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Community-Driven Responses to HIV Infection in Oakland

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Page 1: Community-Driven Responses to HIV Infection in Oakland

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Advancing the health and well-being of people most affected by AIDS

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Advancing the health and well-being of people most affected by AIDS

Community-Driven Responses to HIV Infection in Oakland CDC HIV Prevention Conference, Atlanta, GA August, 15, 2011

Partner Organizations: •Pangaea Global AIDS Foundation •CAL-PEP •La Clinica de la Raza •University of California, Berkeley – School of Public Health •Alameda County Office of AIDS Administration

This project is supported by the Office of AIDS Research (OAR), National Institutes of Health

Advancing the health and well-being of people most affected by AIDS

Page 2: Community-Driven Responses to HIV Infection in Oakland

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Context The History In 1998 Alameda County was the first local health jurisdiction to declare a HIV/AIDS State of Emergency for African Americans. The Issue Late diagnosis of HIV – an AIDS diagnosis within one year of an HIV positive result – mean missed opportunities for treatment AND prevention. The Crisis In California, 61% of HIV positive individuals were diagnosed late compared to 75% in Alameda County The Trend Late diagnosed individuals in Alameda County are most likely to be African American or Latino/a.

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Context (cont.)

The Programs In 2009, statewide cuts to HIV testing programming decreased available testing (from 11 publically funded sites to 8). The “Shadow City” Effect Oakland is the most diverse city in Alameda County, and one of the most diverse in the state, with over 170 languages spoken. Therefore, the nature and face of the epidemic is VERY different than our Sister City across the Bay (San Francisco), requiring different responses.

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Data Source: CAPE Unit, Alameda County Public Health Department, April 2011

Late Testers in Alameda County 1990 – 2010

0.010.020.030.040.050.060.070.080.0

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Late Testers AIDS Dx at 1st HIV Test

Definition: A individual who receives an initial concurrent HIV+ test result and AIDS diagnosis or who progresses to an AIDS diagnosis within one year of an initial HIV+ diagnosis.

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Data Source: CAPE Unit, Alameda County Public Health Department, April 2011

Alameda County Late Testers by Race/Ethnicity

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Late Testers AIDS Dx at 1st HIV Test

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AIDS Dx at 1st HIV test All Other AIDS Cases

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So, we had an idea…. Why CBPR to Understand Late Diagnosis? • Community-Based Participatory Research allows for in-depth

actionable exploration of a specific issue. • Late diagnosis as a social justice issue – this should not be happening.

• Collaborative approaches among two Oakland communities

traditionally “at odds” and most affected – African American and Latinos – likely to have greater impact.

• Sharing power of decision-making between researchers and communities – gets at the heart of the matter and ensures data are used for improving programs/developing interventions

• Opportunity for bi-directional learning – across culture, across agencies -- enhancing our strengthens, supporting our capacity needs.

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Research Objectives • To understand individual and structural barriers to earlier detection of

HIV and assess “missed opportunities” for testing/entry into care through:

1. In-depth interviews among patients diagnosed late 2. key informant interviews with popular opinion leaders

• To make existing (but un-accessible) county and state HIV testing and

AIDS case data available to communities for improved programming.

• To engage community and stakeholders in reviewing findings from Aims 1 & 2, and identify and/or develop community-driven responses to increase early HIV detection and diagnosis.

• To pilot test the most promising responses, leading to recommended models of implementation in Oakland.

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Conceptual Framework

Re-defining “Broad” community engagement: using existing support groups, existing advocacy groups, providers and “Popular Opinion Leaders.”

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Our First Steps • Developing Guiding Principles – CBPR Covenant

• Meaningful engagement of community: Use what’s pre-existing!

• Joint community forums to introduce the concept of “Late Diagnosis”

• Using existing “Community Advisory Boards”

• Align our research activities with ongoing community events.

• Leveraging client groups at partner agencies as advisors.

• Engaging the public health department

• Understanding how to request data from our State Office of AIDS and local health department

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Community Forums • CBO partners planned two joint forums to coincide with National

HIV Testing Day –African American and Latino groups.

• All partners present and supportive of each other’s events.

• Goal: To understand why late diagnosis is happening here, in your neighborhood, with your “folks”?

• INTERACTIVE format: small group work, Q&A., etc.

• Services attached to the forums: mobile rapid HIV testing was available via CAL-PEP; La Clinica presenters were clinical providers

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Advancing the health and well-being of people most affected by AIDS • Little understanding of the concept of “Late Diagnosis” and late

testing

• Lack of knowledge that is occurring in their community. • From African Americans: Stigma, anger, guilt, shame and

betrayal within the community (young women’s story).

• From Latinos/as: Taboo subjects- sexuality and patriarchal relations of power between men and women; need to change perception of availability and access to services

• Overarching Issues: Internal and external neighborhood and economic dynamics (Fruitvale and West Oakland)

Community Forums Lessons Learned

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Using what we learned • Advocacy: Amending the State of Emergency to

Include late testing • Research planning:

• More use of group discussions, reduced and focused in-depth interviews (IDIs)

• Capitalize on existing community structures • Exploration of stigma, gender dynamics and

structural racism as key drivers of late diagnosis

• Implement 1-3 CBPR pilot projects: Encourage community to conduct research!

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CBPR Recommendations • Jointly develop research ideas: communities

and researchers together • Sustainability of community based org. for

evidence-based interventions and funding • Develop guidelines – a covenant to hold each

partner accountable • Be flexible: research strategies/approaches ever

evolving to reflect new information • Work hard to respect and trust each other

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Partners • La Clinica de la Raza

• Christina Grijalva, Alfredo Lopez, Berta Hernandez

• California Prevention and Education Project (CAL-PEP) • Gloria Lockett, Carla Dillard Smith, Aminatu Yusuf

• University of California, Berkeley

• Meredith Minkler, Sandi McCoy

• Office of AIDS Administration, Alameda County • Kabir Hypolite

• Pangaea Global AIDS Foundation

• Ifeoma Udoh, Megan Dunbar, Ben Plumley, Sheryl Walton

This project is supported by the Office of AIDS Research (OAR) National Institutes of Health