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Summary
Summary
A New York Times 2016 Notable Book
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 them in a life-or-death struggle, who seized upon scientific research to help develop the drugs that turned HIV from a mostly fatal infection to a manageable disease. Ignored by public officials, religious leaders, and the nation at large, and confronted with shame and hatred, this small group of men and women chose to fight for their right to live by educating themselves and demanding to become full partners in the race for effective treatments. Around the globe, 16 million people are alive today thanks to their efforts.
Not since the publication of Randy Shilts's classic And the Band Played On has a book measured the AIDS plague in such brutally human, intimate, and soaring terms.
In dramatic fashion, we witness the founding of ACT UP and TAG (Treatment Action Group), and the rise of an underground drug market in opposition to the prohibitively expensive (and sometimes toxic) AZT. We watch as these activists learn to become their own researchers, lobbyists, drug smugglers, and clinicians, establishing their own newspapers, research journals, and laboratories, and as they go on to force reform in the nation's disease-fighting agencies.
With his unparalleled access to this community David France illuminates the lives of extraordinary characters, including the closeted Wall Street trader-turned-activist, the high school dropout who found purpose battling pharmaceutical giants in New York, the South African physician who helped establish the first officially recognized buyers' club at the height of the epidemic, and the public relations executive fighting to save his own life for the sake of his young daughter.
Expansive yet richly detailed, this is an insider's account of a pivotal moment in the history of American civil rights. Powerful, heart-wrenching, and finally exhilarating, How to Survive a Plague is destined to become an essential part of the literature of AIDS.
Reviews (6)
Publisher's Weekly Review
Journalist France (Our Fathers) illuminates the origins and progress of the fight against AIDS in this moving mix of memoir and reportage, a companion book to his eponymous Academy Award-nominated 2012 documentary. He covers a revolution in drug development that occurred as patients, for the first time, "joined in the search for their own salvation." France begins in 1981, when a buried New York Times story first identified a "Rare Cancer Seen in 41 Homosexuals," and continues through 1996, when a medical system transformed by activism delivered treatments that rendered AIDS a manageable illness. He juxtaposes his personal involvement with that of a group of self-proclaimed "HIVIPs," key ACT UP leaders from their Treatment + Data Committee whose collective mission was getting the medical establishment to put "drugs into bodies." Eventually, ACT UP became unwieldy and the group spun-off into the Treatment Action Group. France shares with passion and pathos the personal battles of these activists, offering both plaudits and opprobrium to an array of players who constituted the fabric of the community. As important as Randy Shilts's And the Band Played On was in 1987, France's work is a must-read for a new generation of empowered patients, informed medical practitioners, and challenged caregivers-lest history repeat itself. (Dec.) © Copyright PWxyz, LLC. All rights reserved.
Booklist Review
*Starred Review* Safe sex, the rainbow motif, AZT and protease inhibitors, GLAAD, scientific squabbles, Ryan White, CD4s, and the AIDS Memorial Quilt journalist and award-winning film documentarian France brilliantly chronicles AIDS in America during the 1980s and 1990s. His powerful account captures the turbulence and the emotions hope, despair, anger, loss, betrayal, abandonment, terror that gripped those infected and those not. He concludes, Nobody left those years uncorrupted. France focuses on the heroes of the epidemic, primarily AIDS activists whose names are mostly unknown to the general public. Groups (such as the AIDS Coalition to Unleash Power) and individuals alike committed themselves to political advocacy, community outreach (self-help programs and education), fundraising for research, and protest. Their battle wasn't only against the complex, rapidly mutating HIV retrovirus that melted immune systems and destroyed lives (mostly young gay men) but also ignorance, prejudice, and fear. France identifies the foul truths that a microscopic virus had revealed about American culture: politicians who welcomed the plague as proof of God's will, doctors who refused the victims medical care, ministers and often even parents themselves who withheld all but a shiver of grief. American history, memoir, public health, and a call-to-action are perfectly and passionately blended here. Spectacular and soulful.--Miksanek, Tony Copyright 2016 Booklist
New York Review of Books Review
A question has always hung over the reaction of gay men to the plague that terrorized and decimated them in the 1980s and 1990s: Why did they not surrender? They came of age in an era of intense stigma; and AIDS, as many Christian fundamentalists gleefully noted, appeared almost as confirmation that the wages of sin are death. They were surrounded by a culture that emphatically believed that they had asked for this, that mass death was, as National Review put it, "retribution for a repulsive vice." How did they not entirely internalize this? Why, after a brief moment of liberation in the 1970s, did they not crawl back into the closet and die? David France's remarkable book tries to answer that question. It's the prose version of France's Oscar-nominated documentary of the same name - and somehow manages to pack all the emotional power of that film with far more granular detail and narrative force. I doubt any book on this subject will be able to match its access to the men and women who lived and died through the trauma and the personal testimony that, at times, feels so real to someone who witnessed it that I had to put this volume down and catch my breath. Here again are the manifestations of terror: the purple cancerous lesions of Kaposi's sarcoma, fatal when they migrated to your lungs; toxoplasmosis - a brain disease that turned 20-somethings into end-stage Alzheimer's patients; pneumo-cystis carinii, which flooded your lungs until you drowned; cytomegalovirus, which led to blindness, so that young men in AIDS wards were "hugging walls and scraping the air to find their nurses" ; mol-luscum contagiosum, covering the body in "small, barnacle-like papules" that oozed pus; peripheral neuropathy, with which a mere brush of a sheet against your skin felt like an electric shock; and cryptosporidiosis, a parasite that took over people's gastrointestinal tract, slowly starving them to death. It's been over a decade since those Latin nouns were household words in gay life, and reading them still traumatizes. Here's the emergency room at St. Vincent's Hospital in Manhattan in 1984: "Scanning the rows I could see that every third or fourth man had 'the Look' - sunken cheeks, sparse hair, eyes that showed fear, shoulders that bent in pain. One, all spots and bones, balanced painfully on a pillow he'd brought along from home. Another seemed to be dozing; his head was cocked backward onto a companion's arm, and his mouth and eyes were both wide open. The blind, like horses and snakes, don't need to close their eyes to sleep." In the end, hundreds of thousands would die often agonizing deaths, disproportionately taken from a closeted and isolated minority that had, at that point, barely any contact with the broader world, let alone mainstream science or government funding. This was a time when only one funeral home in Manhattan would embalm the dead; when 20 states debated laws to quarantine or control the sick; when Bill Clinton signed a law barring any non-American with H.I.V. from entering the country (the restriction lasted until the end of 2009); when it took two years and almost 600 dead after AIDS was first detected as a unique disease for this newspaper to mention it on its front page; and when President Reagan could publicly throw back his head and laugh at a crude AIDS joke as late as 1986. The resistance began with the strange and unaccounted-for appearance of posters on the walls and windows of New York City: the Nazis' pink triangle inverted on a black background over the words "SILENCE = death." It grew with the small heroism of doctors like the permanently frazzled Joseph Sonnabend in Manhattan and spread slowly to gay activists who were as much at war with one another as with the disease. It took years to gain traction, but the courage of the resistance turned out, over time, to be as persistent as the virus itself. And the merit of this book is that it shows how none of this was inevitable, how it took specific, flawed individuals, of vastly different backgrounds, to help bring this plague to an end in a decade and a half. This is not a hagiography; it's a history and often an unsparing one. There were those, France recalls, who, desperate to maintain the sexual freedom that had given their community meaning, staggered forward in acute denial. There was the despised Larry Kramer, fresh off excoriating gay men's sex lives in his novel "Faggots," who bravely confronted the core problem of transmission, but who also displayed a personal viciousness that derailed the movement as much as galvanized it. There was Anthony Fauci at the National Institutes of Health, who emerges as a key figure in moving the science forward alongside activists, but whose stubborn refusal to permit an off-label prophylactic treatment for pneumonia led to countless premature deaths . Robert Gallo, the most brilliant of all the scientists trying to figure out a new retrovirus, comes across as an intellectual thief and petty egomaniac whose battle with Luc Montagnier for credit for discovering H.I.V. was a distracting sideshow. Charles Ortleb was the visionary editor of New York Native, a small magazine that for a long time was the only real source for news and information about the epidemic. The book charts his descent into conspiracy theories about African swine fever. There are a few genuine heroes: the chain-smoking onetime punk Mark Harrington, who mastered both the science of H.I.V. and the federal bureaucracy so that spectacular protests could be backed by rigorous analyses to force the government to do better; Garance Franke-Ruta, a high school dropout who became one of the key women, along with Iris Long, in mastering treatment options and scientific data; Peter Staley, a closeted Wall Street trader, who found his life's purpose by becoming first a radical activist and then perhaps the most important liaison between the activists and the scientific community; and most movingly, Michael Callen, an effeminate reed of a realist, who refused to be a passive observer of his own death. It was Callen who pioneered the idea of patients' proudly controlling their own destinies and treatments. "We condemn attempts to label us as 'victims,' which implies defeat," he declared as early as 1983, "and we are only occasionally 'patients,' which implies passivity, helplessness and dependence on the care of others. We are People With AIDS." It was an idea that has transformed medicine since. And what France also gets right is the narrative. This was not a long, steady march toward success. It was a contentious, sprawling, roller coaster of dashed hopes and false dawns - a mini-series where major characters suddenly die and plot twists shock. Nine years into the fight against H.I.V., the average survival time had increased from 18 months . . . to 22. As late as 1994, after more than a decade of organization and activism and research, the activists had split between centrists and radicals, and the new class of drugs, protease inhibitors, were failing in early clinical trials. Worse, the deaths climbed in numbers year after year. AIDS was not an early crisis that finally abated; it was a slowly building mass death experience. The year with the most corpses in America was 1995. The darkest night really was just before the dawn. You wonder, of course, how many of those deaths could have been avoided. France makes a strong case for the staggering insouciance of government at all levels, especially in the early years. He's brutal about bureaucratic incompetence and political cowardice. And yet he is also fair enough to show that the science of disabling a dazzlingly resilient retrovirus was fiendishly difficult and that by 1982, 42.6 percent of gay men in San Francisco and 26.8 percent of gay men in New York had already been infected. The community's own adoption of safer sex - and the vital gains activists made in pushing for cures and treatments for various opportunistic infections - made the most difference in preventing further catastrophe. But in the end, science takes time. Some made it over the line before the war ended. Many never made it. Some of us live lives still haunted by that distinction. And what lingers in France's book is the toll that memory took and still takes. These young men both witnessed their friends and lovers dying excruciating deaths, knew that they were next and yet carried on. Some of this was a gut-level human desire to live; some was a means to compensate for the grief that would otherwise overwhelm them; but a lot was simple, indelible courage. This courage didn't just end a plague; it revolutionized medicine and, in turn, became the indispensable moral force that led, as the plague abated, to the greatest civil rights revolution of our time. This is the first and best history of this courage, and a reminder that if gay life and culture flourish for a thousand years people will still say, "This was their finest hour." ? The resistance began with unaccounted-for posters declaring 'SILENCE = DEATH.' Andrew Sullivan is a contributing writer for New York magazine and the author of the memoir "Love Undetectable: Notes on Friendship, Sex and Survival."
Choice Review
This is an extremely detailed and revealing history that ranges from 1978 to 2016 and discusses the activists who pushed for drug development, testing, treatment options, and compassionate care for those suffering from AIDS. It is a sad story that illustrates the international political struggle for recognition, credit, and profit, and demonstrates the complete disregard for minorities; but it also highlights heroic reporting and lobbying from a variety of players of different backgrounds. Political leaders were shockingly silent for years; President Bill Clinton helped facilitate AIDS research on the federal level. France, a prominent author, provides unique information about the dynamic and controversial individuals who raised awareness and funds for the AIDS epidemic; many worked for the Gay Men's Health Crisis, AIDS Coalition to Unleash Power (ACT UP), and the Treatment Action Group (TAG). These stakeholders promoted safe sex education, shared research studies and guidelines for prevention of "opportunistic infections," and experimented with underground medications because US government organizations, like the CDC and the FDA, were slow to respond. The work contains two sections of glossy color photographs, chapter notes, and an abbreviations list. Nonetheless, the work is missing a glossary, which could have been helpful. This work is recommended for its personal insight into patient advocacy. Summing Up: Recommended. All readers. --Ellen R. Paterson, SUNY College at Cortland
Kirkus Review
How scientists and citizens banded together to lift the death sentence from AIDS.It may be hard for anyone not alive at the time to comprehend how devastatingly the AIDS epidemic announced itself in the early 1980s and how resolute the Ronald Reagan government was in doing nothing about it. Emblematic was Jesse Helms, the North Carolina segregationist senator who argued in support of an amendment bearing his name to prohibit research and treatment funding, which he said would promote, encourage, or condone homosexual activities. Other bills introduced at the time included a suite that, among other things, sought to bar people with AIDS from practicing in the health care industry, even as X-ray technicians. Matters in the government did not begin to turn around, writes documentarian/journalist France (Our Fathers: The Secret Life of the Catholic Church in an Age of Scandal, 2004), until the Democrats took the White House, following a testy exchange with activists in which candidate Bill Clinton cast himself as a better friend to people with AIDS than people with AIDS themselves. It was those activists and their unflagging efforts, France documents, that kept the matter of AIDS and funding for its treatment in the public eye and on the political table, and while the long battle exhausted manyas France writes, there was a second epidemic of drug use, attributable to the self-medication of the traumatizedit was also extraordinarily effective in rallying both public and scientific/medical support. The result was a transformation of the diseasenot just a physical one, with medications developed and made available that could regenerate a persons immune system, but also a social one, with much of the stigma lifted from the ill. All this, as the author notes in closing, was accomplished by angry, vocal people out in the streetsa very good lesson for activists engaged in other issues today. A lucid, urgent updating of Randy Shilts And the Band Played On (1987) and a fine work of social history. Copyright Kirkus Reviews, used with permission.
Library Journal Review
Prepare to have your heart buoyed and broken in this riveting account of the response to the AIDS epidemic that's as educational as it is difficult to put down. Based on thorough research and the author's own experience as a gay man and a reporter in New York when the disease emerged, this book presents the fear, hope, and civil rights struggles of the 1980s and 1990s. In unflinching, brutally honest detail, France traces the lives of the people behind the constellations of aid and advocacy movements and presents their struggles in a way that will have readers stirred by each diagnosis, cheering the efforts to find a cure, and growing frustrated at the political establishments that ignored the terrible tragedy as it unfolded. Readers will learn of the medical efforts, the clashes of personalities within groups such as the Gay Men's Health Crisis, and the people who raised awareness of a disease that would claim hundreds of thousands of lives. -VERDICT This highly engaging account is a must-read for anyone interested in epidemiology, civil rights, gay rights, public health, and American history. [See Prepub Alert, 5/23/16; see "Editors' Fall Picks," p. 30.]-Susanne Caro, Univ. of Montana Lib., Missoula © Copyright 2016. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.
Excerpts
Excerpts
I didn´t have serious concerns for my own health. What I worried about was Brian Gougeon. I checked on him frequently. Neither of us brought up AIDS directly or his health specifically, though I sensed he resented my calls as reminders of that scare. Like characters in a Saramago novel, we talked about anything else. The news was generally good. He resumed the physically taxing work of tending the vast vertical jungle of ficus trees and philodendron bushes that filled high-rises throughout the city. He confided that the East Village gallery scene had been cool to his work, but reported the good news that he was back with his college boyfriend, and had never been happier. I don't want to overstate our sense of impending doom. The truth was, the storm clouds massed near the horizon, not overhead. Unless you were personally admitted into what Susan Sontag called "the kingdom of the sick," it was not hard to put the growing epidemic out of mind. It took two years and almost six hundred dead before The New York Times put a story on the front page. Except in passing, few television news programs made any mention. The progressive Village Voice ran a feature that called the danger overblown, and was nearly silent otherwise. You would have to read the Native for news on AIDS. Brian Gougeon avoided the newspapers. I know he saw the first major report in prime time, since we watched it together on my small black-and-white TV. The ABC newsman Geraldo Rivera, flamboyant and hyperbolic though he was, broke the near-complete media blackout with the first network broadcast. "It is the most frightening medical mystery of our time," Rivera said, leaning toward the camera. "There is an epidemic loose in the land, a so-far incurable disease which kills its victims in stages." And then appeared the face of a man in grotesque medical distress-- the first plague-sickened man either Brian or I had laid eyes on. He was a freelance lighting designer named Ken Ramsauer, age twenty-seven. In an old photograph, he looked as polished and angular as a shampoo model. The difference between then and now was shocking. His head appeared swollen nearly to the brink of popping; his eyes vanished behind swollen muffins of flesh; oblong purple marks covered his skin. Confined to a wheelchair, he hung his head weakly. A friend handed him a glass of water, which was almost too heavy for his trembling arms. "I thought I was a pretty good-looking guy," he said. "And now, I actually see myself fading away." Ramsauer said he had just returned from the hospital, where they offered him neither medicine nor hope, and least of all pity. "One night I heard two, I believe, nurse's aides--not the actual nurses--standing outside my door sort of laughing," he said. "What did they say exactly?" Rivera asked. He blinked his slivered eyes and looked down at the water glass in his scarlet fists, remembering: "I wonder how long the faggot in 208 is going to last." Four days later, I opened the paper to discover that Ramsauer was dead. When I read that a public memorial was planned at the Naumburg Bandshell in Central Park, I asked Brian to go with me. But he was taking a different strategy. "I'm just staying out of the whole thing," he said, meaning AIDS. "Worrying isn't good for your health. And it does nasty things to your art." Instead I went with another friend, a graphic designer named Ian Horst. That evening was unusually still and hot. As we approached the service from the south, beneath a vaulted canopy of American elms and a row of towering statuary, a macabre scene confronted us. The plaza was crowded with 1,500 mourners cupping candles against the darkening sky. As our eyes landed on one young man after another, it became obvious that many of them were seriously ill. A dozen men were in wheelchairs, so wasted they looked like caricatures of starvation. I watched one young man twist in pain that was caused, apparently, by the barest gusts of wind around us. In New York there were just 722 cases reported, half the nation's total. It seemed they were all at the band shell that sweltering evening. My friend's mouth hung open. "It looks like a horror flick," he said. I was speechless. We had found the plague. From there, it was an avalanche. A Friday or two later, a colleague from work ran out the door for a weekend of social commitments. He looked as healthy as a soap opera star, which he aspired to be. We never saw him again. I heard from a mutual friend that he was found dead by neighbors the following week, shrunken and hollow, in a room washed in his own feces. In whispers, we wondered if he had taken his own life--and debated whether it would be more stoic to face the disease or commit suicide. As the summer of 1983 opened, The New York Times finally started covering the plague, but often in bizarre ways. In May, the paper revealed that prisoners on Rikers Island had declared a hunger strike, unwilling to risk using plates or utensils after an inmate dropped dead from AIDS, and a week later reported on a sanitation worker who might have caught AIDS from handling trash. Readers were left more frightened than ever. We read reports of parents who would not go near their infected sons, not even to bid farewell. Many hospital workers felt the same way, abandoning AIDS-sick patients in diarrhea-soaked sheets out of fear and prejudice. Dr. Robert Gallo, head of the Laboratory of Tumor and Cell Biology at the National Cancer Institute, a branch of the National Institutes of Health, was disgusted when he first heard the sick joke that pancakes were the only food fit for an AIDS patient, because they could fit under the door. In this environment, even doctors felt justified to exempt AIDS sufferers from the Hippocratic Oath--in one survey, over half admitted they would refuse them medical attention if given a choice. The patients' indignities did not end with death. Across New York, the global epicenter of this outbreak, almost every undertaker refused to work with the corpses. Even in the ancient plagues of Europe there were individuals tasked with collecting remains. In The Betrothed, the novelist Alessandro Manzoni called them monatti, those unflappable Samaritans who, for profit or otherwise, braved the "rags and corrupted bandages, infected straw, or clothes, or sheets" to convey the lifeless flesh to the ditches. In New York at the dawn of AIDS, only Redden's Funeral Home, operating continuously since the Spanish influenza epidemic of 1918-19, would handle the embalming. Yet its owners begged the grateful mourners to keep their kindnesses a secret for fear of boycotts by the aging Catholic community in Greenwich Village and Chelsea, the bulk of their business. Excerpted from How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS by David France All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.
