David France fought for over a decade to make the world care about AIDS. Now, he's making sure it doesn't forget.
A journalist living in New York City's East Village when the mysterious epidemic began to slaughter the gay community in 1981, France dedicated himself to chronicling the nascent fight to find a cure for the plague. First, however, the community needed to organize and rise up to fight the homophobia of the times, coming out of the closet onto the national stage to speak out and demand recognition for their rights, both civil and medical. He covered the emergence of ACT UP, a community organization which took to the streets in marches and protests, raising the profile of the victims as the disease continued to tear through the nation.
Millions were dying, and fear was gripping the city, but it took years for President Ronald Reagan to acknowledge the disease, and it first became a real campaign issue in the 1992 election. A few years later, medical advances would begin to help stem the rushing tide of illness. In his Oscar-nominated documentary How to Survive a Plague, France looks back on the fight through vintage footage and interviews, highlighting the activists as never before.
This interview has been slightly edited and condensed
THR: I think I wasn’t aware of the details of the fight against AIDS and the rise of gay activism as much as other civil rights movements, and this was much more recent. Do you think it gets short-changed at all, in terms of public discussion?
France: Oh, absolutely. That’s why we set out to do this project in the first place. It’s as significant a movement as the women’s health movement, the Civil Rights movement, the anti-war movement. It’s more fundamentally transformative than those movements, and yet it has so far not been treated with that kind of significance. And the first thing I wanted to do when I started working on the film was to put it on the shelf with those great American social justice movements and teach people how significant it was for American lives, to canonize it.
THR: I live in the East Village of Manhattan and hang out downtown, and you don’t think of where you are as historical ground, but that’s actually the case.
France: Absolutely, and especially where you are, the Village. I’m still in the same place as I was back then. I guess my lease is as old as you. I’m on 7th Street, and I just look around and see ghosts in the East Village.
THR: And it’s changed so much, the neighborhood.
France: All of those people in the film were from the East Village, and the majority of the street forces that were in ACT UP were East Village artists and bohemians, and people living self-styled lives [who] found a way to afford to be able to do it, spend all that time that it took, to be basically a full-time, unpaid political operative.
THR: That interested me, because at the end of the film, those involved said they were figuring out what to do when the main portion, or at least first act, of the fight wound down in the 90’s, and the film detailed what each person went on to do as a career. So I was wondering what people did to support themselves for a decade of this fight.
France: The people with HIV were more able to go on disability, many with private insurance. And some had some family money, so for the most part, at least the people in the struggle came from a background of some privilege, and they exercised that. But even those that came from privilege were living very close to the edge in those years, and living in the East Village, as you rightly point out, was a way different neighborhood back then. It was a full-on ghetto, where drugs were dealt openly, and it was dotted with empty buildings. It was a place you would go because the rent was cheap.
THR: This movie is almost all vintage footage. It must have been difficult to look back on -- you’re in some of the video -- to see how skinny and sick people were, to watch the fights. How much did you go through, how many hours?
France: We went through thousands of hours to pull together just short of 800 hours, very specific footage about the journey of the treatment activists. So that was sort of the first culling, to bring it down to that narrow amount of vintage footage. And from there, we cut the film out of 800 hours ... All these tapes were unnumbered, undated, they were for the most part just people’s private collection. So we had to ascertain where the footage was shot, and we had to find our own characters in that footage. So we had a wall of photographs, we called it the Wanted Wall, so if any of those people in those photographs appeared in the footage, the frontline PAs would call out so we could go and see our people and what they were doing and where they were doing it.
THR: Do you think if the government had been active -- either not ignorant or unconcerned -- they could have stopped it early on before it spread so much? Or was there no stopping it?
France: No, I think it could have been stopped. I mean, it’s hypothetical, right? But here’s what we know: in 1981, there were 41 patients, and today there is over 70 million. There’s over 35 million dead. So when there were 41 cases, if the government had treated it as a new and dangerous infectious disease, if they had mounted any sort of public-health response to try and contain it, which they didn’t do ... The first thing that you would do is to assign all your epidemiological resources to it, and they didn’t beef up the resources. We saw them do it with earlier outbreaks. When there was a Tylenol outbreak, when someone got sick from a bottle of Tylenol, and the jets of the public-health system were scrambled. We saw them do it in Legionnaires' disease and toxic shock syndrome, so everyone knew there was a way to respond to a new danger. And it was just very apparent from day one that that response was not happening in this disease.
THR: When Hurricane Katrina happened and the government took days to respond and there was so much suffering, some people whispered that the government was selectively disinterested, or less motivated, because of the people that were impacted. Do you think that’s the same sort of case?
France: That’s absolutely the case. The first several years of the epidemic, the only discussion on Capitol Hill of the AIDS epidemic literally included the kind of cheering on and laughing about the deaths of gay people to AIDS. You see a little bit of it in the film with Jesse Helms holding court, but he did that on a regular basis, and he wasn’t alone. People nodded along and applauded with him. Ronald Reagan, it took him six years and tens of thousands of deaths during his administration to even say anything about it. And when he finally said something about it, within weeks of his first comment, he said, “When it comes to AIDS, morality and science teach us the same thing." Which is still blaming the victim for this epidemic that now has spread, as I said before, in this wild way.
And it didn’t have to spread. It could have been contained. We could have solved the problem through containment, through education, through the dissemination of information about how to avoid the illness, and all of that stuff had to be done by the gay community itself. Private funding -- we didn’t have institutions in place already to do it, we had to build brand-new institutions and we had to invent public health in a parallel system and do it that way. It was all done with private initiative. And there was no way that a private initiative could come together fast enough to keep 41 from becoming 10,000 and 100,000 and a million.
THR: Watching Jesse Helms’ just blatantly homophobic speeches, it’s remarkable. Do you watch politics today and see a lawmaker speaking, and say, wow, we’re going to watch video of this guy talking in 10 years and it’s going to sound insane?
France: Well, I certainly am on certain subjects. Like global warming, those documentaries 40 years from now, when everyone is sitting in their oxygen masks, they’re going to be just laughing at those elected officials that are calling it a political attack on coal or whatever they say. But it is shocking to look at that footage of Jesse Helms and to know that this feeling of violation, the sense that you get when you learn that the government spoke like that about people, about citizens, about people we now know are our neighbors and brothers and co-workers and sisters and mothers and all of those things. But back in 1981, there was no role in civic life for gay people. We had been excluded from every aspect of civic life. We weren’t allowed to even say who we were at work, we were fired from jobs, I was fired from a job for being gay [at the NY Post] as though that was a violation of something. And that was happening all over the place. So there were no gay rights. And there were no gay people, as a result, that were standing up and explaining our realities to the larger world.
It was a crazy time and it’s also crazy to think ... just 25 or 30 years since then ... what a dramatic cultural transformation has taken place with the integration of gay people in ordinary life. And that’s one of the legacies of the AIDS activists. That’s one of the first things that AIDS activists had to take on, to establish -- as ridiculous as it sounds -- the idea that people who had AIDS were human and deserving of compassion and empathy.
THR: This may be a silly reference, but it’s how a generation sees it: There was an episode of South Park that said the treatment and cure for HIV was injecting money into oneself. But in a way, it’s true, right, because it’s so expensive? Why do you think that is?
France: Because they can get away with it. It’s still an area where new drug classes are being developed, and it’s expensive to develop a new drug class. But there are so many people with HIV these days -- there’s a market, let’s call it -- we know they’ll be able to recoup. But what they’re looking for instead are these killer profits. The whole economic reality since 2008, the pharmaceutical industry has taken a dip in its profit levels. They’re finding ways to bring in profits, even if their prices are so high that they’re out of reach for some people.
THR: You would think that during the age of Reagan, some great market capitalist would have seen the demand and made an AIDS drug.
France: And once the market forces realized, they did start doing it. In fact, one person, Peter Staley ... really was the person that educated the pharmaceutical industry on the potential to profit. Peter brought to activism the language of money. And he said, we will help you get this product to market if you research it and do it quickly, and we will defend your right to a profit. Not a killer profit, which was what was happening with the first few drugs that came out, just usurious, most expensive drugs ever released. They were breaking all boundaries for drug prices.
THR: I imagine a lot of people went into debt.
France: Yeah, they did, but more so the government, through welfare and other entitlements, so that meant taxpayers. It was coming out of peoples’ pockets.