Purvi Pinakin Patel

Candidate for JD/MPH

Preceptor: Anja Rudiger, Ph.D

National Economic & Social Rights Initiative (NESRI)

New York, NY

Implementing a Human Right to Implementing a Human Right to

Health:Health: a Qualitative Case Study a Qualitative Case Study Lewis & Clark County, MontanaLewis & Clark County, Montana

Lewis & Clark County, Lewis & Clark County, MontanaMontana

County Seat: Helena Year Organized: 1864Square Miles: 3,461

Lincoln

HELENA

Augusta

Canyon Creek

County Health ProfileCounty Health ProfilePopulation: 60,925

21% lack health insurance

12% of adults unable to visit a doctor due to cost

29% live below 200% of the federal poverty level (FPL)

7% are on Medicaid

54% of Community Health Center clients were uninsured in 2004

December 2008 Resolution: December 2008 Resolution: Health Care as a Human RightHealth Care as a Human Right

Needs Assessment PartnersNeeds Assessment Partners

National Economic & Social Rights Initiative (NESRI)

New York, NY

Anja Rudiger, Ph.D Dir, Human Right to Health Program

Expertise:◦ Training & technical

assistance

◦ Research, analysis and documentation

Montana Human Rights Network (MHRN)

Helena, MT

Kim Abbott, Project Liason

Expertise◦ monitoring and reporting on

the activities of the radical right-wing groups in Montana

◦ organizing local human rights groups & policy initiatives

Using a Human Rights FrameworkUsing a Human Rights Framework1. Universality: Must be afforded to everyone, without

exception.

2. Indivisibility: Are indivisible and interdependent

3. Participation: People have a right to participate in how decisions are made regarding protection of their rights.

4. Accountability: Governments must create mechanisms of accountability for the enforcement of rights.

5. Transparency: Governments must be open about all decision making processes related to rights.

6. Non-Discrimination: Human rights must be guaranteed without discrimination of any kind.

MethodologyMethodologyInitial Targets:

◦ 10 focus groups, 1-2 hours ea.

◦ 5-10 participants/group

◦ Sampling framework (by geography & demographics)

◦ Discussion protocol (past experiences, human rights framework)

ParticipantsParticipantsGroup Date # ParticipantsHelena - Task Force 8/17/09 3Helena - YWCA 8/17/09 7Canyon Creek 8/19/09 2Lincoln 1 8/20/09 2Augusta 8/25/09 13Helena - FoodShare 10/13/09 10Lincoln 2 10/14/09 3Helena 4 11/5/09 7TOTAL 47

 AGES # percentage18-24 years 2 5%25-34 years 5 12%35-44 years 0 0%45-54 years 11 26%55-64 years 13 31%65+ years 11 26%

Participant DemographicsParticipant DemographicsEducation Level Income

 Education Level number percentageno HS Diploma 2 5%

HS/GED 14 34%Associate's 4 10%Bachelor's 13 32%

Graduate 8 20%

 Income number percentage

< $20,000 16 41%

$20,000 - $49,999 11 28%

$50,000 - $100,000 9 23%

$100K+ 3 8%

 Health Insurance Status number percentage

Uninsured 11 24%Employer-based 17 37%Gov-sponsored 14 30%

Individual 6 13%

Other (e.g. VA, parents) 5 11%

Health as a Human RightAccess: Cost & Financing:

Affordability - based on ability to pay

Equity - resources allocated and used according to needs and health risks

Comprehensiveness - all screening, treatments, therapies and drugs needed to preserve & restore health

Availability of Services:

Adequate health care infrastructure (e.g. facilities, trained professionals)

Adequate services (e.g. primary care, mental health)

Transportation

Quality of Care:

medically appropriate

timely, safe, and patient-centered

Acceptability and Dignity in Treatment:

culturally appropriate (gender, age, culture, language, etc.)

protect confidentiality

Key Findings: Access: Cost & Financing

Affordability of insurance coverage Employer-sponsored insurance plans can have such high deductibles or co-pays

virtually impossible for patients use services. Patients forgo routine, preventative care

health care services only for emergencies. Even premiums for cheaper private insurance seem too expensive Access to needed services for high-risk patients with pre-existing conditions may not be affordable

because of the increase in cost of insurance.

Expenses for Service In some cases, residents will remain uninsured and pay out-of-pocket for care, only seeking care for what

they can afford. This may mean paying for a diagnosis but treating with over-the-counter medications or self-care at home

Lack of alternative financing options for low-income patients

(i.e. sliding scale fees or payment plans).

Participants knew others who: Would not take medications because they could not afford to pay for them Felt it would be financially better for their spouses if they died rather than seek treatment that could lead to

financial burden.

Legal concerns

having to go to court to get bills paid Being concerned about financial consequences about not answering bill collectors

“We’re Medicare, and it’s wonderful. It’s wonderful. I mean I wish everybody in the country had it.” -- 2nd Lincoln Focus Group

Key Findings: Availability of Health Care

Shortage:

Family doctors/primary care

Specialists (coverage/out-of-network)

Ambulance/emergency services

Geographic Isolation/Transportation

Concerns about Navigability of the Health System

“Some of the doctors, that are listed in the yellow pages, they’re full…the people that people have been referring me to, they’re full so they won’t take any more. And I stopped looking, but I’ve had that happen a few times.”

-- YWCA Focus Group

Key Findings: Quality of Care

Positive feedback Excellent WIC

Lincoln clinic great

Foodshare program

Voluntary ambulance (Lincoln & Augusta)

Negative feedback

Hospital

◦ Long waiting times in the ER, expensive care, poor quality

◦ Bad testing for serious symptoms, poor diagnosis

◦ Respondents feel providers care more about payment than patients

Communication between providers

“He gave me a couple of pills, and said I could take one or two of them, and said, ‘Alright, I’ll have the nurse get you a walker so that you can get home alright.’ I have steps going up to my house, and my bathroom was upstairs, I live alone, and I told him this. And he said, you know, ‘I’d really like to admit you but I can’t.’”

Taskforce Focus Group

Key Findings: Acceptability & Dignity

“I went in Wednesday, pulled a tooth that was abscessed. I told them I needed antibiotics, and they said no. I went back Friday as my face was even more swollen than it is now. He kind of laughed and said, “Well, I guess we should have started those antibiotics anyhow.” Then reminded me that I was getting the care for free.… broke one tooth, pulling one out, and I was reminded twice that I was getting the service for free.”

YWCA Focus Group

Respondents, particularly low income participants, expressed concern about being treated with respect by health providers.

Participants related stories they knew, people would◦ not take medications because they could not afford to pay for them

◦ feel it would be financially better for their spouses if they died rather than seek treatment that could lead to financial burden.

Poor or inadequate information about mental health disorders can be taken for deviant behavior and criminalized. This can lead to further stigmatization, and even criminalization, of a patient.

Is Health/Healthcare a Human Right?

The majority of participants considered health care as a human right (60%)

◦ More rural residence often felt that health care came with a degree of independent responsibility

◦ Medicaid and Medicare participants generally agreed that health care was a human right.

◦ People who considered themselves middle class but whose incomes put them in the lower-income brackets tended to display resentment of those receiving “free” health care, and did not consider health to be a human right.

Several others emphasized ethical obligations to meet health care needs, but did not feel comfortable using the term “human right.”

To have a healthy community, Government OR community members needed to help everybody to be healthy

“I think it should be a right but it comes with responsibilities.” (Lincoln 2) “I think it should be a right but it comes with responsibilities.” (Lincoln 2)

“I consider it to be out ethical responsibility to supply it to everybody, but I don’t see it as a human right.”

(Helena 4)

“I consider it to be out ethical responsibility to supply it to everybody, but I don’t see it as a human right.”

(Helena 4)

Recommendations Expand health services, particularly

primary care

Improve care-coordination

Improve navigability of health services

increase transportation options (ex: buses for the elderly)

Expand hours or reserve some business hours for off-peak times

Expand financing options

(uniform pricing, flexible financing, etc.)

Limitations

Sampling framework

◦ Actually recruiting groups as per framework

◦ Uniformity in group sizes

◦ Lack of participants between 35-44 years-old

Concern with moderation by newly trained task force members outside of NESRI

Distinguishing prejudice from personal frustrations and resentment over healthcare

“The group we did last week…it’s not a reflection of the entire community, but it’s a reflection of some parts of the community…”

-- Researcher, about the Lincoln group

Anja RudigerNESRI

Victoria GrantNESRI

Kim AbbottMontana Human Rights Network

Martha DavisNortheastern University School of Law

Marcia BoumilTufts University School of Medicine, Dept. of Public Health &

Professional Degrees

Pat Hennessey, Billie Miller, and Bob PutschLewis & Clark County Task Force on Universal Access to Healthcare

AcknowledgementsAcknowledgements