In ‘How to Survive a Plague,’ Film Looks Back at First AIDS Activists


In a new documentary, “How to Survive a Plague,” filmmaker David France re-examines the in-your-face brand of AIDS activism that forced the nation to pay attention in the early days of the epidemic and eventually convinced the federal government to speed the approval of life-saving drugs. Ray Suarez speaks with France about why a film primarily composed of archival, handheld video footage from the 1980s and ’90s remains so relevant to today’s fight.

Below, read an unedited transcript of Ray’s interview with David France, including several questions cut from the video due to time restrictions.

RAY SUAREZ: Hi, welcome back to the online NewsHour. I’m Ray Suarez and I am joined today by David France, director of “How to Survive a Plague,” a documentary that takes us back to the early days of the AIDS epidemic in the United States and the struggles to understand the disease, to advocate for more help and more research and to work with the dying. And in those days, AIDS was viewed as a death sentence. And yet so many young men were ill and took a long, terrible time to die and it was hard getting America to wrap its head around it. David, I was covering this new disease back in those days back in Los Angeles and New York, and I think a lot of people don’t remember what those days were like. Take us back to the 1980s.

DAVID FRANCE: It really is hard to remember because it seems so improbable that a disease could wash into our country and be ignored politically the way this one was. Back in 1981, the summer of ’81, the first reports of a mystery illness affecting mostly gay men hit the newspapers. One would have assumed that an apparently infectious disease would get responded to by the public health authorities and politicians with some urgency, and that just was not the case. What went from 1981 as an infection in 41 people that we knew of since then was allowed to grow into a massive and global pandemic. For many years, without even any acknowledgment by the federal government, we had a president who for the first six years of the epidemic never mentioned it publicly. And his staff members in his administration instead would joke about it publicly. So there was this sense that there was almost a cheering on of an epidemic in a community that was so disenfranchised back then that they had no advocates or power of voice to be able to respond to it themselves.

RAY SUAREZ: I think you’re right that in many ways this new illness on the scene was ignored. But when people finally started to pay attention it, it was not necessarily with sympathy and urgency, but with panic.

DAVID FRANCE: Exactly. And prejudice. There were serious proposals for quarantine, for quarantining all gay people before there was a test that might have separated out those that were positive from negative; serious proposals to tattoo people with HIV so that the world could see their infection branded on their shoulders. And not much money going into scientific research.

RAY SUAREZ: So, a community got in gear, and played an interesting inside and outside game. At the same time there were louder and louder in-your-face demonstrations, there was also a lot of back-channel work in the medical community, in the research community, in the pharmaceutical world. Both things were being pursued at the same time, weren’t they?

DAVID FRANCE: Correct. Well, certainly it developed in that direction. We see in AIDS activism that street protests, this kind of grassroots mass movement around AIDS didn’t begin until 1987, which was six years into the epidemic, and at the time it was mostly just an expression of outrage at the government or the various government agencies that were apparently doing so little.

Over time the strategy developed, in ’88 and ’89, of an inside approach as you just described where a number of people, none of whom had any scientific background. But what they shared was this fierce will to live. They armed themselves with the in-depth knowledge of immunology and cellular biology and virology and all of the scientific principles that would be necessary to engage in a conversation, a frank and productive conversation, with the scientists whom they wanted to do this work, and who they realized lacked a leader, anybody establishing direction or agenda for AIDS research. So they ultimately took on that role themselves.

We see by 1990 and 1991 they were being counseled by key members of the research establishment. They were inviting activists and people with HIV and their advocates into meetings with Nobel Prize winners to determine what next moves should be made. And it’s really a phenomenal period in the scientific community in the United States and the dawn of modern patient rights and patient advocacy movements.

RAY SUAREZ: When ACT UP was getting started, it was ferocious. It could be obnoxious. Were there people who said, “I’m not sure this is the way to go? I’m not sure screaming in the face of elected officials that ‘you don’t care if I die’ is necessarily the way to proceed”?

DAVID FRANCE: In fact, initially they were doing very little more than that, and were roundly dismissed by the media and by politicians for offering no real solutions, just an anger-in-your-face attitude. But ultimately what they were able to do with those protests was to win the hearts and minds of the American people in a certain degree. By the end of the second year of their work, they staged a protest at the FDA, a very colorful and kind of in-your-face protest. But it was the first time — it was covered widely by television and newspapers — that most Americans saw what people with AIDS looked like outside hospital beds. The idea that there were people who wanted drugs, and the FDA was refusing to give them these drugs, was startling and was something people could really identify with and did identify with and it began this really turning-of-the-ship of public opinion about what AIDS activism was, and what the government’s response should be to them.

RAY SUAREZ: I think a lot of people don’t remember how important this movement was in changing the testing regimes, changing the speed with which new treatments were made available, changing the way we rushed drugs to people who might be helped by them. There were probably a lot of people who weren’t, but there were probably a lot that we learned faster that we wouldn’t have without this movement.

DAVID FRANCE: Absolutely, that’s the first thing they had to recognize, that it was not just this kind of disregard for the victims of HIV that was the problem, but that the health care system itself had some serious and fundamental flaws, especially in the area of drug development. Drug development at the time would take some 10 to12 years for a drug to go from a test tube to a medicine cabinet. It didn’t need to take that long, but it was a tradition going back 100 years that just needed to be fixed. So they fixed it and brought it down to two years or less within a very short time.

And ultimately, when effective medications were being developed, the ones that came out in 1996 and changed the course of the epidemic, they were able to help bring those drugs through research and into people’s bodies within six months. It was really a history-making and phenomenal effort on the part of everybody to get those drugs out. The idea that there was a sense of urgency in pharmaceutical research had never existed before and would not have existed if they had not fought for a place at the table to make that happen.

RAY SUAREZ: It’s a difficult story to tell, but I’m sure it was made a little easier by the fact that a lot of this was chronicled by the people who were living it. There was a lot of footage taken in the ’80s in your documentary along with reminiscences from people today.

DAVID FRANCE: As I said earlier, Ray, the mainstream media was just not covering what they were doing. They were continuing to appear as firebrands, as people who just wanted to get arrested and block traffic. For the most part, the work they were doing, the productive work they were doing, in many areas, but especially in science and the area of modernizing the way we research and regulate drugs in America, that wasn’t being covered. So they decided as activists that they would cover it themselves, that they would not allow this historical moment to be lost to history. They created as activists and their colleagues who were artists and people working in the area of community access television did a lot of shooting of these events and meetings of their own. They left behind thousands and thousands of hours of archival footage that I was able to gain access to, and what we found there was a tremendous narrative that had never been told before. It was really the narrative of the movement of outsider to insider of AIDS activism. The last truly great social justice movement of our time.

RAY SUAREZ: You know, a lot of experts around the world are talking about nothing but good news: pushing down the curve of new infections, pushing down the curve of people who are dying from their HIV infection, carving out new areas in law that make the discrimination we saw in your film impossible. Why is it important to tell this story now?

DAVID FRANCE: I think it is important to not let the story drift out of our historical memories for a number of reasons. The first is that it is an incredibly inspiring story. It is one of those stories that we call an American story. A story of a group of outsiders who are facing a daunting, perilous task, and who somehow manage through boot-strapping themselves and their community, to overcome those obstacles and to triumph. It’s important for us to remember those stories just generally, but in this case, this is the story of the arrival of a community, the gay and lesbian community, that had had no role in civic life before HIV hit. And I think that that is probably the thing that audiences today find most shocking: that there was a time when gay people were reviled publicly. That you could see senators, for example, giving speeches on the Senate floor that were just nothing but bigotry and hostility. And that couldn’t happen again. That certainly surprises anyone who is under 40 years old.

I think that the real reason that the story can be told now is that time has gone by and people, after ’96, after all that dying, hundreds of thousands of American deaths, and millions worldwide, there came a time when people needed to deal with their own grief after living through that. And the community most impacted by the disease turned inward to address the consequences of what all those years meant. Fifteen years of unmitigated plague focusing laser-like on certain communities.

And now, 15 years after, that I think people are beginning to be more ready to talk about what they saw, and to talk about what they learned and to talk about what it did to them, what it meant to them, and what they carry on as a result of having been through that. And, also it is a time when we can look back and see what the legacy of those years was and I think that’s what “How to Survive a Plague” does principally. It says that in this hideous pandemic there was a lot of good that came from it, and most of that came from a small group of people whose stories I tell in the film.

RAY SUAREZ: Documentaries tend not to open the way the latest Tolkien-based movie opens or something based on a Marvel superhero. After you’ve made a work like this, how do you get it in front of people’s eyeballs? What kind of path does it take to being seen by the people who need to and would want to see it?

DAVID FRANCE: Well, you know, documentaries have a relatively small automatic audience so it takes a lot of work and a lot of effort to try and find the general audience for it. I think we’ve been very lucky with our film and with our successes in film festivals around the country and the world and gaining access to audiences that wouldn’t ordinarily flock to a film about an old epidemic. I think it resonates so strongly with so many people, especially under 40, as I said, who see it really as a story about human accomplishment. I think that is what’s gaining us some entrée to new communities that might otherwise not have known this story.

RAY SUAREZ: David France is the director of “How to Survive a Plague”. Should I expect to hear that title read out when the Oscar nominees are announced later?

DAVID FRANCE: If you have any clout.

RAY SUAREZ: Oh, I have tons of clout, good luck with that. Thanks for joining us.

DAVID FRANCE: Thank you, Ray. It was a pleasure.