Important note: Information in this article was accurate in 1989. The state of the art may have changed since the publication date.
The struggle now is to stay alive
San Francisco Chronicle - Monday September 25, 1989 Randy Shilts
MEMO: AIDS/THE INSIDE STORY The young men joined hands in a circle, inhaling deeply. With eyes closed, they strained to imagine white light falling around them. White light engulfing them, cleansing away the virus, saving their lives. Five years ago, such meetings, with "white-light meditations" conducted by solemn leaders from the Shanti Project, defined how San Francisco's gay community was coping with the ravages of the AIDS epidemic. The meeting that defined how local gay men contend with AIDS today was far different, unfolding not in sober meditation but in a noisy auditorium where leaders of Project Inform last week released the first results of their underground study of the AIDS drug Compound Q. The ethics and propriety of conducting clinical trials of potentially dangerous drugs outside normal research channels will be long argued by medical ethicists and eminent researchers. And it still may be a year before the ultimate value of this particular substance is thoroughly understood. What's more significant than the particulars of Compound Q and the scruples of "renegade research," however, is the extent to which groups such as Project Inform and gatherings like the public meeting last Tuesday night have come to personify the gay experience of AIDS in 1989. As the new world of AIDS has come to hold infinitely more hope and infinitely more frustration, the contrasts between this and the local gay community of 1984 could not be more stark. The gay community's AIDS activism of 1984 centered on gentle volunteers who helped ailing men slip into death. The advocate who opened last week's meeting, John Redding from the People With Immune System Disorders caucus of the AIDS Coalition to Unleash Power (ACT UP), felt compelled to reassure the audience: "Being a member of ACT UP does not mean having to raise bail every two weeks." The gay heroes of AIDS in the early 1980s were spiritual mentors such as Elisabeth Kubler-Ross, who gave advice on how to die with a smile on your face. The man drawing the greatest applause last week was Martin Delaney, who talked about the bureaucratic nuances of the Food and Drug Administration. The story of AIDS in the gay community of 1984 was the story of learning how to acquiesce to death; the story of AIDS today is about struggling to stay alive. The dramatic medical advances in managing HIV disease since 1987 have fueled this new psychology. While AIDS was a mysterious and seemingly omnipotent adversary just a few years ago, science has begun both to unravel the virus' enigmas and bring some measure of control to the disease's most lethal manifestations. Moreover, there's the growing awareness that although the medical solution for AIDS has not yet arrived, it may be at hand. The name of the game, most gay men now hope, is staying alive for the next four or five years so they'll be around to take advantage of it. The cliche-ridden writers of TV news have come to characterize the underground trials and angry protests this year as the work of "desperate AIDS patients" willing to do anything to stave off inevitable death. Like most TV news, this analysis suffers from oversimplification. The people at last week's Project Inform meeting were not as desperate as they were savvy. They listened intently as the doctors laid out the research. They asked probing questions about the drug's effects on beta-2 macroglobulin counts and p24 antigen-antibody levels. Having mastered the arcane intricacies of the human immune system as well as most physicians, they also talked their way through questions about the byzantine bureaucracies of scientific research and regulation. These were not desperate men, but people committed to use every medical and political resource at their disposal to survive. To be sure, the optimistic push for survival is not the whole story of AIDS in San Francisco today. Thousands continue to die. For those in the late stages of HIV disease, the scientific breakthroughs and political organizing have come too late. There was also a depressing reminder in the fact that the purpose of the public meeting was to inform people that whatever its benefits, Q is not the cure for which many had hoped. Given this, death and despair continue to be central realities of AIDS for many, just as they were five years ago. What makes this year different is that they no longer are the only components of the AIDS experience. As scientific knowledge grows and hope continues to build, many gay men are trading their quartz crystals and white-light meditations for medical and political activism that can exploit treatments now available and prod the research and regulatory agencies to turn out new drugs more quickly. That's why 1989 has been marked not only by the increasing scientific sophistication of such AIDS groups as Project Inform but by the political militancy of such groups as ACT UP. Frustration festers only when better times seem so close. Playwright Robert Pitman, who was one of the 19 San Francisco men to be infused with Compound Q during the underground trial, surveyed the 400 restless people at the Project Inform meeting last Tuesday night and pondered the vast differences between it and AIDS meetings of past years. "It's the difference between being active and passive," said Pitman. "There's something to be said for coming to peace with death. There's a lot more to be said about kicking and fussing all the way. That's what this is about -- not surrendering to the virus."
Keywords: AIDS 890925
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Important note: Information in this article was accurate in 1989. The state of the art may have changed since the publication date.
