The Last Battle

David France’s remarkable history of the fight against AIDS is a chronicle of the recent past that sheds light on the fights to come.

 

By Isaac Butler

 

December 6, 2016 

 

 

____________________________________________________________________________________ 

 

 

When memory fails, we must imagine. So let us imagine that it is early 1982, and a new, almost universally fatal disease is spreading through the gay communities in New York and San Francisco. A year ago, people called it “gay cancer,” because of the telltale purple lesions—evidence of an otherwise uncommon malignancy, Kaposi’s sarcoma—that appeared on the afflicted. Now, in 1982, with hundreds of gay men coming down with it, people are calling it GRID, Gay Related Immune Disease. By the end of the year, it will be called AIDS, Acquired Immune Deficiency Syndrome, and the number of cases in the United States will rise above a thousand. By the summer of 1983, approximately half of New York’s gay men will be infected, a harbinger of worse times to come. By 1990, a person will die of AIDS every 12 minutes in America.

In early 1982, no one knew for certain what caused GRID, or how, exactly, it was transmitted. Once KS lesions were visible on your face or hands, you would likely lose your job, because neither gay men nor GRID patients had any legal discrimination protections. You could be evicted from your apartment. If you died without a will, your estranged family could claim your belongings and your partner would get nothing. Very few doctors realized they needed to provide preventative care for PCP, the strain of pneumonia that was most likely to kill you but could be prevented with a common drug called Bactrim. Other opportunistic infections, like KS, had no agreed-upon treatment.

Making matters worse, the hurdles GRID patients faced from both the health care and political systems that were meant to protect them were considerable. The Reagan White House slashed its GRID budget in an attempt to cut government spending even as the mysterious disease spread wider. The only hospital in New York City that would admit GRID patients was the New York University Medical Center, but soon even NYU changed its policies so that patients could only be admitted to the emergency room, often receiving treatment, and dying, in hallways. Once researchers—and then the public—discovered that the nation’s blood supply has been tainted, panic spread. William F. Buckley proposed in the pages of the New York Times 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.” Sen. Jesse Helms advocated for mandatory testing and “quarantining” people with AIDS, and Reagan Education Secretary William Bennett proposed extending the sentences of convicts with AIDS indefinitely. These were not minority ideas. A Los Angeles Times poll found that 50 percent of Americans supported quarantining people with AIDS, and that 48 percent of them, in a chilling foreshadowing of Donald Trump’s plans to register Muslims, favored special identification cards for people with AIDS.

David France                                                                                               Ken Schles

As How to Survive a Plague, journalist and filmmaker David France’s sweeping history of the AIDS crisis, chronicles, over the years to come, every small success would bring new setbacks. The government would prove willfully inept at fighting the disease, leading to tens of thousands of unnecessary deaths. AZT, the one drug the government managed to get on the market in the early years of fighting the illness, was too toxic for half of AIDS patients to take, cost $10,000 a year, and (as a later study definitively showed) did not actually prolong the life expectancy of people with AIDS. Dr. Anthony Fauci, the closest thing the United States had to an AIDS czar, refused to set a research agenda and enlisted pharmaceutical companies to help shape the government’s research efforts. As a result, the federal government devoted most of its resources to further study of AZT, instead of remedies and guidelines for treating opportunistic infections, or basic research into how the human immunodeficiency virus worked. AIDS researchers, used to standard operating procedures that treated test subjects as mere data points, ignored the community of people with AIDS, often with disastrous consequences. It took the Reagan administration until 1987 to create a Presidential Commission on HIV, and, as France points out, it came stacked with such luminaries as “Penny Pullen, an obscure Illinois lawmaker who came to the attention of the administration when she warned, without evidence, that a subset of homosexuals were engaged in `blood terrorism’ by deliberately donating infected blood.” 

 

In the face of fear and hopelessness, of widespread neglect and hatred, of a mounting disaster spreading further and further like spilled ink on a marble floor, people with AIDS and their allies organized. They founded organizations both mainstream and radical to fight the disease: Gay Men’s Health Crisis, the National Association of People with AIDS, the AIDS Coalition to Unleash Power, the NAMES Project AIDS Memorial Quilt, the American Medical Foundation, the Gay & Lesbian Alliance Against Discrimination. They invented safe sex, saving countless lives. They bootlegged, stole, and imported drugs on the black market, distributing them through “buyers clubs.” Most importantly, they went to war on the political system that stigmatized them, the medical system that neglected them, the research system that ignored their humanity, and the culture at large that hated them. This fight led to sweeping changes in how drugs are tested, the humanization of both AIDS patients and queer people in the public eye, and, eventually, the medical breakthroughs that finally tamed and transformed AIDS for those who can access treatment.

It’s an extraordinary story: a medical mystery that becomes a chaotic, contentious, but most importantly successful movement for the rights and dignity of people despised by society. It deserves an extraordinary book. How to Survive a Plague is such a book, a sweeping social history, a bracing act of in-depth journalism, and a searingly honest memoir all at once. It is also, technically, a film tie-in, as France directed the acclaimed 2012 documentary of the same name, which offers a précis of roughly the final third of the book.

Another, perhaps better, way to think of How to Survive a Plague, however, is as a chronicle of the recent past that sheds light on the fights to come. Now as our president-elect is Donald Trump, and we enter another time in which we must fight together against insurmountable odds to shift an unfeeling political and cultural landscape for the better, France’s book is even more essential. As a culture we run the risk of romanticizing the battles waged during the crisis, of turning the years from 1981 to 1996 into an inevitable, uplifting narrative of triumph. Like Eyes on the Prize (which the founders of ACT UP studied), How to Survive a Plague resists our most sentimental impulses. Yes, it chronicles a time that the arc of history actually bent towards justice, but it also details the superhuman efforts of the hundreds of people who forced that arc to bend—and reminds us of our national complicity in millions of deaths.

 

As we enter another time in which we must fight together against an unfeeling political and cultural landscape, France’s book is even more essential.

France’s story begins with the New York Times’ “Rare Cancer Seen in 41 Homosexuals” headline and ends with the introduction of the triple cocktail drugs that reversed the progress of HIV in the human body to such an extent that people previously on death’s door were able to lead normal lives. Along the way, France follows a large circle of activists, doctors, medical researchers, and journalists (including himself) as they fight the disease and, quite often, each other. Many of the central subjects—Larry Kramer, Peter Staley, Mark Harrington, Garance Franke-Ruta—will be familiar to viewers of the film, but many other subjects, particularly those in the medical community, will not.

Thanks to his own work as a journalist, extensive research, and—due to both the introduction of the camcorder and the fear that they would not live to see the future they worked for—the tendency of AIDS activists to obsessively record their every conversation, France summons up everything from late-night heart-to-hearts between penniless activists to tony dinners in Georgetown mansions. Some of the stories contained in Survive, such as the plot to infiltrate the New York Post with gay journalists and the secret bootlegging effort that pressured Merck to move forward on triple cocktails, will likely be surprises even for those who lived through the heights of the crisis. France also, thankfully, sets the record straight about Gaetan Dugas, the so-called “patient zero” who was scapegoated unfairly for the spread of AIDS by the publicity and marketing machine of Randy Shilts’ And the Band Played On.

How to Survive a Plague ruthlessly focuses on the scientific, medical, and political struggles of the time. Thus we get no Liberace and no Magic Johnson, but we do get Rock Hudson and Ryan White, as their deaths changed the political landscape of the disease. We get plenty on The Normal Heart, because it is largely about the Gay Men’s Health Crisis, but nothing on As Is or Angels in America. Anyone coming for a definitive history of ACT UP is likely to be disappointed, as the book’s discussion of ACT UP remains, like the film’s, largely focused on the Treatment and Data Committee, which eventually broke from ACT UP to become the Treatment Action Group. Even the late Bob Rafsky, a major subject of France’s film who goaded Bill Clinton into adopting AIDS as a cause shortly before he died, receives only occasional mention. By the book’s own admission, this means that—while France discusses the additional hurdles that HIV-positive women and people of color faced—How To Survive a Plague largely centers on the activities, opinions, and actions of white men.

While France shows a journalist’s restraint in eschewing psychological speculation about his subjects, he is also a deeply opinionated witness to their triumphs and foibles, including his own. He appears to have refused the temptation of the memoirist to reconfigure his own history in maximally self-serving ways. After visiting a dying friend in 1984, for example, France writes that “I left the hospital as if he were already gone, as the old hands in Auschwitz did for those they distastefully called Muselmanner, the dead who hadn’t died yet, a mere technicality. The look in his eyes seared me, yes, but I was not yet numb from death, just terrified of it to the point of hypochondria and shameful behavior. I lifted my hand out of his with the same cold finality, and let my friend die the death he feared, isolated and alone.”

Another regular target of his jaundiced eye is the book’s most famous subject: Larry Kramer, the co-founder of both Gay Men’s Health Crisis and ACT UP, whom France depicts as equal parts essential force and pariah. One senses little love lost between the two men during How to Survive a Plague’s depiction of Kramer’s play The Normal Heart as both “Kramer’s betrayal”—a self-serving roman á clef that deeply wounded Kramer’s fellow activists—and also a work so powerful that by play’s end France “was not the only one gasping for breath.”

How to Survive a Plague is a testament to the bravery, sacrifice, smarts, and humor necessary to win a seemingly unwinnable battle. By detailing how activists attacked the disease and the system that perpetuated it, France provides what now feels like something of a survival guide to the years to come. Yet, while the book is inspiring, it is also unsparing in its depiction of the lasting ramifications of national trauma. France undercuts what could have been a simplistic, uplifting ending with a coda that brings us up to date with the survivors of the plague. Their accounts show us the ways they came to feel lost in the years following and the ways they are still haunted. Yet this honesty, just like France’s honesty about the failures, trials, and absurdities of the fight to tame AIDS, means the hope contained within the book feels real and earned. While no one planned for How to Survive a Plague to be published at a new moment of maximum hopelessness, here we are, and the chaotic, contentious, painful form of hope offered in this book is vital even as the fight it chronicles remains unfinished.

How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS by David France. Knopf.

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

Check out this great listen on Audible.com. The definitive history of the successful battle to halt the AIDS epidemic - from the creator of, and inspired by, the seminal documentary How to Survive a Plague. A riveting, powerful telling of the story of the grassroots movement of activists, many of...

Read more articles from SLATE, here.