Community-Driven Responses to HIV Infection in Oakland
1. Click to edit Master
title style 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, GAstyles
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August, 15, 2011
Second level
Third level
Partner Organizations: Fourth level
•Pangaea Global AIDS Foundation
•CAL-PEP Fifth level
•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
2. Context to edit Master
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The History
title style Advancing the health and well-being
In 1998 Alameda County was the firstof peoplehealth jurisdiction to
local most affected by AIDS
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.
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The Crisis
In California, 61% of HIV positive level
Second individuals were diagnosed late
Third level
compared to 75% in Alameda County
Fourth level
The Trend
Fifth level County are most likely to be
Late diagnosed individuals in Alameda
African American or Latino/a.
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Context (cont.)
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The Programs
Advancing the health and well-being
of people most affected by AIDS
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 text styles
Click to edit Master epidemic is VERY different
Second level
than our Sister City across the Bay (San Francisco), requiring
different responses. Third level
Fourth level
Fifth level
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Late Testers in Alameda County
1990 – 2010
title style Advancing the health and well-being
Definition: A individual who receives an initial concurrent HIV+ test result and AIDSby AIDS
of people most affected diagnosis
or who progresses to an AIDS diagnosis within one year of an initial HIV+ diagnosis.
Late Testers AIDS Dx at 1st HIV Test
80.0
70.0
60.0
50.0 Click to edit Master text styles
Percent
40.0
Second level
30.0
20.0 Third level
10.0 Fourth level
0.0
Fifth level
1990
1991
1992
1993
1994
1995
1996
1997
1998
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
Data Source: CAPE Unit, Alameda
County Public Health Department, April
2011
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Alameda County Late Testers
by Race/Ethnicity
title style Advancing the health and well-being
of people most affected by AIDS
% Late Testers All other Cases AIDS Dx at 1st HIV test All Other AIDS Cases
100 100
80 80
Percent
Percent
60 60
40
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40
20 Second level
20
0 Third level
0
White African Am Latino Asian/Pacific Amer Ind/AK Multi-race White African Am Latino Asian/Pacific Amer Ind/AK Multi-race
Fourth level Isl Native Isl Native
Late Testers Fifth levelAIDS Dx at 1st HIV Test
Data Source: CAPE Unit, Alameda
County Public Health Department, April
2011
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So, we had an idea….
Why CBPR to Understand Late Diagnosis?
title style Advancing the health and well-being
of people most affected by AIDS
• 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.
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• Second level
Sharing power of decision-making between researchers and
communities – gets at the heart of level
Third the matter and ensures data are
used for improving programs/developing interventions
Fourth level
• Opportunity for bi-directionalFifth level
learning – across culture, across
agencies -- enhancing our strengthens, supporting our capacity needs.
7. ClickObjectives Master
Research to edit
title style
• To understand individual and structural
Advancing the health and well-being
barriers most affected by AIDS
of people to earlier detection
HIV and assess “missed opportunities” for testing/entry into care
of
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.
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• Second level
To engage community and stakeholders in reviewing findings from
Third level
Aims 1 & 2, and identify and/or develop community-driven responses to
increase early HIV detection and diagnosis.
Fourth level
• Fifth level leading to recommended
To pilot test the most promising responses,
models of implementation in Oakland.
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Conceptual Framework
title style Advancing the health and well-being
of people most affected by AIDS
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Second level
Third level
Fourth level
Fifth level
Re-defining “Broad” community engagement: using existing support
groups, existing advocacy groups, providers and “Popular Opinion
Leaders.”
9. OurClick to edit
First Steps Master
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• Developing Guiding Principles – CBPR Covenant and well-being
Advancing the health
of people most affected by AIDS
• 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 ourClick to activities with ongoing community events.
research edit Master text styles
Second level
• Leveraging client groups at partner agencies as advisors.
Third level
• Engaging the public Fourth level
health department
Fifth level
• Understanding how to request data from our State Office of
AIDS and local health department
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Community Forums
title style Advancing the health and well-being
• CBO partners planned two joint forums to coincide with National
of people most affected by AIDS
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”?
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• INTERACTIVE format: small grouplevel Q&A., etc.
Second work,
Third level
• Services attached to the forums: mobile rapid HIV testing was
Fourth level
available via CAL-PEP; La Fifth level
Clinica presenters were clinical
providers
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Community Forums
title style
Lessons Learned 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).
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Second level
• From Latinos/as: Taboo subjects- sexuality and patriarchal
Third level women; need to change
relations of power between men and
Fourth level
perception of availability and access to services
Fifth level
• Overarching Issues: Internal and external neighborhood and
economic dynamics (Fruitvale and West Oakland)
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Using what we learned
title the State of Emergency to
• Advocacy: Amending
style Advancing the health and well-being
of people most affected by AIDS
Include late testing
• Research planning:
• More use of group discussions, reduced and
focused in-depth interviews (IDIs)
• Capitalize on edit Master text styles
Click to existing community structures
• Exploration of Second level dynamics and
stigma, gender
Third level
structural racism as key drivers of late
diagnosis Fourth level
Fifth level
• Implement 1-3 CBPR pilot projects:
Encourage community to conduct research!
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CBPR Recommendations
title style Advancing the health and well-being
of people most affected by AIDS
• 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 Master text styles
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• Second level
Be flexible: research strategies/approaches ever
evolving to reflectThird information
new level
• Fourth level
Work hard to respect and trust each other
Fifth level
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Partners to edit Master
• La Clinica de la Raza
title style
• Christina Grijalva, Alfredo Lopez, Berta Hernandez well-being
Advancing the health and
of people most affected by AIDS
• California Prevention and Education Project (CAL-PEP)
• Gloria Lockett, Carla Dillard Smith, Aminatu Yusuf
• University of California, Berkeley
• Meredith Minkler, Sandi McCoy
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• Office of AIDS Administration, Alameda County
Second level
• Kabir Hypolite
Third level
Fourth level
• Pangaea Global AIDS Foundation
• Ifeoma Udoh, Megan Dunbar,levelPlumley, Sheryl Walton
Fifth Ben
This project is supported by the Office of AIDS Research (OAR) National Institutes of Health