of an estimated refusal rate of 50%, among those who agree to participate. Each provider was assigned a stratified quota based on race, gender, and risk group. The quota was determined based on the proportion of overall clients seen according to the OAPP client database, IMACS/Casewatch. In 2004, providers were asked to recruit the participants during three periods over six months. The flow of the recruitment process effort is shown in Figure 1-1.


© PCH and County of Los Angeles December 2004 xlii

Figure 1-1 Recruitment Process

To comply with the IRB and to assure that all recruiters recognized the rights of the participants, before starting, all recruiters had to sign a confidentiality agreement and complete two online courses offered by UCLA: 1) Protecting Human Research Subjects in Social and Behavioral Research and 2) HIPAA Clinical Research Training Course. Once recruited providers completed a screening form with basic contact information that was given to H-CAP staff, and H-CAP staff contacted the recruit to complete the interview. Recruiters noted on the screening form if the recruit agreed to complete the survey, participate in a focus group, or both. Copies of signed informed consent and HIPAA authorization forms and the screening form were given to H-CAP staff. Unless the recruit contacted H-CAP staff using the toll free number provided within a few days, H-CAP staff contacted the recruit to conduct the survey over the phone, schedule a personal interview, or provide further instructions on how to complete a survey online. Depending on the demographics of the recruit he or she may have been asked to participate in a focus group. In early April 2004, a letter was sent to each executive director (or equivalent) soliciting the organizations’ assistance. The letter asked that a primary and secondary recruiter from the organization be identified to receive training and supervision by H-CAP staff to conduct recruitment for that agency. On April 19, 2004 two trainings were held for recruiters. A full training packet is available from the Commission. Ninety-four (94) recruiters representing over 55 agencies attended the trainings. In addition, 51 staff members of OAPP and three members of the Commission attended. The training reviewed the logistics of the recruitment process including how to: • Randomly select participants.

Provider Recruiter

• Sign confidentiality statement.

• Complete HIPAA Course and Protecting Human Research Subjects.

• Randomly select PLWH/A.

• Recruit participants for survey and focus groups.

• Fill out refusal form.

• Administer Informed Consent and HIPAA Authorization Form.

• Complete screening form.

• Hand out enrollment kit.

H-CAP Staff

• Train recruiters.

• Confirm participation.

• Arrange logistics for participation (transportation, day care).

• Interview in-person or phone.

• Help desk for those who complete the survey on-line.

• Data entry & analysis.

• Report findings.


© PCH and County of Los Angeles December 2004 xliii

• Administer and complete the informed consent and HIPAA Authorization forms. • Complete the screening and refusal forms. For new provider recruiters that were assigned after the training, materials were provided on the PCH website and telephone conference trainings were arranged. Consumer Survey Using the 2002 needs assessment survey as a referent, the 2004 survey was designed by PCH and, after input from OAPP, Commission, and P&P members, it was approved in December 2003. The survey was designed in English and Spanish. The final consumer survey is shown in Attachment 1. The first section of the questionnaire captures key demographics, insurance and benefits information, stages of HIV disease progression, medications and adherence, and self assessments of physical and emotional health. Question 36 measures current awareness, need, demand, receipt, and utilization of 44 services included in the LA County continuum of HIV/AIDS care. Question 37 measures service barriers and the degree to which it caused a problem for the respondent. Each year a special topic is selected to explore in greater detail on the survey. In 2004 “Prevention for Positives” was chosen by the Commission. These questions involved measurements of their sexual and drug use behavior as well as attitudes toward prevention messages.3 The survey was designed to be interviewer-assisted, conducted over the telephone, or completed through the Internet. Phone Protocol Because of the confidentiality of the interviews, all phone interviews were completed from central phone facilities located at PCH offices in New York with professional interviewers. All interviewers were trained using a prepared curriculum that included practice sessions. Interviews were monitored by supervisory staff. All interviewers were required to complete the online research and HIPAA courses and signed a confidentiality agreement, which assures they understand that they cannot discuss any participant or their responses except as needed with H-CAP staff. Interviewers contacted and scheduled interviews from screening sheet information. The status of each contact was recorded and recruits were called back until a deposition had been determined. Interviews were done in Spanish or English. Because of the multiple recruitment and survey methods, confidential IDs on the completed interviews were checked and if a duplicate was found, the telephone interviewer asked the participant if he or she had completed a questionnaire in the past. If the interviewer determined

3 This section was derived from questions asked in a Long Beach Prevention for Positives Needs Assessment conducted by PCH in 2003-2204.


© PCH and County of Los Angeles December 2004 xliv

it was a duplicate, the interview was politely terminated. If no determination was made the interview was conducted and flagged for further follow-up during data verification and cleaning. Interviewer Assisted Face-to-face and Group Protocol Personal interviewers were hired and trained in Los Angeles. Like telephone interviewers, they completed the online research and HIPAA courses and signed a confidentiality agreement. The H-CAP Field Coordinator scheduled either one-on-one or self-administered interviews during a group session. Upon completion, the questionnaires were shipped to PCH in New York using overnight mail and tracking numbers in case of shipping difficulty. Only confidential IDs were shown on the questionnaires; there were no names or other identifying information on the questionnaires. For the group interviews, flyers were distributed in the clinics. PLWH/A who came were given the Informed Consent Form, the HIPAA Authorization Form, the Screening Form, and a questionnaire in either English or Spanish. Interviewers were available to help participants with any questions or to assist illiterate respondents. Interviewers checked each questionnaire for completeness. Table 1-2 shows the locations and the dates of group interview sessions. About ten interviews were completed using the online survey. Table 1-2 Open Recruitment Sessions DATE Location TIME # Attended 1 10/21/2004 AHF Downtown 8:30am- 3pm 23 2 10/25/2004 High Desert 10:00am-noon 16 3 10/25/2004 Rand Schrader 11:00am- 6pm 61 4 10/25/2004 Los Angeles Gay and Lesbian Center 1pm- 5pm 2 5 10/26/2004 Charles Drew University 9:00am- 4:30pm 51 6 10/26/2004 Van Ness Recovery House 3:00pm- 5:00pm 8 7 10/27/2004 AHF Hollywood 8:00am- 6:00pm 42 8 10/27/2004 St. Mary’s 5:00pm- 8:00pm 52 9 10/28/2004 AltaMed 9:00am- 5:00pm 28 10 10/28/2004 Serra House (3 locations) Throughout 9 Online Interviewing Recruits were given the opportunity to complete the questionnaire online if they had access to the Internet. The questionnaire was initially designed in SPSS Data Entry Web Server and later transferred to MrInterview4. Participants accessed the online questionnaire through PCH’s web page. They used their confidential to access the survey. Once in the system, respondents follow the prompts on the screen to complete the questionnaire in either English or Spanish. It automatically moves through the appropriate skip sequence depending on responses. At the end of the online questionnaire, participants are notified that once responses are verified compensation is mailed. There is a help line at PCH to assist participants with the questionnaire if they have any technical problems or are unable to fully 4 For details on MrInterview link to http://www.spss.com/mrInterview/.


© PCH and County of Los Angeles December 2004 xlv

comprehend the questions being asked. Participant responses go directly to a web server located at PCH offices. To assure confidentiality, the server has a firewall, and the information is encrypted. The survey is accessed through an SSL protocol to manage the security of message transmission on the Internet. The SSL protocol utilizes the HTTPS (Secure Hypertext Transfer Protocol). The survey site is authenticated by Thwate, which provides a digital certificate to PCH that assures that the site is secure. The security used for the online survey is similar to the system many commercial Internet providers use to secure financial transactions. The only identifying information on the questionnaire is the confidential ID and it cannot be linked to any name. A backup of the information is made daily, and weekly back-ups are kept off-site in a secure location. Response Rate In 2004, providers recruited 958 PLWH/A, and H-CAP interviewed 732 for a completion rate of 76%. About 400 interviews were completed over the telephone by H-CAP staff. These sessions ranged from 30 minutes to 2 hours. Thirty-five interviews were one-on-one sessions, and 292 were completed in group settings run by H-CAP staff at specific agencies. The final number of respondents fell short of the 825 goal. Reasons for the lower than expected participation were: 1) technical difficulties with the online software which was changed mid-way through the process to make it more stable and easier to use, 2) the unanticipated need for several University and Hospital based providers to complete their own IRB, 3) the significant start-up time it took before interviewing began in April 2004, 4) the unavailability of the online interview until late in the survey process and 5) the lack of provider recruiter time to complete recruitment.. Table 1-3 shows how the final sample compares to the quota sample plan. Recruiters oversampled MSM and Latino males in general and females and APIs were under-recruited. Still, the overall sample sizes of most risk groups are adequate for analysis.


© PCH and County of Los Angeles December 2004 xlvi

Table 1-3 Final Sample Risk Group Race Group Sample Quotas Unweighted N=732 Male MSM Anglo 50 57 Af Am 50 98 Latino 70 149 API+ other 45 23 Male MSM/IDU Anglo 40 37 Af Am 20 24 Latino 30 41 API+ other 10 12 Male IDU Anglo 30 14 Af Am 50 27 Latino 20 16 API+ other 10 3 Male Het Anglo 30 4 Af Am 30 25 Latino 30 39 API+ other 10 0 Fem IDU Anglo 25 8 Af Am 45 14 Latino 25 7 API+ other 5 6 Fem Het: Anglo 45 6 Af Am 50 52 Latino 45 60 API+ other 10 10

Populations with Special Needs1 Non Injection Drug Users - NIDU 462 347

Women of child-bearing age - WOCBA 225 78 MSM of Color 165 395

Men-who-have-sex-with-men-and women (MSMW) 60 118

Youth (18-24)3 40 24 Undocumented 30 128

Transgender 25 32 Out-of-care 100 12

Homeless / unstable housing 120 34

Seriously Mentally Ill (SMI)2 160 351 Native American 25 4

Recently Incarcerated 200 79 1. Special need populations are defined in the Ryan White Care Act Title I application for 2003-2004 (before it

said 2004-2005), with the exception of Native American. These populations are not mutually exclusive. 2. In planning Ryan White CARE funded services, seriously mentally ill is defined as any person who in the last

two years has had a diagnosis of depression, dementia, or bipolar disorder and has taken medication for psychological or behavioral problems. Those institutionalized for mental illness are not included in the sample.

3. Youth are defined by HRSA as 13 to 24 years of age, but this questionnaire will only be administered to those youth between the 18 and 24.


© PCH and County of Los Angeles December 2004 xlvii

Analysis The survey data was analyzed using SPSS, a statistical software package. Weights were applied to the oversampled populations to bring them back to the estimated population proportion. The weighted and unweighted sample is shown in Table 1-4 with actual sample recruited in the unweighted column and the results of the weighted sample in the “weighted” column. This process allows for an analysis of the data that that represents all PLWH/A. Table 1-4 Sample Quotas by Ethnicity and Gender vs. Unweighted and Weighted N=732 Risk Group Race Group Unweighted

N=732 % Unwted Weighted

N=732 %

Wted MSM White 57 7.8% 191 26.1% Af Am 98 13.4% 101 13.8% Latino 149 20.4% 216 29.5% API+ other 23 3.1% 16 2.1% MSM/IDU White 37 5.1% 20 2.7% Af Am 24 3.3% 12 1.7% Latino 41 5.6% 13 1.8% API+ other 12 1.6% 1 .2% Male IDU White 14 1.9% 12 1.6% Af Am 27 3.7% 15 2.0% Latino 16 2.2% 15 2.0% API+ other 3 0.4% 0 .0% Male Het White 4 0.5% 3 .4% Af Am 25 3.4% 8 1.2% Latino 39 5.3% 13 1.8% API+ other 0 0.0% 0 .0% Fem IDU White 8 1.1% 6 .8% Af Am 14 1.9% 9 1.2% Latino 7 1.0% 5 .7% API+ other 6 0.8% 0 .0% Fem Het: White 6 0.8% 11 1.5% Af Am 52 7.1% 27 3.7% Latino 60 8.2% 32 4.4% API+ other 10 1.4% 3 .4%

Populations with Special Needs1 Non Injection Drug Users - NIDU 163 22.3% 229 31.3%

Women of child-bearing age - WOCBA 112 15.3% 80 11.0% MSM of Color 268 36.6% 332 45.4%

Men-who-have-sex-with-men-and women (MSMW) 103 14.1% 112 15.3%

Youth (18-24)3 16 2.2% 26 3.5% Undocumented 115 15.7% 123 16.8%

Transgender 36 4.9% 33 4.5% Out-of-care 12 1.7% 9 1.3%

Homeless / unstable housing 31 4.2% 31 4.2% Seriously Mentally Ill (SMI)2 358 48.9% 358 48.9%

Native American 13 1.8% 3 0.4% Recently Incarcerated 94 12.8% 83 11.3%

The analysis of all PLWH/A will have a margin of error of about plus or minus 3.5%. That is, if 50% of the PLWH/A report making $9,000 or less in the survey, in reality anywhere from 46.5% to 53.5% may make $9,000. The data is also analyzed by each subpopulation. In most cases these subpopulations are represented by more than 100 respondents and the level of error for these subpopulations is usually about plus or minus 10%. The quota sample was designed to


© PCH and County of Los Angeles December 2004 xlviii

oversample some of these populations like Native Americans, undocumented individuals, women, and youth in order to allow subpopulation analysis. These oversampled populations were weighted back to their proportionate representation in the analysis. Confidence intervals may approach plus or minus 20% for subpopulations with 25 or less respondents and reported findings may not be generalizable. Focus Groups Eight focus groups were conducted in 2004. Focus groups were used to explore in greater depth consumers’ perceptions of needs, gaps, barriers and disparities. Focus group topics in 2004 included HIV/AIDS care needs among 1) African American men, 2) African American women, 3) Latino men (two groups), 4) Latino women, 5) out-of-care, and 6) men-who-have-sex-with-men and women. Two of the Latino groups were held in Spanish. PCH moderators conducted the groups following the outline shown in Attachment 2. The out-of-care group had a different outline to include their specific needs, shown in Attachment 3. The schedule of focus groups is shown in Table 1-5. Table 1-5 Focus Groups DATE LOCATION GROUP 6/22/2004 Commission Offices African American Women 6/22/2004 Commission Offices African American Men 6/23/2004 Commission Offices Latino Men (2 groups) 6/23/2004 Commission Offices Latina Women 6/24/2004 Miller Education Center, Long Beach Out-of-Care (2 groups) 10/28/2004 Commission Offices MSM/W In the following report comments extracted from the transcripts can be found, and they are used to illustrate the findings from the quantitative information of the survey and highlights areas of concern mentioned by PLWH/A that was not apparent in the analysis of the survey information. Compensation Participants received food vouchers valued at $20. In the following years of H-CAP, participants who agree to be re-interviewed will receive $30 the second year, and if they agree to continue in H-CAP will receive $40 in subsequent years. All focus group participants received $20 for their participation. Providers received $8 for each recruit they referred that resulted in a completed interview. Data Sources In addition to the H-CAP survey and focus groups, various data sources were referenced, reviewed and interpreted for this report. The HARS (HIV/AIDS Reporting System) database was used to analyze AIDS trends and current epidemiology of PLWH/A. The OAPP client utilization data collection system (IMACS and Casewatch) was a source for the presentation of demographic trends and service utilization of PLWH/A in Los Angeles County. In addition, several secondary sources and publication were reviewed and these can be seen in Attachment 4.


© PCH and County of Los Angeles December 2004 1-1

1. WHERE ARE WE NOW MISSION OF THE COMMISSION To achieve the Commission’s vision, its mission is to provide effective planning and evaluation of Los Angeles County’s HIV/AIDS services delivery systems that improves PLWH/A health outcomes and quality of life in compliance with the Health Resources and Services Administration (HRSA) planning requirements. The Commission’s work is intended to comply with Ryan White CARE Act legislative requirements. VISION AND VALUES OF THE COMMISSION The shared vision of the Commission is an HIV/AIDS Continuum of Care that will assure 100% access to health care with 0% disparities among the populations infected and affected by HIV and AIDS. This will be accomplished through: • Multiple points of entry for clients to gain access to services with an expectation that,

regardless of entry point, the client will be assessed for need of primary health care core services and referred to needed resources in a timely manner.

• Improved integration, coordination, collaboration, and outreach between and among all care and prevention service providers in both urban and rural areas of Los Angeles County.

• Maximizing Ryan White CARE Act funds through uniform intake and eligibility screening processes and the subsequent coordination of care for PLWH/A that maximizes non-emergency funds for providing quality and sustained HIV/AIDS care.

• Reducing barriers to care, therein empowering PLWH/A to seek and access HIV/AIDS prevention and care services without impediment of structural, language, literacy and/or cultural disparities.

Several values guide the vision and mission of the Commission and its implementation of the HIV/AIDS Comprehensive Care Plan. They include: • Los Angeles County’s HIV/AIDS continuum of care should be characterized by innovative,

high quality service delivery that improves the health status and quality of life of PLWH/A. • Services should be available to the diverse populations of PLWH/A throughout Los Angeles

County based on need and not the ability to pay. • Services should be cost-effective and cost-efficient. • Services should be accessible to all PLWH/A, along with assurances that those who are

eligible can access CARE Act-funded care. • PLWH/A should have a clear voice in the planning of their services. • Resources should be fairly and equitably distributed throughout Los Angeles County. • Ethical practices should guide the funding and delivery of services. • Service delivery should be attentive to maintaining the dignity of PLWH/A. They should be: • Culturally and linguistically appropriate. • Compassionate



• Respectful. • Regional Planning In 1996, eight Service Planning Areas (SPAs) were created within Los Angeles County (Figure 1-1). Each SPA has a Coordinating Council that collects and analyzes local data. A brief geographic description of each area is provided in Attachment 5. The Commission has adopted the SPA as the major unit for HIV/AIDS health care planning. Service Provider Networks (SPN)–see Attachment 6--and the Coordinated Prevention Networks (CPNs) assist in coordinating care and prevention efforts with support from OAPP and the Commission. Figure 1-1 SPA Map

6. South

8. South Bay

5. West

2. San Fernando

4. Metro

1. Antelope Valley

7. East

3. San Gabriel



CONTINUUM OF CARE The Commission adopted a new continuum of care in 2001 and has continued to refine it to reflect the needs of PLWH/A. In 2002 the Commission made Removal of Barriers the second priority, and Patient Coordination and Language Care services the third priority. Within the five groups of services, the Commission moved medical case management from Removal of Barriers to Patient Care Coordination. The Continuum has become an important tool in the prioritization and allocation process as services are organized and funded in the category grouping outlined in the continuum of care. Conceptually, the continuum is composed of a core of primary health services surrounded by ‘wrap-around’ services which enable PLWH/A to access and fully utilize services in the primary health care core. • The highest priority services are in the primary health care core which includes medical

outpatient services, dental care, nutritional counseling, mental health services, substance abuse services, end-stage hospice care and patient education, counseling and testing, treatment adherence services, health education/risk reduction education, and other prevention efforts.

• The second level priority services are the Removal of Barriers Services. The services in this cluster optimize “critical paths” through access, utilization, retention, transportation, child care, housing, food services, and client advocacy. These key services provide low-income PLWH/A access to care which meets their basic needs and that allow them to focus on their HIV primary health care. Studies have shown that PLWH/A who do not have their basic housing and nutritional needs met, or who have no or poor transportation to services, are unlikely to seek and maintain primary health care.

• The third priority services are located in the Patient Care Coordination cluster of services. These services offer PLWH/A a choice in care coordination approaches (patient care coordinators, nurse case managers, and/or medical case management and language services for non- or limited English proficiency populations. Patient care coordination services respond to the complexity of the health care system and by providing expert guidance in to clients seeking and accessing services provided in the continuum of care. Case management is viewed as critical to assisting PLWH/A obtain and maintain their proper regimens of care. As the medical regimens become more varied, complicated, and complex medical case management is necessary. For those who do not speak English or who experience difficulties with English comprehension, translation and interpretation services are an essential factor in patient care coordination.

• The fourth priority services are located in the Economic Well-Being cluster of services that create direct, working, effective linkages and collaborations with services and community developments related to amelioration of poverty, workforce re-entry services, health insurance (and other benefits) access and continuation of services. Economic well-being measures include legal services and permanency planning. Both of these types of services significantly impact the continuity of care for families, in particular addressing the needs of HIV-positive and -negative children of parents who are HIV positive.



• The fifth priority services are in the Enhancement Services cluster. These services, including psychosocial support from peers, and other supportive social services are designed to enhance the core and wrap-around services, and the quality of life for PLWH/AIDS. The wrap-around and self-enhancement services are intended to mitigate disparities in care and ensure client access to appropriate primary health care services. Self-enhancement services improve clients’ quality of life through activities such as self-help services, peer support, buddy companion services, and pastoral care.

• The sixth priority of services is program support. In order to manage the continuum of care, program support assures that there is a system-wide program and evaluation infrastructure in place to coordinate services, build capacity, measure outcomes, assess programs and provide the necessary training, education and technical assistance to providers and consumers facilitating consumer access and ensuring high quality of care.

• The seventh priority is Planning Council Support. The Commission is required to address and execute its legislatively mandated priority- and allocation-setting responsibilities and to ensure that the process of distributing service funding is performed equitably. Further, the Commission is charged with assessing the administrative mechanism, establishing a system-wide grievance procedure, evaluating service effectiveness, and educating consumers and the public on the availability of HIV/AIDS services and opportunities to participate in the planning process.

• The eighth priority is Quality Management. Consistent with the overall mission of OAPP and the Commission, a QM program provides a systematic way to assess the quality of services provided to PLWH/A to assure they meet the standards of care adopted by the Commission. OAPP and the Commission are in the process of establishing standards and a uniform data collection system.

• The ninth priority of the commission is administrative agency support that provides for operation and overhead of OAPP.

The visual representation of the model accepted by the Commission in 2001 is shown in Figure 1-2. This model lists only Prevention and CARE Act-funded services.



Figure 1-2 Continuum of Care Model

5. ENHANCEMENT SERVICE

Psychosocial Support Service HIV Support

Food Bank, Home DM, Nutritional supplements Housing assistance & services Transportation Child care Client advocacy

Case Management, Psychosocial Case Management, Medical Translation/interpretation

HIV Counseling/Testing Partner Counseling/Referral Heath Education/Risk Reduction Medical outpatient General and Specialty Treatment Adherence Nutritional Counseling HIV/AIDS Medications Mental health: Psychiatric Mental health: Psychological Oral Health Substance Abuse Services Hospice Services

Legal Services Permanency planning

6. PROGRAM SUPPORT Service Coordination Capacity Building Service Enhancement Evaluation Training and Education Program Research/Review Rate and Fee Review Program Development

7. PLANNING COUNCIL SUPPORT

Priority- and Allocation-Setting

Evaluation Activities Public Awareness Efforts Training Activities Staffing Pattern

Only funded service categories are listed Prevention Services (not CARE Act-Funded)



Interface with Comprehensive Prevention Program Although not funded through CARE Act funds, The Continuum of Care incorporates prevention in the Primary Health Care Core. As shown in Figure 1-3, the Prevention Planning Committee (PPC) has developed a comprehensive prevention program. In 2002 the Plan noted, “Over the next two years, the Commission will continue its efforts to integrate the PPC Comprehensive Prevention Program into the Continuum of Care.” Since that time several initiatives have been started. With California’s launch of HIV reporting in July, 2003, there is now an enhanced opportunity for EMAs to develop seamless client services databases that include those testing and being reported as positive; the Los Angeles County EMA has already begun initiating several of those efforts. The Commission and the PPC will also join efforts in the development of mutually-beneficial quality improvement and evaluation tools. The implementation of HIV/AIDS Interface Technology Systems (HITS) funded by a Part F Special Projects of National Significance (SPNS) facilitates early entry into care and promotes better health outcomes. HITS unburdens newly diagnosed individuals from the complexities and challenges facing clients initially trying to access care. Through a series of three interface applications to the OAPP data management system, HITS enables HIV Counseling and Testing (HCT) providers to refer newly diagnosed clients into medical outpatient services, generates automatic appointment reminders for HCT and clinic staff, tailors referrals to specific needs of the client, and provides certain pre-screening services. Planning for HCT services follows a process that categorizes services for specific behavioral risk groups. The OAPP contracts for these services include compensation for the costs of risk assessment and follow-up activities for those who fail to return for test results. For those who test positive, HCT providers are compensated for the costs of linked referrals for services and partner counseling and referral services. There are more than 450 HCT sites, including 66 fixed sites and eight (8) mobile units, supported by public funds. HCT services are carefully targeted to those at highest risk for HIV, which has resulted in increases in the rates of positive test results. In 2003, the number of tests provided to Latinos increased 2.5% from the previous year, but the number of new positive results among Latinos increased 20%.



Figure 1-3 Comprehensive Prevention Program



PRIORITY AND ALLOCATIONS Priorities The Commission has a legislative mandate to prioritize and allocate Title I, selected Title II, and MAI funds to HIV/AIDS Care services. Since 2002, the Commission has formalized the planning and allocation function and the steps in that process are shown in Figure 1-4. The process formalizes the relationship between the subcommittees of the Commission, and further integrates the activities of the Priorities and Planning, Standards of Care and Finance subcommittees. Figure 1-4 Priority and Allocation Process

To facilitate data-based decision making, the Commission staff developed “Service Category Summary Sheets” where information from diverse sources is summarized. The information includes: 1) consumer information from survey and focus groups collected under the HIV/AIDS Community Assessment Project (H-CAP), 2) utilization data collected through the OAPP client tracking system (IMACS/Casewatch), and 3) OAPP contract monitoring information. The data synthesized in the summary sheets is shown in Table 1-1, and selected examples of these sheets are shown in Attachment 7.

• Define “framework” • Define criteria for

process

• Determine process & service outcomes

• Recommend process for Commission approval

Oversight Committee Priorities & Planning

Oversight Committee Finance

Oversight Committee Standards of Care



DIRECTIVE FOR IMPLEMENTATION

FINANCIAL NEEDS ASSESSMENT

EFFECTIVENESS EVALUATION

SERVICE NEEDS ASSESSMENT

OVERSIGHT AND MANAGEMENT

• Define “service need”

• Conduct data collection

• Determine “unmet need”

• Define service categories

• Set and/or rank priorities

• Measure service efficacy

• Determine client satisfaction

• Defines unit cost

• Aggregate outcome data

• Perform continuous quality improvement

• Review other sources of services funding

• Compile service efficiency and need data

• Make allocations recommendations to P&P

• Determine allocations

• Recommend “How to Best Meet the Need”

• Develop “Other Factors to be Considered”

• Document process and submit to OAPP for implementation



Table 1-1 Data Elements of Service Category Summary Sheets Category, priority and past priority CARE Act and other funding Service definitions Key points of entry Units of service and cost effectiveness Service utilization: contracted vs. provided

• Costs per units and per clients • Variances of contracted vs. provided

Client demographics Utilization analysis Expressed need, barriers and gaps Issues, trends and impacts

Decisions on priorities and allocations were based on different paradigm and values. Paradigms represents the ethical perspective from which decisions are made, and values represent the codes of conduct and values applied to the decision making process. The paradigms and related choices regarding priorities and allocations are shown in Table 1-2 and values are shown in Table 1-3. Table 1-2 Decision Making Paradigms PARADIGM CHOICES Caring ethic: Need and capacity vary among individuals and, over time; community must strive to meet different needs; community must take differing capacities into account; and importance of complete inclusion.

• Absolute Inclusion: no matter how meager the available resources, all community participants will receive a share of resources; the goal is to sustain complete participation.

• Nuanced Inclusiveness: since there are real differences among participants regarding needs and abilities, a process for assessing these differences will be developed; this will allow for differential distribution while assuring complete participation.

• Risk Equalization: one way to ensure participation by all is to share risk across all participants; this maintains traditional allocation while engaging all participants in efforts to increase resources.

Justice ethic: People have inherent rights; there are individual differences in capacity; community must strive to equalize opportunity; importance of rules of process; and there are winners and losers.

• Equality: equal portion to each or equal cuts • Equity: relatively equal portions with attention paid to severe need • Fairness: similar cases treated in a similar fashion • Altruism: volunteering to take a cut or go without • Compassion: rescuing those who cannot support themselves/assisting weak and

suffering • Chance: fate decides through random choice; let the universe decide • Coercion: enforced decision by authority • Utilitarianism: greatest good for the greatest number • Rights and Duties: participation in community recognizes reciprocal rights and duties • Retributive Justice: making up for past inequities • Distributive Justice: working towards general equality • Merit: past or current contributions • Market: ability or willingness to pay • Fidelity: recognizing and adhering to past commitments



Table 1-3 Decision Making Values VALUE DEFINITION Efficiency Accomplishing the desired operational outcomes with the least use of

resources. Survival Maintaining the existence of an organization or system of care. Quality of Care The highest level of competence in providing care. Fidelity Multiple commitments that bind and providers to the clients for the duration of

need. Advocacy The asymmetrical power relationship of provider and client requires the provider

to take care to protect the client. Beneficence Doing the most good that we are able to do. Non-malfeasance Avoiding making the situation worse. Access Ensuring clients’ access to services in greater numbers or more effective ways;

improving access; increasing access; ensuring “0” disparities. Representation Implementing decision-making in a way that includes people who adequately

represent and/or reflect the need and diversity of constituencies involved Because of the uncertainty of funding, the three different funding scenarios noted in Table 1-4 were developed and each scenario was assessed using the paradigms and values. Table 1-4 Funding Scenarios FUNDING SCENERIO 1. If the Year 15 Title I award is increased, flat-funded or decreased by less than 4.9% 2. If the Year 15 Title I award is decreased by 5.0 – 9.9% 3. If the Year 15 Title I award is decreased by 10.0% or more1 1. Rankings in Scenario #3 were adjusted in accordance with paradigms/values

− Those services providing direct medical care to the greatest number of clients remained the most important. − Those services ensuring the greatest number of clients’ access to primary health care became more important. − Those services affecting the most people or services which could not be accessed elsewhere were considered

higher priority. Services more directly impacting the Continuum of Care were ranked higher. Using these scenarios, in 2003 and again in 2004 the Commission confirmed their priorities for the different service groups in the continuum of care, as shown in Table 1-5 and established the priorities across the different service categories, as shown in Table 1-6. Table 1-5 Service Category Prioritization

Priority #1: Primary Health Care Core Priority #2: Removal of Barriers Priority #3: Patient Care Coordination Priority #4: Economic Well-Being Measures Priority #5: Self-Enhancement Services Priority #6: Program Support Priority #7: Planning Council Support Priority #8: Quality Management Priority #9: Administrative Agency Support



Table 1-6 Continuum of Care Services by Ranking and Priority

SERVICE CATEGORY Year 14 Priority

Year 15 Rank

Scenario #1

Year 15 Rank

Scenario #2

Year 15 Rank

Scenario #3 Ambulatory/outpatient, medical, specialty and nutritional counseling1 Treatment adherence

Priority #1/High 1 1 1

Mental health services, psych and psychiatric 2


Oral health care Priority #1/High 3 3 5 Housing assistance Priority #2/High 4 4 8 Food bank/delivered meals/supplements


Transportation services3 Priority #2/High 6 6 7 Case management, psychosocial Priority #3/High 7 7 3 Case management, medical Priority #3/High 8 8 4 Substance abuse services Priority #1/High 9 9 9 Translation/interpretation Priority #3/High 10 10 12 Legal services Priority #4/Medium 11 11 10 Psychosocial support, HIV support

Priority #5/Medium 12 16 16

Client advocacy Priority #2/Medium 13 12 14 Child care services Priority #2/Medium 14 13 13 Permanency planning Priority #4/Low 15 14 11 Residential or in-home hospice care4

Priority #1/Low 16 15 15

Referral for health care/support5 Priority #3/Low 1. Medical outpatient, medical specialty, nutritional counseling and treatment adherence were combined into one category 2. Psychological and psychiatric mental health services were consolidated into a single category. 3. As recommended in the OAPP rate studies, van transportation will no longer be funded with Title I/II funds in Transportation.

In accordance with the values, van transportation was accessed by few persons and agencies, it was very expensive per unit based on cost per client, and there was an inability to track its contribution or outcomes as contributing to the Continuum of Care.

4. Group home services will no longer be funded with Title I/II funds in Residential. Very few persons accessed the service, and funding is available through other sources particularly the Department of Family and Children Services.

5. Referral service category was eliminated with the expectation that the administrative agency will be directed to—to the extent that it has not already been done—incorporate referral services into all categories.

Because of the uncertainty of funding for year 16 (FY 2005), four different scenarios for funding were developed: 7. Any increase. 8. Flat-funded. 9. Decreased by less than 5% 10. Decrease by 5.1% or more.

Irene Hung� 1/10/05 16:56Formatted: Bullets and Numbering



The P&P committee of the Commission, using the different paradigms and values is in the process of determining appropriate priorities and allocations. The Commission, in assessing the priority and allocation for each service draws from several sources of information, summarized in the Service Category Summary Sheet noted earlier. They include: • Existing funding information to understand how their allocations of Title I, selected Title II,

and MAI funds fit into overall expenditures categories, including funding by other sources. • Epidemiological data to determine the number of PLWH/A who might demand the services. • Consumer input that documents the perceived need, reported demand and utilization, and the

satisfaction of PLWH/A. Each of these is discussed in the following sections. The schedule for the P&P allocation process is shown in Table 1-7. Table 1-7 Year 16 Allocation Timeline

November 04 December 04 January 05 February 05 March 05

P&P CommitteP&P Committeee recommends P- and A-Setting process to Executive Executive CommitteeCommittee

P&PP&P implements P-and A-Setting framework

Finance Finance CommitteeCommittee and OAPPOAPP collaborate on “Attachment E” (other streams of funding): forms finalized and sent to providers

P&PP&P sends public notices for participation in the process (all meetings)

P&PP&P selects paradigms and operating values

P&PP&P begins Service Category Summary Sheets

P&PP&P presents P- and-A Setting process report to Commission

CommissionersCommissioners sign pledges to participate in process

P&PP&P begins collecting provider input on service categories

ConsultantConsultant presents needs assessment analysis to P&PP&P

FinanceFinance develops Resource Inventory

SOC CommitteeSOC Committee assembles information on unit cost, cost effectiveness and service effectiveness

HIV EpiHIV Epi presents semi-annual Epi report to CommissionCommission

ConsultantConsultant presents needs assessment to CommissionCommission

P&PP&P and OAPPOAPP finalize Service Category Summary Sheets, incorporating all input

P&PP&P conducts provider forums

P&PP&P finalizes all public and provider input

StaffStaff completes special population analyses and P&PP&P reviews

P&PP&P applies Change and Comparability matrices

P&PP&P sets priorities

P&PP&P presents Service Category Summary Sheets and Priorities to CommissionCommission

CommissionCommission approves priorities

FinanceFinance analyzes Attachment Es

FinanceFinance reviews other sources of funding

FinanceFinance completes Resource Inventory

MAIMAI and Program Program SupportSupport workgroups present final recommendations

FinanceFinance reviews final PC budget draft

FinanceFinance determines allocations

FinanceFinance presents allocations to Commission

P&PP&P and FinanceFinance present to directives to “Best Meet the Need” and “Other Factors to be Considered” to Commission

Commission Commission approves directives and allocations



(Year 13 sheets finalized; Year 14 sheets begun) FUNDING THE CONTINUUM OF CARE An Overview of Funding Table 1-8 indicates that there was over $547 million in funding for care services in 2004 from Federal, State, and local sources. Figure 1-5 reveals that about 45% of those funds are allocated to ambulatory outpatient care with another 8% allocated to other outpatient services. Seventeen percent (17%) of the funds are allocated to ADAP and State funded medication reimbursement. The Federal government contributes about 58% of the total amount allocated for drug reimbursement, and the State pays about 42%. About 12% ($66 million) are allocated to support services, such as case management. Table 1-8 All 2004 Care Service Funds

CARE Act

Title I

Other Federal Funds State Funds Local Funds

TOTAL FUNDS

Home and Community-Based Support Services $8,093,958 $27,460,866 $17,882,067 $12,513,000 $65,949,891

Ambulatory Outpatient Medical Care $16,496,356 $130,488,886 $43,767,660 $55,599,690 $246,352,592

AIDS Drug Assistance Program $54,815,198 $40,515,580 $95,330,778

Other Outpatient Community based Health-Care Services* $6,234,005 $14,427,105 $14,261,883 $10,053,933 $44,976,926

Inpatient Medical Care Services $12,794,800 $13,857,614 $15,916,744 $42,569,158

Grantee Administrative Costs, Program Support, and Planning Council Support $5,060,260 $17,945,426 $13,714,752 $14,935,603 $51,656,041

TOTAL $35,884,579 $257,932,281 $143,999,556 $109,018,970 $546,835,386

*Includes dental, mental health, nutritional counseling, and substance abuse services.



Figure 1-5 Distribution of $547 Million in Care Funding

Ryan White Title I, II and MAI CARE Act Funds The County of Los Angeles received $36,644,121 in Ryan White CARE Act Title I, II, and MAI funds for 2004. Figure 1-6 displays the distribution of these funds based on the Continuum of HIV Care and the nine service categories defined by the Commission. Over 60% of the funds are allocated to the primary health care core, 12% are allocated to patient care coordination, and 9% is allocated to removal of barriers. About 16% is allocated to program and planning council support, quality control, and grantee administration. As seen in the bar chart to the side of the pie chart, 5.2% of the funds are allocated to program support, 3.6% to Commission support, 2.1% to quality management, and 5% to Grantee administration. Notable, as seen in Table 1-8 Grantee funds are further supplemented by State and local funds. Minority AIDS Initiative (MAI) Minority AIDS Initiative (MAI) funding for 2004 was about $585,000, and it has been used to reduce disparities and to improve access to services for communities of color, serving African- Americans, Hispanics/Latinos, Asian/Pacific Islanders, and Native Americans since 2001. The Commission continued current MAI service allocations, maintained allocation levels for program support and increased planning council support.5 It also continued MAI funds for outpatient medical care, oral health, and case management services. In the last two years, MAI services have been expanded to serve more clients of color, including more women, and in more SPAs. A majority of MAI funding is allocated to outpatient/medical (47%) and psychosocial case management (47%) designed to address the needs of clients who may lack access to the care system due to race and economically-related factors. About 7% of the MAI funds have been allocated to dental care, funding a mobile dental van to provide additional access to oral health services in areas previously identified as lacking access.

5 Title I Application for Year 15

Support Services 12.1%

ADAP 17.4%

8.2%

Inpatient Care 7.8

%

Admin 9.4%

Ambulatory Outpatient 45.1%

Other Outpatient*

*Includes dental, mental health, nutritional counseling, and substance abuse services.



Figure 1-6 Distribution of $36.6 million 2004 RWT I, II, MAI Funds

Figure 1-7 displays the distribution of funds within each Continuum of HIV Care category. The length of the bars reflects the amount of funds distributed to each service in the Continuum of HIV Care. When assessing the funding allocations, they should be considered in the context of the overall funding for care services in Los Angeles. For example, some service categories such as substance abuse or child care may be allocated relatively small amounts because of the availability of other funding sources. Although CARE Act Title I, II, and MAI funds assure that the un- and under-insured receive life preserving care services, several other federal, state, and local programs contribute the majority of funds to the Continuum of Care. These sources of funding are described in the next section.

2. Removal of Barriers 8.9%

Other 15.9%

9. Grantee Administration 5%

8. Grantee Quality Management 2.1%

3. Patient Care & Coordination 12.1%

4. Economic Well-Being 1.1%

6. Program Support 5.2%

7. Commission Support 3.6%

62%

5. Self-Enhancement 0%

1. Primary Health Care Core



Figure 1-7 Breakdown of Title I & II 2004 Funding

In considering allocations, the P&P committee and Commission considers alternative funding sources. The Commission has completed a financial needs assessment that suggests several ways to increase non-CARE Act funding for services in the continuum of care. Due to lack of data, however, the Financial Needs Assessment was not able to provide an estimate of financial demand for a service, or a quantitative funding gap for services. The following sections document available information regarding non Title I, II, and MAI funds for the continuum of care and incorporate findings from the Financial Needs Assessment where appropriate. Non-Commission Allocated Ryan White CARE Act Titles II, III, and Part F Funding In addition to the Title I, II, and MAI funds under the auspices of the Commission and OAPP, the CARE Act provides: • The AIDS Drug Assistance Program, ADAP, and the health insurance premium payment

program, CARE/HIPP. Both are funded by Title II funds allocated at the State level. As shown in Table 1-8, ADAP is the second largest expenditure after outpatient care. CARE/HIPP is funded at amounts that are modest but sufficient to meet most demand for the program. Low awareness of the program however may reduce demand.

• Early Intervention Grants, Capacity, and Planning Grants directly to providers under Title III.



• Grants to provide services to positive women, infants, children, youth, and their affected family members under Title IV.

• Part F funds directly for dental care, and different special programs through its “Special Projects of National Significance” or SPNS projects.

Fourteen Los Angeles providers received or had continued Title III funding in 2003 for a total estimated $3,933,970. In addition, two Los Angeles providers, USC and the Los Angeles Family AIDS Network (LAFAN), have been granted $1,685,181 under Title IV. The USC program provides direct testing and care services to young adults. LAFAN re-distributes Title IV funds to providers using a RFP process. Those funds are coordinated between OAPP, the Commission, and LAFAN. Cross title collaboration and planning targets Title IV funds to gaps in services, and OAPP monitors the contract to avoid duplication in services. Service Allocations6 The trend in allocations to the different services is shown in Table 1-9. Between 2002 and 2003 the recommended allocations have remained nearly the same, but in 2004 with a cut of about $6 million there was some adjustments. Outpatient care and dental care were increased slightly, but most services were cut. Some of the funds for psychosocial case management were allocated for referrals based on the development of a directory. About $46 million were contracted, and about $37 million were expended. The service with the largest unspent funds was substance abuse treatment. Treatment adherence and outpatient psychiatric services also expended significantly less than contracted. Housing expended about 23% more than they were contracted.

6 OAPP and the Year 15 Ryan White Title I Grant Application are the main sources of the information in this section.



Table 1-9 Trends in HIV/AIDS Funding

PRIOR-ITIES SERVICES Year 11

Ryan White Title I and Title II Combined

Priorities

Year 11 Title I, Title II and County Estimated

Expenditures*

Year 12 Ryan White Title I and

Title II Combined Priorities

Year 12 Title I, Title II and County Estimated

Obligations

Variance Year 12

Priorities and

Obligations

Year 13 Ryan White Title I

and Title II Contracted

Year 13Ryan White Title I and Title II Expended

Variance Year 13

$ % $ $ % $ $ $ % $

Outpatient Medical Services, Medical * 17,641,371 46.5% 20,003,868 17,265,732 42.2% 20,055,007 2,789,275 21,024,765 45.7% 19,571,269 -1,453,496 Outpatient Medical Services, Specialty * 449,584 1.1% 554,624 105,040 544,624 1.2% 437,916 -106,708 Outpatient Medical Services, Psychiatric * 1,103,524 2.7% 1,197,664 94,140 1,179,780 2.6% 932,481 -247,299 Hospice Services **** 326,970 0.8% 391,724 64,754 0.0% Mental Health Services, Psychological 2,167,796 5.7% 2,191,359 2,329,662 5.7% 2,422,647 92,985 2,422,647 5.3% 2,180,907 -241,740 Nutritional Counseling * 122,614 0.3% 208,063 85,449 208,063 0.5% 190,642 -17,421 Substance Abuse Services 2,317,299 6.1% 2,375,862 2,452,275 6.0% 2,447,794 -4,481 2,389,794 5.2% 1,358,086 -1,031,708 Oral Health Care 448,510 1.2% 501,048 490,455 1.2% 563,919 73,464 696,720 1.5% 653,082 -43,638 HIV/AIDS Treatment Adherence Services 1,526,829 4.0% 1,396,653 1,634,850 4.0% 1,526,829 -108,021 1,664,715 3.6% 1,521,829 -142,886

#1

Patient Education - 0.0% - - 0.0%

Case Management, Medical *** 286,099 0.7% 283,978 -2,121 283,978 0.6% 218,968 -65,010 Referral *** 81,743 0.2% 106,020 24277 0.0% #2 Other Support Services, Translation/Interpretation 234,492 0.6% 232,888 245,228 0.6% 244,587 -641 244,587 0.5% 237,188 -7,399

Legal Services ** 380,048 1.0% 388,587 367,841 0.9% 351,202 -16,639 377,497 0.8% 369,481 -8,016 #3 Permanency Planning ** 40,871 0.1% 37,385 -3,486 34,318 0.1% 34,318 0

Case Management, Psychosocial *** 4,036,584 10.6% 3,991,725 3,923,641 9.6% 4,346,681 423,040 4,333,087 9.4% 4,129,011 -204,076 Food Bank/Home Delivered Meals 689,700 1.8% 741,966 735,683 1.8% 721,253 -14,430 760,993 1.7% 751,505 -9,488 Transportation 1,532,407 4.0% 1,948,599 1,634,850 4.0% 2,008,488 373,638 1,784,507 3.9% 1,604,453 -180,054 Other Support Services, Childcare 191,466 0.5% 153,461 204,356 0.5% 197,981 -6,375 205,907 0.4% 175,565 -30,342 Housing Assistance **** 1,980,917 5.2% 6,895,450 1,798,335 4.4% 6,793,720 4,995,385 1,715,896 3.7% 2,104,120 388,224

#4

Client Advocacy 205,907 0.4% 175,565 -30,342

#5 Psychosocial Support Services, Peer Suppt 542,414 1.4% 535,921 572,198 1.4% 557,992 -14,206 557,992 1.2% 486,083 -71,909

SUBTOTALS FOR PRIORITIES 1-5 33,689,833 88.6% 41,357,387 36,066,511 88.2% 45,017,558 8,951,047 46,035,777 88.3% 37,132,469 -3,707,384

* Expenditures are estimates because not verified prior to year end closing



Medi-Cal and Medicare Ryan White CARE Act funds and Medi-Cal are the two primary sources f or reimbursement of HIV/AIDS services, particularly core medical services and case management services. For those eligible through work history and payment into the social security system, Medicare refunds health care services. While the exact contribution of each of these programs is not known, based on the 2004 Need Assessment of PLWH/A, about 52% of PLWH/A have either Medi-Cal or Medicare (19% have both, 31% have only Medi-Cal, and 2% have only Medicare.) The Financial Needs Assessment completed in 2003 noted that the average medical care payment for PLWA is $21,000 per year and 50% of that amount for PLWH. Assuming costs have remained about the same, the County and its HIV/AIDS service providers could be receiving between $300 and $400 million in Medi-Cal and Medicare funding. It is estimated that the country received less that $50 million. As noted in the Financial Needs Assessment, “there is still significant potential for increased Medicaid/ MediCal and Medicare funding for HIV/AIDS services in Los Angeles County.” Veterans Administration The VA also provides services under the primary health care core, removal of barriers, and patient care coordination. The Veterans Administration of Greater Los Angeles Healthcare System (VAGLAHS) is the largest and most complex in the Department of Veterans Affairs, spanning four counties (Los Angeles, San Bernardino, Ventura and Santa Barbara) with two EMAs. VAGLAHS reports currently serving 548 veterans and dependents of veterans with HIV/AIDS in Los Angeles County. They provide inpatient and outpatient medical care, housing, substance abuse treatment, pharmacy, and dental services. Expenditures for these programs are approximately $23 million, including over $2.2 million in HIV-related drug costs. The Financial Needs Assessment reports that the VA estimates a cost of $42,000 per HIV patient per year, and speculates that if 25 PLWH/A were referred successful to the VA system, it would mean approximately $1 million in additional leverage of CARE Act resources. Housing and Urban Development (HUD) The City of Los Angeles receives approximately $9 million annually from the US Department of Housing and Urban Development (HUD) in HOPWA funds. CARE Act Title I and II-funded agencies receive approximately $3.2 million in HOPWA funds every year. Coordinated through the Los Angeles Housing Department (LAHD), HOPWA funds are used locally for housing placement, housing assistance, housing specialists, informational services and housing support services. Section 8 certificates for PLWH/A are coordinated through LAHD as rental subsidies. Despite HOPWA funds, the lack of affordable housing in Los Angeles County remains a significant barrier for clients in the CARE Act-funded system, especially the multiply diagnosed.



As reported in the Financial Needs Assessment, The Los Angeles Homeless Services Authority (LAHSA) annually distributes $45-$60 million of McKinney grant funds to about 80 agencies and more than 120 programs throughout Los Angeles County. The number of PLWH/A who received these grants is not documented, but they provide another potential source of housing for PLWH/A. Los Angeles County Department of Social Services To supplement Medi-Cal, and related SSDI, The Los Angeles County Department of Public Social Services (DPSS) runs several general relief programs. CalWORKS gives cash aid and services to eligible needy California families. Families with limited resources may be eligible for housing, food, utilities, clothing, or medical care. Families that apply and qualify for ongoing assistance receive support each month. The Los Angeles County General Relief Program provides temporary cash aid to individuals who are ineligible for Federal or State programs. Able-bodied adults can receive aid for no more than nine months in any twelve-month period. Employment training services are offered and, if needed, substance abuse treatment is available. Food Stamps While food services provided through Ryan White CARE Act funds are a needed supplement to other County and private programs that provide food, it is not designed to meet the nutritional needs of PLWH/A. The Los Angeles County Food Stamps Program was established to improve the nutrition of people in low-income households by increasing food-buying power. Food stamps are issued in dollar denomination coupons and are used instead of money at grocery stores. Substance Abuse and Mental Health Services Administration (SAMHSA) For FY 2004, the State of California received over $226 million in federal substance abuse and treatment block grant funding, of which $12.6 million were HIV set-aside funds. Of these HIV set-aside funds, Los Angeles County received $3,728,911 to support HIV services for persons in alcohol and drug treatment. These resources support both Mobile and Drug Expansion (DREX) HIV-antibody testing programs for persons in drug treatment, as well as residential substance abuse treatment services for persons with HIV/AIDS. These funds also support HIV education and prevention services for injection drug users. The County Alcohol and Drug Program Administration (ADPA) allocates $4.3 million in NCC funding of contracts with community-based agencies to (a) provide prevention, treatment and recovery services to County residents and (b) to implement the County’s Proposition 36 program that helps fund outpatient counseling and residential treatment program services.



Child Health Insurance Program Several agencies provide services to women and children infected with HIV or diagnosed with AIDS. California enacted the Healthy Families Program in 1997 to implement the State Child Health Insurance Program (SCHIP). This program provides health coverage for uninsured children in families with incomes up to 200% of the Federal Poverty Level (FPL) and who are not eligible for Medi-Cal services, and coverage is similar to that offered to State employees and includes dental and vision benefits. The use of CARE Act funds to support primary medical care for children is limited due to the availability of this funding source. Department of Children and Family Services (DCFS) The Department of Family and Children Services (DCSF) has a mandate to provide and/or refer clients infected with HIV and AIDS to appropriate medical and social services. They specialize in the placement of children in foster or relative’s homes, provide counseling, and refer children and adolescents for testing. California Children’s Medical Services Combined with Title IV funds, medical services supported by non-CARE Act funds for children and adolescents appear to be sufficient to meet the needs of young people with HIV/AIDS. The California Children’s Medical Services Branch (CMS) provides a comprehensive system of health care for children through preventive screening, diagnostics, treatment, rehabilitation and follow-up services. The HIV Program of CMS provides funding to screen children at risk for HIV infection and provides infectious disease and immunology services. Services have been provided to over 10,000 children since inception of this program. After screening, children with HIV/AIDS are transferred to the California Children’s Services (CCS) program and linked to comprehensive HIV treatment and services. WIC and Child and Adult Care Food Program Besides medical services, there are several food and nutrition programs for women and children including the Special Supplemental Food Program for Women, Infants, and Children (WIC) that provides vouchers for specific nutritious foods along with nutritional supplements and the Child and Adult Care Food Program that provides meals served to children in childcare settings. There is also the School Nutrition Program that provides meals for children attending schools. Los Angeles Department of Transportation (LADOT), Metropolitan Transit Authority (MTA), and Access Services, Inc. (ASI) Persons living with HIV/AIDS frequently identify the lack of transportation as a barrier in getting medical and other supportive services. The Financial Needs Assessment



recommends increased collaboration with LADOT, MTA and ASI to obtain transportation services for persons living with HIV/AIDS in two ways: • Use a portion of CARE Act funds to help PLWH/A purchase Cityride scrip from the

Los Angeles Department of Transportation (LADOT). The Cityride program allows seniors and persons with disabilities to purchase 72 units of scrip per quarter for $15.34 ($6.34 for Medi-Cal or SSI recipients). Individuals can use the scrip to purchase a monthly Metro pass for 12 units, a dial-a-ride for 2-6 units, a private lift van for up to 8 units, and/or a taxi ride for up to 12 units.

• Work with the Metropolitan Transportation Authority (MTA) and its contractor, Access Services, Inc. (ASI), to provide more curb-to-curb transportation services. ASI is the federally required ADA paratransit agency that provides both fixed-route and curb-to-curb services for individuals whose disabilities prevent them from using regular buses or rail service. OAPP staff should work closely with MTA and ASI to clarify standards for providing ADA services to PLWH/A.

The Financial Needs Assessment recommends additional ways to increase governmental reimbursement: • Through the use of Title XIX entitlement funding for Medi-Cal Administrative

Activities. (MAA) and Targeted Case Management (TCM). MAA is open-ended entitlement funding available to both County departments and contracted agencies for: (1) outreach, (2) facilitation of the Medi-Cal application process, (3) transportation of Medi-Cal recipients, (4) program planning to increase capacity and improve service delivery, (5) program compliance and claims submission, and (6) training of County and contractor staff on MAA requirements. TCM is designed to assist a specific group of Medi-Cal recipients with access to necessary medical, social, educational, and other services through: (1) assessment of client needs, (2) preparation of individual service plans, (3) service plan implementation and interagency coordination, (4) assistance in accessing services, (5) crisis assistance planning, and (6) periodic reviews of case plans. Like Medi-Cal, both involve 50/50 federal and State funding. Utilization of MAA/TCM should be viewed as key to improving the capacity of HIV/AIDS service providers to become certified to provider services eligible for Medi-Cal reimbursement.

• The Department of Mental Health (DMH) utilizes a certification process and might be able to certify OAPP-funded mental health service providers if OAPP and the Commission commit non-CARE Act allocations, such as Net County Costs (NCC), to the effort. Federal funds cannot be used to match Medi-Cal, because it is already 50% funded through Medicaid. To do so, OAPP would need to support a majority of its mental health services to PLWH/As with NCC dollars, and the Commission would need to reallocate CARE Act funds accordingly. Services for indigent clients who are not eligible for Medi-Cal could still be covered by CARE Act funding.

• There is an unknown potential to increased payments from private insurance providers. 2004 H-CAP data indicates that 8% of PLWA and 9% of PLWH have private insurance coverage. At an estimated cost of $21,000 per year for PLWA and



50% of that amount for PLWH, the County and its HIV/AIDS service providers should be receiving as much as $55.5 million in private insurance payments. It is likely that the majority of this is recovered because providers are required to bill private insurance if it is available. However, there may be some unrealized opportunity to recover reimbursement through insurance by increasing utilization of the state insurance continuation program.

Recommended 2004 RW TI and TII Allocation In summary, for Ryan White Title I and Title II funds, the recommended distribution of funds within the five continuum of care categories is shown in Table 1-10. Following the service priorities, the primary health care core increased the percentage for 72.2% to 73.6% from year 14 to year 15, while removal of barriers declined from 12.4% to 10.9%. The third priority (Patient Care Coordination), fourth priority (Economic well-being) and fifth priority (Enhancement Services) stayed about the same. Table 1-10 2004-5 Allocations Service Category Year 14

Allocation (%)

Year 15 Ranking

Year 15 Allocation (%)

Primary Outpatient Medical Care: Ambulatory/Outpatient Medical Ambulatory/Outpatient, Specialty Nutritional Counseling Treatment Adherence

52.9% 1 55.3%

Mental Health Services: Psychological Counseling Psychiatric Treatment

9.6% 2 9.3%

Oral health care 2.4% 3 2.5% Residential or in-home hospice care 0.5% 16 Cluster w/ HA Substance abuse services 6.8% 9 6.5% Primary Health Care Core 72.2% 73.6% Housing assistance 5.0% 4 4.7% Food bank/delivered meals and supplements 2.2% 5 2.1% Transportation services 4.0% 6 2.9% Client advocacy 0.6% 13 0.6% Child care services 0.6% 14 0.6% Removal of Barriers 12.4% 10.9% Case management, psychosocial 10.9% 7 11.3% Case management, medical 0.8% 8 0.7% Translation/interpretation 0.7% 10 0.7% Referral for health care/support 0.2% Patient Care Coordination & Language Care 12.6% 12.7% Legal services 1.1% 11 1.2% Permanency planning 0.1% 15 0.1% Economic Well-being 1.2% 1.3% Psychosocial support, HIV support 1.6% 12 1.5% Enhancement Services 1.6% 1.5% TOTAL*** 100.0% 100.0%



Figure 1-8 shows the actual expenditures by service category, including the support categories and quality management. Figure 1-8 Resource Expenditures for 2004 ($41.8 million)

Primary Health Care Cor

e 65%

Removal of Barriers 12

%

Patient Care Coordination 11%

Economic Well-Being 1%

Program Support 3%

Commission Support 1%

Quality Management 1%

Administrative Agency Support 5%

Enhancement 1%



OUTCOMES To assess the success of a continuum of care, medical and social outcomes must be measured and tracked. Basic outcomes for the HIV/AIDS continuum of care are mortality, morbidity, and quality of life. Mortality: Death Rates and Case-Fatality Rates Because of the advances made in treating opportunistic diseases and the level of access to care, AIDS mortality rates have shown dramatic decline over the past decade. However, the decline in death rates and the death rate at the end of 2003 are not equal among all racial/ethnic communities. As shown in Figure 1-9 the death rate (defined by the crude death rate per 100,000)7 has declined slower among the communities of color, particularly among Latinos. While from 1994 – 2000, we noted the much slower decline in death rate among African Americans, and by 2003, the rate among African Americans remains almost three times the rate of Anglos or Latinos, from 2000 through 2003, the death rate among African Americans has declined 40%. This compares to 44% among Anglos and 28% among Latinos. Nonetheless, with a death rate of 13 per 100,000, African Americans continue to be disproportionately impacted by AIDS and account for more than 28% of the AIDS deaths in 2003. As the population of Latinos in LAC continues to grow, the death rate among Latinos remains relatively low at about 3 per 100,000. However, this rate represents 158 deaths in 2003 and 36% of all deaths that year.

7 The mortality rate, or rate of death per 100,000 reflects everyone who was recorded by a doctor on the death certificate as dying of AIDS-related disease for a specific year. The mortality rate captures trends in current deaths due to AIDS, whether or not they were ever reported to HARS as a person with AIDS and regardless of when they were diagnosed. Death rates are not shown for APIs and Native Americans because there were less than 10 deaths reported annually.



Figure 1-9 HIV/AIDS Deaths by Ethnicity per 100,000 of L.A. EMA Population Rate (number of PLWH/A)

( 1997 1998 1999 2000 2001 2002 2003

Af Am 26.5(230) 21.0(180) 21.9(185) 18.9(179) 21.7(207) 12.6(121) 13.0(126)

Anglo 12.0(397) 10.0(326) 9.6(308) 7.5(233) 8.5(263) 4.6(142) 4.8(147)

Latino 6.9(287) 5.5(237) 4.6(205) 4.4(188) 4.7(208) 3.8(173) 3.4(158)

The large discrepancy in death rates between African Americans and other ethnic populations is somewhat moderated by examining the fatality rates shown in Figure 1-10. This “case-fatality rate” measures the death rate among the cohort diagnosed with AIDS during a certain calendar year. While death rates show the disproportionate impact of AIDS on the African American community, the case fatality rates show the survival rate once a person is diagnosed with AIDS and accesses the care system. For more recently diagnosed cases receiving current medication and care, it would be expected that case fatality rates would decline. Differences in case fatality by ethnic groups could indicate that African Americans tend to receive services at a later stage of infection or a disparity in services. As shown in Figure 1-10, fatality rates have declined drastically among all ethnic groups, going from about a 29% case-fatality rate in 1997 to less than 9% in 2003. In 2000, Anglos and Latinos had lower fatality rates than African Americans, but by 2003 the rate among African Americans dropped below that of Latinos. The small difference in case-fatality rates among ethnic populations suggests that while African Americans are disproportionately diagnosed with AIDS and die at a higher rate, once diagnosed with AIDS and receiving care, African Americans, Latinos, and Anglos are all surviving at about the same rate.



Figure 1-10 Case-Fatality Rates

Progression from HIV to AIDS In addition to declining death rates, early treatment of HIV disease should greatly reduce the progression of HIV to AIDS. In 1997, 2,179 persons were diagnosed with AIDS in the Los Angeles EMA, while in 2003, 1,318 persons were diagnosed, representing a decline of about 40%. New AIDS Cases by Ethnic Populations Figure 1-11 shows that while there has been a consistent decline in newly diagnosed cases from 1997 to 2003, not all ethnic populations have followed the same pattern. For instance, since 1997 the AIDS rate among Anglos has declined more than 75% while the decline among communities of color has been smaller, with a decline of 65% among African Americans, 58% among API, 52% among Latinos, and 41% among Native Americans. Furthermore, in 2000, the AIDS rate among African Americans (41 per 100,000) was over four times the rate among Native Americans (9 per 100,000), nearly three times that of Latinos (14 per 100,000) and Anglos (13 per 100,000), and well over 20 times the rate among APIs (2 per 100,000). In terms of absolute numbers needing services, the growing Latino population represents about 50% of the LAC population in 2003 and represents 43% of the newly diagnosed cases in 2003. While they are not disproportionately impacted by AIDS, they will continue to contribute the largest number of HIV cases over the next several years and their decline in the number of newly diagnosed cases is lower than either Anglos or



African Americans. African Americans while only about 10% of the total county population, account for more than 20% of the newly diagnosed cases. With the growing communities of color in LAC, Anglos now represent about 30% of the population, and, after Latinos, represent the next largest number of newly diagnosed cases. They are slightly disproportionately impacted accounting for 32% of the newly diagnosed AIDS cases. In planning services for the newly diagnosed, the most units of service have to be allocated for the Latinos living with HIV and AIDS. At the same time, the system has to prepare for a rapidly growing number of African Americans living with HIV and AIDS. Figure 1-11 AIDS Cases by Year of Diagnosis by Race

New AIDS Cases by Risk Group Figure 1-12 shows an unequal decline in diagnosed AIDS cases for risk groups. MSM (men having sex with men) show a significant decline in number of AIDS cases diagnosed yearly from 1997 through 2002, however an upward trend is noted from 2002 to 2003. It will be interesting to observe whether this trend is sustained through 2004. Nonetheless, in 2001, MSM account for over 56% of the newly diagnosed cases. The increase shown between 2001 and 2002 in newly diagnosed AIDS cases may reflect a higher rate of progression to AIDS among MSM that may be due to failed drug therapy or lack of adherence.



Since 1997, MSM/IDU have shown the second slowest decline in newly diagnosed AIDS and have remained at about five percent of new cases. Unlike other large EMAs like New York, where IDUs play a significant role in new infections, in Los Angeles County the number of new cases attributable to IDUs has remained relatively low and has in fact declined by more than 40%. There appears to be a small shift in new infections toward heterosexuals in the epidemic where, in 2003, the proportion of MSM/IDU and IDUs among new cases showed a decline from previous years, the proportion of heterosexuals has surpassed both of those groups and now account for over seven percent of the new cases. Figure 1-12 AIDS Cases by Year of Diagnosis by Risk Group

New AIDS cases by SPA Figure 1-13 displays the decline in AIDS cases reported yearly in the eight SPAs in the Los Angeles County. Consistently, since 1997, the Metro SPA has accounted for the largest proportion of all PLWA, with over one third of the cases, followed by SPA 8 the South Bay-Long Beach SPA with about 18% of the newly diagnosed cases. In the Metro SPA, 810 AIDS cases were diagnosed in 1997 and 453 in 2003. Next to the Antelope Valley SPA reporting eleven cases in 2003, the San Gabriel, East and Metro SPAs had the fastest decline in newly diagnosed AIDS cases.



Figure 1-13 AIDS Cases by Year of Diagnosis by SPA

Medication and Adherence Another outcome of the system is adherence to medication. Despite the availability of adherence programs, PLWH/A report mixed results. Taking Medication The use of combination therapy and prophylactics to prevent opportunistic infections has greatly improved the length and contributed to the quality of life of PLWH/A. Continued and improved health status outcomes will depend, in part, on the availability, access, and adherence to properly prescribed medical regimens. Based on data from the 2004 H-CAP needs assessment survey, both PLWA and PLWH are now more likely than in 2002 to be taking HIV medications. In 2004, sixty-six percent (66%) of PLWH and 87% of PLWA are currently taking medicines to treat their HIV infection. As shown in Figure 1-14, symptomatic PLWA (88%) are more likely to report taking medication than are



symptomatic (60%) or asymptomatic PLWH (73%). Surprisingly, however, symptomatic PLWH report a lower use of medication than asymptomatic PLWH. Figure 1-14 Medication by Stage of Infection

Unlike what was previously reported in the 2002 needs assessment report where men were more likely than women to be taking HIV medications, in 2004, there is no gender difference in current use of HIV medications. Over 75% of both men and women are currently taking HIV medications. This represents an increase in medication use among men and women and may reflect a greater level of access or more aggressive treatment as the number of people living with HIV increases. However, the increased level of access is not shared by all communities. The recently incarcerated, currently homeless, transgender persons, African Americans, MSM/IDUs and IDUs report a lower use of medication than any other population. More than half of the Anglo IDU are currently not taking medications to treat their HIV. This may be due to a number of factors including the co-morbidity with substance use and or limited access to health care due to their substance use. These barriers are further explored in the section on these special populations. Adherence Among PLWH/A who have been prescribed HIV medication, 41% report never skipping their medications, and at the other extreme, 8% have stopped taking their medicines. This again shows an increase in medication use and adherence by PLWH/A in 2004 compared to those in the 2002 survey, where nearly twice as many (14%) had stopped taking medications. Figure 1-15 shows adherence to medications across different sub-populations. Data from the 2004 needs assessment reveals that: • Men and women tend to report about the same level (60%) of difficulty adhering to their

medication schedule. However, not shown in the graph is that men are more likely (12%) than women (9%) to report never have been prescribed medications.

• APIs and Latinos are more likely to adhere to their medications than other ethnic population, while African Americans are the least likely to adhere. Between 10% and 12% of PLWH/A

0%

20%

40%

60%

80%

100%

% o

f P

LWH

/A

% taking antiretrovirals

72.9%

60.1%

85.3%

87.7%

% taking antibiotics

10.3%

20.6%

43.5%

49.1%

PLWH asymp

PLWH symp

PLWA asymp

PLWA symp



of all ethnic groups report never have been prescribed medications. APIs are the least likely to stop taking medications.

• Almost 20% of PLWH have not been prescribed medication for treating their HIV and among those on medications, 67% report difficulty adhering to their medication.

• Notably, undocumented PLWH/A report the highest level of adherence with more than half of those currently taking medications never skipping a dose.

Figure 1-15 PLWH/A Adherence to Medication

Figure 1-16 and Figure 1-17 show the top 10 reasons for discontinuing medications for all PLWH/A. The findings indicate that: • Forgetting to take medications, side effects and not wanting to take the medications are the

top reasons for discontinued or inconsistent use of medications. • Among all groups, forgetting to take them (57%) is typically the major reason for skipping

medication, with over 70% of youth and transgenders forgetting to take their medication. • PLWA are more likely to forget to take their medications than are PLWH. • The next two most common reasons cited for skipping doses were side effects of medications

(28%) and not wanting to take medications (22%). Nearly half of the currently homeless and one third of the Anglo PLWH/A report having problems with side effects.

• Five percent of the PLWH/A reported being homeless as one of their reasons for skipping medications. However, among the currently homeless, less than 15% report their housing situation as a factor affecting their medication adherence.

0%

10%

20%

30%

40%

50%

60%

70%

80%

% o

f P

LWH

/A

Never Stopped 41.0

% 41.1% 40.6

% 42.0% 31.2

% 45.7% 44.5

% 42.9% 30.3

% 20.1% 48.9

% 48.3% 33.2

% 52.2%

Have skipped 51.3

% 51.4% 50.6

% 49.5% 60.0

% 47.6% 54.0

% 50.4% 59.2

% 68.2% 42.0

% 45.4% 57.6

% 39.3%

Stopped taking 7.7

% 7.5% 8.8

% 8.6% 8.8

% 6.8% 1.5

% 6.7% 10.5

% 11.7% 9.0

% 6.3% 9.2

% 8.4%

Total Mal

e Female Angl

o African A

m Latino

API and othe

r MSM MSMID

U IDU Heter

o PLWA PLW

H Undoc



Figure 1-16 Reasons for Skipping Medications by Ethnicity

Figure 1-17 Reasons for Skipping Medications by Mode of Transmission

Overall, 12% of PLWH/A report they stopped taking their medications under advice from a doctor. Women (17%) are more likely than men to cite this reason for skipping medications. More than 34% of the recently incarcerated also stopped taking their medications under a doctor’s advice. Opportunistic Infections (OIs) The incidence of OIs, particularly PCP can be used as an outcome for the continuum of care. For the most part, PCP is preventable provided the PLWH/A remains on their medical regimen and, should their T-cell count fall below 300, begin a prophylactic of antibiotics. Controlling PCP in



the epidemic, then requires early detection, adherence, and regular monitoring. As shown in Table 1-11, when considering the rates of PCP among the general population, the trend for PCP varies significantly by ethnic groups. While African Americans have shown a dramatic decline from 1999 through 2003, in 2003, their rate remains more than double that of Anglos and Latinos. Rates among Latinos and Anglos have fluctuated up and down but have remained below three per 100,000 over the past seven years. Table 1-11 PCP by Ethnicity (per 100,000)

However, when examining the PCP rate among the cohort of PLWA, Table 1-12 shows that the rate is not so dramatically different for the different ethnic groups. While in 1997 the rate for African Americans was much higher than that of Anglos or Latinos, by the early 2000s the rate among all ethnic groups begins to look similar. In fact, by 2003, the rate of PCP among Latino PLWA surpasses that among African Americans. This suggest that once in care, while the rate remains slightly higher for PLWA of color, all PLWA are similarly likely to develop PCP.



Table 1-12 PCP by Race among PLWA (per 100 –year)

Quality of Life Other outcomes measured for the system of care are current and changed physical and emotional health. While no baseline physical or emotional health measures are available for PLWH/A, survey participants rated their current physical and emotional health and then compared it to “when they first sought treatment for their HIV infection”. The assumption tested is that access to care, and in particular to new HIV drug therapies, have a positive impact on the physical and mental health of PLWH/A seeking care. Consequently, improved physical or emotional health after seeking treatment would suggest the care system is meeting one of its major objectives. Drug therapies, however, may not have the same beneficial affect across all populations, and some PLWH/A may experience severe side effects that compromise both physical and emotional health. Additionally, there are disparities in access to care and treatment that may also impact quality of life. As a result of these factors, it is expected that some of the survey respondents will report decreasing physical and emotional health regardless of the quality of the treatment. Figure 1-18 and Figure 1-19 report the current and perceived change in physical health and emotional health. It is divided into three independent groups: 1) PLWH who are asymptomatic 2) PLWH who are symptomatic, and 3) those who report being diagnosed with AIDS. Of those living with AIDS, more than 85% said they were symptomatic, with 62% reporting disabling symptoms. • The majority of asymptomatic PLWH are doing “good” to “excellent” and many feel they are

much better than when first diagnosed. Fifty-four percent say that their physical health is



better now as compared to when they first sought treatment and another 24% say their health is the same.

• In contrast, about 52% of symptomatic PLWH report that their physical health is currently fair to poor. Nearly one quarter these PLWH say they are doing worse than when first diagnosed which may be connected to their recent symptoms and possibly the start of HIV medications that would eventually bring side effects.

• While PLWA (14%) are more likely than asymptomatic PLWH (1%) or symptomatic PLWH (8%) to report poor health, over 75% say they have fair to good health. Overall, PLWA report comparable improvement in health compared to those at other stages of infection since they first sought treatment for their HIV infection. In fact, a slightly higher percentage of PLWA (57%) than asymptomatic PLWH (54%) report improved health.

• Overall, the care system appears to be addressing the health needs of PLWH/A and assisting them in maintaining and in many instances improving their health status. Less than 10% of the total sample of PLWH/A report poor health. Whether it’s due to increased medical monitoring, greater access to social services or heightened awareness about individual health practices, the majority (56%) of PLWH/A report doing better today compared to when they first sought treatment.

The emotional health of PLWH/A is better than their physical health. • Among PLWH, the majority (61%) report better emotional health than their initial diagnosis

yet 10% of the asymptomatic PLWH are doing worse than when they first sought treatment. • More than 40% of symptomatic PLWH are doing good to excellent and more than half are

doing better emotionally than when first starting treatment. • PLWA are doing as well emotionally as PLWH. They are feeling better than when first

seeking treatment (58%). This may have to do with success of medication therapy, some may feel better because they are dealing with drug addictions as noted in the consumer forums, and others may have consistent medical and social support for the first time in their lives.

• Men tend to report poorer current emotional health than women do. This may reflect the greater length of time living with HIV but may also reflect a lower level of access to support systems than women have.

• Interestingly, the currently homeless (69%) and the transgender PLWH/A (72%) report the greatest improvement in their emotional health since they first sought treatment.

Overall, based on improvement in both physical and emotional health, the care system is making an impact. As a possible indication of the success of aggressive medical intervention, PLWA are able to manage their infection and report the greatest improvements physically amongst the different stages of infection. Also, asymptomatic PLWH, whose physical health has remained relatively constant, have nonetheless benefited from improved emotional and are the population with the greatest improvements emotionally.



Figure 1-18 Quality of Life – Physical Health

Figure 1-19 Quality of Life – Emotional Health



PROFILE OF THE LOS ANGELES EMA AND THE EPIDEMIOLOGY OF PLWH/A As expressed in the values of the Commission, another criteria for estimating need is to assure that services are available, accessible, culturally appropriate, and affordable. That means understanding the epidemic by various racial and ethnic populations, risk groups, and special populations. In addition, the Commission has begun the process of more fully understanding the geographic dynamics of the epidemic to further apportion services equitably throughout Los Angeles County. In this way disparities among key subgroups and different areas can be closed. Los Angeles County and the Los Angeles County EMA include the same geographic boundaries. Population estimates based on the 2000 census reports that Los Angeles County had over 10 million (10,027,533) residents, making it the most populous county in the nation. With 4,000 square miles of land, it has the second largest landmass of all the counties in the U.S. In 2003, the AIDS rate of 16.6 per 100,000 was above the national rate of 15.2 per 100,000. When planning for HIV and AIDS services, knowing the number of persons living with HIV and AIDS, and the number currently accessing services, provides a theoretical referent for the number of PLWH/A who could seek services in the continuum of care and the number who have sought services in the past. Table 1-13 shows that the system currently has about 43,454 PLWH/A who know their status and thus are in need of some care services. Notably, the number living with HIV is an estimate as HIV reporting only began in July 2002 in California. The formula for the calculations is explained in Attachment 8. Table 1-13 ESTIMATE OF PLWH/A

Living with AIDS in the Los Angeles EMA in June 2004 19,7521

Estimated Living with HIV (not AIDS) in the Los Angeles EMA through June 2004 (aware) 23,702

Living with HIV/AIDS in Los Angeles EMA in June 2004 who know they are infected 43,454

Estimated living with HIV/AIDS unaware (33% of total aware cases) 14,200

Estimated Total PLWH/A 57,654

Number of PLWH/A who receive care from CARE Act funded providers (unduplicated) 22,4032

Number of PLWH/A who receive outpatient medical care from CARE Act funded providers 15,7313 1. From HARS, through June 2004 2. From OAPP client utilization data collection system, through 2003 3. From OAPP client utilization data collection system, through 2003

In theory, the need for CARE Act-funded services is measured by first understanding the current utilization of services outside of the CARE Act-funded service system, and then calculating the “residual” as the number needing CARE Act funded services. Based on the estimates presented in Table 1-13, 22,403 PLWH/A and collaterals (family members, children, etc.) are receiving at least one CARE Act-funded service. Consequently,



21,051 PLWH/A, about 48%, of those who know their status are not seeking care through a CARE Act-funded provider. Assuming that the client tracking system is recording most of those receiving CARE Act-funded services, one challenge is determining how many of the 48% of PLWH/A not accounted for in the client tracking system need, but are not receiving, CARE Act-funded services and how many receive these services from other sources. In addition, in allocating funding, the legislative responsibility of the Commission is to assure that emergency services are used as funds of last resort. That is, to assure that other available funding is used for services before using the Ryan White CARE Act funds. Consequently, the task is to estimate how many of those accessing CARE Act-funded services or in need of services could be accessing other reimbursement streams such as Medi-Cal, Medicare, federal insurance programs such as CHIP for low-income mothers and children, or private insurance. Persons Living With AIDS In planning HIV/AIDS services, the HIV/AIDS continuum of care will need to provide services to an increasing number of PLWH/A. While the rate of transmission is dropping, it is more than offset by the declining mortality rate. The figures on PLWA alone show a dramatic increase since 1997. The number of PLWA in the Los Angeles County has grown from 14,811 in 1997, to 19,752 in June 2004. As HIV transmission continues and HIV progression to AIDS continues to decline, the number of PLWH is likely to have shown an even more dramatic increase. The Risk Group Profile of PLWA The AIDS epidemic in Los Angeles County is MSM, and has stayed at about the same proportion over time. In Figure 1-20, the percentage of MSM living with AIDS has decreased from 67% in 1997 to 64% in June 2004, but unclassified PLWA has increased and it is assumed most are likely to be MSM. Generally, MSM represent about two-thirds of PLWA. With over 13,000 MSM (including MSM/IDU) living with AIDS in June 2004, MSM will continue to comprise the vast majority of PLWA for the foreseeable future. Of all MSM living with AIDS in June 2004, approximately 45% are Anglo, 34% are Latino, and 17% are African American. MSM, like others in the epidemic, are increasingly represented by communities of color. The proportion of heterosexual IDUs has remained constant, representing about seven percent (7%) of the PLWA. In June 2004, the 1,393 PLWA who are IDUs are slightly more likely to be African American (37%) than Latino (31%) or Anglo (30%). Given the much lower percentage of African Americans in the population, they contribute a disproportionate number of IDUs living with AIDS to the overall epidemic. The proportion of heterosexuals (non-IDU) living with AIDS has increased from 6.6% in 1997 to 7.4%, or about 1,455 heterosexuals living with AIDS in June 2004. Since 1997, this number represents nearly a 50% increase from the 980 cases reported in 1997, and is one of the largest increases in PLWA of any risk group over the past three years. Almost half (49%) of the



heterosexual PLWA are Latino, 32% are African American, and 16% are Anglo. Almost 70% of the heterosexuals are women. Figure 1-20 Living with AIDS by Risk Group

The Gender Profile of PLWA As shown in Figure 1-21, males continue to represent about 90% of PLWA. However, females living with AIDS have increased by nearly 40% since 1997, compared to about a 32% increase among men. In June 2004, women account for the vast majority (68%) of heterosexuals living with AIDS and about 32% of the IDUs. Since 1997, the proportion of female PLWA has increased slightly from about 10.2% to 10.7% in June 2004.



Figure 1-21 PLWA by Gender

The Ethnic Profile of PLWA According to the most recent population estimates8 , the racial/ethnic makeup of Los Angeles County as of 2003 is 46% Latino, 30% Anglo, 13% Asian/Pacific Islanders, 10% African Americans, and less than 1% American Indian. Figure 1-22 shows, that the HIV/AIDS epidemic has affected ethnic groups quite differently, and shows the epidemic is continuing to shift from the Anglo communities to communities of color. Figure 1-22 shows the increase in PLWA by ethnicity. Since 1997, there is a considerable increase in Latino living with AIDS and in June 2004, Latinos represent the largest population (38%) of PLWA, followed closely by Anglos (37%). While Anglos have increased from 6,212 living cases in 1997 to 7,334 cases in June 2004, a 49% percent increase among Latinos living with AIDS from 1997 to June 2004, means that now a greater number of Latino PLWA (7,502) than Anglos (7,334) are in need of services in June 2004. African Americans have increased from 3,250 to 4,245, representing a 31% increase. Together, Asian Pacific Islanders and Native American/Alaskans (noted in graphic as Other) comprise about three percent (3.1%) of PLWA in June 2004.

8 Epidemiology Unit in Health Assessment, DHS, LA County



Figure 1-22 Living with AIDS by Ethnicity

Subpopulations with Small Numbers of PLWA While there are few PLWA who are Asian Pacific Islanders, Native American or under 24 years of age, they have special needs, which include the provision of culturally appropriate services. For young PLWA, particularly adolescent PLWA, providers must take into consideration legal or emotional issues of minors and those with gay, bisexual and transgender sexual orientation. In June 2004, there were 510 Asian Pacific Islanders, 99 Native Americans and 276 young adults living with AIDS. While the proportion of new cases among young adults has remained at about three percent since 1997, the actual number of persons ages 13-24 living with AIDS has decreased dramatically since that time, going from 411 persons to 228 persons. Young adults living with AIDS display a wide range of risk factors. They were most likely to be MSM (28%); however, about 24% report exposure through transfusion or blood products and an additional 24% report maternal exposure. The young adults living with AIDS who report maternal exposure suggest the success of the medical regimen, with pediatric cases surviving into adolescence with AIDS. A large percentage (16%) remains unclassified. To obtain a more complete picture of the epidemic and to determine the extent of the need for early treatment, the next section discusses and compares estimates of HIV along with reported prevalence of AIDS.



PLWH/A: Disproportionate Impact The HIV Epidemiology Program estimated AIDS Incidence in calendar year 2003, and the number of PLWA and PLWH as of June, 2004. From these estimates, trends in HIV can be discussed. Ethnic Racial Distribution of HIV and AIDS Figure 1-23 shows that the HIV/AIDS epidemic has affected ethnic groups quite differently, and demonstrates that the epidemic is shifting from the Anglo communities to communities of color. More than two thirds of the people living with HIV (who have not progressed to AIDS) are from communities of color. As observed among the PLWA, Latinos (42%) also make up the largest proportion of PLWH. African Americans account for 24% and APIs combined with Native American Indians account for an additional three percent of PLWH. The first set of bars in Figure 1-23 indicates that Latinos represent 46% of LAC residents. While they represent the highest percentage of PLWH and PLWA, Latinos are not disproportionately affected. Anglos, the second largest population group in LAC, are disproportionately represented in AIDS cases, but have far fewer HIV cases. On the other hand, African Americans, with about 10% of the population, account for 22% of the PLWA and 25% of those living with HIV, indicating the disproportionate and growing impact of the epidemic on the African American community. Notably, APIs, the third largest ethnic/racial community with 13% of the LAC population, represent less than 3% of PLWH/A. Native Americans and other ethnic groups have less than 1% of the populations. However, as indicated in the insert in Figure 1-23, they are disproportionately affected by the epidemic and ways to effectively reach Native Americans are being explored by the Commission. Figure 1-23 Impact of HIV/AIDS Epidemic on Racial/Ethnic Communities in LAC

0.0%

0.2%

0.4%

0.6%

0.8%

Am Indian

% A

m In

d



Regional Variation The rate of infection in each SPA varies widely. As shown in Table 1-14, AIDS rates ranges from a high of 38 per 100,000 in the Metro SPA to 3 per 100,000 in Antelope Valley. What the table suggests is that the Metro SPA will continue to be the largest epicenter of the Epidemic in LAC. The South Bay-LB SPA will also continue to be a second, epicenter, and based on trend data, it will grow as a proportion of all HIV and AIDS cases over time. After the Metro SPA, the South SPA, with a large proportion of African Americans, has the second highest rate of AIDS and it will continue to grow as a percentage of HIV and AIDS in LA County. While rates of infection are useful in comparing areas and projecting increase in service need, in planning services, numbers of person infected provide a more concrete indication of number of persons that have to have services. Consequently, Table 1-14 also shows the numbers of persons in LAC by SPA and the number living with AIDS and HIV. It shows that the Metro SPA had 7,581 PLWA and an estimated 9,097 PLWH in June 2004 that should receive services. At less than half the number, the South Bay SPA has over 3,368 PLWA and 4,042 PLWH, and San Fernando has about 2,653 PLWA and 3,184 PLWH in need of services. Table 1-14 Population and PLWA by SPA

*SPA

Rate of AIDS Per 100,000 POP % POP PLWA

PLWH (estimate) % PLWH/A

1 Antelope Valley 3.3 334,366 3.3% 209 251 1.1% 2 San Fernando Valley 8.6 2,102,020 21.0% 2,653 3,184 13.4% 3 San Gabriel Valley 5.2 1,827,448 18.2% 1,371 1,645 6.9% 4 Metro 38.2 1,186,851 11.8% 7,581 9,097 38.4% 5 West 12.2 646,290 6.4% 1,159 1,391 5.9% 6 South 17.5 1,003,993 10.0% 2,058 2,470 10.4% 7 East 5.9 1,350,923 13.5% 1,246 1,495 6.3% 8 South Bay-Long Beach 15.4 1,575,632 15.7% 3,368 4,042 17.1% TOTAL 13.1 10,027,523 100.0% 19,752 23,702 100.0% Figure 1-24 displays the regional profile, showing that PLWH/A are much more likely to reside in the Metro and South Bay-LB SPA than other SPAs. San Fernando, with about 21% of the population, has about 13% of PLWA, and San Gabriel, with about 18% of the population accounts for about seven percent of PLWA. On the other hand, the Metro SPA, with less than 12% of the population has nearly 40% of PLWA, and South Bay Harbor has about 16% o the population and 17% of PLWH/A. Notably the two SPAs with the most heavily represented communities of color have disproportionately more PLWH/A.



Figure 1-24 Population and PLWH/A by SPA

The map in Figure 1-25 confirms the unequal distribution of AIDS in LAC. This is updated from 2002, but the pattern for PLWA has not changed. Notably the zip codes with highest incidence are located in the Metro SPA, particularly West Hollywood (zip codes 90046, 90069, and 90028), East Hollywood/Echo Park (zip code 90026) and South Bay Harbor SPA, particularly in the Long Beach area (zip codes 90802, 90801, and 90832). The map shows the two epicenters in LAC and shows its spread outward. The West Hollywood epicenter appears to spread northwest, with the more current spread northward into San Gabriel, along route 170 and route 5. South, it would appear to follow route 110. The Long Beach Epicenter seems to spread north, but also appears to be spreading more slowly. As HIV data becomes more reliable, the regional dynamic of those newly infected is likely to look different, with the South SPA showing one of the fastest increases in the number of HIV infections.



Figure 1-25 AIDS by Zip



The differences in the impact of HIV and AIDS by SPA is further displayed in Figure 1-26 where the percentage of population (first bar in series), percentage and percentage of PLWH/A (second bar in series) are compared for each SPA. The “diamonds” in the graph indicate the percentage of the population and percentage of PLWH/A for LAC. Thus if the diamonds are above the bars it indicates that the impact in the SPA is relatively less than the overall impact in LAC. On the other hand, if the diamonds fall in the bars, the impact in the SPA is relatively greater than the impact in LAC. Last, in looking at the figures, the pattern of the diamonds and bars indicate if the pattern in LAC and the pattern of PLWH/A are similar or different. Highlights include: SPA 1, Antelope valley has three percent of the total population and is the least populated SPA. Anglos (48%) make up the largest racial/ethnic group, followed by Latinos (32%) and African Americans (16%). Anglos represent over 40% of the PLWH/A, but African Americans are disproportionately represented with over 30% of PLWH/A, compared to 16% of the population in SPA1. With the declining epidemic among Anglos and the low population, SPA1 will continue to have few cases of HIV/AIDS with the fastest increase being among African Americans. SPA 2, San Fernando, has just about a fifth of the population of LAC, and its racial/ethnic mix is more likely to represent Anglos (48%) and Latinos (38%) than APIs (10%) or African Americans (4%). About 50% of HIV and AIDS cases are among Anglos, followed by Latinos (36%). African Americans are disproportionately impacted accounting for more than 11% of the PLWH/A in SPA2. Nonetheless, with over 48% of the PLWH/A among Anglos in SPA2, along with SPA4 and SPA8, SPA2 accounts for the third greatest number of Anglos to the epidemic. SPA 3, San Gabriel, like SPA 2, has just under a fifth of the population of LAC, but has a significantly different profile than San Fernando. It has more APIs (25%) than any other SPA, and HIV and AIDS rates are low. Latinos are the largest ethnic/racial group in SPA3 and account for the highest number of HIV and AIDS cases. Anglos, tied with APIs as the second largest population group, have the next highest percentage of HIV and AIDS. However, African Americans, with just 5%of the population, account for 19% of the PLWH/A cases in San Gabriel. Given current rates of infection, African Americans could soon overtake Anglos as the second highest number of PLWH/A. SPA 4, Metro, has 12% of the overall population and, compared to LAC, has more Latinos and APIs. It is one of the epicenters in LAC, with about 39% of the HIV and AIDS cases in LAC. The epidemic in the Metro SPA is fueled by Anglos, who have disproportionate number of HIV and AIDS cases and Latinos, although the percent of Latinos infected is relatively low compared to their overall representation in SPA 4. Like other SPAs the relatively small African American population is disproportionately infected, and APIs account for a small number of the PLWH/A. MSM represent over 70% of PLWH/A and are, by far, the largest risk group represented in the Metro SPA.



SPA 5, West, has about 6% of the population of LAC. Anglos represent almost 65% of the population, and account for the largest group among PLWH/A (58%). SPA5 has the lowest percentage of Latinos in LAC. Latinos account for about 16% of the population, yet account for over 20 % of PLWH/A in SPA5. African Americans, while representing only 7% of the population in the West SPA, have almost 17% of the PLWH/A. Like the Metro SPA, over 70% of PLWH/A are MSM. SPA 6, South, has 10% of the overall population and the epidemic is driven in large part by the African American population. While African Americans represent 33% of the population, they represent about 60% of PLWH/A. Over 60% of the population in the South SPA is Latino, yet, they represent less than 40% of PLWH/A. There are few Anglos living in the South SPA, and while they are disproportionately infected, they represent under 6% of PLWH/A. MSM represent the major risk group for PLWH/A, but almost one quarter of the PLWA are unclassified or of unknown risk. SPA 7, East, has 13% of the population in LAC. Latinos represent over 70% of the East SPA residents, followed by Anglos (17%) and APIs (9%). The East SPA is less than 4% African American. SPA 7 has about 6% of PLWH/A, and Latinos account for over 75% of the PLWH/A. The Latino community will continue to populate the epidemic in this area. Like other SPAs, the African American communities are disproportionately infected, but their small numbers in the East SPA suggest a growing but small impact on the overall number of cases. SPA 8, South Bay, has 16% of the population of LAC. Along with the Metro SPA, it is an epicenter in LAC, and its demographics suggest a growing epidemic of PLWA and PLWH. South Bay has a diverse population, with Latinos representing 37% of the population, Anglos 31%, African Americans 17%, and APIs 15%. Anglos and African Americans are disproportionately impacted by HIV and AIDS in this SPA, accounting for nearly 70% of the PLWH/A. At the current pace, it can be expected that African American PLWH/A will continue to increase yet, Anglos will continue to be the majority of PLWH/A.



Figure 1-26 Regional Variation - PLWH/A



CO-MORBIDITIES The following data for co-morbidities is mostly derived from the 2004 Needs Assessment Survey and HARS. Detailed demographic and co-morbidity data from the 2002 Need Assessment. The survey is shown in Attachment 1. Substance Use IDU and non-IDU IDU was never the major mode of transmission for HIV in LAC, and in 2004 it accounts for about 7% of the PLWH/A with MSM/IDU representing another 6% of PLWH/A. Still, infected drug users are among the most vulnerable populations as substance use is often accompanied by other co-morbidities such as homelessness, mental illness, hepatitis and other STDs, and poverty. While the current rate of infection among IDUs in the LAC is relatively low, the continuation of needle sharing and an increasing percentage of non-IDU substance users suggests a highly vulnerable population to infection and re-infection. In planning for the priority and allocations of Ryan White Care funds to treat HIV and AIDS, different social and economic indicators can indicate greater need. The co-morbidity of substance use and HIV includes drugs that are typically injected such as heroin and crystal meth, but also includes non-injecting substances such as marijuana and “party drugs” such as ecstasy and poppers that have been related to unsafe sexual practices that place individuals at high risk for HIV infection. The survey data of self-reported drug use indicates that 34% of all PLWH/A report using other, non-injection substances, an increase from the self-reported 21% from the 2002 Need Assessment. About 25% of PLWH/A report using crystal meth, a physiological stimulant that can increase sex drive and almost 60% report using Cialis, Viagra, or Levitra, a sexual potency enhancer sometimes associated with sex parties. Twenty-five percent also report using poppers, another popular “club” drug that can increase sex drive and is associated with momentary loss of control. Below, IDUs and MSM/IDUs are discussed separately as they may be have different service needs. IDUs (Not MSM/IDUs) IDU (PLWH/A who have injected drugs in the past or self-report their mode of transmission to be through sharing needles and do not have sex with men) tend to be male (66%) and 64% are between the ages of 20 and 44, with a third of the IDUs report being 45 years or older. IDUs tend to be less educated with over half never completing high school or getting a GED compared to about one third of the overall population of PLWH/A. While less than five percent of PLWH/A are currently homeless, almost twice as many IDU (9%) are currently homeless. About 32% of IDUs have been homeless in the last two years, with about 13% having been homeless for at least 12 months. IDUs (23%) are much more likely to have sent time in jail than MSM (8%) or heterosexual (13%) PLWH/A However, MSM/IDUs (34%)



are even more likely to have spent time in jail than IDUs. In addition, IDUs are far more likely to than any of the other risk groups to have had Hepatitis C (60%) and are also more likely to have been admitted overnight in a hospital for mental health problems (35%). MSM/IDUs MSM/IDU are more likely to be Anglo (43%) and identify as bisexual (29%) than other risk groups. While more MSM/IDU (77%) have completed high school than IDU (53%), they are similarly likely to be employed (18%) and to report less than an $18,000 annual income (92%). MSM/IDUs (34%) are more likely than IDUs (23%) to have spent time in a jail or correctional facility in the last two years. Like most other PLWH/A, MSM/IDU are likely to live in a rented apartment (67%), however, they are more likely to reside in a drug treatment facility (12%) or assisted living situation (8%) than other PLWH/A. MSM/IDU are more likely than PLWH/A of other risk groups to have sexually transmitted illnesses. Eighteen percent (18%) report having had syphilis in the past two years, 18% gonorrhea, and 15% report genital warts. They are the group most likely to receive mental health services, with 88% having received mental health counseling since being diagnosed with HIV, 90% receiving individual counseling 74% taking medications for behavioral or psychological problems. A significantly higher percentage than other risk groups, has been diagnosed with anxiety (55%) and depression (67%). Poverty Persons living in poverty often cannot afford basic needs such as food and housing, health care or insurance that would pay for health care, or, if they have insurance, the co-pays that often accompany claims. Poverty is related to unemployment, homelessness and substance use, and these, in turn are related to HIV. According to the 2004 poverty guidelines, the poverty level for a one-person households is $9,310 and 300% of federal poverty level (FPL) is $27,930. For three person households 100% of the poverty level is $15,670 and 300% FPL is $47,010 (See Attachment 9) Notably, PLWH/A are more likely than the general population to live in poverty, with more than 60% of the participants in the 2004 needs assessment survey reporting incomes below the poverty level. Not surprisingly, over 96% of the PLWH/A in the 2004 needs assessment report incomes below the 300% FPL, the usual cutoff for receiving CARE Act funded services. As shown in Figure 1-27 women are more likely than men to live in poverty. Among the risk groups, almost 80% of heterosexuals report living in poverty. Also, PLWH/A from communities of color are much more likely than Anglos to live in poverty, with more than three quarters of Latinos reporting annual incomes below the poverty level. Recently incarcerated, undocumented and women of child-bearing age are among the top groups most likely to live in poverty.



Figure 1-27 PLWH/A Living Below Poverty Level

Insurance Table 1-15 shows the insurance status of the population in LAC and each of the SPAs. It also shows the percentage of PLWH/A with different types of insurance. Over 30% of the adults in LAC do not have insurance, and 20% of the children are uninsured. LAC has a higher rate of adults uninsured than the entire state of California. The highest rates of uninsured adults are in the South (36%) and Metro SPA (38%), followed by the East SPA (29%). These are the three areas with the highest prevalence of HIV and AIDS, and both have large Latino communities, which are much more likely to not have insurance than other racial and ethnic communities. As shown in Table 1-15, 49% of Latinos are uninsured, compared to 25% of APIs, 19% of African Americans, 18% of Anglos, and 16% of Native Americans. Based on 2004 H-CAP Questionnaire (see Table 1-15) about 36% PLWH/A report being uninsured. Those PLWH/A who are insured, however, are much more likely to report Medi-Cal or Medicaid (50%) and Medicare (22%), than private insurance (10%). Those in the OAPP Client Database are even more likely to be uninsured (51%) reflecting the greater reliance on Ryan White Title funded programs by uninsured PLWH/A. According to the H-CAP data, Latinos (54%) are much more likely to be uninsured than either Anglos, African Americans, or APIs. This is directly correlated to the 81% of undocumented PLWH/A who report being uninsured. Not surprisingly, PLWH (48%) are less likely to have insurance than PLWA (22%). Special populations that have a lower rate of insurance include youth (45%), recently incarcerated (49%), transgenders (54%), and undocumented (82%).



Table 1-15 Insurance by Ethnicity and SPA

% adults with no health insurance

% children w/o health insurance

% Medi-Cal

% Medicare % Private

Gen Pop California 22.2* 19.0* Los Angeles County 31.4* 20.3* 8.6* 0.6* 59.3* Race Latino 48.9* 9.3* 0.2* 41.5* Anglo 18.1* 4.9* 1.0* 75.9* API 25.2* 8.6* - 66.0* African American 18.8* 18.6* 1.6* 61.0* Native Americans 16.4* 24.4* - 56.5* SPAs Antelope Valley 17.6 8.3 13.7* 1.8* 63.7* San Fernando 24.5 8.3 5.8* 0.4* 66.1* San Gabriel 22.3 7.2 8.2* -* 62.8* Metro 37.6 14.3 9.9* 0.8 45.8* West 16.0 6.7 6.1* -* 70.8* South 36.4 17.7 14.7* 0.9* 37.0* East 28.7 10.2 8.0* 0.6* 58.3* South Bay 22.5 9.6 9.1* 1.1* 63.2* PLWH/A PLWH/A (2004 Survey) 35.5 NA 50.1 21.5 10.2 PLWH/A (OAPP clients) 54.9 NA 18.7* 3.3* 6.7* *Data based on 2002

STDs Since the beginning of the AIDS epidemic, researchers consistently have suggested an association between HIV/AIDS and other STDs. Numerous national studies have indicated at least a twofold to fivefold increased risk for HIV infection among persons who have other STDs. Syphilis While in the late 90s the number of early latent syphilis cases declined dramatically, by 2000, primary and secondary as well as early latent syphilis began on an alarming upward trend. As shown in Figure 1-28, from 2000 to 2003, primary and secondary increased by almost 70%, going from 136 in 2000 to 442 in 2003. Similarly, early latent cases increased from 200 in 2000 to 365 in 2003.



Figure 1-28 Syphilis Cases (1998 -2003)

Seven percent (7%) of the PLWH/A in the 2004 H-CAP report having had syphilis in the past year. Syphilis tends to be more prevalent in PLWH/A who are Latino (11%), MSM/IDU (18%), recently incarcerated PLWH/A of color (17%), undocumented (15%), and transgender individuals (30%). These populations are mostly male, have more sexual partners than other populations. The rate among Latinos may also be partially explained by their lack of access to regular medical care. Gonorrhea Like primary and secondary syphilis, gonorrhea rates have climbed since 1998. As shown in Figure 1-29, the rate of gonorrhea has increased by 25% from 1998 to 2003, going from 5,986 cases to over 8,000. Figure 1-29 Gonorrhea Cases (1998 - 2003)



PLWH/A in H-CAP report a much higher rate of gonorrhea (8%) compared to the rate reported by PLWH/A in 2002 Needs Assessment (2.4%). Gonorrhea occurs more in men (9%), Anglos (11%), the currently homeless (18%), and MSM/IDU (18%). The currently homeless population and MSM/IDU also have higher rates than other populations of not having seen a doctor for more than twelve months (28% and 42%, respectively). This may suggest a more aggressive and successful treatment of gonorrhea among other PLWH/A who attend regular medical appointments. Hepatitis Hepatitis C The California Department of Health Services estimates there are approximately 200,000 people (2% of the population) with hepatitis C living in Los Angeles County with an incidence rate in 2002 of .26 per 100,000 population. In 2002, there were 9,691 case reports of HCV infection–including acute, chronic, and resolved cases–a 15% decrease from 2001. Of those cases, only two could be confirmed as acute infections. The highest risk for the virus is through nasal ingestion of cocaine, intravenous drug use, using shared infected needles in unlicensed tattooing—as occurs in prison—and unsterilized tools in body piercing. Findings from the 2004 H-CAP data reveal that about 15% of PLWH/A have had hepatitis C in the last 2 years. Among IDU this rate is 60% and among MSM/IDUs it is 35%. It is also very high among homeless populations (25%), recently incarcerated (35%), and transgenders living with HIV and AIDS (37%). These populations have a high co-morbidity of substance abuse. Hepatitis A and B9 Hepatitis A rates have fluctuated since 1993, ranging from about 10 per 100,000 in 1998 to a high of about 16 per 100,000 in 1997. The 1997 hepatitis A crude rate (16.4 per 100,000 population) in 1997 represented a 10% over the 1996 rate of 14.9 per 100,000. By 2000, the rate of HAV dropped to about nine per 100,000. Within SPAs, SPAs 4, 6, and 7 have the highest rates (9.9, 9.8,and 8.8 per 100,000, respectively), while SPAs 3, 5, and 8 have rates significantly lower than the county average. From 1992 to 1993 there was steep decline in the incidence of Hepatitis B in the LAC. Since then the rate has leveled off and ranged from about one to five cases per 100,000. In 2000, there were 65 cases of HAB reported, with an incidence rate of less than one case per 100,000. According to the H-CAP data, 14% of PLWH/A report having Hepatitis A or B in the last two years. It occurs more often in males (15%) and MSM/IDU (22%). African Americans 9 Text for rates unchanged from 2002 Needs Assessment



and Anglos are equally likely to have had Hepatitis A or B in the past year. Populations with higher occurrences of Hepatitis A or B include youth (37%), PLWA (21%), recently incarcerated (19%) and currently homeless PLWH/A (19%) Tuberculosis Based on County of LA Health Department Data shown in Figure 1-30, since 1998, the overall rate of tuberculosis in LAC has steadily decreased. However, not all ethnic populations have had the same level of decrease, and with high number of immigrants moving to LA from high incidence areas overseas, there is a need to carefully monitor the TB rate. In 2003, Latinos account for nearly half (46%) of the tuberculosis cases, followed by APIs (36%). However, APIs with a rate of 27.7 per 100,000 and African Americans with a rate of 10.3 per 100,000 are the communities most impacted by tuberculosis. Figure 1-30 Trends in Tuberculosis by Ethnicity

According to the Los Angeles County Department of Health Services, TB Control Program, in 2003, about eight percent of the individuals with tuberculosis are co-infected with HIV, 36% of the co-infected are substance users, and 23% are homeless. Among the HIV co-infected TB cases, 65.3% were Latino, 16% African American, 12% Anglo, and about 7% were API. Homelessness Stable housing is often a prerequisite for a PLWH/A who are trying to adhere to a difficult medical regimen and improve their quality of life. Living in shelters and inconsistent access to food and proper nutrition further aggravates the difficulty adhering to medications. In many cases, HIV/AIDS is both a cause and a result of homelessness. It is believed that HIV infection in homeless communities varies from 3 percent to 19.5 percent with a significantly



higher rate of infection in subgroups such as communities of color, intravenous drug users, women, and youth. Overall, the County of LA HIV Epidemiological Department estimates that 3.5% of those with unstable housing or who are currently homeless are infected with HIV. The Housing Opportunities for Persons with AIDS (HOPWA) program, enacted as part of the National Affordable Housing Act in 1990, distributes funds based on a federal formula to jurisdictions with the largest number of reported AIDS cases. In Los Angeles received approximately $9,700,000 in HOPWA funds, of which $3.2 million are distributed through CARE Act Title I and II funded agencies. HOPWA funds can be used for various housing activities, including capital, supportive services, rental assistance, and technical assistance. Capital activities include acquisition, rehabilitation, conversion, new construction, or leasing. The City of Los Angeles Housing Department (LAHD), the HOPWA grantee for LAC, has created seven HOPWA program categories with the goal of devising long-term comprehensive strategies for meeting the housing needs of low-income PLWH/A and their families in LAC. The program categories include 1) centralized countywide housing information services clearinghouse, 2) emergency housing and meal vouchers, 3) short-term rent, mortgage and utility assistance, 4) housing specialists to assist PLWH/A in locating and maintaining appropriate housing ,5) lease operating and supportive service costs in emergency shelter and transitional housing, 6) supportive services in permanent housing and, 7) scattered site master leasing. While a small percentage of PLWH/A are currently homeless, according to state estimates, one-third to one-half of people living with HIV/AIDS are either homeless or at risk of becoming homeless. An alarming 50 percent of individuals with HIV/AIDS are expected to need housing assistance during the course of their illness. And it has been reported that few homeless individuals know their HIV status and even fewer are informed about treatment options. According to the State of California 1999 Statewide Housing Plan, prepared by the Department of Housing and Community Development (HCD), annual estimates for Los Angeles County indicate that in the course of one year, there are approximately 236,000 homeless people in the County and up to 84,000 persons are homeless on any given night. Estimates are that up to 50% of homeless adults have severe mental disorders such as schizophrenia, depression and/or bipolar affective disorder. Forty percent (40%) are addicted to both alcohol and drugs and up to 80% of homeless adults have a concurrent disorder such as alcohol or drug addiction. In addition, the study conducted by Los Angeles County Department of Health Services found that the greatest number of homeless cases (38%, 29 cases), were located in the Metro SPA, a region characterized by high population density, severe poverty and a large number of persons with other risk factors for TB such as HIV infection, injection and non-injection drug use and severe alcohol abuse. The OAPP Client Database data confirms the study’s findings and shows that over one third (36%) of the homeless PLWH/A live in the Metro SPA. The



OAPP Client Database shows that the South Bay SPA has the second largest concentration of homeless PLWH/A, accounting for about 22% of the homeless PLWH/A in the LAC. 77% of the currently homeless population lives in SPA 4 according to the results of H-CAP 2004. Of the 732 H-CAP participants as of November 2004, fourteen percent (14%) are currently in an unstable housing situation, either homeless or in some form of transitional housing. Moreover, 35% report history of homelessness or transitional housing in the past two years. Twenty percent (20%) of the PLWH/A with a history of homelessness feel that their housing is unsafe and 30% feel that their current housing is unstable. Among the PLWH/A with a history of transitional housing, 16% feel that their current housing is unsafe and 15% feel it is unstable. Figure 1-31 shows that women are slightly more likely than men to be currently in an unstable housing situation. Not surprisingly, IDUs are more likely to be homelessness– in part due to the nature of the sampling and in part because drug use is highly related to homelessness. African American and MSM/IDU are more likely to be in transitional housing. Figure 1-31 Homelessness & Transitional Housing by Race, Gender and Risk Group

Not surprisingly, the large majority (83%) of the currently homeless live in poverty and more than one third has less than a high school education. They are likely to be symptomatic (86%), have lived with HIV for more than three years (83%), and report a higher prevalence of Hepatitis C (32.3%) than other populations. As expected, less currently homeless PLWH/A are taking medication and are more likely to experience difficulty adhering to the regimen, with nine percent skipping medications more than twice a week, and 12% discontinuing their medication. Twenty-eight percent report a period of 12 months without seeing a doctor and return to medical care because they got sicker or there was a change in income. Fifty-nine percent (59%) cited other reasons for returning to care, including drug

0%

5%

10%

15%

20%

25%

30%

35%

% o

f PLW

H/A

14.1% 13.8% 16.2% 11.2% 20.0% 13.2% 10.7% 11.7% 19.0% 31.0% 13.5%

TOTAL Male

Female Anglo Af Am Latino

API/ other

MSM MSM/ IDU IDU Hetero

Currently homeless/ transitional



abuse, someone bringing them to the hospital, moving to the US, needing a HIV-diagnosis to get housing, and their own desire to find out. Currently homeless PLWH/A, are much more likely than other populations report having bipolar disorder (30%) or dementia (24%). The instability of housing becomes more evident when PLWH/A are asked if they have been homeless or in transitional housing in the last two years. Of the PLWH/A interviewed, over 21% report having a history of homelessness and 25% report having lived in transitional housing. The data reveals that: • Women have consistently been more likely to be homeless or in transition than men.

About 36% of women have a history of unstable housing compared to 34% of men. • Participants with a history of unstable housing are much more likely to be MSM/IDU

(56%), IDU (54%), or African American (45%). • Not surprisingly, recently incarcerated PLWH/A report the greatest level of housing

instability. Eighty percent (80%) of the recently incarcerated PLWH/A have been homeless or in transitional housing during the past two years. This may reflect the financial challenges and rules and regulations of public housing one faces after being released from the jail system.

• Nearly 40% of women of children-bearing age report a history of unstable housing.



NEEDS, UNMET NEEDS, GAPS, AND SERVICES DELIVERY BARRIERS Service Categorization The 2002 Needs Assessment survey was responded to by 246 PLWH/A, and the 2004 Needs Assessment survey was responded to by 732 PLWH/A. The 2004 sample purposefully over-represented women, African Americans, and IDUS. These over-sampled subpopulations were weighted back to their estimated proportion in the populations of PLWH/A in order to provide a more accurate analysis of all PLWH/A. In 2004, participants were asked to rank their awareness of need, demand, utilization, and satisfaction for 44 services (see Q. 36 in the 2004 Needs Assessment Survey). As shown in Table 1-16 on the following page, 27 services are partially or fully funded by the Ryan White CARE Act, and prioritized by the Commission. Seventeen (17) are important services in the continuum of care, but receive no Ryan White CARE Act Title I funding. They are funded by other channels including Title II, III, and IV of the CARE Act, HOPWA, State funding, Medi-CAL, VA, DMH, NCC, SAMHSA, WIC and other sources. In Table 1-16 these services are presented by the five priority categories in the LAC Continuum of HIV Care, and the number in brackets is the Year 15 priority ranking of services by the Commission. Where possible, utilization figures are compared to utilization reported in the Information Management of AIDS Clients and Services (IMACS)/Casewatch and Toolbox client tracking system used by OAPP. According to these databases there are 22,403 unduplicated clients, including HIV-negative collaterals and pediatric AIDS cases using the CARE system in 2003. Most Needed Services PLWH/A were asked if they “needed the service in the past year” for each of 27 Ryan White CARE Act funded service categories and 17 additional non-CARE Act funded services shown in Table 1-16. A similar question was asked in the 2002 needs assessment and trends are noted. However, due to the more rigorous methodology and larger sample size of the 2004 survey, only large difference and trends should be considered reliable.10.

10 The 246 respondents in the 2002 Needs Assessment survey were interviewed at community focus forums and were largely self-selected. The 732 respondents in the 2004 Needs Assessment were selected using a stratified quota sample and while limitations are noted in the methodology section of this report, the findings are reliable.



Table 1-16 Needs Assessment Survey Services (2004)

1. PRIMARY HEALTH CARE CORE Outpatient medical care [1]1 Medical care by a specialist [1] Nutrition education and counseling [1] Individual mental health services (out) [2] Group mental health services (out) [2] Family Counseling [2] Residential mental health [2] Dental care [3] Outpatient substance abuse services [9] Residential substance abuse services [9] Detox and/or methadone maintenance [9] Drug reimbursements [NR] Treatment Adherence [NR} Home health care [NR] Hospice services (in-home and residential) [NR]

HIV Prevention at a doctor’s office [NR} Health education/Risk Reduction [NR]

2. REMOVAL OF BARRIERS

Residential housing or group home [4] Housing information [4] Emergency or transitional housing [4] Food pantry or food bank [5] Home-delivered meals [5] Taxi vouchers or bus tokens [6] Bus tokens [6] Bus passes [6]

Client advocacy [13] Health insurance continuation [13] Day care for children [14] Food vouchers [NR] Nutritional supplements [NR] Rental subsidies [NR] “Independent” housing (e.g. through Section 8 or HOPWA) [NF]

Van transportation [NF] Emergency financial assistance/ rent & util [NR]

Emergency financial assistance / not rnt& util [NR]

Adult day care [NR] 3. PATIENT CARE COORDINATION

Psychosocial case management [7] Medical case management [8] Translation/interpretation services [10] Referral / Directory [NR]

4. ECONOMIC WELL-BEING

Legal services 5. ENHANCEMENT SERVICE OPTIONS

Peer counseling [12] Employment Assistance [NR} Buddy services [NR] Spiritual Counseling [NR]

1. The number in brackets is the year 15 priority. Top Rated Needs The percentage of the PLWH/A sample needing the service in the past year is shown in Figure 1-32. Within each of the five priority categories in the continuum of care, the services are ranked by reported need of PLWH/A. The numbers above the bars shows the ranking of need by participants, regardless of the category of the service in the continuum of care. Figure 1-32 indicates that:



• The most needed service in 2004 is outpatient medical care, the same as in 2002. In 2004 about 95% of PLWH/A said they needed outpatient medical care in the past year.

• The second and third most needed service in 2004 is dental care and psychosocial case management both (77%). Dental care remains the second rank need followed by psychosocial case management which is up from fourth in 2002.

• Bus passes were the fourth ranked service in 2004. In 2002 bus passes were not ranked, but taxi vouchers were ranked as the fifth most important service. Notably when more transportation options were presented to the consumer in 2004, taxi vouchers were ranked significantly lower, while bus passes were among the top five most needed services.

• Food pantry, part of the removal of barriers cluster, ranked fifth, with 69% of PLWH/A saying they needed the service in the past year.

• Nutrition education stayed in the top ten most needed services in 2004 with just under 64% reporting a need for nutrition services in the past year.

• There was a greater reported need for medication reimbursement in 2004 than 2002. In 2004, 63% of PLWH/A said they needed medical reimbursement in the last year and it was ranked as the 8th most needed service. In 2002 53% said they needed it in the past year and it was ranked 11th.

• Within the primary health care core, over 50% of the participants also said they needed individual mental health counseling, visits to medical specialists, and prevention information from the primary care giver.

• In addition to the 4th ranked need for bus passes and 5th ranked need for food pantry, other services needed by over 50% of the participants in the ‘removal of barriers’ cluster were independent housing and food vouchers.

• Consumers reported a greater need for psychosocial case management than medical case management. Still, over 56% of the participants reported needing medical case management in the last year.

• None of the services in the “economic well being” cluster or the “enhancement service” were rated among the top twelve needs of the participants. There appeared to be a significant decrease in perceived need for peer counseling in 2004 (44%) compared to 2002 (54%), although this may be attributable to the different sampling strategies used in the needs assessments.

• Substance abuse services were reportedly needed the least by the participants. Given the relatively low percentage of IDUs in the population of PLWH/A (14%, including MSM/IDUs), this is not surprising. However, as seen in the later subgroup analysis, even among drug users, the relative demand for substance abuse programs is low.



Figure 1-32 Ranked Service Needs

Primary Health Care Core

0%

20%

40%

60%

80%

100%

%

PLW

H/A

PLWH/A

95.1%

77.6%

63.9%

63.2%

58.7%

57.9%

54.5%

39.3%

35.7%

35.3%

23.3%

18.2%

17.6%

14.0%

11.4%

10.9%

6.4%

Outpt med

Dental

Nutri ed

Med reim

b Ind MH

Med spec

Prev@ Dr

. HERR

Ad- here

Grp MH

Home hlth

Fam cnslin

g

Res MH

Out SAT

Res SAT

Hos- pice

Detox/ Meth

4 5 7 9

3

12

1

2

6 8 10 110



Top Service Needs: Gender Differences As shown in Table 1-17, the top five needs of men and women are about the same. Both groups rank outpatient medical care, dental care, and psychosocial case management, bus passes, and food pantry among their top five most needed services. Women were much more likely to report needing medical specialists than men. None include food pantry services in their top three ranked service categories, while both included dental services. Women rank medical case management as a low priority (17th) while men rank it 11th. Table 1-17 Top Ranked Service Needs by Gender Service Needed in the Past Year Rankings (1=top ranked 44=lower rank) All PLWH/A Male Female Outpatient med care 1 1 1 Dental 2 2 3 Psychosocial case management 3 3 2 Bus pass 4 4 5 Food pantry 5 5 4 Nutritional education 6 6 11 Independent housing 7 8 7 Med reimbursement 8 7 10 Food Voucher 9 9 8 Individual mental health counseling 10 10 9 Med specialist 11 12 6 Medical case management 12 11 17 Prevention information at doctor’s office 13 13 12 Nutritional supplements 14 14 24 Referrals 15 15 19 The top six needs for women living with HIV and AIDS are outpatient medical care (97%), psychosocial case management (82%), dental (77%), food pantry (74%), bus passes (73%), and medical specialists (72%). For men, the top six are outpatient medical care (95%), dental (78%), psychosocial case management (76%), bus passes (73%), and food pantry (68%), and nutritional education (64%). The largest difference from 2002 is a decreased perceived need for taxi vouchers for women. The service needs with the largest differences between males and females are shown in Figure 1-33. This figure indicates that: Women are significantly more likely to report needing taxi vouchers and medical specialists than men. In the primary medical care core, they are also more likely to report needing mental health services, including family counseling and individual mental health counseling, and prevention services. Women have a greater need than men do for services that remove barriers to care, including taxi vouchers, child care, rental assistance, and emergency financial assistance. Women also report a greater need for “enhancement” services, such as peer counseling and buddy support, as well as legal services in the economic well-being cluster.



Men are less likely to have greater needs than women. Perhaps reflecting their greater substance use, they are somewhat more likely than women to need residential mental health. They also express a somewhat higher need for nutritional supplements. Figure 1-33 Need - Difference by Gender

Top Service Needs: Ethnic/Racial Differences Table 1-18 compares the top fifteen service need rankings between all PLWH/A, Anglo, African American, Latino, and API and other individuals living with HIV and AIDS. There are considerable differences in the rankings and percentage of each ethnic population reporting a need for each HIV/AIDS care service in the next year. Anglos rank nutritional education, individual mental health, medical specialists, and nutritional supplements considerably higher than other ethnic communities do. They are significantly more likely to say that they need medical specialists (65%) and somewhat more likely to say they need medical specialists (67%). Anglos are less likely to say they need transportation services, prevention services in a doctor’s office, and medical case management. African Americans tend to rank the need for food vouchers, bus passes, medical case management high then the general population. As shown in Figure 1-34, African Americans, when compared to all PLWH/A, have a significantly greater need for bus tokens and bus passes, housing information and transitional housing. They report a somewhat higher need for prevention education and medical case management. The have a significantly lower need for referrals from a directory, legal services, and medical specialists.



Latinos tend to rank medication reimbursement and prevention at a doctor’s office higher than other ethnic populations. Figure 1-35, indicates that Latinos have a significantly greater need than all PLWH/A for translation services, prevention information at their doctors office, and health information from a health educator, and family counseling. They do not have significantly lower need than all PLWH/A for any service. Given that there are only 27 API and other ethnicities in the sample, the findings reported below may not be reliable. Given this caveat, the 27 APIs and PLWH/A from other ethnicities report a higher need than other PLWH/A for food -- both food pantry and food vouchers. At the same time they say they have a much lower need for nutritional education. In Figure 1-36, API and other ethnicities report a greater need for residential mental health, bus tokens, food pantry, and buddy support than all PLWH/A. Figure 1-36 also shows that, in general API and other ethnicities have a lower reported need for group mental health, medical specialists, workforce reentry, and nutritional education services than other PLWH/A. Table 1-18 Service Need Rankings by Ethnicity Service Needs in the Past Year Rankings (1=top ranked 44=lower rank)

All PLWH/A Anglo Af Am Latino API & Other

Outpatient med care 1 1 1 1 1 Dental 2 2 6 2 2 Psychosocial case management 3 3 3 4 5 Bus pass 4 10 2 3 4 Food pantry 5 6 4 8 3 Nutritional education 6 4 10 9 25 Independent housing 7 11 7 6 6 Med reimbursement 8 9 11 5 10 Food Voucher 9 7 5 12 7 Individual mental health counseling 10 8 15 10 12 Med specialist 11 5 21 11 16 Medical case management 12 14 8 13 9 Prevention information at doctor’s office 13 22 12 7 8 Nutritional supplements 14 12 18 20 17 Referrals 15 13 23 16 11



Figure 1-34 Comparison of African American Service Need to ALL PLWH/A

Figure 1-35 Comparison between Latino Service Need and All PLWH/A

Figure 1-36 Comparisons between API/Other Service Needs and All PLWH/A



Top Service Needs: Risk Group Differences Table 1-19 shows the differences in the reported service needs of different risk groups. There are no significant differences between MSM and all PLWH/A in their ranking or percentages reporting needing services Among the top needs, MSM/IDUs rank needing individual mental health counseling and medical case management higher than other risk groups. Like all PLWH/A they rank substance abuse relatively low. Still, as shown in Figure 1-37, they are significantly more likely to report a greater need for residential, outpatient, and methadone substance abuse services. They are also significantly more likely to say they need individual mental health counseling (ranked 4th) and workforce re-entry training. They are significantly less likely than all PLWH/A to say they need medical reimbursement and prevention information at a doctor’s office. The top ranked needs for IDUs are similar to all PLWH/A. However, they rank housing related services higher, including housing information and independent housing, as well as non housing related emergency financial assistance, buddy support, and bus tokens. As seen Figure 1-38, they are significantly more likely than all PLWH/A to need several services. They are more likely to report needing buddy services, bus tokens, non housing emergency financial assistance, group and transitional housing. While their ranking for substance abuse programs are low, they are significantly more likely to say they need outpatient and residential substance abuse treatment, and detox and methadone services. They are also more likely to need spiritual counseling and adherence assistance. Heterosexuals rank prevention information at their doctor’s office, medical reimbursement, and non-rent and utilities emergency financial assistance higher than other risk groups. Not shown in the ranking table, the also rank taxi vouchers and van transportation high than other PLWH/A. As seen in Figure 1-39, heterosexuals are significantly more likely to report needing taxi vouchers, prevention services at their doctor’s office and with a health educator, day care for their children, and translation services than all PLWH/A. These findings are consistent with the ranking of females who represent the majority of heterosexuals.



Table 1-19 Comparison of Risk Group Ranking of HIV/AIDS Service Needs Service Needs in the Past Year Rankings (1=top ranked 44=lowest rank)

All PLWH/A MSM MSM/ IDU IDU Het

Outpatient med care 1 1 1 1 1 Dental 2 2 2 6 4 Psychosocial case management 3 3 3 2 2 Bus pass 4 4 6 3 3 Food pantry 5 5 5 4 5 Nutritional education 6 6 8 10 12 Independent housing 7 8 10 5 8 Med reimbursement 8 7 13 9 6 Food Voucher 9 9 7 8 9 Individual mental health counseling 10 10 4 14 13 Med specialist 11 11 12 12 10 Medical case management 12 12 9 15 14 Prevention information at doctor’s office 13 13 21 13 7 Nutritional supplements 14 14 11 22 24 Referrals 15 15 14 25 18 Housing information 16 16 15 11 19 EFA, not rent or utilities 17 18 18 7 15



Figure 1-37 Comparison between MSM/IDUs Service Needs and All PLWH/A

Figure 1-38 Comparison between IDUs Service Needs and All PLWH/A

Figure 1-39 Comparison between Heterosexual's Service Needs and All PLWH/A



Top Service Needs: SPAs Figure 1-40 shows the top eight needed services by the total 2004 Needs Assessment Survey PLWH/A sample across the eight SPAs. The figure indicates that: • All SPAs rated outpatient medical care as their number one most needed services except the

East SPA, which rated it second. • Dental care was the second most needed service among all PLWH/A and among PLWH/A in

the Metro SPA and San Gabriel. It was the top need among PLWH/A in the East SPA. • Above average need existed for case management services in all the SPAs except in the San

Gabriel SPA were less than two thirds of the PLWH/A felt they needed this service. • PLWH/A reported a greater need for bus passes in the Antelope Valley, Metro, and South

SPAs. • PLWH/A reported a greater need for DEFA in Antelope Valley, Metro, West, and South

SPAs. • PLWH/A reported a greater need for and housing information services in Antelope Valley,

Metro, South, and East SPAs. • PLWH/A in Antelope Valley tend to report higher services need than the total sample of

PLWH/A particularly for psychosocial and medical case management, medication reimbursement, taxi voucher and DEFA.

• PLWH/A in San Fernando Valley have a higher need for case management and HIV prevention services.

• PLWH/A in San Gabriel tend to report lower services needs than other PLWH/A however, they report greater need for dental care, medical specialists, and HIV referrals and directory.

• PLWH/A in the Metro SPA report slightly greater needs than average yet they share the same top needs.

• PLWH/A in the West SPA report HIV prevention services as their third most import service need. They also rate medical case management and DEFA as a greater need than average.

• Bus passes are the second most important services for PLWH/A in the South SPA. They also report a higher need for van transportation and bus tokens.

• Overall, PLWH/A in the East SPA report higher needs than PLWH/A in all other SPAs except Antelope Valley.

• In the East SPA and more than 70% report a need for outpatient medical care, dental, psychosocial case management, bus passes, nutrition education, and individual mental health.

• South Bay SPA PLWH/A have lower than average need for services, yet report a higher need for medication reimbursement, food vouchers, individual mental health, and DEFA.



Figure 1-40 Top Service Needs by SPA



Top Needs by Stage of Infection People living with HIV who have not progressed to AIDS reflects a different population than those living with AIDS. They are more heavily represented by communities of color and women. They are poorer, have lower education, and lower income. Both because of their stage of infection and different demographics they have different needs. As shown in Table 1-20, the top five needs of PLWH and PLWA are ranked the same. After the top five, both PLWH and PLWA report a high need for nutritional education. PLWH report a greater need for independent housing and prevention at a doctor’s office than PLWA. PLWA report a greater need for food vouchers, nutritional education, medical reimbursement, and medical specialists. Table 1-20 Service Need by Stage of Infection

Service Needed in the Past Year Rankings (1=top ranked 44=lower rank)

All PLWH PLWH PLWA Outpatient med care 1 1 1 Dental 2 2 2 Psychosocial case management 3 3 3 Bus pass 4 4 4 Pantry 5 5 5 Nutritional education 6 8 7 Independent housing 7 6 10 Med reimbursement 8 9 8 Food voucher 9 11 6 Individual mental health counseling 10 10 11 Med specialist 11 14 9 Medical case management 12 12 12 Prevention information at doctor’s office 13 7 17 Nutritional supplements 14 16 14 Referrals 15 19 13

The difference in service needs between PLWH and PLWA is shown in Figure 1-41, and are ranked by the size of difference. The greatest difference is that PLWH report a greater need for prevention at a doctor’s office and also for prevention information. They also have a significantly greater need for workforce reentry and housing information. PLWA report a greater need for medical specialists, adherence treatment, home health care and food vouchers.



Figure 1-41 Comparison of Need between PLWH and PLWA

Awareness, Demand, Utilization, and Satisfaction with Care Services In addition to asking participants if they needed the forty-four HIV/AIDS services shown in Figure 1-32, participants of the survey were asked is they were aware of the service, asked for the service, received them in the past year, and whether the services they received met their needs. (See Attachment 10 and Attachment 11) Responses to these questions are shown in Figure 1-42 through Figure 1-44. The figures are ranked by expressed need (the gray background), going from most needed to least needed. The percentage of participants who said they were aware of the service is shown by the red line at the top of the chart. The percentage of participants who reported if they asked for the service is shown by the dark blue bar. This is referred to as “demand”. The percentage of participants who reported receiving the service is shown by the light blue bar, and this is referred to as “utilization”. Finally, the percentage of participants who said that the service met their need is shown by the green line, usually at the top of the chart. This is one measure of satisfaction. The three charts are presented ranked by perceived need. Figure 1-42 shows the awareness, need, utilization, and satisfaction for those services with a perceived need of over 50%. Figure 1-43 displays the same figures for those services where more than a third of PLWH/A have a perceived need. Figure 1-44 shows the remainder of the services with lower perceived needs. There are some overall messages from these graphs: • The fact that the gray background on the graphs are almost always above the bars indicates

that PLWH/A say they need more service than they actually ask for or receive. The only exception is that PLWH/A receive more prevention information from their doctor or health educators than they perceive they need.

• Awareness of an HIV/AIDS care service is higher than either perceived need or demand. Between 80% and 90% of PLWH/A are aware of the care services they say they need the



most. Exceptions include a relatively low awareness of food vouchers (68% aware) and medical case management (78% aware).

• Awareness declines for services with lower reported need, demand, and utilization. The services not funded by the Ryan White CARE Act are those with the lowest awareness including non-housing related emergency financial assistance, spiritual counseling, buddy support, health insurance assistance, and rental assistance. An exception to this observation is the low awareness of advocacy and relatively low awareness of child care, and this may be due to the general lack of understanding of the service by PLWH/A.

• PLWH/A usually ask for more services than they receive. The opposite is true for prevention at a doctor’s office, outpatient medical care, health education provided by an educator, medical case management, medication reimbursement, and nutritional education.

• The demand for services follows reported need, with those services needed the most asked for the most. The exception shown in Figure 1-42, is food vouchers, where the need is far greater than the demand for the service. This is probably due to the knowledge by participants that the service is very difficult to obtain.

• Among the moderate needs, (Figure 1-43) need tends to be quite a bit greater than demand, with the exception of health education by an educator. For those services needed the least, the reported need tends to follow demand and utilization.

• The vast majority of those using the care services say it meets their needs (the green line). The services with relatively lower satisfaction include housing information, legal services, and child day care.



Figure 1-42 Consumer Awareness, Demand, Utilization, and Satisfaction of Most Needed Services



Figure 1-43 Consumer Awareness, Demand, Utilization, and Satisfaction of Moderately Needed Services



Figure 1-44 Consumer Awareness, Demand, Utilization, and Satisfaction of Less Needed Services



Service Gaps In addition to the ranking of service needs, two gap measures were calculated for the needs assessment. • First, the difference between what services are needed and what services are asked for

indicates a gap between what PLWH/A believe they need and their expectation of receiving a service, and is referred to as the “need-ask gap”. PLWH/A may not ask because they know or perceive that they are ineligible, feel that they have no access, or do not know who to ask for in order to obtain the service. These barriers are explored later in the report.

• Second, the difference is between what is asked for and what is received and is referred to as the “ask-receive gap”. Large gaps can reflect the misperception of the consumer about their eligibility for a service and/or the system’s lack of capacity to provide requested services. Organizational barriers are further explored in the following section.

Figure 1-45 displays those services that have a difference between what was needed and what was asked for. It indicates that: • The overall message is that half the services have a need-ask gap of over 10%. Services with

the largest need-ask gap are non-housing related emergency financial assistance (32%), food vouchers (26%), rent and utility related emergency financial assistance (23%), rental assistance (22%) and advocacy (19%). Of these top five, three are not funded by Title I of the Ryan White CARE Act. Further, the majority of rental assistance is funded by HOPWA and other sources. The high need-ask gap for advocacy may be due to an unclear picture of advocacy in the consumers’ mind, and the large gap for dental reflects difficulty of accessing dental care.

• The overall pattern that is shown in Figure 1-45 indicates that consumers are unlikely to ask for services they know they are unlikely or cannot receive. The need-ask gaps that are in the purview of the Commission to impact are some of the primary health care and removal of barriers services, such as dental, food services, and case management.

• In the primary health care core dental (18%), nutritional education (15%) and group mental health (9%) have the largest need-ask gaps.

• In the removal of services category, food and housing services are the most likely to have need-ask gaps. Food services include nutritional supplements (18%), home delivered meals (11%), and food pantry (10%). Housing services include housing information (14%) and independent housing (11%). Taxi vouchers (17%) also have a significant need-ask gap.

• All the patient care coordination services have need-ask gaps with PLWH/A reporting that they need referrals from directories 16% more than they ask for them. Medical case management (14%) and psychosocial case management (10%) also have a higher perceived need than demand.



Figure 1-45 Need – Ask Service Gaps

0.0%

5%

10% 15%

20%

25%

30%

35%

N-hsing EFA

Food Vchr

EFA rnt/util

Rent asst

Advocy

Dental

Nutri sppl

Taxi Vchr

Wrkfce entry

Dirctry Buddy

Nutri ed

Med CM

Hsing info

Van Transp

Spirtl cnsling

Legal

Prev@Dr.

Hme Dlvd mls

Ind hsing

Peer cnsl

Food pantry

Psysoc CM




Economic Well-being

KEY



Figure 1-46 displays the ask-receive service gaps. The bar line to the right indicate that a PLWH/A asks for but does not receive a service. They are ranked in size of gap from the bottom to the top of the graph. The five services at the top of the graph with bars going tot the left indicate that that PLWH/A report receiving these services even when they don’t ask for them. This figure indicates: • Overall most services that are asked for are received. The largest gap is 18% of those asking

for independent housing do not receive it. As seen in the last section, independent housing also has a significant need-ask gap. Given the overall shortage of housing in Los Angeles among those with low income, the degree to which this situation can be mitigated by Ryan White CARE act funds is limited.

• PLWH/A noted a gap in food services in 2002, and they continue in 2004. Food vouchers, no longer provided by the CARE Act, have the largest gap (9%). The gap for nutritional supplements is 7% and the gap for food pantry and home delivered meals is less than 5%.

• Housing and food services that receive Title I Ryan White CARE Act funds have the largest ask-receive gaps, and this reflects the populations shift in PLWH/A as those impacted by the epidemic are shifting to lower income populations.

• Repeating the finding from 2002, outpatient medical care is received more than it is requested. The likely explanation is most PLWH/A don’t ask for the service; rather appointments are routinely scheduled.

• PLWH/A report that nutritional education and medical case management are received more than they request them. Like outpatient medical care, this is possible because providers are mandated to provide nutritional information and usually provide medical case management as part of regular outpatient care. While the need-ask gap indicates a higher perceived need than demand for these services, this chart shows that once asked for, it is received. This suggests a need to improve awareness of these services.

• Among the primary health core, dental services had a gap of 9% and individual mental health counseling had a gap of under 5%. Both are about the same as reported by PLWH/A in 2002.

• Legal services had about the same gap, 6%, as reported by PLWH/A in 2002. To better understand these gaps, the next section discusses general barriers to the system. The conclusion of this report will also pull these findings together and suggests some possible actions to overcome these gaps.



Figure 1-46 Ask-Receive Service Gaps

-25%

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-15%

-10%

-5%

0%

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Ind hsing

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Dental

Nutri sppl

Legal

Taxi Vchr

Wrkfce entry

Hme Dlvd mls

Food pantry Nutri ed

Med CM

HERR

Outpt med care

Prev@Dr.




Economic Well-being

KEY



BARRIERS The PLWH/A participating in the 2004 survey were to rank 31 different potential problems on a scale ranging from “not a problem” to a “very big problem.” These barriers were not “linked” to a particular service category. As shown in Table 1-21, the thirty-one potential problems can be classified into the more general categories of “organizational”, “structural”, or “individual” barriers. • Structural barriers are further subdivided into “rules and regulations” and “levels of access”.

Rules and regulations include insurance coverage, cost of services, bureaucratic challenges (“red tape”), eligibility and problems navigating the system of care. On average, about 35% of the PLWH/A are likely to have a problem with these types of barriers. Structural “access” barriers have to do with lack of transportation, access to specialists or lack of family-oriented services. These are mentioned less frequently than “rules and regulations” but still about 18% of PLWH/A registered they had a problem with these types of barriers.

• Organizational barriers are subdivided into 1) provider sensitivity and 2) provider expertise. Sensitivity barriers include the provider’s response to the PLWH/A’s issues and concerns, making the client feel like a number, rather than an individual, and helpfulness of the provider. On average, over a quarter of the sample (28%) reported experiencing this type of barrier. Provider expertise includes the perceived experience of providers, ability to provide correct referrals and ability of providers to get along with clients. On average, nearly 30% of PLWH/A note that they have experienced these types of barriers.

• Individual barriers are subdivided into 1) knowledge and 2) well-being barriers. Knowledge barriers refer to the individual’s knowledge about treatment and access. About 40% of the participants reported problems with these types of barriers. Well-being refers to physical or mental well-being. About 38% of the PLWH/A mention well-being barriers.

Table 1-21 displays the percent of PLWH/A who report a problem with each of these barriers. For those with a problem it shows the percent who say it is a big problem and the average score for the height of the problem that ranges from one, a very small problem, to 6, a very big problem. In general the table says that while there are many barriers to receiving care, none are seen as more than moderate barriers.



Table 1-21 Types of Barriers

OF THOSE WITH A PROBLEM

1=Very small, 2=Small, 3=Moderate, 4=Big, 5=Very big STRUCTURAL

% WITH PROBLEM

% WITH BIG

PROBLEM

AVERAGE BARRIER SCORE

Rules and Regulations

1. Too much paperwork or red tape. 42.5% 36.0% 2.9 2. The amount of time I had to wait in a waiting room before I received

the services. 39.3% 30.8% 2.7 3. My lack of, or inadequate, insurance coverage. 38.8% 50.5% 3.3 4. Too many rules and regulations. 33.7% 41.8% 3.0 5. I could not afford one or more of the services. 33.7% 49.9% 3.3 6. My inability to find my way through the system. 33.1% 26.8% 2.6 7. The amount of time I had to wait to get a doctors appointment once I

was diagnosed with HIV 26.4% 30.2% 2.6 8. Could not prove eligibility for the service. 26.2% 45.3% 3.2

Access 1. No transportation. 29.1% 33.7% 2.8 2. There was no specialist who could provide the care I needed. 23.0% 41.1% 3.0 3. I was terminated or suspended from seeking services. 16.4% 46.8% 3.3 4. I have been denied or have been afraid to seek services due to

criminal justice matter. 13.6% 32.5% 2.6 5. No childcare. 6.1% 28.4% 2.3

ORGANIZATIONAL Provider Sensitivity

1. Fear of my HIV or AIDS status being found out by others - lack of confidentiality. 29.1% 40.9% 3.0

2. The service provider or persons providing services was insensitive to my issues and concerns. 23.0% 28.6% 2.7

3. The people providing services to me were not helpful. 16.4% 27.3% 2.6 4. The organization providing the service made me feel like a number. 13.6% 41.4% 3.0 5. Discrimination I experienced by the persons or organization providing

the service. 6.1% 39.5% 3.0 6. Fear that I would be reported to immigration or other authorities. 15.0% 40.0% 2.7

Provider Expertise 1. Lack of experience or expertise of the person providing services to

me. 32.3% 34.1% 2.8 2. The organization did not provide the right referrals to the services I

need. 27.9% 30.6% 2.7 3. I did not get along with the people providing services to me. 27.2% 21.0% 2.4

INDIVIDUAL Knowledge

1. Not knowing that a service or treatment was available to me. 51.0% 28.1% 2.8 2. Not knowing a location of the service(s). 46.2% 31.3% 2.8 3. Not knowing who to ask for help. 42.4% 37.3% 3.0 4. Not understanding the instructions for obtaining the service or

treatment. 40.7% 28.7% 2.7 5. Not knowing what medical services I need to treat my HIV infection or

AIDS. 32.5% 33.7% 2.7 6. My inability to communicate or interact with the service provider. 21.9% 29.6% 2.7

Well-Being 1. My physical health has not allowed me to get to the place where the

service is provided. 38.4% 27.7% 2.6 2. I do not believe HIV or AIDS is a problem for me that require

assistance. 37.5% 34.1% 2.9 3. My state of mind or mental ability to deal with the treatment. 37.4% 31.6% 2.8



This data is shown graphically in Figure 1-47, where the % of PLWH/A reporting a problem is shown by the bar, and the average height of the problem by the line. Like the table, it is organized by the three major categories of barriers, and the 6 subcategories of barriers. Figure 1-47 graphically shows the range of organizational, individual, and structural barriers reported by PLWH/A. • Among the “rules and regulations”, structural barriers, over 40% of PLWH/A report that red-

tape and lack of insurance coverage are barriers that impact their ability to receive care services. For those who report cost is a barrier, nearly half say it is a big barrier. Similarly for those who are terminated from service, this presents a high barrier for obtaining services. The other structural barriers are ranked as small to moderate barriers.

• In general, among the structural barriers, more PLWH/A report barriers reflecting the rules and regulations in the care system than access barriers, like transportation and unavailability of child care.

• From the three groups of barriers, PLWH/A are most likely to claim one or more individual level barriers like knowledge and well-being. About half of the participants report that their lack of awareness of the availability of treatment and lack of awareness of the location for services is a barrier for obtaining needed services. About a quarter of those saying it is a barrier, rate it is a big barrier. On average they are moderate barriers.

• Over a third of the PLWH/A report that their physical well-being presents a barrier for obtaining services. For them, their physical health, state of mind and denial about their HIV and AIDS status present a moderate barrier, with over a third of those reporting denial saying it as a big problem.

• Among all the barriers listed, less than a third of the PLWH/A name any single organizational barrier. For those reporting confidentiality, fear of authorities, discrimination and feeling like a number, it is among the highest organizational barriers they face.

• Compared to 2002 fewer PLWH/A name significant barriers to receiving their care. For more information on how different subpopulations report barriers, please refer to Attachment 10 and Attachment 11. Following are consumer forum comments, organized by barrier category.



Figure 1-47 Barriers to Services 1=Very small, 2=Small, 3=Moderate, 4=Big, 5=Very big



Barriers to care were further explored in the eight focus groups among diverse populations held in 2004. Below is a list of comments that add some depth to findings reported above. Structural Barriers Rules and Regulations Across many of the service categories, H-CAP survey respondents had similar problems. Of these, rules and regulations were a common problem. Many echoed the message of cutbacks in HIV/AIDS care, saying “services are limited due to funding cuts and staff changes” or that they were “on the waiting list”. Many note they are “not eligible for the service”, sometimes because of their undocumented status. Among the reactions of undocumented clients include, “legal services? Come on, I’m undocumented. They don’t exist for me” and “(The agency) can never do anything if you are undocumented. We do not have rights in this country. They treat us really harshly and they don’t want us in (the U.S.)”. Within many service categories, clients cite “too much paperwork”, saying that “I don’t even bother anymore. It takes so much time to complete the paperwork and then you are probably not even eligible”. Limited Services An African American MSM/W says “When I got out of treatment in March, I was having a very difficult time. When I was living in Pasadena I would go to (name of agency) and I could see a psychiatrist. Since I'm in Pomona now, I’m at (name of agency) and we don’t have a psychologist and I was having some major stuff going on with memory and just everything. There was really nothing and no one for me to see. A lot of the services that were listed (on the survey) weren't available.” An African American IDU Male says the service availability is, “steel prejudice”. He says, “You can't get in the black neighborhood, which is considered South Central, what you get on the outside. I go on the outside because I know better. I don't try to go to South Central because it’s against me. You can go anywhere as long as you stay on the outside, but if you try to go in your neighborhood in South Central, you're asking for trouble. You're not going to get it because they don't have it and they're not ever going to give it to us.” He adds, “They have a great program that they started working on at (name of agency) but they are so lacking in funding. One of the guys who is a director of projects there, he is a member of our group, but the horror stories that he tells, its like pulling teeth just to get them enough money even to do paper work to print pamphlets to put the information out there, not to mention to get the condoms to pass out. They can't get anything. Once you get into the Afro-American neighborhood in South Central and beyond, you can absolutely forget it.” A Latino MSM, responding to the question of what service would he cut if he had to cut a service, says, “At least for me, we have to have some consciousness. People who are citizens here get everything, health, housing, etc. That's fine; they've worked for it, whatever. But I get



very little and I'm really thankful, but I need it all. Do you understand? Sometimes the nurse asks me if I want to take the taxi, but I still take the bus because those services should be saved for the people who need them.” Ability to find my way through the system An African American heterosexual female, “There should be some kind of activist that could help fight for us. I shouldn't have to be on the phone all day stressing and trying to call and get to the top person. It should be somebody that fights for us. And that's what I'm going to do once I get myself together because this is not fair. They tell us don't stress because it affects our T-cells, but they do everything to make us stress.” Red Tape An African American MSM/IDU says, “I have a dentist, but the problem with dental care is when you go see a dentist they'll need the paper work and then you have to go see another dentist to see if you can get the paperwork done. My dentist is actually 2 blocks from where I live. I had to go to Burbank to get an OK from another dentist which took 5 minutes. The cab company had to take me out there.” Amount of time An African American MSM says, “I want to agree with what the gentleman said before – (name of agency) -- their services are all generally slow. You're waiting to see a doctor and it takes you well in excess of an hour, hour and a half.” Eligibility An African American heterosexual female says, “I don't have MediCal. They say I'm not going to get MediCal because I don't have AIDS. (I have a) one bedroom, but I don't get Section 8 because they say even with my unemployment; I'm at thirteen-hundred a month, which is not a lot of money for me at all, but they say, ‘Oh, you don't qualify. You make too much money.” Afraid of being reported to immigration A heterosexual Latino says, “You just have to look (services) up, because there are a lot of services that you can get. You can get all your medicines covered if you're a legal resident or a citizen. If you're illegal, you are a burden to the government, so you can't get everything. So if you're legal and sick, they give you housing, transportation, food, a salary, everything. But if you are doing all the paperwork for the residence, being HIV positive will not be good for your papers. In my case, I'm applying, and if they find out, they won't give it to me. It's not only about asking for help, because everyone wants to come here to get help for HIV, and until the day that there's a cure and it is sold in the pharmacies, we'll be a burden to this government. My friend is a legal resident, and he can't get his citizenship because he would be a burden for the



government. He talked to the lawyers, and they told him it's going to affect you if you apply for housing. Not if you only get the medicine, though." Levels of Access A Latino MSM says, “Services that I really think are really important besides medical services, is also information. Not information on prevention because we are saturated with that, information to the community clinics, to the clinics where the people go, on housing and other services that are provided. Because a lot of people are not aware of these services. And also there are a lot of people who are afraid to go because they do not qualify for MediCal, they don’t have papers or they feel that they will be reported to immigration.” Organizational Organizational barriers are mentioned by fewer PLWH/A than structural or organizational barriers. As shown in the quotes for the focus groups below, for those who have them, they tend to be quite significant. Provider Sensitivity Sensitivity An African American heterosexual female says, “I go to this man gynecologist and I told him I'm HIV positive and I could tell by his attitude that he was totally against that. He says, ‘Well, you know safe sex’. I said, ‘Well, do you know anybody with it?’ He says, ‘Well, I'm a doctor’. I said, ‘Is there anybody that you love that is positive?’ ‘Well, no.’ I said, ‘Well, that's why you feel the way you do’, I said, "But I'm going to tell you something. This virus is for everyone. And you're married. It's still for you because that's where I got it from, from my husband that loved dearly. You understand?” Another African American heterosexual female says, “I was the only woman every time I went to a clinic to do something. There wouldn't be no other woman there. So, I was like, ‘Well, hell, am I the only woman?’ And that's why I went to the directory to find other places to go, because all the services were for men. When you can't do a pap smear, you know you're in trouble. I know you've done seen a vagina. Open up and see what's happening. Do a thing in there. Do a culture." She told me, she said, ‘No, we don't do them.’ She said, ‘I don't even know how to hold the thing.’ And when she pulled it out I said, ‘You're right. Let me pull my underwear back on. "Uh-uh. You're going to hurt me. So, I said, ‘No’. I had to find out what was out there for women and children.” A Latino IDU says, “I understand that I have to do most of the footwork, but (if you walk in there) you got somebody that is sitting behind the desks just thinking you owe them something and all you're trying to do is seek help. Same thing at the welfare office. They think you owe them something. And the man could look at me and tell that I do not trust the system.”



Feel like a number An Anglo MSM/W says, “(Name of agency) is so big, they have so many clients that they are not able to deal with you on that one-on-one level, on that personal level. That's why I picked an agency that was small. The clientele every year for my agency is 2,300.” Discrimination An African American MSM/IDU says, “The reason I left there was because it was obvious that they were prejudiced and it was obvious that me being black was meaning that I was the last thing on the totem pole to be seen. If they had nothing else to do and if they had time, then they would see me and that was not acceptable. So I left and I stayed home and got really sick and they took me to the emergency (room).” An African American MSM says, “I was wearing a diaper and I see this (agency) over there, home health care services. These two prim and proper white girls came out (to the waiting room) and they ask you questions and they notice the bag of garbage (I have with me). They ask me about the garbage and I say I will take it out I was refused on that alone. I was walking with a walker with wheels on it. I was deathly ill. I weighed about 142 pounds and I was refused and right. Now in my occupation delivering prescriptions to residences, I'm delivering to guys who make it to the gym everyday paid for by (name of agency). They get those gym passes for 24-hour Fitness or Bally's. These guys go the gym everyday and they got in-home health care. They get extra money for people to come to their house to clean their house and make their beds and they're running to the gym everyday. It pissed me the hell off when I saw that.” An African American heterosexual female, speaking of her interaction with providers, says, “Be more humane. That's all. Show eye contact, you know. You don't have hug us, but you could at least look at us when we're talking to you. Things like that are very important to me. What am I supposed to tell you? I'm positive. Look over here, you scared too. You’re putting on gloves. You don't want it either. You think we want this? We don't want this. And we can give it to you. But we give it to you. We don't want it. You can't get rid of it. You are not the same anymore. It's past a racial thing. Okay, I can deal with being black. I can deal with being poor, fat, whatever. Don't give me that. I'm no longer even human, okay, because now I can give this to someone else and hurt them. That's not right.” A Latino MSM says, “The social worker there was really extremely nice. She filled out the paperwork for me and I took it to the Social Security office in. They told me they couldn't help me because I wasn't their color.” Provider Expertise In various different services, there were many H-CAP respondents who say the service provider is “mean and rude”, or “as if you owe them something”. This was a problem cited across all service categories by all different clients.



An African American MSM/IDU says, “Some of the things that need to be addressed is the doctors’ being aware that you have had substance abuse. I recently saw a psychiatrist and I told her about my substance abuse and she practically ignored it. I told her I'm in an addict. I am (at the appointment) for less than thirty minutes and she prescribed Vicodin. I can't go there for help. The guy who came in after me died a week later from an overdose. I went to see her one more time - I talked to a therapist and a nurse and I saw her one more time. She prescribed another medication.” He continues, “What really had me angry with her is I told her ‘I'm suffering from lyphodystrophy. This medication that is supposed to help my depression is going to make me gain weight.’ Why am I depressed? Because of the lyphodystrophy. Why are you giving me medication that I will gain weight?” A Latino MSM says, “The doctor again just really didn't care. I had an appointment with him and instead of him telling me where to go or what to do or where was any information that I wanted, he just said, ‘I don't know. I don't know.’ I kept asking him how (to go about it). He didn't tell me anything about where to go or how to get help. Even though I inquired about it he still didn't know and he refused to give me information.” Individual Individual barriers, particularly lack of knowledge about services and location of providers or who to ask for services were cited by about 40% of PLWH/A. In general they are moderate level problems, but as noted below, for particularly Hispanic populations, these barriers can be formidable. Knowledge In all the services, H-CAP questionnaire respondents frequently mentioned being unable to communicate with service providers because of a language barrier. Many cited not being able to access services such as client advocacy, individual mental health appointments, and legal services due to the agency not having bilingual staff. In many cases, monolingual Spanish speakers say their doctors cannot communicate to them in Spanish, but rather than allowing another person to translate, which would be an intrusion on their confidentiality, they do not understand the content of their medical appointments. Another frequently cited problem was not knowing that the service exists. Many participants of H-CAP felt that their case manager would not tell them about the service, that the case managers were not helpful for not offering the service. When finding out about the service, many feel distrust towards the case manager for withholding information, and in turn do not know who to ask for help. An English-speaking Latino IDU says, “There are a lot of things that the Latino community does need as far as assistance: some of them that don't speak proper English, the medications that they need to be aware of, and the symptoms and the diagnoses of the virus that they are so afraid, or they may be infected and come up and explain to family members that may not



understand. But it's a community where they need to start recognizing that this is a reality that we deal with. It's not anything wrong or dangerous to others unless you make it that way.” Well-Being While few participants discussed physical health as a problem in accessing services, many did talk about the period before they entered care. Their state of mind and mental ability to deal with the treatment is discussed below. A Latina transgender (MTF) says, “Desperation from the bondage of my hell that was induced with my own hand and living with HIV, my own depression, my own psychological thoughts, plus the drugs and alcohol. (What would get me into care earlier?) Just getting older and knowing better. Just needing to break away from the drugs and alcohol. I just needed that last kick in the ass by the disease to get me on the right track.” A Latino MSM says, “There are a lot of people out there that still don't understand that there is help out there. Because a lot of people are worried about money or they don't have insurance and they figure, ‘I can't get help.’ But you just need to get someone to get you to that door, a phone call. That's the reason why I couldn't (get back into care). I didn't want to go to the doctor because I thought he would probably tell me, ‘Well, you need to do this and do that.’ You've got to start somewhere. And a lot of people are kind of scared. They are kind of shy or like me, embarrassed to go up someone and ask for something.”



SPECIAL POPULATIONS The following section presents the profile of nine special populations of PLWH/A in Los Angeles County. These are special populations have unique needs and challenges to obtaining HIV services and or populations that are disproportionately impacted by the HIV epidemic. For instance, as shown in Table 1-22, MSM of Color represent about 2% of the Los Angeles County population, however, they account for about 55% of the PLWH/A. The table also shows that among the MSM of Color, almost 10% are living with HIV/AIDS. Table 1-22 Special Population Estimates1

Special Population

Estimated population

in LAC

Estimated Percent of Total LAC Population

Estimated number

living with AIDS

Estimated number

with HIV / AIDS

(aware)

Estimated % of Total Pop

PLWH/A % PLWH/A TOTAL POP 10,008,000 100.0% 19,7523 42,0002 .4% 100.0% MSM of Color 222,000 2.2% 8,300 23,000 10% 54.8% MSM- Anglo 108,000 1.1% 6,100 10,300 9.50% 24.5% Recently Incarcerated 165,000 1.6% 1,500 4,400 2.70% 10.5% Women of Childbearing Years 2,449,000 24.5% 1,500 4,900 0.20% 11.7% Youth 13-24 1,560,000 15.6% 220 2,100 0.10% 5.0% IDU 166,000 1.7% 2,800 6,100 3.70% 14.5% Non-IDU Substance Users 219,000 2.2% 1,100 3,300 1.50% 7.9% Homeless and Unstably Housed 236,000 2.4% 3,300 8,300 3.50% 19.8% Serious Mental Illness 343,000 3.4% 1,100 3,200 0.90% 7.6% Transgender 10,000 0.1% 550 1,700 17% 4.0% Undocumented 733,000 7.3% 800 2,500 0.30% 6.0% 1 Estimates for the special populations were provided by the HIV Epidemiology Program, Los Angeles County Department of Health Services 2. From HIV Epidemiology estimate of BRG 3. HARS, As of June 2004 Nine special populations are profiled in the following text including 1) Men of Color who have sex with men, 2) Recently Incarcerated, 3) Undocumented, 4) MSM, 5) Latino/as or Hispanics, 6) Severely Mentally Ill, 7) Women of Child bearing age (18-49), 8) Homeless, 9) Youth (18-24). These populations were identified as special need populations in the Ryan White Title I grant application for Year 15. Additional populations identified as a special population also include substance users, transgenders, those multiply-diagnosed with HIV, substance use and mental illness; sex workers; and African-Americans.



Men of Color Who Have Sex With Men (MSMC) Non-Anglo Men Who Have Sex with Men include African American, Latino, API, and other non-Anglo men who identify as gay or report having contracted HIV from a man. Unlike the MSM category under risk groups, MSMC include MSMC injection drug users as well. Demographic Profile • MSMC represent 45% of the sample population. Based on HIV Epidemiological

estimates, MSMC represent about 55% of all PLWH/A.11 A high percentage (46%) of the sample was born in Mexico/Central America, followed closely by those born in the United States (47%). A significantly smaller proportion was born in South America (3%), Asia (2%), Africa and the Caribbean (1% each). Consistently, 64% of MSMC identifies their racial or ethnic background as Hispanic or Latino, 32% as Black and 4% as Asian.

• The mean age of the sample is 40. Eighty-five percent (85%) are between the ages of 20 and 44 years, and those 45 years or older make up the remainder of the sample (15%).

• The educational level of MSMC is similar to other PLWH/A with 28% reporting not completing high school or obtaining a GED. Twenty-six percent (26%) are employed either part or full-time, and their income tends to the lower end with 61% making less than $9,000 a year and 33% between $9,000 and $18,000.

• Like other PLWH/A, most MSMC live in an apartment or house they rent (64%), and 7% reside in an apartment or house they own. Slightly more than one-fourth of the sample lives with a partner (27%), and those who live with a partner or lover who is also HIV positive comprises 46%.

• Almost half of MSMC are uninsured (49%), and 39% report Medical or Medicaid coverage.

Physical and Emotional Health • Fifty percent (51%) of MSMC feel that their physical health is good to excellent, and

around two-thirds (63%) report their physical health has improved since they first sought treatment. Emotionally, about half (47%) of all MSMC report having good to excellent emotional health currently, and 57% feel their emotional health is better now than when they first sought treatment.

Stage of Infection • The majority (53%) of MSMC, like other PLWH/A, have generally been HIV positive

for more than eight years. • Under half of the MSMC (43%) report a diagnosis of AIDS, and nearly half (46%) report

disabling symptoms.

11 Two hundred and sixty-eight (268) Men of Color who have Sex with Men (MSMC) completed the 2004 HIV/AIDS Care

Assessment Survey. For analysis the data is weighted to bring risk groups back to proportion, and because we oversampled heterosexuals, MSM were weighted up, resulting the equivalent of an N of 332 MSMC.



Medication Adherence The significant percent of MSMC (76%) are currently taking antiretrovirals or protease inhibitors, and approximately one third (30%) are taking antibiotics to fight off infections. As with other PLWH/A, 30% have stopped seeing a doctor for six months and 22% for a year, since their diagnosis. Thirty-seven percent (36%) indicate never skipping their medication, and over one-half (58%) indicate forgetting to take the medications as the number one reason they do not adhere to their medication regimen. Co-Morbidities Over half of MSMC (57%) who have consumed alcohol have used alcohol within the last six months, with 24% consuming at least once a week. Nearly a quarter (24%) of MSMC indicate continuing marijuana use within the last six months with 21% reporting use of once a week or more. STD rates and mental health problems are lower within MSMC than amongst all PLWH/A. They show a lower rate of Hepatitis C (9%), and also a smaller proportion has been diagnosed with depression (50%) or anxiety (33%) within the last two years. Top Service Need Figure 1-48 shows the top ten service needs for MSMC who completed the 2004 Care Assessment Survey, which includes five primary health care services. MSMC seem to have service needs that are very similar to other PLWH/A, though their reported need for these services is slightly higher. The top five needs are: outpatient medical care (92%), bus passes (81%), oral healthcare (78%), benefits case manager (76%) and food pantry (68%). Figure 1-48 Top Service Needs for MSMC



Barriers Using a five point scale where “1” indicates a very small problem in seeking care and “5” represents a very big problem, participants were asked to rate 31 items in terms of the level of difficulty they represented for them when trying to access care. The following table shows the top five barriers along with the average score indicating the size of the barrier each of the items represented for them. MSMC show a slightly higher tendency to report problems in getting services than other PLWH/A. Shown in Table 1-23, three of the top five barriers are individual barriers, and the other two are organizational. Half of the MSMC report not knowing that a service or treatment was available, and it was a moderate problem for those reported it. This was followed by 48% of MSMC who reported a problem with paperwork or red tape. Forty-six percent (46%) reported a problem of inadequate insurance and for those with this problem is was a relatively high barriers. Table 1-23 MSMC: Top Barriers to Care

REASON % with Problem Average Score 5=very big 1=very small

Not knowing that a service or treatment was available to me 50.0% 2.9

Too much paperwork or red tape 48.1% 2.8 Not knowing who to ask for help 47.4% 2.9 Not knowing a location of the service(s) 46.7% 2.8 My lack of, or inadequate, insurance coverage 46.2% 3.1 Recently Incarcerated Recently incarcerated are defined as PLWH/A who report being in jail sometime in the last two years. Demographic Profile • About 12% of the sample reported being in jail sometime in the last 2 years. • The distribution of males and females is similar to all PLWH/A, 8% are male and 14%

female. • Compared to all PLWH/A, those incarcerated in the last two years are more likely to be

African American. Still the largest number, 37%, are Hispanic, followed by 35% Black, and 25% Anglo.

• Recently incarcerated are over twice as likely as all PLWH/A to be infected through IDU (18%).

• While half the recently incarcerated report being gay, they are more likely than all PLWH/A to report being heterosexual (30%) and bisexual (17%).

• Recently incarcerated have about the same education level as all PLWH/A, Twenty-eight (28%) did not graduate high school or obtain a GED, 33% have a high school diploma or



obtained a GED as their highest level of education, and 39% report some higher level of education.

• Compared to all PLWH/A recently incarcerated are much more likely to report not working and not looking for work (60%). Fifteen percent (15%) report being employed either part of full time and 23% are not working but looking for work.

• The income of the sample is lower compared to other PLWH/A, with 67% making less than $9,000 a year compared to 50% for the sample as a whole.

• People living with HIV/AIDS who have been recently incarcerated report a harder time than all PLWH/A finding stable housing. Just over a third (39%) lives in an apartment or house they rent, and 38% is either homeless or in transitional housing (e.g. “crashing” with someone without paying rent, a single resident occupancy or a half-way house). Over 20% report that their living situation is neither safe nor stable; this is not surprising since 59% reports being homeless within the last two years, and 47% has been in transitional housing during the same period of time.

• Significantly more recently incarcerated are uninsured compared to all PWLH/A. Nearly half (49%) of the recently incarcerated PLWH/A currently do not have any health insurance, and 40% reports Medical or Medicaid coverage.

Stage of Infection • Most of the recently incarcerated PLWH/A (55%) have been HIV positive for more than

eight years. About the same number of recently incarcerated as all PLWH/Afound out less than a year ago (7%).

• More recently incarcerated (54%) report disabling symptoms than all PLWH/A (47%), 45% have received an AIDS diagnosis.

• Recently incarcerated are less likely than other PLWH/A to feel their physical health has improved since they first sought treatment for their HIV, with 30% reporting that they feel worse now than before treatment, (compared to 20% of all PLWH/A) and a quarter reporting no difference. Half of the sample (50%) would describe their emotional health as fair, though 53% feel it has improved since they first sought treatment for HIV.

Medication Adherence Compared to other PLWH/A, recently incarcerated are more likely to have been out of care over six to twelve months since being diagnosed with HIV disease. Fifty percent (50%) have stopped seeing a doctor for at least six months and 32% for over a year since their diagnosis. A lower percent (54% compared to 76% of all PLWH/A) report being on antiretrovirals or protease inhibitors. A relatively high percentage (22%) of recently incarcerated report currently stopping their medication regimen when compared to all PLWH/A (7%). This is supported by focus group comments where those recently incarcerated note the inconsistent treatment of HIV within California’s criminal justice system. While 11% of all PLWH/A report not being prescribed medication, 18% of recently incarcerated report not being prescribed medication. The primary reason for skipping their medication is their doctor advised them to stop taking their



medications (34%), which can be explained by the higher rates of hepatitis C and drug use in this population, and the lack of concern showed by the doctors in jail, repeatedly reported by the participants of the study. The other reasons for skipping or stopping their medicine are forgetting (35%) and side effects (22%). Co-Morbidities Recently incarcerated PLWH/A report higher rates of STDs than all PLWH/A. The rate of reported Hepatitis C (35%) is over twice that found among all PLWH/A (15%). Nineteen percent (19%) have had hepatitis A or B in the last two years, and 14% report having genital herpes. Eighteen percent (18%) of recently incarcerated indicates sharing needles as their probable cause of infection. Over one third (36%) of the recently incarcerated living with HIV/AIDS report a history of injection drug use, compared to 15% of the total PLWH/A sample. Crystal meth has the highest continued use with 14% reporting use of it in the last six months and, among those, 12% using it once a week or more. Few (3%) report heroin use. Many of the recently incarcerated have a history of mental illness in the past two years. Sixty-six percent (66%) have been diagnosed with depression, 45% with anxiety, and 30% bipolar disorder. Furthermore, 32% report “Other” diagnoses, a category that includes severe mental health problems such as schizophrenia. Like all PLWH/A, over 80% of the recently incarcerated report receiving individual mental health counseling since diagnosed with HIV, and 76% have been prescribed medication for their mental health problem. A significantly higher percentage of recently incarcerated than all PLWH/A (39%) have been admitted for mental health problems. Top Service Need Figure 1-49 shows the top ten service needs for the recently incarcerated PLWH/A, which includes five from the removal of barriers core, four primary health core services, and one patient care coordination service. The top five needs are: outpatient medical care (94%), bus passes (88%), benefits case management (84%), food pantry (79%), and individual mental health (75%).



Figure 1-49 Top Service Needs Among Recently Incarcerated

Barriers Using a five point scale where “1” indicates very small problem in seeking care and a “5” represents a very big problem, participants were asked to rate 31 items in terms of the level of difficulty they represented for them when trying to access care. Top rated barriers are shown in Table 1-24. The two largest problems experienced were their state of mind to deal with the treatment and not knowing a location of the service. Although fewer (51%) of recently incarcerated say that lack of insurance is a problem, for those with tat problem it is a big barrier. In general, recently incarcerated PLWH/A report more problems in getting services than other PLWH/A, and they give those problems higher difficulty ratings. Table 1-24 Recently Incarcerated: Top Barriers to Care


Not knowing a location of the service(s) 68.3% 3.0 My state of mind or mental ability to deal with the treatment 60.8% 2.8


Too much paperwork or red tape 57.3% 3.3 My lack of, or inadequate, insurance coverage 50.8% 3.7 Undocumented PLWH/A Of the 732 participants in the survey, 123 reported they were undocumented. In the weighted analysis undocumented still are over-represented and represent nearly 15% of the PLWH/A. HIV Epidemiology estimates that undocumented represent under 5% of all PLWH/A.



Demographic Profile • Most of the undocumented in the sample are males (91%). The vast majority (94%) were

born in Mexico/Central America, 5% in South America and 1% in Africa. Not surprisingly, 97% of undocumented PLWH/A describe their ethnic background as Hispanic or Latino/a, followed by 2% that identify as Black and 1% each as Anglo or Asian.

• The mean age of undocumented PLWH/A is 35. Youth (18 to 19 years old) represent only 1% of the sample, those between the ages of 20 and 44 years make up 92% and those 45 years or older make up 7% of the population.

• Far more undocumented (44%) have not completed high school or obtained a GED than all PLWH/A. Nevertheless they have a much higher employment rate (37%) than other PLWH/A (21%). A high percentage (39%) is looking for work.

• Despite their higher employment rate, undocumented living with HIV and AIDS are much more likely than other PLWH/A (82% compared to 50%) to have an annual income of less than $9,000.

• Most of the undocumented PLWH/A (64%) live in an apartment or house they rent, and 7% in an apartment or house they own. Their living situation is mostly habitable (90%), similar to other PLWH/A, but unlike the broader sample, a higher percentage feel their housing is unstable (29%) and unsafe (23%).

• More undocumented (84%) than all PLWH/A feel they contracted HIV by having sex with a man. This corresponds to the fact that 59% of the undocumented PLWH/A consider themselves gay and 18% bisexual.

• Far more undocumented than all PLWH/A say they are uninsured (81%). Relatively few (13%) report any Medi-Cal or Medicaid coverage.

Physical and Emotional Health • According to the sample, 81% feels that their physical health is fair or better, and more

undocumented (62%) than all PLWH/A say their physical health has improved since they first sought treatment. Emotionally, 94% of all undocumented PLWH/A report currently having fair emotional health or better, and 59% feels it is better now than when they first sought treatment.

Stage of Infection • The 2004 Care Assessment Survey shows that 43% of undocumented PLWH/A have

been positive for three to eight years, compared to 28% of the general PLWH/A. Only 31% has lived with HIV for more than eight years, compared to 54% of the general PLWH/A.

• Thirty-eight percent (38%) of the undocumented PLWH/A report disabling symptoms, and 45% have received an AIDS diagnosis.



Medication Adherence Undocumented PLWH/A are slightly less likely to be out of care than other PLWH/A (18% have stopped seeing a doctor for over a year since diagnosed), and a higher percentage (82%) reports a regimen of antiretrovirals or protease inhibitors. Compared to other PLWH/A, undocumented are less likely to skip or end their medication regimen, with 47% reporting never skipping their medication. The primary reasons for skipping medications are because they forgot (47%), followed by just not wanting to take them (24%), and side effects (23%). Co-Morbidities Undocumented PLWH/A report a higher rates of STDs than all PLWH/A. Twenty-two percent (22%) report having had genital warts, 19% have had genital herpes, and 15% have had syphilis in the last two years. Sixteen percent (16%) report having hepatitis A or B. Substance use is relatively low among undocumented PLWH/A and much lower than among all PLWH/A. Over half of those who had ever consumed alcohol (73%) consumed alcohol within the last six months (63%) with 18% drinking once a week or more. Only 7% report ever injecting substances compared to 15% of the total sample. A large percentage (64%) of undocumented PLWH/A have received mental health services since they were diagnosed with HIV. Most of them (75%) have received individual counseling or therapy with a professional, and 48% have received medication for psychological or behavioral problems. In the last two years, 47% have received a diagnosis of depression and 22% have received a diagnosis for anxiety. Top Service Need Figure 1-50 shows the top ten service needs for the undocumented PLWH/A who completed the 2004 Care Assessment Survey, which includes six primary health care services. Undocumented PLWH/A report higher needs than all PLWH/A, especially in the housing and food services, which is consistent with their lower income. The top five needs are: outpatient medical care (96%), benefits case manager (87%), bus passes (85%), drug payment assistance (80%) and oral healthcare (79%). Figure 1-50 Top Service Needs for Undocumented PLWH/A



Barriers Using a five point scale where “1” indicates very small problem in seeking care and a “5” represents a very big problem, participants were asked to rate 31 items in terms of the level of difficulty they represented for them when trying to access care. Table 1-25 shows the top five reasons along with the average score indicating the size of the barrier each of the items represented for them. On average, more undocumented PLWH/A reported problems in getting services than all PLWH/A. Four of the top five barriers are individual barriers, and the other is organizational. The largest problem experienced was not knowing who to ask for help (65%), and they rated it as a moderate problem. That was followed by 64% not knowing that a service or treatment was available, as a moderate problem. For those with a problem with insurance, it is a large barrier. Table 1-25 Undocumented: Top Barriers to Care


Not knowing who to ask for help 64.5% 3.2 Not knowing that a service or treatment was available to me 63.7% 3.1

Not knowing a location of the service(s) 59.1% 3.0 Not understanding the instructions for obtaining the service or treatment 58.3% 2.8

My lack of, or inadequate, insurance coverage 57.1% 3.7 Men who have Sex with Men (MSM) Four hundred and forty (440) MSM, including MSM/IDU, completed the survey. The were under-sampled to allow sufficient numbers of more difficult to reach populations into the sample for analysis. When the MSM and MSM/IDU are weighed up to their proporpiton in the populations they represent 78% of the weighted sample, with a weighted sample size of 570. Demographic Profile • Forty percent (40%) of MSM describe their racial background as Hispanic, 20% as Black

and 3% as API and other ethnicities. All of them form the MSM of Color category, with somewhat different needs than the Anglo MSM, which compose over one-third of the MSMs (37%).

• MSM were mostly born in the US (63%), and about a third (29%) are from Mexico/Central America. This has an impact on the way they access services as 18% of the total MSM describe their legal status in the United States as undocumented.

• The mean age of MSM is 40. Youth (18 to 19 years old) represent only 1% of the total, those between the ages of 20 and 44 years make up 80% and those 45 years or older make up 18% of this subpopulation.



• Anglo MSM consistently have a higher level of education with only 9% not completing high school, compared to over a quarter of MSM of Color (27%). Similarly, over 60% of MSM of Color, but only 26% of the Anglo MSM, make less than $9,000 a year. Also, MSM of Color have a higher employment rate with 26% working part or full time as opposed to 13% of Anglo MSM.

• Most of the MSM live in an apartment or house they rent (65%) or own (8%). Their living situation is mostly safe (92%), habitable (97%) and stable (84%). MSMs are vulnerable to homelessness with 16% reporting being in transitional housing in the last two years, 15% reporting being homeless within the same period of time, and 11% in a homeless shelter.

• In the 2004 Care Assessment Project sample, 88% of MSM feel they contracted HIV by having sex with a man followed by 4% who indicated infection by having sex with a woman and 2% by sharing needles. Accordingly, 75% of the sample considers themselves gay, 18% bisexual or on the down-low and 6% heterosexual.

• Almost half of MSM of Color (49%) are currently uninsured, and 39% report Medi-Cal or Medicaid coverage. On the other hand, only 15% of Anglo MSM do not report any insurance coverage, and Medi-Cal or Medicaid covers the health care needs of 68% of this population.

Stage of Infection • More than half of MSM have been HIV positive for more than eight years (56%), and

only 7% have been positive for less than a year. • Forty-seven percent (47%) of the MSM of Color and 54% of the Anglo MSM report

disabling symptoms. Likewise, 42% and 60% respectively have received and AIDS diagnosis.

• Forty-three percent (43%) of MSM would say that their physical health is fair, while 47% say their health is good or excellent. Over half (55%) think it is better now than when they sought treatment. Emotionally, 44% describe their emotional health as good or excellent; consistently, 55% feel it has improved since they sought treatment for their HIV infection.

Medication Adherence About a third (31%) of MSM have been out of medical care for six months, and 23% have stopped seeing a doctor for over a year; the main reason for going back to care is getting sicker (51%). A high percentage (77%) reports being on antiretrovirals or protease inhibitors, and about a third is currently on antibiotics (33%). Thirty-seven percent (37%) of MSM report never skipping or ending their medication regimen, and the main reason for stopping or skipping their medication is forgetting (61%), followed by side effects (29%).



Co-Morbidities MSM have about the same rate of STIs as all PLWH/A with 15% reporting Hepatitis A or B in the last years, and 17% reporting Hepatitis C. Hepatitis C is much greater among the MSM/IDUs (35%) than other MSM. Substance use is higher amongst Anglo MSM than amongst MSM of Color, specifically for drugs such as crystal meth. Anglo 55% of all Anglo MSM living with HIV and AIDS report they have used crystal meth compared to just 21% of MSM of color. MSM/IDU account for the 8% of MSM who report injecting drugs, but MSM as a group are less likely to inject drugs than all PLWH/A. Seventy-one percent (71%) of MSM living with HIV and AIDS have accessed mental health counseling or treatment since diagnosed with HIV, and 48% have received medication for psychological or behavioral problems. A greater percentage of Anglo MSM report mental health problems than MSM of color. Sixty-five percent (65%) of Anglo MSM report having been diagnosed with depression in the last two years and 51% with anxiety. MSM of Color, on the other hand, report diagnoses of 50% and 33% respectively for these two mental health problems. Top Service Need The following figure shows the top ten service needs for the MSM who completed the 2004 Care Assessment Survey, which includes five primary health care services. MSM of Color have, overall, the same pattern of needs to Anglo MSM, but their need is slightly greater. The top five needs are: outpatient medical care (95%), oral healthcare (80%), benefits case manager (77%), bus passes (72%), and food bank or pantry (68%). Figure 1-51 Top Service Needs for MSM living with HIV/AIDS



Barriers Using a five point scale where “1” indicates very small problem in seeking care and a “5” represents a very big problem, participants were asked to rate 31 items in terms of the level of difficulty they represented for them when trying to access care. Table 1-26 shows the top five reasons along with the average score indicating the size of the barrier each of the items represented for MSM. The barriers cited by MSM of Color and Anglo MSM tend to be the same. The one big difference is that 46% of MSM of Color say they a problem with insurance while 28% of the Anglo MSM say insurance coverage is a problem. Anglo MSM in general find fewer problems in getting care than MSM of color, and they rate problems they have as less serious. Both groups feel that not knowing that a service or treatment was available to them is the biggest barrier, and it was a problem for about half of the MSM. While about a quarter of the MSM said that eligibility was a problem for them, it was among the biggest barriers they faced in receiving care. Table 1-26 MSM: Top Barriers to Care

Reason % with problem Average Score 5=very big 1=very small


Too much paperwork or red tape 43.7% 2.9 Not knowing a location of the service(s) 43.5% 2.8

Not knowing who to ask for help 42.7% 2.9 The amount of time I had to wait in a waiting room 40.4% 2.6

Latinos/as or Hispanics Because of the oversampling of women, Latinas were oversampled in the survey, and weighted back to their correct population proportion. Three hundred and twelve 312 Latinos completed the survey (43%) and, for analysis, were weighted back to 40%. Demographic Profile • The Latino gender proportion is the same as for all PLWH/A, 87% male and 13% female. • Over two-thirds of Latinos (69%) were born in Mexico/Central America, and 25% in the

United States. Of the 75% born outside the US, over half (51%) are undocumented and 17% have a permanent visa.

• The mean age of the Latinos is 37. Eighty-nine percent (89%) of the sample is between the ages of 20 and 44.



• The majority feel they contracted HIV by having sex with a man (83%), with 61% identifying themselves as gay. In addition, 13% portray their sexual orientation as bisexual and 23% heterosexual or straight.

• Over a third (40%) has not completed high school, significantly higher than that of other PLWH/A (25%). Their employment rates are somewhat higher (29% working part time or full time), but their yearly income is lower than other PLWH/A (50%), with 65% of the population making less than $9,000 a year.

• The living situation of the Latinos is similar to other people living with HIV/AIDS. Over two-thirds (67%) rents a house or apartment, and the majority feels that their living condition is safe (85%), habitable (93%) and stable (80%).

• A high percentage of the Latinos are currently uninsured (54%) and far fewer Latinos (35%) report Medi-Cal or Medicaid coverage than all PLWH/A (50%).

• Nevertheless, a much lower percentage receives benefits such as long term disability (13% Latinos versus 23% overall) or SSI (21% Latinos versus 34% of all PLWH/A), and this could be due to their residency status among other factors.

Physical and Emotional Health • Latinos are more positive about their physical health than all PLWH/A but rate their

emotional health about the same. When asked about their physical health, 91% of the Latino sample indicates it is fair, good, or excellent; 26% feel it is better and 36% much better, as compared to when they first sought treatment. Emotionally, 88% feel their emotional health is fair, good, or excellent, and 55% feel it has improved since they sought care for their HIV infection.

Stage of Infection • The length of HIV infection for Latinos has been more than eight years (48%), and 43%

have been told that their infection has progressed to AIDS. Similar to all PLWH/A, 41% report disabling symptoms.

Medication Adherence Latinos appear to be slightly less likely than other PLWH/A to stop seeking care, with only 26% reporting not seeing a doctor for six months since being diagnosed with HIV. Seventy-eight percent (78%) of Latinos report taking antiretrovirals or protease inhibitors and 28% report using antibiotics. Forty percent (40%) of Latinos living with HIV/AIDS have never skipped or stopped their medication regimen, while 30% report having skipped their medication at least once a month. The primary reasons for skipping their medications are because they forgot (54%), side effects (24%) and just not wanting to take them (24%).



Co-Morbidities The STD rates among the Latino population do not differ significantly from all PLWH/A. They have lower rates of hepatitis (all types), and somewhat higher rates of genital herpes and warts (16% each), and syphilis (11%). Drug use is low among the Latinos. Only12% report ever injected drugs, and injectable substances such as crystal meth or heroin have a lower consumption rate (2%) when compared to other PLWH/A (3.5%). Latinos report fewer mental health problems than the general population of PLWH/A. They report half as many diagnoses of bipolar disorder (7%) and also less anxiety cases (29%) than the general PLWH/A. Depression rates, although, are quite high with more than half (52%) being diagnosed in the last two years. This may reflect lack of access to mental health services, or a cultural reluctance to visit mental health providers. Top Service Need Figure 1-52 shows the top ten service needs for Latinos living with HIV/AIDS, which includes six primary health core services. The top two are core medial services, outpatient medical care (94%), oral healthcare (79%). Third is bus passes (79%). The other top care services reflect their lack of insurance and ability to find reimbursement for care and include benefits case manager (78%) and assistance paying for medications (70%). Latinos are also more likely than all PLWH/A to mention the need for prevention information. Figure 1-52 Top Service Needs among Latinos



Barriers Using a five point scale where “1” indicates very small problem in seeking care and a “5” represents a very big problem, participants were asked to rate 31 items in terms of the level of difficulty they represented for them when trying to access care. Table 1-27 shows the top five barriers to accessing care along with the average score indicating the size of the barrier each of the items represented for them. On average, more Latinos report problems in getting services than other PLWH/A, and they give those problems slightly higher difficulty ratings. The two largest problems experienced were not knowing that a service or treatment was available to them (57%) and they rated it as a moderate problem. That was followed by 53% not knowing the location of a service, as a moderate problem. Confirming their lack of insurance, a large percent also mention lack of insurance coverage and for those without insurance, it is a high barrier to receiving care. Table 1-27 Latinos: Top Barriers to Care



Not knowing a location of the service(s) 53.1% 3.0 Not knowing who to ask for help 52.8% 3.1 My lack of, or inadequate, insurance coverage 50.1% 3.5 Too much paperwork or red tape 46.5% 3.0 Severely Mentally Ill (SMI) The severely mentally ill are defined as those who are have had medication for a mental illness or reported being an inpatient for a mental health illness. Demographic Profile • Slightly less than half (49%) of the sample reported being mental illness. Approximately

1% are under 19 years old, while 77% are between the ages of 20 and 44 and 22% are 45 years or older.

• PLWH/A born in the US and Anglo tend to be more likely than all PWLH/A to report severe mental illness. Latinos tend to be less likely to report mental illness. About three-quarters (73%) was born in the United States, 22% in Mexico/Central America, 2% in South America and 1% in Africa. Forty percent (40%) of those with a history of mental illness describes their racial background as Caucasian or Anglo, 33% as Latino/a and 23% Black. This data suggest the availability of mental health resources and cultural factors play a large role in the use of these services.

• The educational level of the SMI is similar to other PLWH/A with 23% of them not completing high school (compared to 25% for all PLWH/A).

• Predictably, the employment rate for the SMI is twice as low as all PLWH/A with only 4% working full-time compared to 10% of all PLWH/A.



• Like other PLWH/A, most of the SMI (66%) live in an apartment or house they rent, and 6% in an apartment or house they own.

• Twenty-eight percent (28%) of SMI are uninsured, a lower percentage than amongst all PLWH/A (36%), which is consistent with lower reported rates among those who do not have access to reimbursed mental health services.

Physical and Emotional Health • SMI living with HIV/AIDS report slightly worse physical health and significantly worse

emotional health. Still 88% of SMI report fair physical health or better , with 53% indicating that their physical health has improved since they first sought treatment. Emotionally, their health tends are relatively low with 16% describing it as poor and 47% fair. However, 55% state that it is better now than when the when they first sought treatment for their HIV, about the same as all PLWH/A.

Stage of Infection • Severely Mentally Ill PLWH/A report a slightly higher percent of length of HIV infection

at eight years or more (59%) than found among all PLWH/A (54%). • In the 2004 Care Assessment Survey, 53% of the SMI has an AIDS diagnosis, and, more

than half (53%) reports disabling symptoms – significantly higher than all PLWH/A. Medication Adherence Most of the SMI (74%) are currently taking antiretrovirals or protease inhibitors, and a third (33%) reports never skipping their medication, similar to all PLWH/A. The most common reasons for not taking their medication are forgetting (56%) and side effects (33%). SMI have not stopped seeing a doctor more than other PLWH/A, only 32% reports being out of care for six months, and 24% for a whole year. Co-Morbidities Severely mentally ill people living with HIV/AIDS report more substance use than all PLWH/A. Sixty-five percent (65%) have tried marijuana, 55% crack or cocaine and 43% crystal meth. STD rates do not deviate significantly from all PLWH/A. Nineteen percent (19%) reporting Hepatitis C infection (compared to 15% for all PLWH/A) and 14% genital herpes (compared to 11% for all PLWH/A). This is a population defined by their mental health issues. Therefore, as expected, the mental health problems rates are very high, with 83% being diagnosed with depression in the last two years, 62% with anxiety, and 25% with bipolar disorder. Several report more than one mental illness.



Top Service Need Figure 1-53 shows the top ten service needs for the Severely Mentally Ill living with HIV/AIDS who completed the 2004 Care Assessment Survey, which includes five primary health care services. SMI ranking of service needs is very similar to other PLWH/A, but, as expected, they report a significantly greater need for individual mental health therapy. Group mental health needs (42%) is higher than all PLWH/A, but not to the same degree as individual mental health. The top five needs are: outpatient medical care (95%), benefits case management (81%), dental (79%), individual mental health (78%), and bus passes (77%). Figure 1-53 Top Service Needs among Severely Mentally Ill

Barriers Using a five point scale where “1” indicates very small problem in seeking care and a “5” represents a very big problem, participants were asked to rate 31 items in terms of the level of difficulty they represented for them when trying to access care. Table 1-28 shows the top five reasons along with the average score indicating the size of the barrier each of the items represented for them. SMI show a slightly higher tendency to report problems in getting services than other PLWH/A. Four of the top five barriers are individual barriers, and the other is organizational. The largest problem experienced (54%) was not knowing that a service or treatment was available, and they rated it as a moderate problem. That was followed by not knowing the location of a service (50%), too much paperwork or red tape, a problem experienced by 47% of the SMI, who considered it a small to moderate problem. Although only a quarter of the SMI said that eligibility was a barrier. For them, however, it was a very big barrier.



Table 1-28 Severely Mentally Ill: Top Barriers to Care



Not knowing a location of the service(s) 49.4% 2.9 Too much paperwork or red tape 46.8% 3.0 My physical health has not allowed me to get to the place where the service is provided 45.5% 2.6

Not understanding the instructions for obtaining the service or treatment 45.5% 2.7

Women of Childbearing Age (WCB) For the purpose of this report, women of childbearing age (WCBA) are women between the ages of 18 and 49. One hundred and twelve (112) WCBA participated in the survey, and when weighted back to their proper proportion, WCBA represent just over 10% of all PLWH/A. Table 1-29 presents the age, racial/ethnic, risk group, and geographic distribution for WCBA living with HIV/AIDS. It indicates that: • WCBA living with HIV/AIDS are mostly women of color (83%); Anglo WCBA living

with HIV/AIDS represent about 17% of all WCBA participating in the survey. There are slightly more Latinas than African American women, although African American women, who represent a much smaller population in LA, have a higher rate of infection.

• IDU transmission accounts for 9% of the cases among WCBA living with HIV/AIDS. Seventy-four percent (74%) of WCBA accessing care say heterosexual sex was their likely mode of transmission.

Table 1-29 Women of Childbearing Years (18-49): Demographic Profile AGE GROUP

18-19 5.3% 20-44 88.1%

45+ 6.6% RACE/ETHNICITY

African American/Black 37.3% American Indian or Native American 1.4%

Asian or Asian American 2.1% Native Hawaiian or other Pacific Islander 1.1%

Anglo/White 16.8% Latino 40.6%

Other/mixed 0.7% RISK GROUP

IDU 8.9% Hetero 73.5%

Other/unknown 2.5%



Not shown in the table above is: • Thirty-six percent (36%) of WCBA living with HIV/AIDS do not have a high school

education. Thirty-two percent (32%) have received a high school diploma and four percent (4%) of WCBA living with HIV/AIDS have received a General Equivalency Degree. Twenty-nine percent (29%) have completed at least one year of college. .

• Slightly more WCBA,19%, than all PLWH/A are employed in some capacity, and 21% WCBA say they are not working but are looking for work. Significantly more WCBA (49%) are not working and not looking for work.

• Based on the 2004 Needs Assessment Survey, 62% of WCBA living with HIV/AIDS earn less than $9000 a year. Forty-six percent (46%) receive health insurance coverage through Medical/Medicaid and 6% through Medicare. Thirty-four percent (34%) report having no health insurance.

• Not surprisingly, WCBA living with HIV/AIDS (17%) are less likely than other PLWH/A (37%) to live alone. Forty-three percent (43%) indicate that they are living with roommates and 50% say that there are children in their households, as compared to 14% of all PLWH/A.

• Seventeen percent (17%) of WCBA living with HIV/AIDS consider their current housing situation unstable, and about 11% believe it is unsafe. Fourteen percent (14%) of WCBA living with HIV/AIDS have lived in a drug treatment facility and 19% have lived in a homeless shelter over the last 2 years.

Physical and Emotional Health Significantly more WCBA (62%) than all PLHW/A say that their physical health is good to excellent , but about the same percent (53%) say they are better now than when they found out they were infected. Their reported emotional health is the same as for all PLWH/A. Stage of Infection Table 1-30 shows the length of HIV infection for WCBA living with HIV/AIDS. The majority (74%) have been positive for 3 or more years. WCBA living with HIV/AIDS (32%) are less likely to report and AIDS diagnosis than all PLWH/A (47%), and 32% report they are experiencing less disabling symptoms from HIV than all other PLWH/A (47%). Table 1-30 Length of HIV Infection in WCBA

Percent (%) Less than 1 year 11.2%

1 to 3 years 15.0% 3 to 6 years 28.0%

More than 8 years 45.9% Total 100%



Medication Adherence According to the 2004 Needs Assessment Survey, almost three-quarters (74%) of WCBA living with HIV/AIDS reported that they are currently taking antiretrovirals or protease inhibitors. Thirty-seven percent (37%) report adhering to the schedule prescribed. Forty-seven percent (47%) report skipping their medication at least once a month and 8% have abandoned the medications all together. Table 1-31 shows the top five reasons WCBA living with HIV/AIDS skip taking their medications, where forgetting to take the medications was number one. Table 1-31 WBCA: Top Reasons for Skipping Medications

Top Reasons Percent Forgot 45.1 Side effects 23.5 Just did not want to take them 18.8 My doctor advised me to stop taking the medications 18.1 Ran out of medications 17.8

Co-Morbidities According to the 2004 Needs Assessment, 7% of WCBA living with HIV/AIDS have had hepatitis A or B and about 21% have had hepatitis C. Thirty-nine percent (39%) have had yeast infections; 13% genital herpes; 5% genital warts, 6% Chlamydia; 4% syphilis and 4% percent have had gonorrhea in the last two years. Alcohol and marijuana are the most frequently used substances among WCBA living with HIV/AIDS, where 38% of 67% that have ever used alcohol report alcohol consumption in the last six months, and 25% of 48% of WCBA that have ever used marijuana report marijuana usage in the last six months. Of the 12%WCBA who reported ever using heroin, 15% say that they use it at least once a week. The 2004 Needs Assessment Survey also reveals that WCBA living with HIV/AIDS are likely to receive some type of mental health service; 84% have received individual counseling or therapy, 50% have received group counseling; 22% were inpatient at a hospital for mental health compared to 70% of all other PLWH/A. Top Service Needs Figure 1-54 shows the top service needs for WCBA living with HIV/AIDS in the 2004 Needs Assessment. WCBA living with HIV/AIDS ranked outpatient medical care as their number one service need; this was followed by case management services (82%) and dental services (76%). As expected, WCBA living with HIV/AIDS (72%) reported a higher need than other PLWH/A (58%) for services from a specialist likely reflecting the ob-gyn needs of women. WCBA living with HIV/AIDS also reported a higher need than other PLWH/A for individual



mental health counseling (68%) and food services; food banks (72%) and food vouchers (65%). Figure 1-54 Top Service Needs for WCBA

Barriers Using a five point scale where “1” indicates a very small problem in seeking care and a “5”represents a big problem, participants were asked to rate 30 items in terms of the level of difficulty they experienced when trying to access care. Table 1-32 shows the top five reasons for not seeking care along with the average scores which indicate the size of the problem. More than half of the WCBA (52%) felt that their lack of knowledge about a service that was available to them was their biggest barrier in accessing care; this was followed by their lack of knowledge about the location of a service (50%), both with average scores of 3.0, representing moderate problems. Inadequate insurance coverage (36%) and lack of transportation (36%) with mean scores of 3.5, presented moderate to big problems for WCBA living with HIV/AIDS. Thirty-eight percent (38%) of WCBA living with HIV/AIDS reported that their “state of mind or mental ability to deal with the treatment” was a problem with a mean score of 2.9 representing a small to moderate problem. For the 13% of women who say that denial of service due to their criminal history is a barrier, most say it is a big barrier. Table 1-32 WCBA: Reasons for Not Seeking Care

REASON % with Problem

Average Score 5=very big 1=very

small Not knowing that a service or treatment was available to me. 52.0% 3.0 Not knowing a location of the service(s). 50.4% 3.0 My state of mind or mental ability to deal with the treatment. 37.7% 2.9 My lack of, or inadequate, insurance coverage. 36.3% 3.5 No transportation. 35.8% 3.5



Homeless Of the 732 people surveyed 31 (4.2%) say they are currently homeless. Currently homeless is defined as those saying they currently live in a car or other vehicle (12%) or vehicle, shelter or mission(68%), or outside (20%). Given the small sample size of currently homeless, the analysis may not be generalizable to all homeless persons living with HIV and AIDS. Demographic Profile • Over three quarters of the homeless interviewed live in the Metro SPA. Another 10%

live in the South Bay – Long Beach SPA. • The homeless living with HIV and AIDS are disproportionately female. Still 75% of

homeless PLWH/A identified themselves as male and 25% as female. • The homeless living with HIV and AIDS are disproportionately African American, with

36% identified themselves as African American, 32% Anglo, 32% Hispanic/Latino. • The homeless living with HIV and AIDS are less likely to have a high school degree than

all PLWH/A, with 36% reporting no high school education. However 26% received a high school diploma and 4% of homeless PLWHA completed a General Equivalency Degree (GED). Thirty-five percent (35 %) have some college education or higher.

• Not surprisingly, more homeless living with HIV and AIDS than all PWLH/A say their living conditions are unsafe (25% homeless and 9% all PLWH/A) Still, three-quarters (75%) of homeless PLWH/A say that their living condition is safe and 60% say its stable.

• In the last 2 years, 16% of homeless PLWH/A have been incarcerated and 14% have lived in a drug treatment facility.

• The homeless living with HIV and AIDS are among the poorest PLWH/A. Seventy-six percent (76%) of the homeless PLWH/A are earning less than $9000 a year. No homeless person reported earning more than $18,000.

• The vast majority of homeless are not working (98%). Twenty-one percent (21%) are looking for work.

• Forty-two percent (42%) of homeless PLWH/A currently do not have any health insurance. Forty-seven percent (47%) of homeless PLWH/A say that they are receiving health insurance coverage through Medical/Medicaid and 27% through Medicare.

Physical and Emotional Health • Homeless PLWH/A are less healthy than all PLWH/A; 38% of homeless PLWH/A report

their current physical health as good to excellent as compared to 50% of all other PLWH/A. Twenty-eight percent (28%) of homeless PLWH/A say that their current physical health is poor as compared to 9% of all other PLWH/A.



Stage of Infection • According to the 2004 Needs Assessment Survey 8% of homeless PLWHA identified

injection drug usage as the way they contracted HIV. Seventy-nine percent (79%) believe that they contracted HIV through sex with a man, 11% through sex with a woman and 1% from a blood transfusion.

• The majority of homeless PLWH/A interviewed (83%) have been positive for 3 or more years, and 6% have been aware of their status for 1 year or less.

• Sixty-seven percent (67%) of homeless PLWH/A report disabling symptoms, and 49% reported that their HIV had progressed to AIDS.

Medication Adherence Fewer homeless PLWH/A (65%) are currently taking antiretrovirals or protease inhibitors when compared to all PLWH/A (76%). Twenty-eight percent (28%) have skipped taking their medication at least once a month; 12% have stopped taking them all together. The top five reasons homeless PLWHA gave for skipping their medications were; forgetting to take them (56%); side-effects (50%); just not wanting to take them (28%); having a difficult schedule or requirements (24%) and being advised not to take them by a doctor (15%). Co-Morbidities In the 2004 Needs Assessment Survey, 19% report having hepatitis A or B in the last year, while 25% report having hepatitis C in the last year. In the past year, twenty-three percent (23%) of homeless PLWH/A report genital herpes and 31% report genital warts. About 6% report syphilis and 20% report Chlamydia. Homeless PLWH/A report high rates (18%) of gonorrhea, but this may be unreliable due to small sample sizes. Thirteen percent (13%) of homeless PLWH/A report a history of injection drug use. Figure 1-55 shows the usage of injectable substances for homeless PLWH/A as compared to all other PLWH/A, in the last six months. It should be noted that this is a percentage of PLWH/A and homeless that have reported ever using the substance. According to the figure, crystal meth is shown to have the highest usage among homeless PLWHA with 53% reporting that they have used it in the last six months. Heroin (40%) and crack/cocaine (38%) were also frequently used by homeless PLWH/A over the last six month. Figure 1-55 Injectable Substance Use in Last Six Months



Substance abuse and mental illness are co-morbidities reported by homeless. The 2004 Needs Assessment Survey reports that 64% of 70% of homeless PLWH/A who have ever used alcohol have used alcohol within the last six months, with 20% drinking at least once a week. Similarly, 55% of the 53% who report ever using marijuana say they have used marijuana in the last six months, with 27% reporting usage at least once a week. The homeless PLWH/A report high levels of depression (47%) and anxiety (37%). In addition, the homeless PLWH/A report higher percentages of bipolar disorder and dementia than all PLWH/A. Within the last two years, 31% of homeless PLWHA have received a diagnosis for bipolar disorder as compared to 14% of all other PLWH/A and 25% of homeless PLWH/A have been diagnosed with dementia as compared to 5% of all PLWH/A. Forty percent (40%) of homeless PLWH/A have been inpatient for mental health services at some point as compared to 23% of all other PLWH/A suggesting more severe mental health conditions among homeless PLWH/A. Three-fourths of the homeless PLWH/A have received individual counseling or therapy and 55% prescribed medication, but this is less frequent than all PLWH/A. Top Service Need Based on the 2004 Needs Assessment Survey, Figure 1-56 shows the top ten service needs for homeless PLWH/A which includes two housing services: housing information services (74%) and independent housing (69%), two transportation services; bus passes (95%) and taxi vouchers (75%) and two food services; food vouchers (70%) and food banks (69%). Other top needs include case management (85%), nutritional education (73%) and HIV prevention information in the doctor’s office (68%). Outpatient medical care (96%) was the number one service need among homeless PLWH/A. Figure 1-56 Top Service Needs for Homeless PLWH/A



Barriers Using a five point scale where “1” indicates a very small problem in seeking care and a “5”represents a big problem, participants were asked to rate 30 items in terms of the level of difficulty they experienced when trying to access care. Table 1-33 shows the top five reasons for not seeking care along with their average scores which indicate the size of the problem. The 2004 Needs Assessment Survey reports “not knowing the location of a service (56%) and not knowing that a service was available (55%) were the top two barriers to care for homeless PLWHA with average scores of 2.8 and 2.9 indicating small to moderate problems. Not having transportation was a larger barrier for homeless PLWHA (53%) than all other PLWH/A (29%) and was reported as a small to moderate problem (average score = 2.4). Not surprisingly, 46% of homeless PLWH/A reported that a lack of or inadequate insurance was a moderate to big problem for them with a mean score of 3.4. Almost half (49%) of homeless PLWH/A reported that their state of mind or mental ability to deal with the treatment was a small to moderate problem (average score =2.2) for them in accessing care. Table 1-33 Homeless: Top Barriers to Care

REASON % with Problem Average Score

5=very big 1=very small Not knowing the location of a service 56.1 2.8 Not knowing that a service or treatment was available to me 55.2 2.9 No transportation 52.9 2.4 My state of mind or mental ability to deal with the treatment 48.6 2.1 My lack of, or inadequate, insurance coverage 46.2 3.4 Youth Sixteen youth completed a survey, and youth, defined as 18 to 24 year old, represent 2.2% of the weighted sample. Because of the small sample size, the findings for youth may not represent all youth living with HIV and AIDS. Demographics • The majority of youths living with HIV/AIDS live in the Metro SPA (32%) and the South

Bay-LB SPA (28%). • Youth participant were more female than all PLWH/A; 78% identify themselves as male

and 22% as female. Nearly 80% of youth surveyed were Latinos (56%) and Anglo (32%) suggesting that Latino youth are under-represented.

• Over a third of the youth identify as heterosexual – significantly more than all PLWH/A. • The youth represented in the sample are in the lower socio-economic bracket. Two-thirds

(68%) had less than a high school education and 80% earned less than $9,000 annually. • Two-thirds of the youth surveyed lived independently in an apartment or house. Twenty-

two percent (22%) live with family members. Fifteen percent (15%) of youths surveyed lived in a homeless shelter over the last 2 years.



• Of all youths living with HIV/AIDS surveyed, 19% are working in some capacity and 18% are not working but are looking for work.

• The youth are more likely to have insurance, with 45% saying they receive health insurance coverage through Medical/Medicaid. Similarly, 45% of youth living with HIV/AIDS do not have any health insurance.

Physical and Emotional Health More youth than all PLWH/A rate their physical health as good to excellent health. However they are less likely to say their health has improved since they were infected. They rate their current emotional health about the same as all PLWH/A, but are much less likely to say it has improved since they found out their status. Stage of Infection The youth surveyed are a combination of those infected from birth and those recently infected. Nearly thirty percent (29%) have been positive for less than a year; 21% for one to three years, 32% for three to eight years, and 18% have been living with HIV for more than eight years. Almost half (47%) of youths in the sample have been told that their HIV has progressed to AIDS, with 94% reporting having an AIDS diagnosis for less than one year. Medication Adherence Less youths living with HIV/AIDS (66%) report taking antiretrovirals or protease inhibitors than to all other PLWH/A (76%). However, youth living with HIV//AIDS report stronger adherence to their medications (51%) than all PLWH/A (36%). Further, only 26% of youths living with HIV/AIDS have skipped taking their medication at least once a month as compared to 46% of other PLWH/A. The number one reason youths living with HIV/AIDS gave for skipping their medications was forgetting to take them(73%). Twenty-two percent (22%) said that they skipped their medications because they just did not want to take them, 18% said their doctor advised them to stop taking the medications, 12% indicated a difficult schedule and 5% said they could not afford them. Co-Morbidities Thirty-seven percent (37%) of youths living with HIV/AIDS surveyed have had hepatitis A or B, and only 1.3% report hepatitis C in the last two years. Youth are more likely to use drugs than all PLWH/A. Marijuana (79%) was the most frequently continued use substance among youths living with HIV/AIDS in the last 6 months; frequent use of ecstasy (74%) and alcohol (68%) were also reported over this period. Seventeen percent (17%) of youths reported a history of injection drug use.



Top Service Need Figure 1-57 shows the top ten service needs for youths living with HIV/AIDS. Outpatient medical care (100%) and case management services (93%) were the top two service needs for youths living with HIV/AIDS. Four transportation services: bus passes (77%), van transportation (64%), taxi vouchers (62%) and bus tokens (61%) were also included. Other services in demand by youths living with HIV/AIDS are the HIV LA directory (69%), food banks (60%), adherence support from a medical person (59%) and assistance obtaining and paying for HIV/AIDS related medications (59%). Figure 1-57 Top Service Needs for Youths living with HIV/AIDS

Barriers Using a five point scale where “1” indicates a very small problem in seeking care and a “5”represents a big problem, participants were asked to rate 30 items in terms of the level of difficulty they experienced when trying to access care. Table 1-34 shows the top five reasons for not seeking care along with the average scores which indicate the size of the problem. The 2004 Needs Assessment Survey reports that the number one barrier to care for youths living with HIV/AIDS (55%) is “fear of their HIV or AIDS status being found out by others” with an average score of 3.4 indicating a moderate to big problem for this group. Lack of knowledge about a service that is available (53%) or lack of knowledge about the location of a service (53%) were equally moderate barriers to care for youths living with HIV or AIDS (mean scores = 3.0). Other barriers to care reported by youths living with HIV or AIDS in the 2004 Needs Assessment Survey were lack of, or inadequate insurance coverage (53%) and not being able to prove eligibility for the service (45%) with mean scores of 3.1 and 3.3 respectively, representing a moderate to big problem. About a third of the youth said they had a problem with the lack of experience of their provider and their lack of ability to pay for services. For these youth, however, these problems were big barriers to receiving care.



Table 1-34 Youths: Reasons for Not Seeking Care

REASONS % with Problem

Average Score 5=very big 1=very

small Fear of my HIV or AIDS status being found out by others - lack of confidentiality

55.1% 3.4

Not knowing that a service or treatment was available to me

53.3% 3.0

Not knowing a location of the service(s) 53.2% 3.0 My lack of or inadequate, insurance coverage. 52.7% 3.1 Could not prove eligibility for the service. 44.5% 3.3



2. WHERE ARE WE GOING? GOAL AND OBJECTIVES This section reviews the goals established in the 2002 Comprehensive Plan and establishes new service, planning, and infrastructure goals through 2008. This section will not present a comprehensive list of objectives. The Title I application for year 15 presented a comprehensive set of goals related to an implementation plan for Core Services and that is shown in Attachment 16. Rather this plan highlights goals and objectives that can be accomplished by the Commission and OAPP to build a stronger infrastructure and better deliver care services. Overall Goals The overall goals for the Continuum of HIV/AIDS Care remain the same: • Decreasing HIV/AIDS mortality and morbidity. • Improving the quality and availability of comprehensive HIV/AIDS-related services to

needy individuals and families. • Collaborating with other HIV/AIDS service organizations to assess and identify emerging

HIV/AIDS services delivery needs. • Facilitating a coordinated and community-based viable regional voice for HIV-impacted

populations. Progress Since 2002 In the 2002 Comprehensive Plan documented an ambitious agenda for sustaining and improving services for PLWH/A, even as the public health system in Los Angeles County is facing a fiscal crisis that will reduce publicly funded health care services. Overall, by emphasizing partnerships, collaborations and linkages, the continuum of care aims for every client to have equal access to the primary health care core services. Table 2-1 highlights the activities noted in the 2002 Plan and briefly discusses accomplishments. A more detailed discussion of accomplishments follow the table. Table 2-1 2002 Goals and Accomplishments

2002 Comprehensive Care Goals Accomplishments (see below for details) 1. Within the next three years there is a

commitment by the Office of AIDS Programs and Policy (OAPP), the Commission on HIV Health Services (CHHS), and the Prevention Planning Committee (PPC) to move toward an integrated prevention and care services continuum of service, and using a web-enabled data collection and tracking system to support that effort.

After considerable discussion, the merging of the Commission and CPG was decided against. However, there have been a number of initiatives to better integrate prevention and care including: 1) tracking of the newly diagnosed, 2) OAPP contracts include compensation for the costs of linked referral, and 3) the data provided by HIV Epi for behavioral risk groups (BRG’s) is coordinated with the epi data use for care. These are discussed in greater detail below.



2002 Comprehensive Care Goals Accomplishments (see below for details) 2. HIV reporting and the active follow-up of

those testing HIV positive is likely to significantly reduce the number of PLWH who are not in care and allow better coordinated care for individuals in the system.

Tracking newly diagnosed will be achieved through the implementation of the HIV/AIDS Interface Technology System (HITS) which has been in development since 2002. When implemented it will provide newly diagnosed PLWH with direct access and entry into medical outpatient care at the HIV counseling and testing (HCT) entry point.

3. With the implementation of HIV reporting statewide, the Los Angeles County’s HIV Epidemiology Program will be able to more accurately track and describe the epidemic. Once a person tested HIV positive, a system will be implemented to encourage those in care to seek care and stay in care.

HIV reporting was implemented in California in July 2002, and HIV data can be considered reliable and complete no earlier than July 2005.

4. Further development and implementation of standards of care, quality assurance, outcomes and indicators for services will increasingly play an integral role in the monitoring process.

Continuous quality improvement processes will be implemented to ensure ongoing updates to standards, outcomes and indicators and to achieve best practices in HIV service delivery.

5. The Commission will separate from OAPP oversight, and, in so doing, will engage its own professional support staff to carry out its responsibilities.

The move of the Commission from OAPP in the Department of Health Services to the Board of Supervisors was achieved in 2004. The new Executive Director and professional staff of the Commission bring a dedicated level of service to the volunteer Commissioners.

6. The Commission will undertake a more comprehensive ongoing needs assessment process by adopting a continuous data collection model that utilizes ongoing data collection tools, as well as specialized needs assessment studies where data is lacking and further research needed.

The Commission has implemented the HIV/AIDS Care Assessment Project (H-CAP) that provides input from PLWH/A into the planning process.

7. Service planning will be done at the SPA and potentially at the sub-SPA neighborhood level in order to reflect the different needs of communities throughout Los Angeles County. Service Provider Networks (SPN)–see Attachment 6--and the Coordinated Prevention Networks (CPNs) (as described in the Prevention HIV Prevention Cooperative Agreement for 2002) will lead these efforts with support from OAPP and the Commission.

The SPNs have been initiated in each of the 8 SPAs. The SPNs bring together many service providers, both Ryan White CARE Act funded and not, within the SPA to promote collaboration networking and partnership in HIV service delivery.

In addition to the accomplishments in meeting the goals noted in the 2002 Comprehensive Plan, several specific programs and activities were started between 2002 and 2005 which improved the outcomes for the Continuum of HIV/AIDS Care and plan for the delivery of services that conform to practices dictated by a primary health care core.



Service Achievements Changing Demographics of the Epidemic New medical outpatient clinics were opened within the San Gabriel, East, and South Bay/ Long Beach SPAs (3, 7 and 8) providing more geographic coverage for PLWH/A seeking care and treatment. The new sites in the San Gabriel and East SPAs were opened to serve heavily populated Latino regions. Responding to the Service Needs and Gaps of PLWH/A PLWH/A reported a high need for several services in the 2002 Needs Assessment. The following changes in Continuum of HIV/AIDS Care were made to meet the needs, fill service gaps, or respond to barriers identified by PLWH/A. • Oral health was funded in each of the eight SPAs. In addition, a mobile dental van was

implemented to provide more accessible oral health services in Antelope Valley, San Fernando, San Gabriel, Metro, East, and South Bay / Long Beach SPAs (1, 2, 3, 4, 7 and 8). This effort ensures that PLWH/A, especially those of low-income who live in areas without HIV-specific dental services, have easier access to dental care.

• Food banks for PLWA/H were initiated in each of the eight SPAs. • Nutritional counseling was implemented within all HIV medical outpatient settings. • Client advocacy was implemented as a new service category in response to identified

consumer barriers related to navigating the HIV service delivery system. This service provides consumer guides, resource directories, a website and informational supplements to help clients advocate for their health care needs.

Some services were not needed by a large majority of PLWH/A, but were greatly needed by a smaller subpopulation, such as childcare for PLWH/A with children or translation and interpretation services for Latinos. The following changes were made in the Continuum in response to specific needs of subpopulations. • Administrative oversight of HIV childcare services have been centralized within one

agency that subcontracts with licensed childcare providers throughout Los Angeles County. Thus, these services are easily accessible in each of the eight SPAs. In order to assure that the services are used to facilitate care visits, Ryan White CARE Act funded child care has been approved only for persons who need childcare to facilitate accessing care services.

• Peer support and translation/interpretation services have been restructured to include a training/certification program that ensures providers of such services have the same knowledge base and skills set to most effectively and appropriately meet the needs of clients.

• The Commission has directed and OAPP has included a contractual obligation that all Ryan White CARE Act HIV service providers in Los Angeles County have bilingual staff who provide services in the primary language (s) of the majority of their clientele.



To better monitor and administer services, the Continuum is moving to a reimbursement model based on unit costs. While one goal is cost-effective delivery of services, and equally important goal is the continued high quality of care. • In preparation for adopting unit costs, rate studies were completed for substance use

services and residential services. For these services fee-for-service reimbursement rate structure was standardized for all providers.

• OAPP conducted annual program reviews on 100% of their HIV care and treatment contracts.

Planning Accomplishments There are two very significant structural changes that improve the planning process of the Commission in prioritizing and allocating funds for the Continuum of HIV/AIDS Care. 1. The Commission separated from the oversight of the administrative agency, OAPP.

Commission staff is now responsible for support and oversight of all Commission activities, committees and subcommittees, collaborations with OAPP, and other Ryan White CARE Act Titles funded grantees. This new arrangement reduces any conflicts of interest between the Commission and administrative activities. With a larger number of dedicated staff, it is expected that the quality of the Commission’s work will continue to improve and decision-making regarding HIV care planning will become increasingly data based.

2. The membership of the Commission has been restructured to shift from service category representation to geographic representation. Each SPN within the eight SPAs recommend provider and consumer representatives for Commission membership. In addition to addressing the concern of conflict of interest up-front, this methodology promotes a community planning focus to better facilitate meeting the needs of clients within the continuum of care in Los Angeles County.

Input Into the Planning Process The Commission has formalized several aspects of the planning process and increased the amount and quality of data used for planning and the service priority and allocation process and the development of standards of care and outcomes for the Continuum of HIV/AIDS Care. The formalization of the planning process has been discussed earlier in PRIORITY AND ALLOCATIONS section on page 1-8. In addition: • The input of PLWH/A has expanded through the implementation of the HIV/AIDS Care

Assessment Project (H-CAP). This project includes a yearly survey and focus groups among a randomly selected panel of PLWH/A. For more information on H-CAP see the earlier discussion under Methodology, page, xxxix.

• Providers have expanded input though a 2005 provider survey administered which was part of the Assessment of the Administrative Mechanism and by a Commission administered provider survey.

• Providers also have input through the Los Angeles County, Service Provider Networks (SPNs) that operate in each SPA. The SPNs bring together many service providers, both



Ryan White CARE Act funded and not, within geographic regions to promote collaboration, networking and partnership in HIV service delivery. Each SPN recommends provider and consumer representatives for the Commissioners. The Coordinated Prevention Networks continue to organize but have yet to realize their full potential as partners with the SPN at the SPA level.

• Providers utilizing CARE Act funds further provide input through a Cross Title Collaboration Workgroup began in 2004. This group includes grantees of Title’s I, II, III, IV and F. Participants will be working towards coordinated data collection, quality management indicators, consumer and provider needs assessments and other endeavors as identified by the group.

• The Commission has completed a Financial Needs Assessment in 2003 that provides an overview of how CARE Act Title I, II, and MAI funds fit into the overall funding of the Continuum, and it suggests several ways to increase non-CARE Act funding for services in the continuum of care.

• In the prioritization and allocation process the Planning and Prioritization Subcommittee is better able to make data-based decisions utilizing the Service Category Summary Sheets (SCSS) developed in late 2004. These provide a synthesis of epidemiological, H-CAP quantitative and qualitative data, and client tracking system data. The SCSS is more fully described under the PRIORITY AND ALLOCATIONS section on page 1-8.

• The Commission has tracked the recommendations of the Assessment of the Administrative Mechanism completed in 2002, prioritizing recommendations (see Attachment 14). The Commission is currently (January 2005) completing the 2004 Assessment of the Administrative Mechanism that identifies several areas for improvements in the procurement, management, and monitoring of CARE Act funded constricts.

Infrastructure Development Accomplishments A System Wide goal in the 2002 Plan was better coordination of care in order to: 1. Reduce the proportion of LAC residents who test HIV positive, but do not return for their

results. 2. Mitigate the delays between testing HIV positive and entering an HIV system of care. 3. Improve local ability to appropriately screen clients for service eligibility, therein

maximizing of Federal resources of last resort. The first objective was the implementation of technology improvements, and several of the objectives have been meet. • HIV Interface Technology Systems (HITS) is an IT interface that provides newly-

diagnosed HIV-positive clients with direct access and entry into medical outpatient care at the HIV counseling and testing (HCT) entry point. The seamless linkage from prevention to care is supported with the implementation of HITS, funded in part by a SPNS grant. This is achieved through linking prevention and care data systems, increasing interface-enabled follow-up by HCT counselors, and individualizing referrals



to meet client’s particular needs. HITS has been in development since 2002, and full implementation is planned for 2005.

• In 2004, OAPP initiated the Casewatch Centralization Project to begin the process of integrating and collapsing databases into one central data management system and to begin ensuring consistency of reporting across agencies. This project will be critical in planning, developing, and evaluating services to the needs of populations per SPA.

• HIV reporting was implemented in California in July 2002, but HIV data cannot be considered reliable and complete earlier than July 2005. The HIV reporting system improved the Los Angeles County’s HIV Epidemiology Program ability to better track the epidemic. Questions remain about the efficiency and comprehensiveness of the code-based system, and the Commission endorses a name-based HIV reporting system to further enhance knowledge of disease trends and improve regional surveillance cost-effectiveness while maintaining privacy and identity safeguards and protection.

Objectives through 2008 Several initiatives that will improve the outcomes of the Continuum of HIV/AIDS Care are planned for the next three years. The move to unit cost reimbursement and adoption of service standards and quality management indicators will move the service delivery system to a new plateau of accountability and it will look more like a managed care system. In 2004-2005 a number of new service awards will be made through the RFP process, which will result in some new providers. They will need to be brought up to speed in the administration of their services. Based on the Assessment of the Administrative Mechanism, an area of potential delay in services is between award and the starting of service delivery. Existing providers that compete successfully to continue providing services or provide new services will be working under new contracts and new systems. The impact of different reimbursement rules and the necessity to adopt and measure standards are areas that should be allocated sufficient resources to assist providers make the necessary changes. The rate review studies will allow a more complete understanding of the services offered and the cost of providing those services. The funding of HIV/AIDS care services will become more like a managed care system. To avoiding the pitfalls of focusing largely on cost savings, additional emphasis must be placed on adopting and enforcing standards of care and ensuring the delivery of high quality services. Monitoring procedures and timeliness and quality management are two areas that will need improvement if they are to have a positive impact on the Continuum of HIV/AIDS Care Services. Not atypical, but nevertheless disappointing, is the continued mediocre integration and coordination of client tracking software. Experience with HITS and Casewatch/IMACS demonstrates the difficulty in the development and diffusion of client tracking technology. Conceptually providers may wish to have a more efficient tracking system of their clients and participate in sharing information to cut red-tape and check on eligibility, but in reality they are often resistant to sharing client information or making client transfer to another agency



easy. The new cost reimbursement system is likely to increase this resistance for lower acuity clients, while encouraging movement of high acuity (and high cost) patients. While technical problems will be significant, if history is a good predictor, a substantial level of resources will have to be budgeted for the implementation and training of the system as well as ongoing support. For these reasons, the 2005 Comprehensive Plan has a more modest set of objectives than those in the 2002 Plan. In this period of change, if the most important objectives are fulfilled the system will be significantly improved. In the following sections service goals and objectives are divided by those relating directly to service delivery, those related to planning, and those promoting the infrastructure needed to improve the Continuum of HIV/AIDS Care. There are fifteen goals presented in the following section. The goals of the system are represented by 1– 15, and the objectives are listed under each goal. Service Delivery Goals 1. Disseminating the Continuum of Care to PLWH/A and consumers to increase

knowledge about the prioritization of services and their availability. 1.1. To promote community planning at all levels, starting in 2005 the Commission

will implement comprehensive training and leadership development activities for both HIV Commissioners and consumers of care will be initiated. These activities will provide a mechanism to develop and encourage informed and educated consumer input as a means to strengthen the Commission structure and enhance the HIV service delivery system.

1.2. A description of the Continuum of HIV/AIDS care will accompany every RFP as part of the background package.

1.3. Through the SPNs the Commission will promote partnerships, co-location of services and formal systems for linkages and referrals.

2. Assuring Access to Early Intervention Services 2.1. Early intervention program providers will use a common client tracking system to

coordinate early care with continuing care. EIS and Title III Early Intervention Programs will be integrated into the overall Continuum of Care.

2.2. In 2005 through 2008 the Commission will promote awareness and early treatment through social marketing campaigns targeted toward those living with HIV who are unaware of their status. Social marketing campaigns will be targeted within those communities most at risk through the use of small media and social networks.

3. By 2006 Providers will use a Standard Intake Form and procedure 3.1. Case Managers and intake personnel will administer standard intake forms that

include eligibility and acuity. Data is to be directly entered or transferred into the client tracking and case management system.



4. Confronting discrimination and encouraging public support 4.1. The Commission will use public hearings and develop relations with the media to

promote public understanding and awareness of the HIV epidemic in LAC. 4.2. The Commission will sponsor educational events and coordinate World AIDS

Day seminars and activities with a goal of increasing public understanding and encouraging personal risk assessments.

5. Secure services in accordance with the continuum of care and its five priority areas. 5.1. Between 2004 and 2006 all services will be re-bid using an RFP process. 5.2. The Commission and OAPP will conduct workshops and hold information

sessions with providers working with targeted consumers to encourage them to complete RFPs to deliver CARE Act funded services.

5.3. In 2007, once providers are established, encourage them to mentor specialized providers serving target populations and to subcontract specialized services.

6. Standards and outcomes will be established for every service category and written into contract language by OAPP. 6.1. Starting in 2005 continuous quality improvement processes will be implemented

to ensure ongoing updates to standards, outcomes and indicators and to achieve best practices in HIV service delivery. The Commission will establish, as needed subcommittees and workgroups to regularly evaluate the effectiveness of certain aspects of the HIV service delivery system in relation to the current epidemic and the needs of consumers.

6.2. By 2006, system-wide standards indicators for measuring outcomes will be completed for all service categories. Outcomes are used to determine, over time, provider performance based on a set of validated indicators. Currently there are a set of core service program indicators (see Attachment 15). The Commission and OAPP will assure that these indicators are related to the health status and quality of life of PLWH/A. Measurement tools and training will be given to providers to assess their program relevance and to improve the health and quality of life of their clients.

6.3. In 2005 The Commission will confirm that service categories and delivery of services are in accordance with the continuum of care and establish standards of care for each service.

6.4. In 2005 Technical assistance will be made available to providers for establishing system-wide standards and measuring outcomes.

7. By 2007 unit costs and cost reimbursement will be in place for all CARE funded services.

7.1. OAPP will continue to contract rate studies and establish cost reimbursement schedules for services. OAPP will establish a cost reimbursement for all services by the end 2007.

7.2. OAPP will provide the commission utilization and demand data to assist the P&P in prioritizing and allocating funding to services.

8. The Commission will establish benchmarks for the Administrative Mechanism.



8.1. In 2005, based on the 2004 Assessment of the Administrative Mechanism, the Finance Committee of the Commission will develop benchmarks for timeliness, clarity of information, availability, and relationships among partners who procure, manage, and assess CARE Act funded services.

Planning Goals and Objectives 9. Develop a Los Angeles County Continuum of HIV Services that will incorporate care

and prevention services to allow a seamless integration of detection, early intervention, and sustained care. 9.1. From 2005-2007 the Commission, OAPP and the PPC will work toward

consolidating strategic plans and continue integrating prevention and care services into a Continuum of HIV/AIDS Services that include both prevention and care.

10. Epidemiological, consumer, and patient data will be used to plan for the best combination of services and used to allocate funds to services. 10.1. In 2005 the Commission will continue to support enhanced knowledge of disease

trends and improve regional surveillance and cost efficiency through the adoption of a name-based HIV reporting system that maintains privacy and identity safeguards and protection of people diagnosed as HIV positive. It will replace the current statewide code-based HIV reporting system that was implemented three years ago.

10.2. In 2005, 2006, and 2007 the Commission will continue to support the HIV/AIDS Care Assessment Project (H-CAP) to collect consumer data on their service needs, gaps, and barriers.

10.3. The Commission will continue to pursue and actively participate in research endeavors that assist in planning activities and/or hones in on best practices and/or new innovative methodologies that significantly improves the health outcomes of PLWH/A.

11. Targeted population planning and use of targeted funds 11.1. In 2005 The Commission will work with African American, Latino, API, and

other communities of color to determine the most effective use of Minority AIDS Initiative (MAI) funds.

11.2. In 2005 The Commission will create a subcommittee to work with the American Indian Tribal Council to encourage the dissemination of culturally appropriate messages to bring HIV positive American Indians into care.

11.3. In 2005 the Commission will work with young gay men and disseminate culturally appropriate material regarding crystal meth use, early detection, and early treatment for those testing positive.

11.4. The Commission will sponsor a task force to define and meet the needs of the transgender community.

12. Data for Decision Making



12.1. The Commission will develop a set of seminars for new Commissioners on the use of data for planning and decision making.

12.2. The Commission will debrief with Commissioners on their use and understanding of data.

Infrastructure Goals 13. Shared information on clients to reduce red tape, facilitate access to services, determine

eligibility, and the health status of patients. 13.1. Continuing in 2005, OAPP will continue the development and implementation of

a real-time web-enabled integrated client database. This system will be enhanced with the capacity to have shared record management. With proper confidentiality procedures in place, intake will be centralized and all providers will have access to the same client information. This enhancement will expedite clients’ access into care and will reduce and service redundancy, and check for eligibility for CARE Act funded services as well as Medi-Cal, Medicare, and other reimbursement sources.

13.2. Continuing in 2005, OAPP will implement HITS and coordination prevention, HCT and early treatment and care services to encourage persons who test positive to seek services.

13.3. Develop case management modules to measure acuity levels. 13.4. Develop automated referrals and automatic scheduling and e-mails.

14. Identify alternate sources of funding to enhance local HIV service delivery systems. 14.1. Partners within the EMA will continue to identify alternative sources of funding

for care services. 15. Improving Consumer Satisfaction

15.1. Continuing in 2005, the Commission will implement strategies to improve measures and enhance consumer satisfaction through such methods as Patient Bill of Rights and Grievance Procedures.



3. HOW WILL WE MONITOR OUR PROGRESS AND RESULTS The various objectives and tasks can be monitored using a variety of methods. For contracted work, existence of RFPs, disbursement of funds in timely manner, and product (reports, systems, guides) and events (trainings, meetings, seminars, etc) can be tracked. For services, numbers of clients can be tracked as well as outcomes, satisfaction, need and unmet need. Examples are provided below for several of the objectives in the previous section. SERVICE DELIVERY GOALS AND OBJECTIVES 1. Disseminating the Continuum of Care to PLWH/A and consumers to increase knowledge

about the prioritization of services and their availability. Objective/Task Monitoring Indicators Outcome 1.1. To promote community planning

at all levels, starting in 2005 the Commission will implement comprehensive training and leadership development activities for both HIV Commissioners and consumers of care will be initiated. These activities will provide a mechanism to develop and encourage informed and educated consumer input as a means to strengthen the Commission structure and enhance the HIV service delivery system.

Written curriculum Schedule of trainings. Suggestion tracking form. Evaluation of training.

Attendance at trainings. Trainings held. List of suggestions. Results of evaluation.

1.2. A description of the Continuum of HIV/AIDS care will accompany every RFP as part of the background package.

Written description accepted by OAPP department of contracts as attachment to all RFPs.

Aware of Continuum in responses to RFPs.

1.3. Through the SPNs the Commission will promote partnerships, co-location of services and formal systems for linkages and referrals.

SPN meeting minutes SPN requests / directives for co-location of services.

MOUs between SPN service providers. Greater accessibility to services.



2. Assuring Access to Early Intervention Services Objective/Task Monitoring Indicators Outcome 2.1. Early intervention program

providers will use a common client tracking system to coordinate early care with continuing care. EIS and Title III Early Intervention Programs will be integrated into the overall Continuum of Care.

Use of CaseWatch by all EIS and Care Providers with common client IDs.

Shared client database between EIS and other care programs. Ability to track clients through the care system.

2.2. In 2005 through 2008 the Commission will promote awareness and early treatment through social marketing campaigns targeted toward those living with HIV who are unaware of their status. Social marketing campaigns will be targeted within those communities most at risk through the use of small media and social networks.

Social marketing discussion in Commission minutes. Identification and listing of “communities most at risk” Contract for social marketing campaign. Availability of social marketing materials.

Social marketing campaigns in selected high-risk communities. Increase in persons who were out of care engaging or re-engaging medical care in areas where social marketing campaigns were implemented.

3. By 2006 Providers will use a Standard Intake Form and procedure Objective/Task Monitoring Indicators Outcome 3.1. Case Managers and intake

personnel will administer standard intake forms that include eligibility and acuity. Data is to be directly entered or transferred into the client tracking and case management system.

Contract monitoring of implementation of standard intake. Acuity scales available for clients. Knowledge of eligibility by CMs.

Standard intake form used by all providers. Acuity scale algorithm and program. Eligibility program Standized data elements in client database.

4. Confronting discrimination and encouraging public support Objective/Task Monitoring Indicators Outcome 4.1. The Commission will use public

hearings and develop relations with the media to promote public understanding and awareness of the HIV epidemic in LAC.

Commission media distribution list. Schedule of public hearings.

Increaed number of articles discrimination and HIV/AIDS in LAC media.



4.2. The Commission will sponsor educational events and coordinate World AIDS Day seminars and activities with a goal of increasing public understanding and encouraging personal risk assessments.

World AIDS day committee. Agreements / contract with moderator for seminars at World AIDS Day events. List of events for World AID Day.

Letters / editorial supporting HIV/AIDS Care. Increased testing in January 2006.

5. Secure services in accordance with the continuum of care and its five priority areas. Objective/Task Monitoring Indicators Outcome 5.1 Between 2004 and 2006 all services

will be rebid using an RFP process. Timeliness of RFP relesases.

Signed contracts for services awared through bidding.

5.2 The Commission and OAPP will conduct workshops and hold information sessions with providers working with targeted consumers to encourage them to complete RFPs to deliver CARE Act funded services.

Schedule of workshops. Promotion of workshops. Workshops held.

RFPs submitted by some attendees of workshops and information sessions.

5.3. In 2007, once providers are established, encourage them to mentor specialized providers serving target populations and to subcontract specialized services.

List of specialized providers selected for mentoring. Mentoring reports.

Mentored providers submit RFPs.

6. Standards and outcomes will be established for every service category and written into

contract language by OAPP. Objective/Task Monitoring Indicators Outcome 6.1 Starting in 2005 continuous quality

improvement processes will be implemented to ensure ongoing updates to standards, outcomes, and indicators and to achieve best practices in HIV service delivery. The Commission will establish, as needed subcommittees and workgroups to regularly evaluate the effectiveness of certain aspects of the HIV service delivery system in relation to the current epidemic and the needs of consumers.

Standard Committee adopts CQI model. Evaluations of effectiveness of standards.

Services meet standards of care established by Commission and OAPP.



6.2. By 2006, system-wide standards indicators for measuring outcomes will be completed for all service categories. Outcomes are used to determine, over time, provider performance based on a set of validated indicators. Currently there are a set of core service program indicators (see Attachment 15). The Commission and OAPP will assure that these indicators are related to the health status and quality of life of PLWH/A. Measurement tools and training will be given to providers to assess their program relevance and to improve the health and quality of life of their clients.

Written standards for each Care service. Commission and OAPP adopt outcomes for each service. Study commissioned to assess relationship between outcome and quality of service. Trainings scheduled for providers on CQI.

Services provided with the same quality and effectiveness by all providers. All providers adopt standards and outcomes. All providers use standards and measure outcomes in uniform manner.

6.3. In 2005 The Commission will confirm that service categories and delivery of services are in accordance with the continuum of care and establish standards of care for each service.

OAPP will include in annual audit an assessment that CARE Act funded services are those in the Continuum of Care and they meet the standards for the services offered.

All Providers receive an assessment of services and how they meet their standards. If improvement is needed it is included in POCA.

6.4. In 2005 Technical assistance will be made available to providers for establishing system-wide standards and measuring outcomes.

Schedule of TA on standards and outcomes. Evaluation of TA completed.

Provider attend TA. Providers understand standards and outcomes.

7. By 2007 unit costs and cost reimbursement will be in place for all CARE funded services. Objective/Task Monitoring Indicators Outcome 7.1. OAPP will continue to contract

rate studies and establish cost reimbursement schedules for services. OAPP will establish a cost reimbursement for all services by the end 2007.

Rate studies commissioned. Cost reimbursement plan implemented.

Rates for each service. Contracts for services reflect expected units provided and cost per unit.



7.2. OAPP will provide the commission utilization and demand data to assist the P&P in prioritizing and allocating funding to services.

Commission receives utilization data and demand data on a timely basis.

Part of the priorityies and allocation process takes into account the utilization and demand data.

8. The Commission will establish benchmarks for the Administrative Mechanism. Objective/Task Monitoring Indicators Outcome 8.1. In 2005, based on the 2004

Assessment of the Administrative Mechanism, the Finance Committee of the Commission will develop benchmarks for timeliness, clarity of information, availability, and relationships among partners who procure, manage, and assess CARE Amct funded services.

Standards committee recommends benchmarks. Commission adopts benchmarks for timeliness, clarity, availability, and relationships for the procurement, administration, and assessment of services. Benchmarks assessed in each Assessment of the Administrative Mechansim.

OAPP and providers aware of benchmarks. Benchmarks trended in Assessment of Administrative Mechanism.

PLANNING GOALS AND OBJECTIVES 9. Develop a Los Angeles County Continuum of HIV Services that will incorporate care and

prevention services to allow a seamless integration of detection, early intervention, and sustained care.

Objective/Task Monitoring Indicators Outcome 9.1. From 2005-2007 the Commission,

OAPP and the PPC will work toward consolidating strategic plans and continue integrating prevention and care services into a Continuum of HIV/AIDS Services that include both prevention and care.

Meeting and minutes of Commission and CPB collaboration on a consolidated strategic plan. Recommendation of a single Continuum of HIV/AIDS services.

Consolidated strategic plan that includes prevention and care.



10. Epidemiological, consumer, and patient data will be used to plan for the best combination

of services and used to allocate funds to services. Objective/Task Monitoring Indicators Outcome 10.1. In 2005 the Commission will

continue to support enhanced knowledge of disease trends and improve regional surveillance and cost efficiency through the adoption of a name-based HIV reporting system that maintains privacy and identity safeguards and protection of people diagnosed as HIV positive. It will replace the current statewide code-based HIV reporting system that was implemented three years ago.

Commission sponsored forums advocating names base reporting.

Adoption of names based HIV reporting.

10.2. In 2005, 2006, and 2007 the Commission will continue to support the HIV/AIDS Care Assessment Project (H-CAP) to collect consumer data on their service needs, gaps, and barriers.

Contract to continue H-CAP.

Delivery of H-CAP reports as requested.

10.3. The Commission will continue to pursue and actively participate in research endeavors that assist in planning activities and/or hones in on best practices and/or new innovative methodologies that significantly improves the health outcomes of PLWH/A.

Identification of research efforts that help planning activities. Commission updates on new innovative service and protocols that improve the health outcomes of PLWH/A.

Commission adopts new practices when they are confirmed to improve the health outcomes of PLWH/A. Commission directives changing or adding to standards.

11. Targeted population planning and use of targeted funds Objective/Task Monitoring Indicators Outcome 11.1. In 2005 The Commission will

work with African American, Latino, API, and other communities of color to determine the most effective use of Minority AIDS Initiative (MAI) funds.

Special H-CAP reports contracted for service needs, barriers, and gaps of communities of color. Data distributed about service needs, barriers, and gaps identified for communities of color.

Commission recommends allocation of MAI funds based on research and other community input.



11.2. In 2005 The Commission will create a subcommittee to work with the American Indian Tribal Council to encourage the dissemination of culturally appropriate messages to bring HIV positive American Indians into care.

Creation of Commission subcommittee to work with American Indian Tribal Council.

Increased number of American Indians infected with HIV/AIDS seeking care.

11.3. In 2005 the Commission will work with young gay men and disseminate culturally appropriate material regarding crystal meth use, early detection, and early treatment for those testing positive.

Commission sponsored dissemination of information targeted to young gay men.

Lower rates of drug use and early treatment in by young gay men in H-CAP.

11.4. The Commission will sponsor a task force to define and meet the needs of the transgender community.

Commission sponsored task for on HIV/AIDS care needs in transgender community.

Targeted care services targeted to transgender community.

12. Data for Decision Making Objective/Task Monitoring Indicators Outcome 12.1. The Commission will develop a

set of seminars for new Commissioners on the use of data for planning and decision making.

See 1.1 above See 1.1 above.

12.2. The Commission will debrief with Commissioners on their use and understanding of data.

Meeting of new commissioners with support staff on use of data.

Improved understanding and use of data by Commissioners.



INFRASTRUCTURE GOALS AND OBJECTIVES 13. Shared information on clients to reduce red tape, facilitate access to services, determine

eligibility, and the health status of patients. Objective/Task Monitoring Indicators Outcome 13.1. Continuing in 2005, OAPP will

continue the development and implementation of a real-time web-enabled integrated client database. This system will be enhanced with the capacity to have shared record management. With proper confidentiality procedures in place, intake will be centralized and all providers will have access to the same client information. This enhancement will expedite clients’ access into care and will reduce and service redundancy, and check for eligibility for CARE Act funded services as well as Medi-Cal, Medicare, and other reimbursement sources.

Benchmarks tests of web- based client tracking system. Beta system released and evaluated. Release of web based client tracking system. Algorithm for eligibility established.

Adoption of web-based or compatible stand-alone client tracking system by all providers.

13.2. Continuing in 2005, OAPP will implement HITS and coordination prevention, HCT and early treatment and care services to encourage persons who test positive to seek services.

Commission audit of HITS and impact of it on HCT early treatment and care services.

Improved tracking of persons testing positive and not seeking care. Decreased numbers of PLWH/A who have unmet need.

13.3. Develop case management modules to measure acuity levels.

OAPP and Commission adopt standard acuity measures for intake instrument.

Acuity documented and tracked on all PLWH/A in care.

13.4. Develop automated referrals and automatic scheduling and e-mails.

OAPP contracts module in client tracking system that allows referrals and sends electronic reminders to those with e-mail.

Improved referral and reminders for appointments.



14. Identify alternate sources of funding to enhance local HIV service delivery systems. Objective/Task Monitoring Indicators Outcome 14.1. Partners within the EMA will

continue to identify alternative sources of funding for care services.

Commission dissemination of information on alternative funding sources to providers and partners in the administrative mechanism. Monitoring the non-Ryan White CARE funds that provide reimbursement for services.

Added revenue per capita of non Ryan CARE Act funds in the Continuum of Care.

15. Improving Consumer Satisfaction Objective/Task Monitoring Indicators Outcome 15.1. Continuing in 2005, the

Commission will implement strategies to improve measures and enhance consumer satisfaction through such methods as Patient Bill of Rights and Grievance Procedures.

Commission will sponsor educational forums of Patient Bill of Rights and Grievance procedures. Measure of PLWH/A awareness of patient bill of rights.

Knowledge of Patient Bill of Rights and grievance procedures by PLWH/A.



4. ATTACHMENTS Attachment 1 2004 Needs Assessment Survey Attachment 2 Focus Group Outline for Selected Populations Attachment 3 Focus Group Outline for Out-of-Care Attachment 4 Secondary Information Sources Attachment 5 SPA Descriptions Attachment 6 Service Provider Network Plan Attachment 7 Service Category Summary Sheet - Example Attachment 8 Formula for Estimating PLWH/A Attachment 9 Poverty Levels Attachment 10 2004 Survey Cross Tabs Attachment 11 2004 Survey Cross Tabs – Selected Populations Attachment 12 HIV/AIDS Interface Technology System (HITS) Project Description Attachment 13 Community Advisory Boards and Consumer Involvement Attachment 14 2002 Recommendations from the Assessment of the Administrative

Mechanism Attachment 15 Core Service Program Indicators Attachment 16 Goals and Objectives for Implementing Core HIV/AIDS Services

Documents

LA HIV/AIDS Comprehensive Care Plan: 2004