on November 29th 2016
Genres: History, Nonfiction
Published by Knopf
Setting: New York
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.
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.
Think back to a time not that long ago when:
- The New York Times banned the use of the words gay and lesbian in the newspaper
- Hospitals and funeral homes turned away people they suspected were infected with AIDS
- Weekly meetings of gay activists included a list of names of people who had been at the last meeting and who had died since
This book tells the story of ACT UP. This was a group founded to pressure scientists, politicians, and drug companies to increase the number of drugs being investigated for possible treatment for AIDS.
One of the main problems in the beginning, besides a lack of funding, was government scientists’ insistence on doing double-blind controlled studies. They weren’t wrong from a science perspective. These trials have patients in two groups. One group gets the treatment and the other gets a placebo. Neither the patient or the doctor knows who is in each group. The problem was that people with AIDS were dying so quickly that being in a placebo group for a few months, especially if you were required to go off all other medication, was basically a death sentence. There are stories of trials in this book where all the placebo group died in the course of the trial.
Without these studies to cover them from liability no one was willing to go on record and recommend using drugs off label. Doctors in the field, especially if they didn’t handle many AIDS cases, then didn’t know that giving a common antibiotic decreased the chances of patients dying of opportunistic pneumonia, for example. This was the leading cause of death in AIDS patients. It was almost entirely preventable and no one would officially say so. ACT UP worked to streamline and humanize the drug trials.
They were able to:
- Stop people having to go off all other medications (like antibiotics to prevent pneumonia) to be in the trial
- Allow drugs to be tested on women and people of color
- Allow a parallel track where sick people who couldn’t wait for formal drug approval could try the drugs in the trial at their own risk and data could be collected about their experiences
- Get drug companies to stop increasing prices of the drugs as demand went up.
I don’t remember hearing anything good about ACT UP at the time. I only knew of them from news coverage that was always negative because of their dramatic demonstrations. The first time I ever heard of ACT UP in a positive light was when I started watching Gay USA on TV. One of the hosts talked about being in ACT UP. Her name is Ann Northrup and she is in the movie a lot more than in the book. The associate producer of Gay USA is named Bill Bahlman. I know that because he does the intro to the podcast that I listen to now. What I didn’t know is what all he did during the early days of the AIDS epidemic to reach lawmakers.
This book is a long, slow read. It is very densely packed with names and actions and committee meetings. The author was a young, gay journalist reporting on AIDS in New York at the time. It is very focused on New York. Occasionally it talks about San Francisco but you could get the sense that except for occasional mentions of Africa, that AIDS was only a New York/California problem. It is also focused primarily on white gay men. This was one of the criticisms of the drug trials. They wouldn’t enroll women, people of color, or drug users. Although ACT UP seemed to give equal representation to women, those women aren’t discussed much in the book with a few exceptions.
When I was almost finished with the book I watched the documentary that the book came out of. It is also called How To Survive a Plague and is available on Netflix.
I don’t think that I would have understood the documentary as much if I didn’t already know what they were talking about from the book. Especially at the beginning of the documentary, there wasn’t a lot of context given for the video being shown. I understood where they were and what they were protesting from reading the book. It was interesting for me to see what I had read about but I don’t think the documentary did a good job of really explaining all the issues that they were fighting for.
This book is a must read for anyone interested in the history of medicine or the gay rights movement in the United States. It is heartbreaking and inspirational. This is civil action on so many levels. It is interesting to look back now and see how far the United States has come in just the last 30 years – even when we feel like there is so much that needs to be better.