AIDS Treatment Activists from Across the Land Gather to Share Expertise and Ideas
“A conversation long overdue”
TAG was the proud co-sponsor of the first national gathering of AIDS treatment activists, the National AIDS Treatment Advocates’ Forum (NATAF), in Los Angeles in mid-October. The event was the brainchild of TAG board member Moisés Agosto, who is the Director of Research and Treatment Advocacy at the National Minority AIDS Council (NMAC) in Washington, D.C. In addition to TAG, NATAF was sponsored by NMAC, AIDS Project Los Angeles (APLA), Gay Men’s Health Crisis (GMHC), and the National Association of People with AIDS (NAPWA). Supporters of the conference included the AIDS Action Council, AIDS Action Baltimore, the American Foundation for AIDS Research, the Design Industry Foundation to Fight AIDS (DIFFA)-Houston, the National Education Association (NEA) and Project Inform. The conference was underwritten entirely without the support of pharmaceutical sponsors.
The conference, unlike smaller gatherings of AIDS treatment activists in the past, brought together nearly 200 treatment advocates from around the U.S., and a few from across the Atlantic. The participants were drawn from all of the communities affected by the epidemic and reflected a special effort by organizers to reach out beyond the usual coterie of seasoned treatment activists. Because the conference was scheduled back-to-back with NMAC’s and NAPWA’s National Skills Building Conference, the meeting was able to draw in many new people who were planning to attend only the Skills Building Conference and may not have had much exposure to treatment advocacy in the past.
The conference began with a three-hour workshop on clinical trial methodology with Jim Neaton and Carlton Hogan of the Statistical Center of the Community Program for Clinical Research on AIDS (CPCRA) and the University of Minnesota. The workshop was designed to teach the participants about the basics of clinical trial design and why randomization, controls and other methodological tools are important ways to help ensure the reliability of clinical study results. The remainder of the 11 sessions at the conference were split into two 2-hour sections each, on the following topics:
- Antivirals;
- Clinical Research;
- Basic Research;
- Malignancies;
- Opportunistic Infections;
- Women’s Health;
- Research and Policy;
- Treatment Education;
- Immune-Based Therapies;
- Chinese Medicine; and
- Working with the Pharmaceutical Industry.
The first two hours were spent up-dating the participants on the latest developments in each area with the second 2 hours set aside for strategizing and discussion.
TAG was well represented at the conference with 14 members attending the meeting–most of them presenting or moderating sessions. TAG members Mark Harrington, Theo Smart and David Barr presented during the Antivirals session with Moisés Agosto moderating. TAG’s Gregg Gonsalves joined moderator David Barr to present during the session on Clinical Research, and presented during and moderated the Basic Science session as well.
TAG staffer Michael Marco presented in the section on Malignancies and then was joined by Mark Harrington and TAG board member Lynda Dee for the session on Opportunistic Infections. Mark Harrington, Moisés Agosto and TAG members Derek Link and Derek Hodel presented during the session on Research and Policy. Moisés Agosto and David Barr and TAG’s Pablo Colón presented during the session on Treatment Education. TAG’s Craig Sterritt and Rick Loftus presented during the session on Immune-Based Therapies. Finally, TAG’s Stephen Gendin moderated a session on working with pharmaceutical companies. TAG board member Barbara Hughes was part of the organizing team of the conference and made sure things ran smoothly during the 4 days of the meeting.
In the next several weeks, conference organizers will issue a report from the meeting detailing all the varied discussions and presentations. It was clear that the participants thought the meeting a rousing success, and everyone looked forward to getting together again next October. The first NATAF was a remarkable example of how an often fractious activist community can work together, teach each other and learn from each other. The unprecedented diversity of the gathering with many HIV+ women and people of color in attendance, allowed members of all communities affected by the epidemic to sit down together for the first time in such a large forum to discuss AIDS research and treatment issues. Everyone recognized it was a conversation long overdue.