CATIE AIDS 2006 Satellite: Developing health literacy in resource-limited settings

1. CATIE AIDS 2006 Satellite:Developing health literacy in resource-limited settings Wednesday, August 16, 2006 Darien Taylor, Director, Treatment Information, Canadian AIDS Treatment Information Exchange (CATIE)

2. 1980s/early 1990s: Few treatments but a highly literate population • CATIE started as a local organization by the Toronto-based AIDS treatment activist organization, AIDS ACTION NOW! • HIV a disease of gay, white men • few AIDS treatments; many deaths • self-education • CATIE now a national, community-based, not-for-profit AIDS service organization

3. CATIE’s Mandate ….serve PHAs, and the people and organizations that support them, by providing accessible, accurate, unbiased and timely HIV treatment information… to ensure access to information needed to make informed health care choices….

4. 1990s: New communities affected; treatments available but access unequal • Aboriginal peoples • Canadians born in HIV-endemic countries • injection drug users • women • youth, esp. street-involved youth • rural communities • inmates

5. The Role of AIDS Service Organizations in Building HIV Treatment Literacy • number of clients increasing • needs of clients increasingly diverse & complex • funding does not keep pace with needs • ASOs believe they have a role to build treatment literacy, but lack capacity to do so

6. CATIE’s response to developing treatment literacy in vulnerable communities with limited resources • HIV Treatment Information Integration Capacity-building project partnered with ASOs in 7 Canadian communities : • Positive Living North, Prince George, BC • AIDS Program South Saskatchewan, Regina, Saskatchewan • HIV Edmonton, Edmonton, Alberta • Bruce House, Ottawa, Ontario • Pauktuutit Inuit Women’s Health Association, Ottawa, Ontario and Iqualuit, Nunavut • MIELS Quebec, Quebec City, Quebec • AIDS Coalition of Nova Scotia, Halifax, NS

7. Other CATIE responses to supporting treatment literacy in communities with limited resources • Publications • easy-to-read fact sheets, fact sheets in languages in addition to English/French • Pre*fix for IDU • widely disseminated at no cost

8. Other CATIE responses to supporting treatment literacy in communities with limited resources • Websites • All of our publications can be downloaded from our website www.catie.ca • www.treatHIVglobally.ca (African, Asian and South Asian languages) • www.livepositive.ca/www.viepositive.ca for youth

9. Treatment Information Workshops • Workshops on 20 HIV treatment topics provided free of charge in communities across Canada • In 2005-06, CATIE provided 79 workshops to 3,619 participants • 94% felt more empowered as a result of workshop to make decisions about managing their health

10. Toll-free Treatment Inquiry Phone Line • in 2005/06, CATIE responded to 2,350 requests for treatment information through 1-800 phone line • women make up ~ 32% of our requests for treatment information • Canadians living with HIV represent >40% of our callers

11. Next Steps: Body-Mapping Project in Canada & Southern Africa • CATIE will partner with a South African ASO to provide treatment information to HIV+ women in Tanzania, Zambia and throughout Canada • This will happen in the context of “body mapping”, a psychosocial support tool in which women create autobiographical “maps” of their bodies • Body-mapping can increase HIV treatment literacy

12. Next Steps: New National Challenges • the “technological divide” • older Canadians living with HIV/AIDS • limited income • limitations in cognitive and physical abilities