Promoting "Good Science"
The mid-1990s saw the U.S. public engrossed by popular nonfiction like The Hot Zone and Hollywood films such as "Outbreak," which presented terrifying images of the sudden and devastating illness caused by the rare Ebola virus. AIDS and the fears it had provoked in the 1980s were often the unspoken subtexts in these representations. Yet ironically the ongoing brutalities of the AIDS epidemic seemed to fade from the public eye—even as the number of cases in the United States passed the half-million mark and U.S. health authorities reported that AIDS had become the leading killer of twenty-five- to forty-four-year-olds. Seen less as a raging plague than as a chronic plight, AIDS, like homelessness and drug use, had merged into the background landscape of late-twentieth-century social life.
Activists struggled to bring AIDS back to center stage. For a while, it had seemed as if a Democratic administration might make a difference, that it might offer a different "political opportunity structure" for movement activism. But whatever President Clinton's sympathies, AIDS was far from the top of his agenda. One apparently promising step was the establishment of an eighteen-member presidential
commission, the National Task Force on AIDS Drug Development, designed to bring together representatives of government agencies, the pharmaceutical industry, the research community, and activist groups to recommend ways to streamline the discovery and testing of new AIDS drugs. The panel included Ben Cheng of Project Inform, Peter Staley of TAG, and Moisés Agosto of the National Minority AIDS Council and TAG. Daniel Hoth, who had left NIAID for private industry but was a member of the task force, noted the key difficulty confronting them: "Very few of the problems are amenable to executive proclamation." By early 1996 the group had disbanded, acknowledging that they had been unable to remove the obstacles that stood in the way of faster development of new AIDS drugs, and citing lack of clear support from President Clinton.
In debates over how to improve the drug development system, activists were just one player and held relatively few cards. The pharmaceutical companies, by contrast, could often push research as their interests dictated. Drug companies could collaborate with one another, sharing data when it suited their purposes: fifteen of them had formed an entity called the "Inter-Company Collaboration for AIDS Drug Development" to test combinations of drugs produced by different companies. But drug companies could also go their own ways or exit the arena altogether. Many biotechnology firms, for example, were finding the AIDS arena too risky and were choosing to invest their resources in more promising efforts.
By the mid-1990s, AIDS activism in general was in a period of decline, and the "treatment activist" subset looked considerably different from its incarnation in the late 1980s. The dominant wing of treatment activism—which encompassed groups such as TAG, Project Inform, and subgroups of ACT UP chapters around the country, along with representatives to the CCG and local community advisory boards—was small, committed, relatively expert, and relatively professionalized. As the mainstream treatment activist groups have moved into the mid-1990s, their work has proved to be a vital but less visible, and in many ways less hopeful, political endeavor.
There are many factors that have contributed to the current juncture. While all social movements confront the issue of burnout and renewal, few find that on a regular basis their leaders become ill or die. More generally, much of the difficulty has lain in the vicissitudes of the research process and the sheer intractability of the scientific problem. Garance Franke-Ruta, a TAG activist who was 17 when she first joined ACT UP, recalled the evolution: Activists first gained access
to the system at a time of relative optimism, when drugs such as AZT suggested the hope of keeping patients alive until a better drug came along. By the early 1990s, when the much-disliked and marginally effective AZT was still the first-line therapy, activists had come to adopt a longer view. "Most of us are just simply not going to see the answer to this in our lifetime," commented San Francisco activist G'dali Braverman. "And I think there was an excitement in the early days and this feeling that we could change everything—which we will! —and that we would live to see it and that the answers were already there, we just hadn't seen them, or hadn't been told them. We know better now."
With this perspective came a further shift in strategic thinking away from the simple strategy of "drugs into bodies" and toward the promotion of "good science." As Moisés Agosto put it, "A lot of treatment activists got involved [in the 1980s] believing that through their activism they were going to be able to save their lives." Strategies, therefore, were based significantly on the desire to get something—anything —through the pipeline—to get "drugs into bodies" fast enough to matter for the health of the current generation of activists. Agosto continued: "Now, my personal [belief] is, 'No, I'm not going to be able to save my life.'" In the ongoing tension between "access" and "answers," activist strategy had moved toward the opposite pole: "It's about having good science that develops good therapies [so] that we may have a cure or therapy someday."
In this current period of adjustment, groups such as TAG, ACT UP/Golden Gate, Project Inform, and others around the country have accelerated their engagement with the AIDS research effort, but the details of their work have receded from public view. As the issues become ever more complex and technical, they also become more difficult to summarize on a leaflet or in a sound bite. Nor has it proven easy to recruit new activists into a movement with such a high degree of accumulated technical expertise. "The training program is sink or swim," Derek Link commented. "People who are totally intimidated are not going to do well."
To the extent that polarization between "us" and "them" increases the tendency for social movement actors to sacrifice for the cause, the evolution of relatively more cooperative relationships between activists and their interlocutors in research and government may have made it somewhat harder for the movement to stoke the fires of passion. Some activists, such as the novelist Sarah Schulman, who are critical of those in groups like TAG believe that the decline in the use
of direct action techniques spelled the end of effective treatment activism. But others reject what they see as a fetishizing of confrontational direct action—trying to "scream a cure out of a test tube"—insisting that tactics should be suited both to the task at hand and to the stage in the evolution of the movement. "It would have been stupid to do a large demo when you could have picked up a phone and made a couple of phone calls and gotten just the same results," commented Harrington.
Implicit in this evaluation, however, is not simply a practical insistence on "doing what works," but also a transformed conception of the identity of the antagonist. In place of the charges of genoc ide that activists had used in the early days of ACT UP to frame their critiques of the research establishment, these activists were now often inclined to acknowledge the good intentions of researchers. "There's a new respect for the scientists," said Gregg Gonsalves in an interview in the gay magazine the Advocate: "There is more of a willingness to focus on the problems that the scientists are really facing rather than what we once thought of as the scientists' malice." If so, Anthony Fauci has certainly endorsed the change of heart. He told the same reporter: "I have to admit it's gratifying that people who are highly qualified—and most of the activists that I have gotten to know are—have come around to support us. … In the late '80s we were getting pushed around to put people in clinical trials for drugs that we really didn't think were very promising anyway. … Now that we are in agreement about the need for basic research, maybe we will have better drugs and vaccines one day."
Is this co-optation? Or is it well-advised realism that is the fruit of (sometimes bitter) experience? Garance Franke-Ruta's reflections suggest the ways in which the acquisition of the "realistic" perspective of the educated participant in science can constrain utopian imaginings, even as it paves the way for a more focused and sober activism: "When ACT UP started, people didn't know as much, and demanded much more. And there was something in ACT UP initially that was really wonderful, which was that out of ignorance of what is possible, you are sometimes able to do the impossible—whereas once you know what is possible and what is not possible, you let that define what it is that you're willing to ask for. So the more we learned, in some ways the less we were able to ask for , until eventually we knew so much that we felt—we feel—like sometimes we don't know that we can ask for anything [emphasis added]."
There is, of course, virtue in self-doubt and critical reflection. Scientists, too, could be heard reporting their own. "I think we got a little bit too cocky too early," a Princeton molecular biologist told the New York Times in 1994, describing the need to refocus on basic research. Such sentiments are a useful antidote to hubris and to a surplus of faith in what science can accomplish. Over the course of less than a decade and a half, researchers had vastly expanded the knowledge about AIDS, while treatment activists had garnered their own expertise and reshaped the conduct and contours of biomedical research. In the end, however, neither activists nor scientists could force a cure into being, no matter how committed their efforts or how sophisticated their interventions.