My generation are some of the first to grow up with HIV infection as a treatable condition. We only know a world where combination HAART can give those newly infected an undetectable viral load and a nearly normal lifespan, so we largely lack the fear and stigma which surrounded AIDS from its beginning. It is easy for us to think, yes, HIV/AIDS was and is tragic, but the modern treatments are as good as a cure, so it’s no real problem now. But such complacency is wrong.
David France opens How to Survive a Plague with the funeral of Spencer Cox, a member of the AIDS Coalition to Unleash Power (ACT UP) who suggested that HIV researchers test the drug Crixivan in large simple trials to produce data fast and get the drug on the market. This scene is not at the height of the plague but in 2013. The drug combinations he and many others were saved by in 1996 became ineffective, as his HIV strain mutated to snake past all available HIV drugs. What it is vital for those born after the plague years to know is that treatability does not entail dismissal. And France’s book details the struggle and stubbornness, as well as plenty of setbacks and self-aggrandizement, it took to get to where AIDS is today.
France runs a history of the science of HIV/AIDS alongside and intertwining with the history of activism. His writing is less pacy when writing on the research compared to when writing about the high drama of drug trials, but forgivable given his background. France is an AIDS activism insider. He is among the crowds of plague survivors at Cox’s funeral and is connected to the story’s main players. Though the scope and tone of the book somewhat resembles Siddhartha Mukherjee’s “Big Book of Cancer”, it does not attempt to magisterial objectivity. This means the book is How to Survive a Plague (as a gay male activist and journalist in New York, 1981-96). At the books heart is a small world of New York activists. San Francisco is a distant oasis separated by the dry sands of prejudice, to say nothing of the rest of the world. But narrowness is key to the intimacy France creates by following key figures like characters in a novel through what would otherwise be a fog of names, dates and acronymns.
Some of his stars include the musician Michael Callen, Richard Berkowitz and their physician Joseph Sonnabend, who together authored a 1982 book advising on safe sex. There is Larry Kramer, the mercurial playwright crucial in ACT UP’s founding and Peter Staley, the ex-Wall Street trader who protested against the high price of the drug AZT at the New York Stock Exchange. The book is rich in the tales of these and others fighting have AIDS taken seriously by scientists and law-makers.
What was new about the AIDS epidemic was how activists engaged with research. Theatre major and high school dropouts were reading the scientific literature on HIV/AIDS and presenting their own illnesses at conferences so they could challenge drug companies and government officials on funding and clinical trials. ACT UP’s famous mantra was “drugs into bodies”, they intended to get as many people on the best drugs quickly. This was strikingly at odds with a government and medical establishment characterized by it’s neglect, greed and indifference.
Successes finally emerged when researchers and activists worked together. AIDS activists suggested the parallel track method of clinical trials, which generated good data from a carefully controlled clinical trial, but those who aren’t the ‘perfect patient’ trials need can get the drugs. The drug Crixivan appeared promising in the early 1990s, so was rapid rushed from test tube to human trials via the substitution of animal trials for a ‘big chimp trial’, a scientist heroically took the drug themselves. But the manufacturer Merck faced was slow in producing enough of the drug for the Phase II trials, so driven by love and despair activist Tom Blout on Merck’s community advisory board was getting the drug bootlegged for lover Jim Straley, who died after his supply ran out.
Such a personal history of an emotive topic runs the risk of whiggish hagiography, but France’s acknowledgement of the failures and successes of activist groups keeps it balanced. The pitfalls of activist-driven medicine as shown in the case of AZT. Pressure from activists to value hast came at the cost of efficacy, when the good outcomes early in the Phase II clinical trial of the drug meant the trial was stopped prematurely and the drug approved in record time. But AZT was ultimately found to have no effect on lifespan, not captured in the short trial. But the scientists have plenty of flaws as well. There was a narrow focus by the NIH on trials of drugs which targeted the HIV virus, at the expense of developing treatment for the opportunistic infections which actually kill AIDS patients. But by the end of the plague, activists and scientists largely collaborated to temper each others’ faults. There is comedy in some of ACT UP’s stunts, such as the unfurling of a giant condom over the house of anti-AIDS research Senator Jesse Helms. But throughout the book runs a sense of the great, howling injustice of the willful ignorance of the AIDS crisis by those in power.
The book ends in 1996, the end of the plague years, the survivors dissipated. But the plague still shuffles on, wreaking havoc for those lacking access to treatment and bruised by previous treatments. AIDS casts a long shadow over the LGBTQ community, but the grief and anger spurred activists into becoming more vocal in demanding their own humanity be respected. The consequences of their actions reverberate in every pride march and every newly-out teenager today.