This month, 30 years ago, I wrote a draft of what was to become soon afterwards the first comprehensive human rights charter for people with HIV. It was born out of an urgency to stop the global drift by governments to panic and repression. In March 1987, a handful of us founded the UK Aids Vigil Organisation to campaign for the protections set out in the charter, lobby the World Health Ministers Summit in London and host a parallel HIV human rights conference, one of the first such conferences held anywhere.
Our modest efforts were a mere footnote to a much bigger and more important story, which is told by David France in How To Survive a Plague. This is a remarkable book about a remarkable achievement: how an unlikely alliance of US activists, patients, doctors and scientists tamed one of the greatest threats to public health in the past 100 years, saving millions of lives. It is a tale of triumph over obstructive government, greedy drug companies and homophobic political and religious leaders; transforming a death sentence into a manageable disease — all within the timeframe of a mere decade and a half. And it was made possible by people with HIV and their LGBT activist allies who dared to question medical, scientific, pharmaceutical and government authority. This is the heroic inside story of how we, thanks to them, survived HIV.
Outside Africa, the US was the epicentre of HIV, and it is about the US experience that this book is written. It documents one of the most effective and inspiring campaigns of the last 50 years — which got results and prevented a far longer and more deadly pandemic. As a result, few westerners die of HIV today. However, in poorer counties, anti-HIV treatments are often not available. Worldwide, over one million people are still dying needlessly of HIV every year.
From the outset, this book makes the point that HIV was a public health issue that was made political by the homophobia of US political and religious leaders, from President Reagan to Senator Jesse Helms, Revd Jerry Falwell and Cardinal O’Connor. For the first few years, as thousands of mostly young gay men were dying, Reagan refused to even say the word Aids, let alone fund action to save lives. By default, he allowed gay men to die in their thousands. Supposedly Christian clergy stirred the pot with claims that Aids was divine retribution for the sin of homosexuality.
Much of the progress in the fight against HIV was spearheaded by gay HIV-positive activists via the direct action group Act Up (the Aids Coalition to Unleash Power), with its mantra ‘Silence = death’. There were other key players too: Gay Men’s Health Crisis, Treatment Action Group and hundreds of HIV organisations that sprang up all over the US in response to official indifference.
The focus of these predominantly young campaigners — some barely out of their teens — was, variously, to protest against government and drug company failings, push for public education about HIV and improve funding for scientific research, promote the innovative idea of safer sex to cut infection rates,challenge the demonisation and scapegoating of gay men and demand faster, better, cheaper HIV treatments.
Never before in history have people with a life-threatening condition been so prominent in driving a scientific, medical and political transformation. Their dual tactics of working both against the system and inside it paid dividends, and offer a model for successful social change that others could usefully learn from.
Imaginative, daring and often necessarily provocative, Act Up protests were a call to arms. They highlighted official culpability through mass civil disobedience at the Food and Drug Administration and National Institutes of Health over delayed drug releases; at St Patrick’s Cathedral in New York against the Catholic church’s opposition to condom protection; and by wrapping the home of Senator Helms in a giant condom in protest at his scuppering of HIV funding.
‘Drugs into bodies’ became the activist battle cry against government and pharmaceutical bureaucracies that demanded prolonged drug research and trials. And they succeeded. The Food and Drug Administration was forced to relax its protocols for new drug approvals, speeding access to life-saving treatments. This revolution in drug trialling is now the template for dealing with emerging deadly diseases.
What is astonishing is that none of the lead activists began with any medical knowledge or experience. They read scientific and medical papers voraciously and became self-taught experts in immunology. Lay people rivalled scientists. People with HIV educated medical staff, turning upside down the traditional active-doctor, passive-patient relationship.
However, it wasn’t a simple series of triumphs, as David France reveals. Great hope was held out for the drug AZT. Desperate for some drug — any drug — that might save lives, activists pushed for its availability. Sadly, its efficacy was illusory and its toxicity alarming.
I have only two caveats about this stupendous volume. First, it is American-centric, not giving sufficient attention to the contribution of non-US doctors, scientists and activists. Second, it neglects to expose the tens of millions of dollars wasted on futile lab experiments with chimpanzees, macaques, dogs, cats and rats. These were always less likely to produce useful results, given the different physiology of humans and other species. In fact, animal research may have actively harmed the development of HIV treatments. This appears to have happened at the drug giant Merck in 1989, when they abandoned the first promising protease inhibitor because it proved to be fatal to non-human animals. However, it may have been safe for humans, as later versions turned out to be. For several more years, until 1995 when other protease inhibitors became available, thousands of people with HIV continued to die, perhaps unnecessarily, as in the case of my friend the film-maker Derek Jarman. Animal-based research was bad science and the one orthodoxy that most radical activists, doctors and scientists failed to question.