The Diversification of Treatment Activism
Treatment activism began in gay communities for the same reason that AIDS activism in general began in gay communities—because gays asserted "ownership" of the social problem and had the material and symbolic resources with which to organize themselves and confront adversaries. But even within the predominantly gay male social movement organizations like ACT UP, various constituencies had asserted their priorities. In New York City, for example, the Women's Caucus of ACT UP had been pursuing treatment issues since 1988 at some distance from the work of the Treatment & Data Committee (the home of Harrington, Barr, Eigo, and others), made up mostly, though not entirely, of men.
Activists in the Women's Caucus, and their counterparts around the country, confronted a complexly interwoven set of obstacles in bringing attention to the health needs of women with HIV and AIDS. In a book on women and AIDS, Gena Corea has described the "crazy-making politics of knowledge" that seemed to bar women from scientific consideration and medical treatment: the Centers for Disease Control's definition of AIDS, created largely with reference to the opportunistic infection contracted by gay men, systematically "exclude[d] the symptoms appearing exclusively in women," such as pelvic inflammatory disease. In very practical terms, this meant that women were not receiving the health and disability benefits that accrued from an AIDS diagnosis. ("Women don't get AIDS, they just die from it," to quote the ACT UP slogan.) However, the definition couldn't be changed to include women's symptoms, the CDC maintained, because of the absence of data proving a causal link between those symptoms and HIV infection. But the necessary data couldn't be generated , because "women of childbearing potential" had largely been excluded from clinical trials (putatively out of concern for their
potential fetuses), and when they were included, no pelvic exams were performed. This meant not only that we failed to learn about the effects of HIV in women, but also that women were denied access to experimental treatments that might have helped keep them alive.
Women activists linked their critique of these practices to an analysis of the history of the medical profession's treatment of women: women had long been considered medically "other." In the case of AIDS, activists charged, biomedicine ignored women except to consider them as "vectors" or "vessels"—as transmission routes to men or to babies, or as carriers of precious fetuses that required protection. Eventually, women activists pressed successfully for a change in the CDC case definition. They also pressured Daniel Hoth and Anthony Fauci to hold a National Conference on Women and HIV Infection in December 1990. According to Maxine Wolfe of the Women's Caucus: "Although men in ACT UP had, by now, been routinely meeting with NIAID officials, in order for women AIDS activists to get just a meeting with them we had to stage a sit-in at the offices of Dr. Daniel Hoth …, make constant phone calls, send him several letters threatening a repeat sit-in, and 'zap' him in front of 5,000 of his colleagues at the Sixth International AIDS Conference. …"
Gay men and lesbians of color also formed caucuses within ACT UP chapters around the country, and some of them, too, became concerned with treatment issues. But, as Cathy Cohen notes in her study, activists of color in ACT UP found themselves "in the precarious position of not being trusted by many in communities of color because of their ties to ACT UP and at the same time not being fully supported by influential members inside of ACT UP." And as Moisés Agosto, who became involved in AIDS activism after moving from Puerto Rico to New York City, discovered, it was often hard to convince members of racial minority communities of the need for activism on treatment issues, given the wide range of concerns confronting them. To the extent that these communities became open to AIDS activism, it was on issues of prevention and care. Treatment activism, Agosto found, was generally perceived as "an upper-middle class, white gay-boy thing to do"—though Agosto tried to demonstrate the importance of the work by translating treatment information into Spanish.
Finally, by the early 1990s, some hemophilia activists had also moved into the arena of treatment activism. Despite the very high incidence of HIV infection among people with hemophilia, this community had been slow to mobilize. Eventually people with hemophilia
would organize forcefully around the question of the culpability of the blood-banking industry in the infection of people with hemophilia through contaminated blood products, and they would pursue legal remedies. But "it's a very geographically dispersed community, there's not a lot of us, [and] we're dying at the rate of one a day, which is a lot considering that there were only probably eight or ten thousand of us infected to begin with," explained Jonathan Wadleigh, a founder of the key hemophilia activist group, the Committee of Ten Thousand. Gay men organizing an activist response didn't need to search far and wide to find others affected by AIDS. By contrast, "with an incidence of one in ten thousand [in the] population, normally you're lucky if you meet one person in a lifetime who has hemophilia."
When Wadleigh decided to begin attending meetings of ACT UP/Boston in the late 1980s, he was "often the only straight person" in the room as well as "the only person with hemophilia." But given the inaction he perceived on the part of the New England Hemophilia Foundation, Wadleigh "began to quickly associate [himself] more with the gay community and … to relate to the brand of activism that was going on there." Recognizing that the level of information about treatments in the hemophilia community was very low, Wadleigh started up a treatment newsletter, summarizing articles from the established grassroots publications such as AIDS Treatment News , the San Francisco AIDS Foundation's BETA , and Project Inform's PI Perspectives . He also became involved in methodological debates about the inclusion criteria for AIDS trials. Boilerplate language in trial protocols routinely excluded anyone with elevated liver enzymes—but people with hemophilia (along with injection drug users) quite often show signs of liver disease and hence have elevated enzyme levels. Wadleigh's fight to liberalize the entry criteria so that more people with hemophilia could participate in clinical trials was, in his view, one of his most significant contributions in the domain of treatment activism.