A New National AIDS Watchdog Group

Several leading AIDS treatment activists from across the country convened in August to form a new coalition to follow new developments in AIDS research, watch over the pharmaceutical industry, and help educate and mentor new treatment advocates.

Frustrated by the representation and accountability of present-day treatment, activists came together at the Center of AIDS Hope and Remembrance Project in Houston to form the coalition, tentatively called AIDS Treatment Activist Coalition (ATAC).

ACT UP developed most of the treatment activism in the early years of the epidemic. Some individuals developed self-taught skills and expert knowledge of AIDS research and treatment and represented the community in the boardrooms of federal agency and pharmaceutical firms for discussions of protocols and drug development. They fought for ethical trial design, the inclusion of women and minorities in studies and for lower drug prices. Activists formed community advisory boards at research institutions and then a national Community Constituency Group to monitor the AIDS Clinical Trials Group.

Today, the FDA often includes AIDS treatment activists on its advisory panels for the approval of new therapies. Also, treatment activists from organizations like Project Inform spearhead annual think tanks to further research into the complexity of immune restoration. But as the epidemic has grown, the loose network of AIDS treatment activists has turned into a small group of dedicated individuals determined to continue to make improvements in AIDS research. The remaining group is often viewed as elitist and in some ways they tend to unintentionally intimidate other AIDS advocates with their level of knowledge and expertise. Attrition through burnout, apathy and the deaths of scores of treatment activists has not helped the overall national representation.

According to ATAC, the time has come for an accountable national group of activists to make appropriate gains in the current state of AIDS treatment. The coalition wants to focus on biomedical research, including diagnostics, vaccines, and microbicides, as well as drugs, and will include AIDS-related illnesses such as hepatitis C and tuberculosis. One way in which to be as inclusive as possible is to allow anyone with HIV and their advocates into membership in ATAC.

The ATAC Web site is http://www.atac-usa.org.

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