History of the HIV Endemic Task Force (HETF) and its Activities: Retracing the Footsteps

1. History of the HIV Endemic Task Force (HETF) and its Activities: Retracing the Footsteps Presenters: Esther Tharao and Dr. Robert Remis, on behalf of HETF

2. HIV/AIDS in African and Caribbean Communities in Ontario: History of HETF (1) • Stigma and denial as we know and understand it has and continues to influence the response to HIV/AIDS among communities across the globe and African and Caribbean populations in Ontario and in Canada are not any different. • Most are diagnosed when they are already sick or when their children get sick and are diagnosed as being HIV positive or having AIDS before the parents. • There is limited access to services include diagnostic services hence limited access to early treatment for the infected. This is a big problem considering that access to treatment leads to a longer, healthier and better quality of life.

3. HIV/AIDS in African and Caribbean Communities in Ontario: History of HETF(2) • In the mid 90’s, increase in numbers of those infected with HIV amongst African and Caribbean populations was first noted by service providers – there was increase in numbers being diagnosed with HIV and those seeking HIV/AIDS care and support services (anecdotal information). • In 1998, for the first time something was reported about HIV within African and Caribbean populations as a result of maternal transmission and to those dying from AIDS.

4. HIV/AIDS in African and Caribbean Communities in Ontario : History of HETF (3) • Reports from Dr. Susan King, Ontario HIV Pediatric Network indicated that between 1994-96, 70% of maternal-infant transmission of HIV infection had occurred amongst persons from Endemic regions (Africa and Caribbean) • By 1998 there were 116 mother infant pairs in the perinatal database who were born in Sub-Sahara Africa (75%) and the Caribbean (25%)

5. HIV/AIDS in African and Caribbean Communities in Ontario : History of HETF (4) • In 1996 approx. 10% of those diagnosed with AIDS were from the African and Caribbean communities compared to 3% of AIDS cases diagnosed previously • 32 % of women who had died from AIDS in 1996 were African and Caribbean women • The populations also had a higher AIDS related mortality rate compared to the general Ont. Pop. As a whole (14.0 compared to 4.2/100,000)

6. HIV/AIDS in African and Caribbean Communities in Ontario : History of HETF (5) • Though this statistics indicated a growing problem, there was no research available documenting the extent of and the impact of the infection on the African and Caribbean communities • Anecdotal information by service providers working with these groups was never taken seriously • This lack of epidemiological data made it difficult to obtain funding to mount effective strategies to fight the epidemic

7. HIV/AIDS in African and Caribbean Communities in Ontario : History of HETF (6) • In 1997 at the Canadian Association of HIV/AIDS Research Conference held in Ottawa, those of us who attended this conference were all amazed that not one single researcher was doing any research within these populations to quantify or deal with the problem in a systematic manner • In the same year, organizations providing services to African and Caribbean groups started exploring individually effective ways of dealing with the situation

8. HIV/AIDS in African and Caribbean Communities in Ontario : History of HETF (7) • In 1997 we had the first African forum organized by ACHES and APAA with a Keynote speaker from the then Laboratory Centre for Disease Control (LCDC), Health Canada who we had met at the CAHR conference earlier in the year • We invited him to the forum to talk to us about the extent of the HIV/AIDS within African communities living in Canada.

9. HIV/AIDS in African and Caribbean Communities in Ontario : History of HETF (8) • During the forum he informed us that the federal government did not have the information we were looking for and that without involving the Ontario Ministry of Health we were not going to obtain the information even in the future. • He advised us to approach the AIDS Bureau to see how we could deal with the issue in a proactive way • By then the Black Coalition for AIDS Prevention had already started discussions with the AIDS Bureau as a result of the CAHR conference which they had also been part of.

10. HIV/AIDS in African and Caribbean Communities in Ontario : History of HETF (9) • In 1999, the two groups were brought together to form what was then called the HIV Endemic Working Group. The organizations involved at the time included: ACHES, Black CAP, APAA, Health Canada and the AIDS Bureau, Ontario Ministry of Health and Long Term Care • A decision was made at this juncture that before deciding where to go and what to go next, we needed to have a clear picture of the status of the HIV/AIDS epidemic within the two populations.

11. HIV/AIDS in African and Caribbean Communities in Ontario : History of HETF (10) • Dr. Robert Remis was contracted by the AIDS Bureau to provide us with a rough idea or estimate of the status of the epidemic within the African and Caribbean communities in Ontario, resulting in the report he will be presenting today.

12. HIV/AIDS in African and Caribbean Communities in Ontario : History of HETF (11) • When the report was ready many of us were not surprised by what it predicated • Based on the needs of the working, other organizations working with African and Caribbean communities were invited to join the working group after completion of the report :- Rexdale CHC, CMSC, Youth clinical Services, WHIWH, Toronto Public Health • The name of the working group was changed to what its is currently known as the HIV Endemic Task Force (HETF).

13. Impacts of the report: • The media including radio, television, and newspapers highlighted different aspects of the report spinning it in different directions. • Its positive impacts were overshadowed by the negative implications that resulted when the mainstream media presented the report. • The organizations that were part of the working group, who knew and understood the context within which the report was produced failed to inform the communities why it was important to have such a report.

14. Negative Impacts (1) • Portrayal of African and Caribbean Communities in negative ways – as the reason for the spread of HIV/AIDS in Canada. • Perceived increase in racism and discrimination as the larger Canadian population became aware of the high rates of infection within these communities – leading to even more difficulties accessing services, employment, housing, etc.

15. Negative Impacts (2) • Most people were sure that immigration would use this report to tighten immigration policy to ensure that those who are perceived to be infected are kept out of Canada • Increased silence and denial, creating even more challenges for those involved in prevention, support and care efforts in African and Caribbean Communities.

16. Positive Impacts (1) • The report become an advocacy tool: • To raise awareness and increase participation of community members and service providers - profile HIV/AIDS as an issue that should be of concern for Caribbean and African communities in Ontario and that something needed to be done about it. • Strategizing by different stakeholders: communities, service providers and the municipal and provincial levels of government also begun to look at the different strategies of dealing with the issue

17. General Awareness raising: • Through media e.g. television, community radio, newsletters and newspapers • Through activities organized by community organizations – many community based groups invited Robert Remis to present the report at board and membership meetings, conferences and fora. • Activities were targeted to both the service providers working with these communities and the community itself

18. Strategizing by different stakeholders : • The report led to the mobilizations of different stakeholders in an effort to mount effective strategies to deal with the situation. Active groups included: - service providers (1) - different levels of government (2) - affected communities (3)

19. Service Providers (1): • More individual organizations started applying for grants to provide HIV/AIDS services to African and Caribbean populations who were coming through their doors. • With the statistics available funders could no longer justify withholding funds from those providing services but: - are the services being provided? - and if so are they appropriate, adequate, effective and who is evaluating?

20. Strategies of government (2) • City of Toronto funded • Individual organizations to carryout prevention work • two HIV/AIDS fora to bring service providers from settlement services, AIDS service organizations, shelters, social service organizations, public health, etc. together in an effort to create an effective service delivery model for African and Caribbean populations.

21. Provincial Government: • The AIDS Bureau facilitated the continuation of the former HIV Endemic Working Group that has been renamed the HIV Endemic Task Force – provision of financial support for the meetings. • By creating a mechanism that ensures the Ontario Advisory Committee on HIV/AIDS is updated on the work of the Task Force

22. Task Force Membership • The previous HIV Endemic Working Group, comprising of Black CAP, ACHES, APAA, AIDS Bureau, Health Canada Ontario Region, and later Women’s Health in Women’s Hands was renamed the HIV Endemic Task Force • It was expanded to include Youth Clinical Services Inc., Rexdale Community Health Centre, and the City of Toronto.

23. Goal of the Task Force: • In an effort to promote timely, coordinated and adequate response, the task force is in the process of developing a strategic plan

24. Goal of the strategic plan: • To reduce the incidence of HIV among people in Ontario from HIV endemic countries (e.g. communities of African and Caribbean descendants) and to improve the quality of life for those infected and affected by HIV/AIDS

25. Objectives of the strategic plan (1) • To coordinate the work of agencies, institutions, and policy makers working with and for Endemic communities (EC) regarding prevention, education, health promotion, care and support • To facilitate community development in response to HIV/AIDS challenges; and

26. Objectives of the strategic plan (2): • To identify research needs, priorities and opportunities

27. 1. HIV infection in HIV-endemic communities is urgent 2. Provincial and federal policies and programs must be integrated and coordinated 3. Mechanisms needed to link the policies and programs 4. Must address the broader determinants of health 5. Acknowledges that HIV prevention, care, treatment and support occur within a continuum of program and service delivery 6. Promotes the delivery of HIV-related programs and services within an integrated comprehensive health care approach HIV Endemic Task Force Strategic PlanKey Principles 1

28. 7. Promotes a community-based response that recognizes the diversity of HIV-endemic communities (HECs) 8. Programs and services must involve people from the HECs, be culturally competent and be accessible to all members of HECs, including groups that are often marginalized 9. HETF has role in helping to coordinate the response among government departments, HIV/AIDS Service Organizations, health care and social service agencies 10. Includes targets and indicators for success and evaluation and revision of the Strategy according to lessons learned and to the evolution of the HIV epidemic. HIV Endemic Task Force Strategic PlanKey Principles 2

29. Strategic Directions of the plan (1): • Advocate for a commitment to and resources to implement a province-wide strategy to reduce HIV infection among people from EC • Hold organization accountable for providing services to people from EC • Provide an accountability and coordinating mechanism for work with Ecs in Ontario through HETF

30. Strategic Directions of the plan (2): • Identify and promote culturally appropriate and accessible HIV prevention, care, treatment and support programs and services delivered within a framework of comprehensive health and social services • Support capacity building initiatives within EC and existing EC organizations to respond to HIV/AIDS

31. Strategic Directions of the plan (3): • Educate/train health care providers in cultural competency/cultural sensitivity • To establish research priorities that promote broad based relevant research • To reduce potential negative impacts of research on EC

32. Strategic Directions of the plan (4): • Promote access and adherence to drug therapies and treatments by reducing barriers related to culture and/or language • Break the silence and create a supportive environment for prevention work

33. Consultations: • Draft plan has been circulated to different stakeholders across Ontario for input • Targeted focus groups will be held with specific groups across Ontario in the next few weeks • Input from the various sources will be incorporated into the plan

34. Other activities Undertaken by the Task Force (1) • Organizing a community forum to strategize on how to deal with HIV/AIDS stigma and denial to increase effectiveness of any strategies mounted to deal with HIV/AIDS EC • Community proposed strategies to: • eliminate stigma and denial • create a comfortable and safe environment for those infected and affected by HIV/AIDS • Increase access to services and information.

35. Activities being Undertaken by the Task Force (2) • Advocating and Facilitating links with other provincial and National stakeholders such as the Canadian Strategy on HIV/AIDS.

36. HIV Endemic Task Force Strategic PlanRecommendations re: federal role 1. Develop a dedicated strategy for persons in Canada from HIV-endemic countries addressing prevention, care, treatment and support 2. Ensure the necessary collaboration and coordination with other federal government departments and with provincial, territorial and regional governments and agencies 3. Produce epidemiologic and demographic data to support evidence-based policy and program development with respect to persons in Canada from HIV-endemic countries 4. Bolster the federal contribution to research incorporating the multilayered aspects of this issue, including epidemiology, community-based research, behavioural and psychological research 5. Ensure consultation with groups with broad-based representation from health and social service agencies and AIDS Service Organization working with persons in Canada from HIV-endemic countries