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How to Survive a Plague: The Inside Story of How Citizens and Science Tamed AIDS
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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' 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.
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Audible Audiobook
Listening Length: 24 hours and 14 minutes
Program Type: Audiobook
Version: Unabridged
Publisher: Random House Audio
Audible.com Release Date: November 29, 2016
Whispersync for Voice: Ready
Language: English, English
ASIN: B01N8Q7LB8
Amazon Best Sellers Rank:
This is an astonishing book. Including the glossary and notes, it tops 600 pages. I am not a fast reader, and I read it in a week. I should say at the outset that I had a personal interest in the material, having lost a partner to AIDS in Boston in 1984 and many friends in the subsequent years. This book has frequently been compared to Randy Shilts' "And the Band Played On" but is more tightly focussed on the formation of ACT UP and its impact on the ultimate development of life-saving drugs. Despite a staggering amount of detail, I was never bored and rarely confused, a testament to Mr. France's meticulous presentation of material. While it often reads as a chronicle of failures, both by government officials and pharmaceutical companies, the author never lets the reader move away from a connection to real people doing deeply committed work under the worst possible circumstances. I cared about them personally and ached for their suffering as year after year passed with only AZT, a drug toxic for most patients and with terrible side effects, to turn to. I hope that there is a special place in Hell for Burroughs-Wellcome executives, Ronald Reagan, Archbishop John O'Conner and Senator Jesse Helms, people who intentionally held back progress on finding a cure for AIDS for their own financial benefit or out of some perverted religious belief.I bought a copy of the documentary of the same name last year and was deeply moved. There is a visceral difference between reading about Peter Staley scaling the entrance to buildings at the FDA and the NIH and seeing a video taken of the event. I watched the dvd again after finishing the book and felt devastated all over again. Reading the book had deepened my understanding of what happened and my love for the people involved, and seeing them on film, so many of whom died, broke my heart. It's worth having your heart broken to read this book.
Just finished this book. It was so good. I've read "and the band played on" and loved it but this was much better researched especially because it was done with 20/20 hindsight and not when AIDS was still killing tens of thousands of people per year.The book was mostly focused on what happened in NYC and Act-up (Vs. SF based.) What ACT UP! did was truly astounding. They changed the way drug trials were done, the speed of them, how people were found for them, got companies to do parallel studies without placebos for those who didn't meet the stiff criteria of official studies, and most importantly, broke down the secretive doors of pharmaceutical companies and got them to involve People with AIDS in all sort of ways, to the benefit of the companies and the people who needed the drugs.It's hard to believe what it was like back then PWA's when it was basically a death sentence for everyone.... Hard to fathom what they went through-the utter despair when dozens and dozens of friends and lovers would die a year. And the way gay people were treated and discriminated against-it is so unbelievable. And the horrible way Reagan and the Republicans (and to a large extent, Democrats too) in congress ignore AIDS for 9 years because they disliked gayness and thought that AIDS was god's retribution.It was an enthralling and horrifying book. Very well researched, a little slow in the beginning but it really gets interesting about 1/3 of the way through.
David France has been involved in the New York gay scene since, by coincidence, almost precisely the time that the AIDS epidemic was first noted in the press in July 1981. So, aside from the previous decade following the 1969 Stonewall Riots, as a journalist he saw the plague and the gay community’s devastation by it and fight against it first hand. In 2012, he wrote, produced and directed a film documentary by the same name that was so outstanding it was nominated for an Academy Award.For me, that documentary remains, even since this book, uniquely incredible and a hard act to follow. It is a brilliantly compelling and moving account, with a lot of archival footage, of the ACT UP (AIDS Coalition to Unleash Power) movement composed of mostly AIDS sufferers from its March 1987 founding. By that point, tens of thousands of mostly homosexual men in the U.S. had already died horrible deaths, everyone infected was doomed to the same fate, and there was no effective cure or treatment in sight.But ACT UP’s highly publicized civil disobedience actions at the White House gates, the National Institutes of Health and elsewhere and its success in gaining inclusion on official boards evaluating experimental treatment options, is widely credited, including by the nation’s foremost public health official Dr. Anthony Fauci, with playing a critical and indispensable role the discovery of an effective treatment by 1996.In late 1996 when, having been an early post-Stonewall gay activist myself, I learned that Time magazine had named Dr. David Ho, a long-time AIDS researcher, its ‘Person of the Year,’ I breathed a deeper sigh of relief than for any time in the previous 15 years. It was an affirmation that, indeed, a life-saving treatment for the hideous AIDS had been found. Dr. Ho is not even mentioned in France’s documentary or book because to France’s mind, and undoubtedly in reality, it was the ACT UP activists and the researchers willing to work with and learn from them who finally came up with the right combination of protease inhibitor treatments that produced an immediately efficacious and enduring life-saving treatment.From France’s work it is shown how without the input of a faction of ACT UP that formed itself as the Treatment Action Group (TAG) to work on technical research issues the existing efforts whether by the National Institutes of Health or private pharmaceutical companies were fragmented and out of touch with one another.Despite annual world conferences on AIDS research, “there was no global strategy,†so TAG members had to devise a “National AIDS Treatment Agenda†to put the disparate research efforts into one comprehensive strategy.It was in 1995, after the first discovery of the “protease inhibitor†that an “activist- proposed drug design†combining therapies was introduced, and almost immediately began to work wonders. Within 30 days, very ill patients became symptom free, Fauci said, calling it “a Lazarus effect.â€The treatment was provided to hundreds of thousands of AIDS patients in the U.S. and then overseas, especially in Africa, and began saving literally millions of lives.As with his film documentary, France does an excellent job of telling the story in his book, including with some key information the documentary didn’t include, such as exactly how ACT UP came to be formed in 1987. Earlier activist split offs from existing gay organizations, like the Lavender Hill Mob and the Swift and Terrible Retribution Committee, had begun “zaps,†spontaneous street theater and office takeover demonstrations, following a solemn but massive, 200,000-strong June 1986 Gay Pride parade that was greeted with newspaper headlines reporting that a Supreme Court decision had ruled 5-4 to uphold a Georgia gay sex ban.That December, an anonymous effort pasted lower Manhattan with three thousand black posters with an inverted pink triangle and the words “Silence = Death.â€Larry Kramer, having been on a hiatus after the highly-successful production of his hard-hitting AIDS-themed play, “The Normal Heart,†decided it was time to spark something new.Ah yes, Larry Kramer! This man had enraged the official gay community in 1978 with the publication of his best selling novel, Faggots, because it exposed the depths of sexual promiscuity and depravity that much of the New York and other urban gay scenes had descended to by then. He was subjected to a massive display of denial and angry insistence on keeping such “secrets†away from the outside world. The leadership, such as it was, of the so-called gay movement then was composed mostly of gay sex club, bathhouse and bar owners, many with ties to the Mob, in an alliance with the sex-addicted often-nightly patrons of their establishments insisting that gay liberation was synonymous with massive amounts of anonymous sex.Kramer was like an Old Testament prophet sounding an alarm. Many never forgave him from that time forward, but the evidence is clear from the wider corpus of his work that he was motivated not out of hate, anger or personal repression, but out of a deep love and compassion for gay people. (It is relevant that science learned just this year that the HIV virus that causes AIDS was present in the blood of many gay men collected in the early 1970s, at the time the “sexual revolution†first broke out. The HIV did not enter the picture in the mid-1970s, as previously thought, by introduction to the U.S. probably from Africa. It had been here much earlier, and sexually-active gay men were playing Russian roulette since 1970 not only with all the other STDs of the day, but unbeknownst to them, also a virus that would wind up killing at least 600,000 of them.)This was shown when the first public reports of a gay “cancer†was first reported in July 1981. It was Kramer to leaped into action to organize a grass roots political response, the formation of the Gay Men’s Health Crisis. But in a subculture swimming with petty jealousies and fear, Kramer’s insistence on strident action was too much, and he became marginalized.Still, that only led to his authorship and production of a quasi-autobiographical “The Normal Heart,†the powerful play that exposed the plight of sick and dying gay men, and a pathetic lack of government response, to a much wider audience.Then, in 1987, when the effort against AIDS was going absolutely nowhere, it was Kramer, again, who provided the spark for the formation of ACT UP that ultimately got the gay community activated to get the results it needed.Due to a last-minute cancellation, Kramer got to fill the program for the March 1987 meeting of a monthly speaker series at the Gay and Lesbian Community Center. This was the opportunity he needed, and he didn’t miss it. He organized an array of activists to show up. “I’m going to try to organize a civil disobedience group,†Kramer said to a friend, as France quoted him. “I’m putting friends in the audience as plants. When I call for people to help me organize a demonstration, I need you to stand up and join in and rabble rouse.â€Some 250 gay men showed up. As France wrote, “Kramer’s savage oratory power, honed over his years of screed writing, swelled as he read his prepared remarks. ‘If my speech tonight doesn’t scare the s*** out of you, we’re in trouble,’ he told them. ‘I sometimes think we have a death wish. I think we must want to die. I have never been able to understand why we have sat back and let ourselves literally be knocked off man by man without fighting back. I have heard of denial, but this is more than denial – it is a death wish!â€France wrote that the presentation morphed the group into a “Capraesque town hall meeting†full of energy and animated talk. He wrote, “The fuse caught fire…Kramer’s strategy had worked. Something brand new was afoot.â€Still, people accused Kramer of wanting to become famous for this effort. It is a sad thing, but a reality that people who can only think in terms of such things, or in terms of hate or vengefulness, can only assign similar motives to others.To an observer like me, it is clear that everything Kramer did, including his stridency, was done more out of love than anything else. The world still won’t acknowledge that, in the context of how bad the AIDS plague was, he was right from the start and almost all the others were wrong.France is ambiguous about Kramer in his book. On the one hand, he wrote in his introduction, “No individual was more responsible for galvanizing the AIDS movement than Kramer. His plays, books and essays over the years pushed the gay community to demand that the world take notice.â€But in another place he claimed that Kramer did almost more harm than good, although not with the viciousness of gay blogger Andrew Sullivan in his review of France’s book in the New York Times Book Review of Nov. 27. Sullivan wrote, “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.â€In his book, France underscored his ambiguity about Kramer by quoting a gay leader who wrote a highly critical letter to Kramer, saying, “You should beg the forgiveness of every gay man who you have caused pain,†but then credited Kramer “with raising the visibility of the epidemic like no one else by working to become, ‘like Goethe, the personification of an era much linked with sadness and death.’â€The most serious shortcoming of France’s work is in his effort at applying pop psychology to Kramer and others in the struggle, saying Kramer owed his stridency to a “stern father,†and his tendency “to see the world as a battle between aloof parent figures and rejected children.â€How about the fact that an entire generation of gay men were being wiped out by the most heinous of incurable diseases being his motivator? The pop psychology is just so much BS and really a terrible take-down of Kramer’s motives.There is a valid point to the charge of “tone policing†that feminists are increasingly talk about. It is a silencing tactic that protects privilege and silences people who are hurting, often targeting women. (In Keith Bybee’s book, How Civility Works, he notes that feminists, Black Lives Matter protesters, and anti-war protesters have been told to “calm down and try to be more polite.†He argues that tone policing is a means to deflect attention from injustice and relocate the problem in the style of the complaint, rather than to address the complaint.â€) Kramer continues to be a huge target of this kind of “tone policing.â€Surely, the heroic role of many in the ACT UP struggle cannot be ignored, the work of Peter Staley, Bob Rafsky, Mike Harrington, Greg Consalves, Spencer Cox, Jim Eigo, Ann Northrup, Iris Long, David Barr, Derek Link, Gregg Bordowitz, Bill Bahlman, and of course, their predecessors like Joe Sonnabend, Michael Callen, Richard Berkowitz, Mathilda Krim and many others.Something that France’s book does not include is the added level of pain above the medical and physical pain of AIDS victims, worst of all being the brutal and complete rejection of young AIDS victims by their own parents and families throughout that period.France tells the stories of a couple AIDS victims who were being cared for by their parents as they expired. But there were many, many more cases of total rejection of AIDS victims by their own parents, and left to die with an emptiness in their hearts even more painful than their physical illness.Even today, the rejection of young gay men and women by their families is heartbreaking, with an estimated full 25 percent of homeless persons being young gays.The story of ACT UP is not so much about glorified heroism as about a resolve to live. Staley said when he and others were about to toss the ashes of loved ones over the White House fence in 1992 that, “Some are making something beautiful out of the epidemic, but there’s nothing beautiful about a box of ashes and bone chips. There’s no beauty in that.â€When France wrote of the real breakthrough being found in 1996, he confessed, “It had been many years since I had cried – maybe I hadn’t shed a tear since Doug’s memorial service – but now tears rolled down my cheeks. When I caught my breath again, it came in sobs. Was it over? Was the long nightmare passed?â€â€œTears filled Spencer Cox’s eyes,†he wrote. “’We did it,’ he whispered to the person sitting beside him. ‘We did it. We’re going to live.’†I knew the feeling, as every gay man in the nation must have that day.Final point, I suggest that France’s work be examined from the standpoint of what he doesn’t say about how a new plague might be avoided.
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