The Genesis of Treatment Activism
Observers in gay and lesbian communities had other, more critical perceptions of the International Conference and the depth of the scientific and political commitment to finding treatments for AIDS. Secretary Heckler's statement at the conference regarding
the nation's priorities was widely reported—that AIDS must be stopped "before it spreads to the heterosexual community." Commentators familiar with other scientific conferences observed some distinctive aspects of this one: "The meeting was unusual for the remarkable mixture of participants—doctors and scientists of almost every discipline rubbing elbows with gay activists and media personalities," said the newsletter of the Bay Area Physicians for Human Rights, the gay doctors' group: "The unlikely combinations led to comments about 'strange bedfellows,' but there is no proof of the reality of that phrase."
Moments of levity notwithstanding, this was a threatening time for gay communities. With the availability of the HTLV-III antibody test, many would soon be learning for the first time that they were infected with the virus and faced with an uncertain future. At the same time, as the epidemic became more of a mainstream issue in the United States following reports of actor Rock Hudson's AIDS illness, fears of contagion on the part of the mass public multiplied, leading in many instances to stigmatization of homosexuals, whether healthy or ill. Gay rights and AIDS advocacy organizations feared that those testing positive for viral antibodies would be subject to discrimination, including loss of their jobs, housing, health insurance, and anonymity. In March 1985, the conservative commentator William F. Buckley Jr. proposed, in a notorious New York Times op-ed piece, that "everyone detected with AIDS should be tattooed in the upper forearm to protect common-needle users, and on the buttocks, to prevent the victimization of other homosexuals. …"
The activist response to AIDS by gays and lesbians dated to the earliest days of the epidemic (see chapter I). It rested on the firm base of gay rights activism constructed in the previous decade, with its sex-positive ethic and its suspicious take on medical claims. Now, in response to the new wave of provocations, many who had kept themselves at arm's length from such activism suddenly found themselves drawn into the fray. For a generation of relatively privileged, middle-class gay men, government had been something to restrict, to keep out of their "private" lives. As the boundary between private illness and public health exploded, these same men sought active governmental involvement to fund emergency AIDS research and to protect people with AIDS against discriminatory treatment. However, such assistance was far from the top of the agenda of the Reagan administration, which consistently requested modest funds for AIDS research only to see Congress boost the amounts on its own initiative. Lesbians,
often radicalized by feminism in general and influenced by the feminist health movement of the 1970s in particular, also mobilized in increasing numbers, frequently assuming leadership roles in AIDS struggles.
While the mainstream national gay rights organizations focused on issues of discrimination and budget appropriations, new voices emerged on the horizon. People with AIDS and their supporters discovered in early 1985 that ribavirin, one of the experimental drugs reported to inhibit reverse transcriptase, was available for two dollars a box in the farmacias of Mexico's border towns. Soon a steady stream of couriers were running shipments of ribavirin, along with an unapproved immune-boosting drug called isoprinosine, past U.S. customs and from there to AIDS patients all over the United States.
Elsewhere, wealthy gay men with connections found other pathways to therapies reported to have potential benefit. "There are some Americans in Paris these days who are not so much interested in abstract art or avant-garde literature as they are in saving their own lives," wrote Newsweek in August, a week after Rock Hudson became the most prominent "AIDS exile" to seek treatment with HPA-23. Embarrassed by stories of the "AIDS exiles," the FDA announced that it would permit the administration of HPA-23, along with the other antiviral AIDS drugs that had entered testing, on a "compassionate use" basis—a long-standing FDA mechanism for releasing experimental drugs on a case-by-case basis when requested by physicians for their terminally ill patients, in situations where no standard therapy is available. But the FDA spokesperson struggled to explain that the decision to permit compassionate use was in no way meant to suggest that HPA-23 actually worked . "There is no proven treatment for AIDS yet," he emphasized. "Everyone is assuming that this is a panacea, and there is none." The French, meanwhile, had been forced to discontinue HPA-23 in some patients because of its toxic effects on the blood and the liver.
The availability of drugs in other countries, however, only inclined the new AIDS activists to press for easier access by U.S. patients to a range of experimental compounds. Martin Delaney, at this time a Bay Area business consultant, former seminary student, and current ribavirin "smuggler," emerged as a key voice in these debates. "We don't know for sure how these drugs will work," Delaney told a community forum in the Castro district, the heart of San Francisco's gay community. "But it makes more sense than the next best thing, which is dying without trying anything." In October, Delaney held a press conference
to announce the opening of a new organization, Project Inform, which would conduct studies to determine the benefits of experimental drugs being used in the community, like ribavirin and isoprinosine. "No matter what the medical authorities say, people are using these drugs," Delaney told reporters skeptical of the idea of community-based research. "What we want to do is provide a safe, monitored environment to learn what effects they are having."
Some years back, Delaney himself had participated in an experimental trial of a drug to treat chronic hepatitis. The drug had cured his hepatitis but left him with permanent damage to the nerves in his feet. Delaney considered it a fair bargain; but the drug was thought too toxic, the trial was terminated, and the treatment never approved. It was an experience that would color Delaney's response to the AIDS epidemic. Who should decide what risks a patient can assume—the doctor or the patient?