The role of communities in scaling up HIV/AIDS programmes

1. Supporting community action on AIDS in developing countries The role of communities in scaling up HIV/AIDS programmes Susie McLean Senior Policy Advisor International HIV/AIDS Alliance

2. What roles do communities play in the delivery of ARV treatment? • Where is health experienced? • Where is HIV/AIDS experienced? • Where do people take treatment? • 20 minutes in the clinic vs rest of life in community

3. Why communities? • “HIV/AIDS is seen in the clinics, but it lives in our communities” • Treatment also ‘lives’ in communities • Fear, stigma & lack of understanding stop people from accessing testing & treatment • Increased knowledge & understanding of HIV & ART across a community can increase support for people on treatment, reduce stigma and support protective behaviours

4. Different roles • Advocacy and policy • Planning • Programme implementation – treatment, education, community mobilisation • Evaluation, critique, quality

5. Tools for community engagement in treatment • The Treatment Journey- a simple tool for individuals and planners to describe need and the different places where needs are met • Formal, informal systems, pharmacies, friends, where people come to know about AIDS

6. ARV treatment in Burkina Faso 1 • Centre Oasis – a community initiative started by a group of friends concerned about AIDS, AAS • Started with HIV prevention – education, condoms & clean razors for barbers • Progressed to small scale treatment based on drug donations • Alliance support enabled set-up of Projet Orange – nurses, doctors, pharmacist etc. • Scaled up to delivery of ARV treatment for 300, target was for 500 by end of 2005 • Good clinical results

7. ARV treatment in Burkina Faso 2 • Holistic, comprehensive support for treatment, adherence, prevention and income generation • People with HIV engaged in all aspects • Community education through internet café & 14 roadside coffee shops – snacks & info. • Micro-finance & micro-health insurance – poor households & those caring for orphans

8. ARV treatment in Burkina Faso 3 • Sharing lessons & supporting other civil society organisations re treatment. • Challenges of scale, treating children; prevention; intensive capacity building & investment; funding; working with govt, drug procurement • Proof of concept – AAS important advocacy role with national govt

9. “At the time when many of us were dying, we were told that the community cannot do it. We wanted to show that the community can do it.”

10. ARV treatment in Ukraine 1 • Global Fund-funded project – Alliance is Principal Recipient of funds for national ART programme • Public health system programme -providing ARV treatment, training, M&E • Works with national and regional AIDS Centres to provide treatment for 4000 people with HIV (currently ~ 2800)

11. ARV treatment in Ukraine 2 • HIV mainly among drug users & sex workers • High levels of human rights abuses towards drug users • Lack of substitution therapy for injecting drug users – buprenorphine/methadone • Community myths – ‘experimentation by western drug companies’, ‘money will run out’ • People need food, vitamins, counselling to add to prevention & care programmes

12. ARV treatment in Ukraine 3 • Interaction of social, medical, political and economic factors • People need stability, adequate nutrition, removal of social isolation to support ARV treatment & prevention • Education of wider community and improved services are essential to improve the situation

13. ARV treatment in Ukraine 4 • Local NGO role in treatment programmes – NGO social workers in ART clinic teams, comm based treatment info programmes, comm based adherence support, advocacy, prevention • National PLHA organisation - advocacy • Community preparedness remains a challenge • Slow uptake, defaults from treatment and deaths due to late start of ART

14. “It is good to see those younger ones start recovering and getting better. It is very important to have each other.”

15. ARV treatment in Zambia 1 ARV treatment Community Education & Referral (ACER) Project • Supports Government ARV programme • Supports treatment of nearly 300 people • Involves traditional healers, NGOs, pos. people’s network, church groups, local health workers • People with HIV employed as treatment supporters • Builds on existing community structures

16. ARV Treatment in Zambia 2 • Experienced Zambian manager • Treatment support workers – 2 in each of 2 ARV clinics: referral point for people from communities, information providers, psychosocial support • Treatment mobilisers – coordinate activities and advocacy in community settings • NGO partners – range of activities – education, home care

17. ARV treatment in Zambia 3 Community activities: • Treatment literacy, adherence counselling, food support & micro-credit • Treatment support groups • Community education through traditional meetings, churches, markets, schools, street theatre, drop-in centres • Education & mobilisation of traditional healers & birth attendants • Youth drop-in centres – education on treatment & prevention • Two-way referral system,to and from health system & other sources of help for people on treatment

18. Youth group performing for audience of traditional healers - Ndola, Zambia

19. Lessons learned: • Preparing communities takes time, effort & respect for local context & protocol • Must build on & mobilise existing resources and relationships • Must be actively part of formal health system • Vital to combat stigma & improve uptake of HIV testing & PMTCT as gateways to ARV treatment • Vital to good adherence? • “Gatekeepers” must be committed and supportive - Government & local leaders • Programme reach beyond HIV – addressing other health needs

20. Further information • Toolkits, policy papers, fact sheets, resource manuals available on website: www.aidsalliance.org • smclean@aidsalliance.org