You can't talk about the history of HIV and AIDS without talking about the history of ACT UP. Formed in the mid 1980s, as HIV ravaged LGBTQ communities across the country, the group was perhaps more influential than any other in bringing the crisis to light through the sheer force of its activism.
At a time when little was understood about the virus and politicians, the media, and the rest of the United States refused to acknowledge or dedicate time and research dollars to the thousands who lay dying or dead, ACT UP (or the AIDS Coalition to Unleash Power) worked to jar the country from its complacency—marching in the streets, occupying the lobbies of pharmaceutical companies, and slowly working its way into the halls of power, becoming policy makers and medical experts when nobody else would help.
David France, a gay journalist who lived through the HIV crisis of the 1980s and 1990s, made a documentary about ACT UP's activism in 2012, and this week released a book on the same topic. Both are called How to Survive a Plague. As the title suggests, neither are a mere history—part of France's intent is to offer activists and politicians a roadmap and guide modeled after ACT UP. I spoke to him about the book, the history of HIV in the US, and what we can learn today as an anti-science, anti-LGBT administration takes over the White House.
This interview has been edited for length and clarity.
VICE: Your book was years in the making—how did you get the idea for it?
David France: I started the book and the film project in 2008; the genesis of the project was an article I wrote for New York Magazine about one of the real heroes of the AIDS epidemic—a very young doctor who had moved into St. Vincent's, New York's main AIDS hospital, right at the epicenter of the epidemic, and had risen to take over AIDS care there. He was one of the top doctors and researchers in the world on the subject. I bumped into him in 2008 and discovered that he was no longer employed by any hospital, addicted to drugs, HIV positive, facing multiple felony charges and I just wondered what the hell happened. How could somebody who had been so pivotal have fallen like that? I started to take measure of the weight of having worked and lived through and survived that period, and after the article, I felt compelled to begin a larger mission to try to figure out what we can learn from the experiences of people who went through that time.
Can you talk about that emotional toll more? What mental state did the crisis put people in?
It really is hard to describe what it's like to feel like you and everybody you know is going to die and that no one will care. In that first five years or six years of the epidemic, it was as likely as not that if you came down with AIDS your parents would disown you, your church would disown you, you would lose your job. It was commonplace to be turned away from hospitals. And none of this was being covered by the mainstream media, so we all felt terrified and forsaken in ways that are hard to convey to people who weren't there.
It sounds like so much of that fear was not only the infection but the stigma of being shunned from the rest of society for having it.
Absolutely. And we knew that nobody was even trying to find a treatment. Six years into the epidemic, there wasn't even an experimental drug out to take after thousands and thousands of deaths. It took six years before the president even mentioned a word about it—after 20,000 American deaths. It was really unfathomable that this was happening in America, in a modern era, that your government didn't care if you lived and healthcare institutions didn't give a shit. You go to a hospital, they wouldn't bring you food. It was a dark, dark period.
Many remember ACT UP as a rah-rah, on the streets organization, but you were also talking to corporations about drug development, to politicians about policy. Can you talk about working inside the system versus outside of it?
ACT UP did a lot behind the scenes. We had 147 chapters at our peak, so they had occasion to make themselves known in cities across the world. I think most people thought of ACT UP protests as carnivals of diffuse rage, and little more—blocking traffic, closing the Golden Gate Bridge for hours, many thought that all had no purpose. But it was all by design, and they were practicing shock troops AIDS activism, where those protests wedged open the doors of power and allowed us to talk to the right people about housing, insurance, IV drug use policies and politics.
And then there was the development of this small, elite brigade of mostly people with HIV and AIDS, none of whom had any formal scientific training, who turned to the literature and textbooks and trained themselves in principles of virology, immunology and biology. They became experts in the fields and developed unusual, innovative ideas about what was going wrong with drug trials. They were rejected at first, but those people out on the streets kept the doors open, and ultimately they were recognized for the contributions they brought to the research effort and were invited to participate alongside the researchers themselves.
Do you think activists today can learn from that approach?
Nobody knows what we're going to be confronting with this new administration yet. We know it's either going to be hideous or catastrophic. We know that he's appointing anti-science advocates. We know that much of what has been accomplished and put into place through liberal activism over the last 30, 40, 50 years is at risk, and it's going to take clever activism and nimble opposition to keep that from happening. I don't know about yours, but my inbox is full of people inviting me to meetings to talk about planning and getting ready, and I know that that's happening all over the country. People are trying to prepare, build an organizational structure and a strategy to allow them to respond to this presidency.
Is passing on history, as in writing this book, an important part of knowing how to respond in crisis times like these?
We have to create those stories and pass those stories along. What we're left with is a lot of the literature that was written in the middle of the plague, which is all wonderful and powerful, but it's literature about what the virus did to America, not what activism did to the virus. That's the story I wanted to tell—the story about how people responded and what they did and how doing what they did made a difference. How did they gain power? How did they infiltrate these hostile environments and hostile systems and turn them around? What did they leave behind? What legacy did they leave behind? That legacy is a blueprint for how to do it in the future. That's the story I wanted to tell.
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