Acting Up

I still remember reading the article that appeared in the New York Times in July 1981: "Rare Cancer Seen in 41 Homosexuals." I also remember thinking, What kind of sick joke is this? "Gay" cancer?

Writer Larry Kramer, however, immediately made an appointment for a checkup. In his doctor's waiting room, he ran into a friend, Donald Krintzman, who told him he'd been diagnosed with the cancer in question, Kaposi's sarcoma. KS manifested on the skin in purple lesions, usually appeared only among elderly men of Mediterranean or Middle Eastern descent, and normally progressed so slowly that there was no need for treatment. Yet Krintzman would be dead by the end of the year.

Kramer was found to be cancer-free but set out to lead a response, trying to raise money for research and get the few known facts out. He would prove to be ineffective as a town crier. After the publication of his 1978 novel, Faggots, a critique of gay-male promiscuity, he was widely regarded in his own community as a doomsayer and scold. But he persisted. Early in 1982, almost six months to the day after the "rare cancer" article appeared, six men met at Kramer's apartment and created an organization called Gay Men's Health Crisis to address what was then being called GRID, "Gay-Related Immune Deficiency." Rodger McFarlane, who was dating Kramer at the time, offered to list his home phone number as the GRID hotline. On day one, he got a hundred calls—from men in hospitals lying in their own shit because nurses were afraid to touch them, men at home who didn't have the strength to shop for groceries, men who wanted help committing suicide, men who were, McFarlane reported, "uniformly thrown out of jobs, uniformly couldn't get benefits, uniformly without legal protection."

The day Kramer saw his doctor the previous summer, the physician had warned him about what was coming for the infected: "I don't think anybody is going to give a damn, and it's really up to you guys to do something."

David France's new book, How to Survive a Plague, illustrates the prescience of that remark: how (almost) no one gave a damn and how "you guys," activists with no training in science or medicine, would have to fight "to crack open the secretive and illogical world of pharmacological research" in a desperate effort to save lives—not least among them, their own. All the way through 515 pages of text, I felt I could hear the clock ticking. It's both a moving and an enraging read.

The early years of the epidemic are covered, of course, in Randy Shilts's And the Band Played On (1987). That book provides a chronological account of government inaction and scientific failure through the end of 1985. It was published in 1987 and would have already been in production when the direct-action group ACT UP ("AIDS Coalition to Unleash Power") formed in March of that year. Shilts's book includes more on San Francisco (where he was based), more on what was happening—or not—at the Centers for Disease Control and Prevention (CDC) and in Congress, and more on what was happening globally. Shilts died of AIDS in 1994.

France's book focuses on the science: the work of early caregiver-researchers like Dr. Joseph Sonnabend and his activist-patient Michael Callen; the search by AIDS patients for illegal—or even homemade—cures; the dithering at agencies like the National Institute of Allergy and Infectious Diseases (NIAID) that were supposedly studying treatments. Ultimately, center stage goes to the small group of activists who created the Treatment Action Group (TAG), an offshoot of ACT UP, and who managed to work their way inside the pharmaceutical industry. By 1996, fifteen years after the first reports of a "gay cancer," antiretroviral drugs called protease inhibitors were allowing many patients to manage an HIV/AIDS infection. What becomes clear in How to Survive a Plague, above all, is that it needn't have taken so long—to put it mildly.

Homophobia slowed everything down, for starters. Although the GRID appellation had changed to AIDS by the late summer of 1982, the plague was still seen as mostly a gay-male problem. The Reagan administration ordered the CDC to reduce spending on the epidemic, though no one yet knew what was causing it or how it was transmitted and hundreds had died. By the middle of 1983, France writes, "more than half of all gay men in New York and San Francisco were infected."

Unknown to any doctor or patient, at that point, scientists had already discovered the retrovirus that causes AIDS. Yes, early in 1983, at the Institut Pasteur in Paris. I've always found this to be one of the most shocking stories to emerge from the plague years, and France is not the first to tell it: how American scientist Dr. Robert Gallo tried to take the credit for this discovery after French scientist Dr. Luc Montagnier sent him samples of what would later be called HIV. Long story short, this delayed both meaningful research and the release of an antibody test.

Then, when that first antibody test did become available, in 1985, most gay men refused to take it for fear that they would lose their jobs, their housing, and their health insurance. Most cities, including New York, had no gay-rights legislation in place. In fact, gay sex was still illegal in many states. That year, twenty state legislatures debated quarantining people with AIDS, while Republican congressman William Dannemeyer introduced a raft of homophobic legislation, including a bill that would give a long prison term to any gay person who tried to donate blood. There was simply no upside to taking the test. There were no treatments.

One turns the pages of this book thinking if only, if only, if only. In 1987, a team of chemists at Merck, led by Irving Sigal, discovered a protease gene in HIV and saw that it played a key role in the replication and mutation of this complex retrovirus. He began to study how to neutralize it. Then, in December of 1988, Sigal boarded the airplane that crashed in Lockerbie, Scotland, blown up by a terrorist bomb. Work on protease inhibitors was put on hold.

Where was the urgency? Small groups of activists like the Lavender Hill Mob and the Silence = Death collective did what they could, but ineptitude and indifference on such a massive scale required a massive response.

ACT UP immediately laid out an agenda to address the group's central goal: "drugs into bodies." Shouldn't there be a national policy on AIDS? And someone in charge? A central agency to coordinate what was happening at the National Institutes of Health, the CDC, the Food and Drug Administration? Shouldn't there be an easy way for patients to enroll in drug trials? And why were people with AIDS (PWAs) being given placebos? This was a practical agenda, not a radical one.

That same month, the FDA approved AZT, an old cancer-fighting drug, for the treatment of HIV. Manufactured by Burroughs Wellcome, AZT had limited impact on HIV and terrible side effects. And, at the time, it was the most expensive drug in history.

Two stills from David France’s documentary How to Survive a Plague, 2012. IFC Films.

In May 1987, Ronald Reagan finally addressed the epidemic that had already killed 19,938 Americans, but his Presidential Commission on the HIV Epidemic seemed set up to fail. His appointments included people like New York's Cardinal John O'Connor, who opposed both condom use and gay civil rights. Another appointee thought it likely that AIDS was spread by toilet seats. The commission became, in France's words, a "flamboyant mess," until Reagan handed the chairmanship to Admiral James Watkins, who had zero interest in the job and knew nothing about medicine. He accepted the post after Reagan told him, "You're exactly who we're looking for." Then he actually did his duty. An activist named Bill Bahlman began to attend every meeting, handing out scientific studies and trying to speak individually with each commissioner. In the end, the Watkins Commission made 576 recommendations, some of them mirroring ACT UP's demands—like tripling the money for research and reforming the FDA, where it usually took seven to ten years to get a drug approved and "into bodies." Not one recommendation was carried out.

For years, desperate AIDS patients had been trolling the drug underground for help. There'd be a craze for, say, AL-721, a compound derived from egg lipids, until people saw that it didn't work. A friend of mine used to fly to Mexico every month to buy . . . some drug not approved here. (He died in 1993.) Members of ACT UP's Treatment + Data Committee (T+D) began to educate themselves about the drug-approval process. How exactly did the FDA, NIH, and CDC work? As France puts it, "The health care system could not be bypassed. It had to be conquered."

Technically, no one died of AIDS. Rather, they died because AIDS destroyed their immune systems. Patients would show up at the doctor's office with, say, cryptosporidiosis, a disease found in livestock. Early in the epidemic, the No. 1 killer was a preventable infection called Pneumocystis carinii pneumonia, or PCP, a human illness so rare that the one drug effective in treating it was no longer in production. Trials showed that aerosolized pentamidine could keep people with AIDS from getting PCP, but the FDA was reluctant to release it because the trial had no placebo arm. In this case, it was Dr. Sonnabend, and his patient Callen, who successfully lobbied to get the FDA to approve the drug, "the first time that a drug had been released based on data generated by community researchers."

ACT UP discovered early in 1988 that more than forty AIDS drugs had been approved for clinical trials but that thirty-nine of those trials had almost no patients in them. Instead, most people with AIDS were participating in ongoing AZT research. When Iris Long and Jim Eigo, of T+D, met with a doctor running one of the trials in 1988, they learned that participants had to meet a certain clinical profile, e.g., a certain T-cell count. Eigo proposed that there be a "parallel track" to the study for any patient who wanted the drug. He wrote the FDA and NIH about this but got no reply.

In June of 1989, with no overall AIDS strategy apparent at the federal level, T+D decided to create the National AIDS Treatment Research Agenda to help the government researchers—specifically, NIAID director Dr. Anthony Fauci. It distributed the plan at the Fifth International AIDS Conference in Montreal. After the convention, Fauci agreed to meet with a few activists to defend his AIDS Clinical Trial Group. In July, he began to talk to them about a parallel track, finally agreeing to a "modified parallel track" for the trial group. (Certain drugs would be released to any patient willing to partake.) "There was no underestimating the significance of this moment," writes France. "The activists and the establishment were now working together."

Indeed, How to Survive a Plague tracks the birth of a new style of activism. It's one thing to demonstrate—as many activists did—against the likes of Jesse Helms, the Republican senator who did everything he could to keep one government dime from going to AIDS research. Or to lock yourself inside an office at Burroughs Wellcome and announce that you won't come out until the company lowers the price of AZT. But the activists in T+D—later TAG—were careful about targeting scientists. They needed them.

Still, one of ACT UP's most significant protests took place in October 1988 at the FDA. Planning began early in the summer. T+D organized a series of "FDA teach-ins" to share what it had learned about the agency and prepare their arguments. A T+D member named Peter Staley began fund-raising for everything from chartered buses to bail money. Several facilitators offered civil-disobedience training. Twenty-five affinity groups within ACT UP designed their own signs and props, and the media committee alerted journalists all over the country. The 1,200-plus activists who showed up at an FDA building in Rockville, Maryland, created what France describes as "a joyous county-fair like" atmosphere as they marched and chanted, "AZT is not enough / Give us all the other stuff!" One affinity group lay down in the road holding foamcore headstones inscribed with messages like "I GOT THE PLACEBO—RIP." Staley got a boost onto the awning over the entrance and set off smoke bombs. "What a sight he was," writes France, "with a bandana tied Mishima style around his forehead, and wearing a black leather bomber jacket." It didn't jibe with the image of gay men then current in the mainstream media. Staley appeared on CNN's Crossfire that night to debate right-wing ideologue Pat Buchanan and his liberal cohost Tom Braden about FDA approval for AIDS drugs. And he became, says France, "the first true AIDS star."

A Wall Street bond trader who became a full-time T+D activist, Staley emerges as one of the heroes of this book. He also took part in the office seizure at Burroughs Wellcome, though it was a bust in every way. (After the activists carefully sealed doors and windows, the sheriff's department popped through the Sheetrock and arrested them.) Staley's big moment came when he was invited to speak at the International AIDS Conference in 1990 in San Francisco, an event fraught with controversy. Many ACT UP chapters boycotted the meeting to protest a new piece of Jesse Helms legislation that barred anyone with the virus from entering the US. But every T+D member wanted to be there, wanted to engage with the "biotechs, the bench researchers from Europe and Asia, the epidemiologists, the biostatisticians who reviewed trial protocols."

And Staley's speech was aimed at making them a single community. He invited the scientists to join him in a moment of activism. President George H. W. Bush was spending that very day at a fund-raiser for Helms. Staley led them all in chanting, "Three hundred thousand dead from AIDS / Where is George?" He told the scientists that they should now consider themselves members of ACT UP, and that in order for him to beat the virus, he needed their help. Maybe they'd misjudged each other. Both sides had made mistakes. "But let's be fair here—when we make mistakes . . . people become offended and begin to hate ACT UP," Staley said. "Whereas, when government or the scientific community makes a mistake . . . thousands of people can die. . . . Can we all, before it's too late, begin to understand each other?"

According to France, "Staley had ushered in a new era." Tensions between scientists and ACT UP didn't disappear, but they did decrease. Soon, the activists were partners in redesigning the AIDS Clinical Trials Group. Merck, one of the drug companies that eventually came up with protease inhibitors, invited a couple of activists to review protocols for AIDS drugs while they were still in development. But Staley's speech had created an uproar within ACT UP, and he was brutally criticized for betraying the group by speaking of their mistakes "in order to create some vague feeling of kinship with the scientists." Increasingly, T+D members were seen as arrogant. Here was a dilemma that often seems to crop up on the left. Stay outside and critique? Or infiltrate? T+D would infiltrate. They left ACT UP and were reincarnated as TAG in 1991.

Ironically, TAG became the group trying to slow down the release of protease inhibitors in 1994. It didn't want the FDA to act "out of the same misguided sense of compassion that had allowed AZT to flood the market." It called for "a large and lengthy trial."

After years of exhausting struggle, expectations were low, and only one TAG member, Spencer Cox, bothered to show up the day Merck and Abbott released test results on protease inhibitors. (He had helped design the trial for Abbott's drug, Norvir.) Cox listened and began to cry. "We did it," he whispered to the person next to him. "We're going to live."

But nothing about AIDS was ever simple. Cox would struggle to find a drug "cocktail" that actually worked for him, and at some point he stopped taking his pills. It's likely that he suffered from PTSD. Cox died of AIDS-related complications in 2012. By the end of that year, the plague had claimed the lives of 658,507 Americans.

Cynthia Carr is the author, most recently, of Fire in the Belly: The Life and Times of David Wojnarowicz (Bloomsbury, 2012).