1 Resisting against the system Research with African, Caribbean and Black communities in Canada Winston Husbands AIDS Committee of Toronto African and Caribbean Council on HIV/AIDS in Ontario OHTN Summer Learning Institute July 16, 2009

2 Outline 1. Epidemiology and disadvantage 2. ACCHO and Ontario’s African and Caribbean strategy 3. Current/previous research by ACCHO or members 4. Building research infrastructure and capacity 5. Methodological issues to inform research 6. Implications and conclusion

3 HIV incidence and prevalence in Ontario 1,2 Men who have sex with men (MSM) 1 Modeled estimates from Remis et al., 2008; 2 approximately 25% of MSM infected

4 HIV incidence and prevalence in Ontario 1,2 People from Africa and the Caribbean 1 Modeled estimates from Remis et al., 2008; 2 approximately 0.7% of Ontario’s Black population infected

5 1 Modeled estimates from Remis et al., 2008 Trends in HIV prevalence in Ontario 1 Distribution of HIV infected persons by risk group

6 HIV among African and Caribbean communities in Canada 1,2,3  16% of people living with HIV are Caribbean or African. (2006)  The number of Caribbean and African people infected with HIV increased by over 80% in  Ontario (2006): c. 28% of new HIV diagnoses were among African and Caribbean people. Canada (2002)  7-10% of people infected with HIV are African or Caribbean  6-12% of new infections are among people from Africa and the Caribbean

7 Who gets infected in Ontario People from Africa and the Caribbean 1,2,4  African and Caribbean men - 60% of African/Caribbean people infected (2006) - 11% of HIV diagnoses among all men (2007) - 8% of all AIDS cases among MSM ( )  African and Caribbean women - 57% of HIV diagnoses among all women (2006) 1 Remis et al., (2008) ; 2 HIV Update. ( 3 Centre for Infectious Disease Prevention and Control (2005); 4 Remis and Liu (2007)

8 HIV in Africa and the African diaspora  Sub-Saharan Africa and the Caribbean are the only two HIV- endemic regions  Sub-Saharan Africa (UNAIDS, 2008) - two-thirds of global number of people living with HIV (2007) - 72% of all AIDS deaths (2007)  USA (Wilson et al., 2008) - African Americans account for half of all new HIV diagnoses in estimated that 2% of African Americans infected with HIV  UK (UK Collaborative Group, 2005) - 4.4% of African population and 0.3% of Caribbean population in UK HIV+ (vs 0.07% of white population) (vs 0.07% of white population)

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10 Income of Black Canadians in Toronto 1,2 1 People with a bachelor’s degree 2 Source: Statistics Canada (2006).

11 Cumulative disadvantage Wealth among US families 1 1 Shapiro, 2004

12 Cumulative disadvantage Determinants of health  Income level and inequality influence health status and outcomes  Income related to other dimensions of health and social inequality - social status - education - work and employment - social exclusion, etc.  Dimensions of inequality are interconnected and effect is cumulative  Structural barriers to achieving health and wellbeing – affect several/all dimensions of health and wellbeing - racism - homophobia (heterosexism)

13 ACCHO and the strategy on HIV for African and Caribbean communities in Ontario

14 Building ACCHO  Strategizing among Toronto stakeholders (mid-1990s) - agencies serving Black communities - policy makers from the AIDS Bureau (Ministry of Health)  HIV Endemic Working (1998) African Community Health Services (ACHS) Africans in Partnership Against AIDS (APAA) Black Coalition for AIDS Prevention (Black CAP) Federal (Health Canada) and provincial (AIDS Bureau) policy makers  HIV Endemic Task Force (1999) - expanded HEWG membership (TPH, WHIWH, YCS, CF, Rexdale CHC) - development of the African and Caribbean Strategy (2003)  ACCHO (2004) - new terms of reference and expanded membership - lead implementation of Ontario’s African and Caribbean strategy

15 African and Caribbean strategy Development  Ontario situation report (1999) - HIV incidence and prevalence among African and Caribbean communities - commissioned by the AIDS Bureau and prepared by R. Remis (OHEMU)  Interviews with service providers, researchers and organizations  Survey with range of stakeholders  Community consultation – “For us, By us, About us” (2001)  Focus groups with African and Caribbean PHAs and service providers in Toronto and Ottawa  Strategy completed in Dec ACCHO and the Strategy launched in April 2005

16 African and Caribbean Strategy Main guiding principles  HIV/AIDS is an urgent issue requiring attention and resources  Communities must be substantively involved in the response  Response to HIV/AIDS must be framed in broad context - anti-racism and anti-oppression - social determinants of health - social justice - trans-national perspective - community and individual responsibility  Response must accommodate intersecting identities and community diversity - gender, sexual orientation, etc

17 Goal and objectives of the Strategy Goal  reduce the spread of HIV among African and Caribbean people in Ontario  improve the quality of life for people infected and affected by HIV/AIDS Objectives  Coordinate the response to HIV/AIDS among ACB communities  Promote community development and capacity building  Promote/facilitate research that addresses community needs ethically and respectfully

18 Enhancing research infrastructure and capacity

19 Research development initiatives  1 st African and Caribbean research Summit (2006)  Priorities to support local HIV prevention efforts (2007)  Research Think Tank on research with ACB communities (2009)

20 Research ACCHO and member organizations  African and Caribbean stigma study (2006) How African and Caribbean people in Toronto experience and respond to HIV stigma, denial, fear and discrimination.  Visibly Hidden (2008) Assessing HIV prevention issues for young Black MSM in Toronto  EAST (2008) HIV and health-related behaviours, beliefs, attitudes and knowledge among East African communities in Toronto  MaBwana (available Fall 2009) Vulnerability to HIV among African, Caribbean and Black gay and bisexual men in Toronto

21 Issues to inform research with ACB communities

22 Methodological issues to inform research Race and Racialization  Race - gross biological characteristics that ideally have little social value  Racialization (social construction of race) - process or result of attributing social meaning to biological characteristics - individuals assigned to specific social categories  Racism - relationship of power, domination, control  Institutional practices - racism embedded in institutional practices - intentional acts vs unintended consequences - racism reproduced in institutional practices

23 Methodological issues to inform research Community engagement  Developing a critical consciousness  Social structure  Community  Family  Individuals/agency  Mobilizing communities for action  Engaging governments and institutions

24 Methodological issues to inform research Social justice  Ensuring that health/wellbeing are sufficiently available to all  Concerned with social relations and respect for people - attitudes, beliefs and practices that affect inclusion and self-determination - attitudes, beliefs and practices that affect inclusion and self-determination  Strategies and actions to achieve sufficient wellbeing  Strategies and actions recognize that: - impediments to health and wellbeing are interconnected and cumulative - structural impediments sustain and reproduce inequality

25 Methodological issues to inform research Intersectionality  Framework for understanding complex, intersecting identities  Opposes the idea that race, gender etc. are independent dimensions of being  Differentiation of social life (identity and location)  Effects/outcomes of differentiation are complex, variable, irreducible and mutually constructing  Differentiation may privilege some or subordinate others  Nature of intersection varies in time and space

26 Methodological issues to inform research Trans-national communities and identities  Immigrants from Africa and the Caribbean  TNC – migrants from A living in B with ongoing and practical commitments to A  TNI created through experiences within a new society and continued investment in the society of origin  Supports and obligations in both countries – primary commitments are trans-national rather than local

27 Methodological issues to inform research Community involvement  ACB communities should be meaningfully represented and involved as partners or collaborators  Outputs must be meaningfully available to ACB communities  Research should support action  Researchers must support access to research data by partners and collaborators

28 Implications and conclusion

29 Implications  Research for whom? Whose interests/agenda?  Understanding the contexts and meanings that inform people’s lived experiences  Research as a contribution to engaging ACB communities about HIV, health and wellbeing  Research helps to build social capital and promote informed community action

30 Conclusion  Addressing questions of methodology (as opposed to a singular focus on methods)  Understanding and negotiating the institutional context within which we do research  Understanding ACB people and communities as informed and knowledgeable agents rather than just as uninformed subjects

31 Acknowledgements  AIDS Bureau, Ministry of Health and Long-term Care support for ACCHO and the HIV/AIDS strategy for African and Caribbean communities in Ontario  Volunteers who generously donate their time  ACCHO staff Diana Wiwa, Administrative Coordinator Eric Peters, Capacity Building Coordinator Tanya Thompson, Volunteer Coordinator Helena Shimeles, Research Coordinator  ACCHO members  Dionne Falconer (DA Falconer & Associates) - facilitation  OHTN Community Scholar Award to Winston Husbands ( )

32 References Campbell, C. (2003). ‘Letting Them Die’: Why HIV/AIDS Programs Fail. Oxford: International African Institute and James Currey. Centre for Infectious Disease Prevention and Control (2005). HIV in Canada Among Persons from Countries where HIV is Endemic. HIV/AIDS Epi Update. Public Health Agency of Canada. HIV Endemic Task Force (2003). Strategy to address issues related to HIV/AIDS faced by people in Ontario from countries where HIV is endemic. Toronto: ACCHO. HIV Update. Tables and Figures. Ontario HIV Epidemiological Monitoring Unit ( Powers, M. and Faden, R. (2006). Social Justice: The Moral Foundations of Public Health and Health Policy. NY: Oxford University Press. Remis, R., Swantee, C., Schiedel, L., and Liu, J. (2008). Report on HIV/AIDS in Ontario OHEMU. Shapiro, T. (2005). The Hidden Cost of Being African American: How Wealth Perpetuates Inequality. NY: Oxford University Press.

33 References (cont’d) Statistics Canada (2006). Census of population. Catalogue no XCB UNAIDS (2008). Report on the Global AIDS Epidemic. Geneva. UK Collaborative Group for HIV and STI Surveillance (2005). HIV and Sexually Transmitted Infections in the United Kingdom: Part 4 – Black and Minority Ethnic Populations. Wilson, P., Wright, K. and Isbell, M. (2008). Left Behind. Black America: A Neglected Priority in the Global AIDS Epidemic. Los Angeles: Black AIDS Institute.

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