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David France is the author of How to Survive a Plague. (Ken Schles)
David France is the author of How to Survive a Plague. (Ken Schles)

How AIDS activists helped change the course of science Add to ...

Scientists have gotten credit for muzzling AIDS, and rightly so. Thanks to breakthroughs in the mid-1990s, people with HIV have a chance of living a normal life as long as they have access to anti-retroviral drugs.

But lest we forget, in the early days of the epidemic, researchers showed little interest in one of the most deadly infectious diseases since the bubonic plague. The majority of doctors refused to treat people showing symptoms of AIDS. Governments turned a blind eye even as thousands of North Americans died.

It took legions of patients – many of them at death’s door – to persuade public officials and the scientific community to take action on a disease that would eventually kill double the number of Americans who died in the Vietnam War. Prejudice against gay men was largely responsible for the unnecessarily high death toll, writes journalist David France, author of How to Survive a Plague, a book that expands on his 2012 documentary film of the same name.

The 640-page volume is both a painstaking history of AIDS in America and an ode to the ingenuity and courage of the activists who helped change the tide on HIV and, arguably, the course of human history. But it also takes readers into the turf wars between rival scientists and the lesser-known battles waged in the lab against a microscopic agent of destruction that ultimately claimed the lives of 40 million men, women and children around the globe.

Speaking on the phone from New York, France explains how AIDS activists helped lay the groundwork for the kind of scientific research and emergency response we rely on today to fight Ebola, MERS, Zika, and the epidemics to come.

Your film on AIDS activism has won awards and a wide audience, including on Netflix. Why write a book?

Well, the film covers only a very small corner of activism and focused on a handful of people. I wanted people to know that much of the way we think of science and medicine – and activism itself – today was given to us in those years of plague. It was a lasting contribution to humanity.

AIDS sufferers were treated like lepers, mainly because so many were gay. How did they get the scientific community’s attention?

They recognized from the start that if they were going to have any hope of a collaborative relationship with science and medicine and government, they had to first help people think of them as human.

What was Rock Hudson’s role?

Rock Hudson’s death [in 1985] was the watershed for the first federal funding for AIDS – and this was five years into what was clearly a fatal infectious disease. The general public knew how to feel emotions for Rock Hudson. They did not know how to feel emotions for the rest of us. It helped that he was a good friend of the president [Ronald Reagan] and his wife.

How did activists end up working with scientists to set research priorities and design better drug trials?

The International AIDS Conference in Montreal [in 1989] was fascinating because everyone wanted to dismiss the activists as just being radical, or embittered by death. It took some really open minds to start listening to what they had to say and realizing how, in fact, the science was being conducted in a way that was ineffective and the policies were working against the research. The activists were targets of that research, so they knew how the research was failing.

Why were the early drug trials, dubbed ‘death trials,’ so ineffective?

Everyone knew what the course of the disease was like on placebo. So patients in a study would test the [experimental] drug through independent labs to discover whether they were on placebo.

If so, they would stop taking it. Often, patients on the actual drug would share their drugs with patients who were on placebo. The research was falling apart, and without a placebo arm, it was taking scientists forever to come up with reliable data.

The patients started to argue that the natural course of the disease could be used as the placebo arm. By adding a parallel track [an additional study arm in which anyone could take the drug], you wouldn’t have people gaming the system.

What were the greatest scientific achievements in the plague years?

Before AIDS, nobody had ever really conquered a virus, much less a retrovirus [a virus composed of RNA that melds its genetic material with the DNA of a host cell in order to replicate). The idea that a retrovirus could exist in humans was brand new, and it took visionaries to imagine the ability to wrestle a virus into submission.

Also, we saw breakthroughs in Kaposi’s sarcoma, the HIV-related cancer, with the discovery that some cancers are virally caused. It really opened up the entire field of virology.

What about advances in pharmacology?

In the past, compounds that chemists had created for one reason or another would be taken off shelves and then applied to the disease at hand – it was trial and error. AZT was a drug that had been compounded decades earlier. When that proved ineffective in the epidemic, pharmacologists developed a new approach. They found that one of the mechanisms for how HIV replicated was an enzyme called protease, which worked like scissors that would clip into these chains of proteins that would then go on to form a new virus.

So they designed a very complex molecule that would fit into protease like a wrench in a gear and render it incapable of cutting these protein strips. It opened up a whole new era of drug research. It’s called rational design. Once they did that, they had a solution to HIV replication. Those drugs are still the essential cornerstone of HIV treatments.

Are the corporate and bureaucratic structures that stymied early AIDS research still in place?

I think what AIDS activism left behind was a much more nimble research machine, and a much more humane one. Now, every major pharmaceutical company in the world has community advisory boards where the recipients of the drugs, the people who rely on the drugs, are representing themselves. A couple of years ago, we saw a great co-ordinated response to the Ebola scare. We saw the presence of drug researchers as activists in a way that we first saw in AIDS. In a way, the book is a kind of blueprint for social change.

Editor's Note: A previous version of this article noted that antiretroviral drugs cost less than a dollar a day. While this is true for generic drugs in developing countries, the figure does not reflect the cost in Canada, where anti-retroviral drugs are much more expensive, especially for patients who do not have extended medical insurance.

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