A new account of the early days of Aids shows how cleverly activists influenced the powerfulby Elizabeth Pisani / January 16, 2017 / Leave a comment
“It’s time gay guys just grew up!”
This jarring comment came recently from a youngish gay friend, a former Aids activist and sex worker. We were talking about whether the NHS should pay for pre-exposure prophylaxis (PrEP), which involves people who don’t have HIV taking small doses of treatment to avoid infection. Several large trials have shown that PrEP works very well when it is used consistently, just as condoms and abstinence work very well when they are used consistently. My friend (who works for the NHS) has no clinical or moral issues with PrEP; he just doesn’t think the NHS should buy it for people who could pay for it themselves. If men could buy recreational drugs before having unprotected sex, he reasoned, they could also buy the HIV treatment pill Truvada that works as a preventative.
My friend’s opinion was jarring not because it was wrong, necessarily, but because it sounded nannyish about sex, and that’s desperately unfashionable, especially within the gay community. According to David France, whose new book How to Survive a Plague chronicles the early years of the Aids epidemic in New York, that’s been true for at least three decades.
When the New York Times first reported in July 1981 on what was to become known as Aids, the paper noted that most cases “had involved homosexual men who have had multiple and frequent sexual encounters with different partners.” France, at the time young, gay and enjoying everything the city had to offer, reports that: “I was more annoyed than alarmed by the news, which seemed like a new slander on the gay community…” Later, when it seemed the deaths may indeed have been triggered by a sexually-transmitted pathogen, a handful of prominent gay men, including playwright Larry Kramer, began to warn of the dangers. “We’ve been too accustomed to fear, particularly the fear that our sexual freedom, so hard fought for, will be taken away from us,” Kramer wrote in 1982. “But we must realise sex is not the fabric holding our community together.” At the time his comments were greeted with outrage by those who believed that any suggestion of sexual constraint was an attack on gay identity.
Eventually, the gay community in New York did accept that penetrative sex might spread Aids and so adapted to the new risks. France describes how sex worker Richard Berkowitz, realising that he had often been paid for services that didn’t involve intercourse, wrote a “safe sex” manual—a radical concept at the time. To most of the gay community, however, prevention was a secondary concern. As the still nameless epidemic began to cover gay men in purple blotches, turn their breathing into gurgles and then melt them into corpses, survivors focused their energies on treatment—on getting “pills into bodies.” It’s to this quest that the great bulk of How to Survive a Plague is dedicated.
The book proceeds through denial, unspoken fear and muttered anxieties to full-throated war-cries. The cries were those of ACT UP, a group of mostly young, white, gay men who had become accustomed to spending their weekends in hospitals or at funerals, caring for, then burying, friends assaulted by this mysterious and terrifying disease. Founded in 1987, the group wanted treatment for the virus that destroyed the immune system and was eventually christened HIV. But they also wanted treatment for the Kaposi’s sarcoma that covered the body and lungs in cancerous lesions; the cytomegalovirus that blinded people; the oral candidiasis that made eating unbearable; the pneumonia that led to death by drowning. The cry of “You’re killing us!” was aimed at getting pills out of lethargic pharmaceutical companies, who to the activists seemed to be conspiring with a lumbering research establishment and self-serving politicians to deny them treatment.
“To the activists, pharmaceutical companies seemed to be conspiring with the research establishment and politicians”
The young men at the core of France’s narrative soon progressed from casting undifferentiated blame to more effective research activism. HIV has changed the biomedical sciences for good—in both senses. By the time I was researching HIV in 2001 among gay men, sex workers and drug injectors in Asia, I consulted the people I was working on in designing questionnaires and sample frames. I often hired them as study staff, and I always discussed results with those who had donated blood, urine and time to the research. Their advice improved my science. They were also the people best placed to use the results of the research: why wouldn’t I involve them?
France’s book (as well as his documentary of the same name) is a reminder that it was not ever thus. When in 1989 members of ACT UP turned up to an HIV research conference to which they’d been invited—and then uninvited—the head of the national HIV clinical trials network welcomed his potential patients by saying: “We did not invite them. We wish they were not here…They will not be permitted to speak in any of the meetings.”
This aversion to what was dismissively called “constituency representation” was a toxic cocktail brewed from scientific snobbery (patients are supposed to do what the doctor orders) mixed with homophobia, and spiked with a distaste for the high-profile antics of the activists. Energetic, creative and angry, ACT UP New York staged die-ins in St Patrick’s Cathedral while Cardinal John O’Connor (who preached against condoms) said mass. They invaded the headquarters of pharmaceutical company Burroughs Wellcome. They raised their banners on the trading floor of the New York Stock Exchange, delaying the start of trading for the first time in the Exchange’s 197-year history. Their actions were dramatic and sometimes funny—it’s a joy to picture homophobicSenator Jesse Helms’s suburban home dressed in a giant condom. The filmmakers, artists, writers, journalists, designers and lawyers of ACT UP displayed their anger in public very well. None of this endeared them to an establishment which, so the activists believed, would have been happy to see the gay community go under.
France straddles the roles of reporter and activist; he ably conveys the heady mix of excitement and fury that drove the protests. He does well, also, at making us live through the grinding tedium of the epidemic, which reduced so many social encounters to a litany of discussions of symptoms: as one friend clears his lungs, the next comes out in pustules; as your lover gets hold of some underground treatment and gets out of bed, your colleague’s nerve-endings turn to needles and he can no longer walk. He describes an endless round of financial worries among men who had lost their jobs or who were evicted, all the while trying to buy treatments on the black market. And there’s an awful lot of squabbling, both between high-profile
scientists (the American Robert Gallo and the Frenchman Luc Montagnier, who both claim to have discovered HIV) and between the activists themselves, something that we are treated to in more detail than the book can really bear.
The most important squabble was the one that eventually split ACT UP, but which also shook the research establishment out of its snobbery. Since the late 1980s, the Treatment and Data committee, a sub-set of ACT UP, had been running a sort of “science club.” Reading virtually every paper published on HIV-related research, its members educated themselves in the language and methods of clinical trials. By the time they turned up in jeans and bomber jackets to the research conferences from which they had been disinvited, they could hold their own with any epidemiologist or virologist. They began to do the things that the establishment was failing to do, such as publishing a coherent research agenda for HIV and opportunistic infections. They pointed out that with their help, the torturously slow process of recruiting patients for research could be speeded up, particularly if the scientists took on board the things that were making HIV-positive people stay away from trials: comparing new drugs with placebos instead of the current best treatment, for example, or insisting that people in trials give up prophylaxis that prevented other infections.
To the shoutier members of ACT UP, this seemed perilously like consorting with the enemy. And so in 1991 the science club peeled off, renamed itself the Treatment Action Group and got a place at the research table. Its members started wearing ties and working with researchers in both the pharma industry and academia to design studies that were ethical and useful, sometimes using research as a surreptitious way to get the drugs to the people who needed them most. Within four years, in January 1996, two pharmaceutical firms announced they had discovered combinations of drugs that could keep HIV at bay. Virtually all of the ACT UP activists who were still alive when those results were announced were still alive over two decades later—something they never imagined possible when they were being dragged by police from the frontlines of some demonstration or other.
There is no question that the relentless lobbying of gay men and their allies knocked years off the time it took to get effective HIV therapies to the market. Aids activists radically rewrote the rules of biomedical research, underlining the fact that science cannot thrive in an ivory tower. To achieve real impact, Aids activists taught us, research must be embedded in the societies whose problems it seeks to solve. There’s no doubt, either, that the skills the gay community honed during the Aids years have been put to great use to achieve other victories unimaginable at the time, such as the right to same-sex marriage.
“Aids activists radically re-wrote the rules of bio-medical research, underlying the fact that science cannot thrive in an ivory tower”
What we haven’t seen in recent years is the same tactics brought to prevention. Nothing makes educated, articulate people shout more loudly than their imminent death. Since HIV treatment became widely available in 1996, the threat of death has fallen dramatically, and with it the shouting. New HIV infections acquired in the UK, on the other hand, are on the rise, especially among gay men. From a low of fewer than 1,500 when treatment was first widely available, the number of gay men diagnosed with HIV in the UK each year doubled to 2,923 by 2015.
I was greatly cheered when it was announced in December that the NHS had decided to pick up the tab for PrEP (although only under the guise of a clinical trial involving 10,000 people—a trick which mirrors ACT UP’s own early tactics). The NHS had earlier argued that prevention commissioning was a matter for local councils. The UK’s National Aids Trust sued them, and won. No giant condoms, no mass arrests of protestors, no enraged cardinals. Just effective professional activism. It’s built on the work of those, like France, who survived the plague. And the legacy of the tens of thousands who didn’t.