1. Supporting Sustainable Adherence to HIV Prevention, Care & Treatment ICAP Technical Workshop October 19-22, 2009Kigali, Rwanda GIPAGreater Involvement of People Living with HIV/AIDS MIPAMeaningful Involvement of People Living with HIV/AIDS Robert Remien, PhD; Professor of Clinical Psychology Monday, October 19, 2009

2. What is GIPA/MIPA? It is a principle that aims to realize the rights and responsibilities of people living with HIV, including their right to self-determination and participation in decision-making processes that affect their lives. In these efforts, GIPA/MIPA also aims to enhance the quality and effectiveness of the AIDS response, as countries scale up their national AIDS responses to achieve the goal of universal access to prevention, treatment, care and support services.

3. Why is GIPA/MIPA important? PLWHA have directly experienced factors that make people vulnerable to HIV infection, and HIV-related illnesses and the strategies for managing them; thus they have expertise. When communities are proactively involved in ensuring their own well-being, success is more likely – for themselves and their peers.

4. Roles for PLWHA Advocacy Campaigns & public speaking Policy-making process Leadership and support (networking) Treatment roll-out and preparedness Program development & implementation Personal involvement in their own health

5. Advocacy Inclusion in the research agenda Law reform Access to services: treatment, care, and support Resource mobilization

6. Campaign & Public Speaking Increase visibility Support for others who are isolated Peer education Reduce stigma

7. Policy Making People living with HIV participating in the development and monitoring of HIV-related policies at all levels

8. Leadership & Support People living with HIV can provide leadership: HIV support groups or networks seeking external resources encouraging participation of new members, or simply participating by sharing their experiences with others

9. Treatment Rollout & Preparedness People living with HIV support treatment roll-out through educating others on treatment options, side effects and adherence, and can be involved as home-based and community health-care workers “Peer Education” “Peer Support”

10. Program Development & Implementation People living with HIV can provide knowledge and skills towards universal access through participation in the governance of global organizations such as UNAIDS and the Global Fund and in the choice, design, implementation, monitoring and evaluation of prevention, treatment, care and support programs, and research. “Advisory Boards” and other Meaningful Roles to play

11. Personal They can take an active role in decisions about their own treatment, self education about therapies, opportunistic infections and adherence, and positive prevention. This can be taken and disseminated in their families and in their communities. As “role models” As “advocates:” information, motivation, skills, support