How To Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS

It has been more than 20 years since the introduction of the first-generation antiretroviral therapy (ART), the drug cocktail that transformed AIDS from a plague into a manageable, chronic infection. The passage of time has allowed David France to produce what will likely be the definitive first-hand account of how the AIDS epidemic ravaged New York’s gay commu­nity and how that community organized in response. The book and accompanying award-win­ning documentary present the painful progress from the disease’s recognition in the early 1980s to the scrambled push to get the newly discovered drugs approved and released in 1994, documenting the diverse community responses this progress received.

Here are the heroes and the villains: the selfless dedication of lay researchers who challenged and provoked the scientific community, the physicians and caregivers who struggled with fear and ignorance while managing impossible caseloads and the oppor­tunists who placed self-aggrandizement above the lives of those dying around them. France infuses their stories with courage, pathos and a deep humanity, punctuated by T-cell counts and viral loads. For the first time in history, patients joined in the search for their salvation. And this, according to France, is how to survive a plague.

At the heart of the story is New York’s chapter of ACT UP. Formed amid the fear and frustration at the failure of govern­ment institutions to react effectively to the disease, ACT UP’s highly theatrical and often sensational protests raged against big pharma, the CDC, the FDA and the Catholic church, as well as the politicians and media who ignored the crisis or pronounced it God’s wrath on homosexuals.

Now, 20 years into the treatment era, with ART drugs readily prescribed to sexually active, HIV-negative people as pre-exposure prophylaxis to prevent infection and with gay sex not quite the political scare button it once was, France takes a long look back and affords us the opportunity to review some of the more difficult and contentious issues that were, and to some degree remain, so divisive.

In their early struggles to under­stand the disease, members of the gay community were reluctant to surrender their newfound sexual freedom to prac­tice anal sex in the bathhouses of major cities. There was an unwillingness to accept the idea that AIDS was caused by a pathogen transmitted during sex and a refusal to believe that the appearance of AIDS was related to the change in the number and nature of their sexual encounters. Today, we can perhaps be more objective in recognizing that gay liberation and the resulting increase in unprotected anal sex effectively opened a transmission pathway for the virus, a virus that may have existed peripherally in Western society for decades but was prevented from widespread transmis­sion by the social prohibition on gay penetrative sex. France presents both sides of the argument, but few today will argue that closing the bathhouses and adopting safer sex guidelines was the wrong thing to do. The desire to safeguard our personal right to sex on our own terms had to be put aside to slow the disease’s progression.

A long-standing controversy within ACT UP centered on the ef fect iveness of some of the organization’s tact ics. France is squarely on the side of ACT UP. His “warts and all” accounts of the fractious meetings in which difficult personali­ties (notable in this regard is the play­wright Larry Kramer) fight to control the direction of an organization that is intrinsically suspicious of authority are some of of time, money and energy to raise public awareness, redefine patient advocacy and change the way drug trials were conducted. Their heroism shines through every page of the book; however, France also recount s a meet ing in November 1991 when inf ight ing and factionalism were causing ACT UP to fall apart. Prominent member Mark Harrington questioned the organization’s tactics and effective­ness: “There is a group of people in ACT UP who are stuck with a set of tactics devised in the seventies that are essen­tially separatist in nature, and totally irrelevant to our work in the scientific and research infrastructure.… And we have to accept the ambiguity that comes with that and to realize that we have just as much potential to do harm as any greedy researcher. We will kill people with AIDS too, just like we say they can.” While there is little value in imagining what if ACT UP had used a less confron­tational approach, this should serve as a worthwhile caution for today’s activ­ists as they assail the social plagues society currently faces.

In a surprisingly sad epilogue, France again uses the wisdom of hind­sight to briefly look at what happened to some of the surviving characters in the years following the end of the plague. While some continued working in the field and made important con­tributions in the fight against AIDS (notably in Africa), others drifted into addiction and suicide. I was struck by the story of Derek Link, who had tes­tified before Congress as a person with HIV and famously demanded “HIV neg­atives get out of our way.” It transpired that he had never had the disease. He had fabricated his case history in order to be part of something important, something bigger than himself. It is sad, though perhaps not surprising, that many find purpose and meaning in an epic life or death struggle only to find themselves exposed and empty when the crisis has passed. Surviving a plague does not stop with the plague’s end.

How To Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS
David France
(Knopf, 2016, 640 pp)
978-0307700636, $30.00