New Voices on the Medical Horizon
The AIDS movement has encouraged individual patients to seek new ways of relating to their health-care providers and vice versa. But it has also inspired a range of organized challenges to biomedicine, some of which have developed into full-fledged social movements. Certainly, the history of medical self-help groups—ranging from the most reformist to the most radical—long precedes AIDS activism. But the past few years in the United States have seen a marked upsurge of health-related activism of a distinctive type: the formation of groups that construct identities in relation to particular disease categories and assert political and scientific claims on the basis of these new identities. With its assimilation of the critiques put
forward by the feminist health movement, the AIDS movement was a beneficiary of "social movement spillover"; now its own tactics and understandings have begun to serve as a "master frame" for a new series of challengers.
Most notably patients with breast cancer but also those suffering from chronic fatigue, multiple chemical sensitivity, prostate cancer, mental illness, Lyme disease, Lou Gehrig's disease, Alzheimer's, and a host of other conditions have displayed a new militancy and demanded a voice in how their conditions are conceptualized, treated, and researched. These groups have criticized not only the quality of their care but the ethics of clinical research ("Are placebo controls acceptable?") and the assignment of control over research directions ("Who decides which presentations belong on a conference program?"). While not every such group derives its approaches directly from AIDS activism, the tactics and political vocabulary of organizations like ACT UP would seem, at a minimum, to be "in the wind." (Could one imagine, before the AIDS activist repudiation of "victimhood," people with muscular dystrophy denouncing the Jerry Lewis Telethon as an "annual ritual of shame" and chanting "Power, not pity" before the news cameras? ) To date, none of these constituencies has engaged in epistemological interventions that approach, in their depth or extent, AIDS treatment activists' critiques of the methodology of clinical trials. But Bernadine Healy, then director of the NIH, expressed it well in 1992 when she told a reporter: "The AIDS activists have led the way. … [They] have created a template for all activist groups looking for a cure."
Breast cancer activism is an intriguing instance of this new wave, because the links to AIDS activism have been so explicit and so readily acknowledged. In 1991, more than 180 U.S. advocacy groups came together to form the National Breast Cancer Coalition. "They say they've had it with politicians and physicians and scientists who 'there, there' them with studies and statistics and treatments that suggest the disease is under control," read a prominent account in the New York Times Sunday Magazine . In its first year of operation, the coalition convinced Congress to step up funding for breast cancer research by $43 million, an increase of almost 50 percent. "The next year, armed with data from a seminar they financed, the women asked for, wheedled, negotiated and won a whopping $300 million more." The debt to AIDS activism was widely noted by activists and commentators alike. "They showed us how to get through to the Government," said
a Bay Area breast cancer patient and organizer. "They took on an archaic system and turned it around while we have been quietly dying." Another activist described how she met with the staff of AIDS Treatment News to learn the ropes of the drug development and regulatory systems. In 1994, ACT UP/Golden Gate participated with San Francisco-based Breast Cancer Action in a "funeral procession" -style protest against the Genentech Corporation to demand access to a monoclonal antibody with potential efficacy against the disease.
Gracia Buffleben, a "48-year-old heterosexual housewife and nurse" who joined Breast Cancer Action after her own diagnosis with cancer, was initially astonished by the expertise of the AIDS activists: "It was unbelievable to me that somebody could have the depth of knowledge that they had and not have a scientific background or a medical background." For her part, Brenda Lein of ACT UP/Golden Gate was dismayed by how easily manipulated the breast cancer activists could be at first, in the absence of the sort of expertise about drug development that AIDS activists had acquired. She described attending an early meeting between cancer activists and pharmaceutical company representatives where the drug company scientists "were just snowing them over left and right—blatantly lying to them: 'No, you can't have access to protocols,' 'Oh, we don't share that information, it's confidential.'" Lein worried, in 1993, about breast cancer activists "putting the cart before the horse": they appeared to be imitating the outward forms of AIDS treatment activism—"The AIDS folks have community advisory boards, we want that too!"—without first developing the knowledge base that had made those institutions meaningful. But increasingly, breast cancer activists were stepping back to learn the science and to educate themselves about clinical trial design—even to attend oncology sessions at the ACTG meetings.
Of course, it would be rash to assume that AIDS activism has created an automatic receptiveness on the part of scientists or doctors to health movements of this sort, and that the next round of activists can simply step up to the counter and claim their rewards. A more likely scenario is that AIDS activism will usher in a new wave of democratization struggles in the biomedical sciences and health care—struggles that may be just as hard fought as those of the past fifteen years. It is worth remembering, too, how difficult this sort of activism is to sustain: organizing a social movement is arduous enough without having to learn oncology in your spare time. In 1994, Mark Harrington was happy that his term on the ACTG's Community Constituency Group
had expired; he cited the "incredible amount of work" involved in preparing for scientific meetings: "There are enormous faxes and Federal Express boxes, and there are four to six conference calls a month." More profoundly, one of the challenges for any movement that would follow in the footsteps of AIDS treatment activism is how to sustain, over an extended period, what Harrington describes as "a lasting culture of information, advocacy, intervention, and resistance." Asked Harrington: "How can we foster this culture that is probably going to need to continue for longer than all of us may? This becomes a very important issue, and one that we didn't consider in the first few years. …"