A "New Paradigm" for Treatment Activism
In keeping with the grim news from the treatment front, the Eighth International Conference on AIDS, held in Amsterdam in June 1992, was "somber" in atmosphere. One striking expression of official pessimism came from the editor of JAMA , Dr. George Lundberg, who predicted that AIDS would remain a common disease a century from now. Lawrence Altman, covering the conference for the New York Times , noted some of the effects of discouragement: "Even demonstrators who have disrupted previous conferences and attacked health officials and scientists for their slow, step-by-step approach conceded that there was an urgent need to return to basic science," he wrote.
These were the sentiments that motivated the lengthy report "AIDS Research at the NIH: A Critical Review," prepared by Gregg Gonsalves and Mark Harrington and presented by the Treatment Action Group at the 1992 conference. The two authors had sat down and read every NIH grant that had funded AIDS research through each of
the NIH institutes, and they had tried to envision a logical, cohesive approach to organizing that research effort. "Since 1987," wrote Gonsalves and Harrington, "the activist critique of AIDS research has worked its way back: from drug approval at the regulatory level of the US Food + Drug Administration …, to expanded access for drugs still under study (Parallel Track), to the design and conduct of the controlled clinical trials themselves by the National Institutes of Health …, pharmaceutical companies, and community-based clinical trial centers." Now activists had come to realize that in order for their efforts to succeed, they would have to focus their attention on an even earlier phase of the research process: "If the reforms won by activists are not to become mere stratagems for craven pharmaceutical companies swiftly to develop and market a whole series of additional nucleoside analogues (d4T, FLT, 3TC, etc.), activists must become more involved in the basic research process itself, forcing academic and industrial researchers to turn their attention to novel treatment approaches to HIV-induced immune suppression.…" This was a tall order, one that "[required] that activists become as familiar with the $800 million AIDS program of the NIH as they have with its major clinical component," the ACTG. The ACTG "is but one eighth of the NIH AIDS program. A cure will never be tested by the ACTG unless it's discovered somewhere else first." Clinical trials were the late stage in the game—to get drugs into development, activists had to influence the course of basic AIDS research at the NIH, within NIAID as well as the various other agencies, like the National Cancer Institute, the National Institute of Child Health and Human Development, and the National Institute of Neurological Disorders and Stroke. "This is a new paradigm for AIDS activists," the TAG authors made clear: "We have to familiarize ourselves with a wide range of disciplines."
It was a significant shift, but a risky one, for the course of action that now seemed most crucial also appeared to be one in which activists were by no means guaranteed to succeed. Gonsalves and Harrington grasped the point clearly: "Activists' claim to expertise in clinical trials came out of lived experience. Most of us cannot claim the same for basic biomedical research." At best, activists could "hope to serve as catalysts for better and more coordinated work within the research realm, and as agitators with Congress and the Administration for enhanced resources in the public realm." Indeed, it was in the realm of public policy that the report itself had the most impact. Upon the election of President Bill Clinton, who had promised to prioritize
AIDS research, Senator Ted Kennedy made the TAG report the basis for an amendment tacked onto the NIH authorization bill. Following the blueprint laid out in the report, Kennedy called for a strengthened Office of AIDS Research within the NIH, which would have jurisdiction over all AIDS-related research in each of the NIH institutes.