Harrowing Stories Of 'How To Survive A Plague'

Transcript

NEAL CONAN, HOST:

This week and last, we've had a series of conversations with filmmakers responsible for this year's nominees for best documentary feature at the Oscars. We spoke with filmmakers of "Searching for Sugar Man," "Five Broken Cameras" and "The Invisible War." Our colleagues at ALL THINGS CONSIDERED interviewed the director of "The Gatekeepers." You can find links to all those interviews at our website. Go to npr.org, click on TALK OF THE NATION. And we wrap things up today with "How To Survive A Plague," a history of ACT UP, a determined, passionate and sometimes rude group of activists who put HIV/AIDS research on the agenda as they literally fought for their lives. We sometimes forget that for too many years, the diagnosis of AIDS was a death sentence.

(SOUNDBITE OF DOCUMENTARY, "HOW TO SURVIVE A PLAGUE")

PETER STALEY: It's like living in a war. All around you, friends are dropping dead and you're scared for your own life all at the same time. I was diagnosed with AIDS-related complex while I was working as a bond trader on Wall Street. I had night sweats. I began to get dry, patchy, scaly, itchy skin on my face and I would get sick constantly. Colds would lay me up for weeks.

CONAN: Peter Staley would find his way to ACT UP and to a career as an AIDS activist. If you were part of this movement, call and tell us about a moment that made a difference. Our phone number, 800-989-8255. Email: talk@npr.org. You can also join the conversation at our website, that's at npr.org, click on TALK OF THE NATION. David France, director and producer of "How To Survive A Plague" joins us from our bureau in New York. Thanks for being with us. Congratulations on the nomination.

DAVID FRANCE: Thank you, and thanks for having me.

CONAN: And for the most part, this is a film not told in retrospect - there are those interviews like that - but to a remarkable degree, you tell the story as it happened with archival footage of key events. How did you find that material?

FRANCE: Well, you know, the - there's this kind of accidental coincidence of history that HIV which came out in 1981, the first reports of the epidemic, was followed closely by the arrival of the camcorder in 1982. And by 1987, when "How To Survive A Plague" opens up, and that's the advent and dawn of AIDS - grassroots AIDS activism, the camcorder and the home video tool had been fully taken up by activists as part of the arsenal of weapons that they were using in this battle to survive. And they left behind a huge pile of archival and vintage images from that time. It's really the first of the movements that was able to do - to kind of create its own, you know, moving-image history that way. And so there's - there are tens of thousands of hours of activism and behind the scenes, kind of chronicling and self-historicizing and memorializing, really, of what life was like back then and what death was like back then at a time when the mainstream media was paying so little attention.

CONAN: So little attention and that is what drove, I think - well, you know it much better than I do - these activists who forced people to start paying attention.

FRANCE: Well, it's the - that was basically the first impetus of ACT UP when it was formed in '87, was to say look, you must face this. You must see this. We're not going to die in, you know, private corridors anymore. We're going to make our deaths and our cries for help public. And they took their argument, they took their plea to America through the media. And that was really the first series of demonstrations they held were really to say look at what's happening to us, and forcing the media to pay attention, giving them these spectacular and, you know, graphic demonstrations, that they really earned a place on the nightly news, and then made their argument directly to the American people.

This government is not paying attention to us. The health establishment is ignoring us. The pharmaceutical industry is not involved in any aspect of research that would do anything to save our lives. Six years into the epidemic, not a single pill available, we've got to do something. And they sought to create that sense of national urgency and, you know, and to get the rest of the community, the rest of the world, really, to recognize that it was a disaster, an unmitigated disaster that was going unattended.

CONAN: There are critical moments that you have on film. For example, there's this extraordinary woman from Queens who stands up at one of these meetings and says, if you guys want to know how all of this system works, how the NIH works, how the drug companies work, how research is done, I have that information for you.

FRANCE: Yes. She was really a game changer for ACT UP. They began their first couple of months as a kind of a protest organization, just saying, you know, stop doing nothing, start doing something. And they were feeding this kind of parallel drug research world. They were helping to build underground pharmacies in New York and in just about every major city in the country where they were importing drugs that the FDA was not approving in this country for use in any area. They were importing them from other countries where they were approved and creating really a parallel system.

And what Iris Long, who was a retired pharmaceutical chemist, who had no dog in the fight in any way, except that she was driven to, you know, as a human being to try to do something in the middle of the epidemic, she found her way to an ACT UP meeting, and she found what they were doing, and then she said, you know, that's not going to save your lives. What's going to save your lives are the real scientists and the real drug-approval mechanisms and the real trial protocols.

What you have to do is to make those things work for you, and she armed the activists with a goal, which was to transform science and health care in America and with the language to begin to understand how to do that and set them railing on a path of this remarkable self-education mission to learn not just the - enough words in science to be able to converse with the researchers, but with the real fundamental knowledge about immunology and as cellular biology and virology, and to the point where they literally became a group of self-educated scientists in a way capable of interacting in an effective way, in a productive way, with Nobel Prize winners and people who are really at the benches trying to indentify new agents to study and to try to get them into human bodies to see if they would do any good at all.

CONAN: And one of the appeals was to please put our advocates, our people on these committees so that we can help you direct research. Let us go into the labs and work with people. I wanted a short clip from the film. This is Emilio Emini, a research scientist at Merck, talking about how he worked with one of the ACT UP advocates in his lab.

(SOUNDBITE OF DOCUMENTARY, "HOW TO SURVIVE A PLAGUE")

DR. EMILIO EMINI: And I remember being very disappointed 'cause I had to see this information, sort of my own personal view which was it'll be a lot more difficult than Neil thought it was going to be originally, and in fact, may not be possible. And Obama said, take a break, pick yourself up and go back at it. If he and his colleagues and his friends around the table can take that attitude into that, I think I'll be saying to myself, Emilio, you've got no right to say to yourself I don't know if I can do this.

CONAN: And what he was working on was a protease inhibitor which turned out to be eventually the key.

FRANCE: Right, in fact the game changer. He was working on Crixivan, which is the drug that really turned the tide, finally, in the epidemic in 1996.

CONAN: We want to hear from those of you who were involved in this movement. Call and tell us about a key moment that made a difference. 800-989-8255. Email: talk@npr.org. We'll start with Kathy. Kathy is on the line with us from Austin.

KATHY: Hey, Peter, I was a member. I want to say a shoutout for friend Dave Roach, who you may remember. And I just have two words for you, so welcome. One of the most transformative experiences of being involved in ACT UP for me was some of the actions that we did that is actually caused change. Being young and in my 20s at the time and definitely afraid of the impact that AIDS would have on our community. The hope that you gave with certain things that you did, namely you know the incident I'm taking about with the New York Stock Exchange and the Brooklyn Bridge and you know, the trans - I have so many transformative things to say, but the Keith Herring totem at the auction, the change that that made for our organization in terms of funding.

And I just want to thank you for your decades-long work in this effort and for changing my life as a young person, giving me something to believe in and showing me through the dedication to the organization that just a small group of people really could make change, from handcuffing ourselves to the waiting room chairs at St. Vincent's Hospital in Greenwich Village so they would stop turning away AIDS patients to shutting down the Brooklyn Bridge in the middle of rush hour to get them to pay attention to us. Your leadership and what the organization did changed the world and changed AIDS. And that's all I can say without losing it right now. Congratulations to your...

CONAN: This not Peter. It's David France.

FRANCE: Well, that's a great shoutout to Peter Staley, who is the key figure in how to survive a plague, and one of them - one of the really transformative leaders in AIDS activism. He was diagnosed while he was still working on Wall Street as bond trader. And the diagnosis really threw his life into disarray, but he found a way to rebuild it through ACT UP and the work that he did there and helped create this incredible movement.

What the caller is talking about was - one of the first things that Peter helped organize was a series of demonstrations against Burroughs Wellcome, manufacturer of the very first drug approved for treating an HIV infection called AZT.

And when it was introduced, it was introduced at a remarkably high price and an indefensibly high price that put it out of reach of most people. And Peter...

KATHY: And when it got approved in Great Britain, they raised the price. And that's what prompted the action, was when they approved it as an AIDS drug but they raised the price substantially, putting it out of reach for most people.

FRANCE: It was crazy. And what Peter was able to do was to lead a group of people into the New York Stock Exchange posing as traders. And then they chained themselves to a balcony and dropped a banner that read Sell Wellcome. And for the first time in the history of the stock exchange postponed or delayed the opening bell by I think about nine minutes while they conducted their protest and won all sorts of coverage in the news that allowed - allowed them to make their argument about this price and to begin a campaign of embarrassment for the company that ultimately resulted in a 40 percent decrease in the price of the drug.

CONAN: Kathy, thanks very much for the call. Appreciate it.

KATHY: Thank you so much. And thank you, David.

FRANCE: Thank you, Kathy.

CONAN: And we're talking with David France, who's the director and producer of "How to Survive a Plague," one of the films nominated for this year's Academy Award for best feature documentary. You're listening to TALK OF THE NATION from NPR News.

And we were just talking about Peter Staley. I wanted to play another clip from the movie. One of the critical moments again. This is the International Conference on AIDS in San Francisco in 1990, and here he is addressing the crowd of scientists gathered at that meeting.

(SOUNDBITE OF DOCUMENTARY, "HOW TO SURVIVE A PLAGUE")

PETER STALEY: Can we all before it's too late begin to understand each other? Will we realize that we share similar motivations? During the upcoming days, ACT UP New York will be handing out our AIDS treatment agenda, which includes a list of 99 drugs that we believe could be ready for small phase one studies this year or next. However, from your side, we're being constantly told to butt out. On my side, the level of anger and frustration is reaching such a point that attitudes claiming that all of you are uncaring and in it for greed are now widespread.

CONAN: And his skill as an orator such that by the time he wound up that speech, he'd incorporated everybody in the room as a member of ACT UP.

Interesting speech.

FRANCE: Yeah. He was, you know, when they first began to try to have a dialogue with researchers and scientists, they were rejected in rebuffed, in part because it seems like such an alien group. Nobody knew gay people then. Gay people were still largely invisible. This is, you know, decades before Ellen DeGeneres and, you know, marriage equality and "Will and Grace." You know, it was a time when there was great suspicion and kind of an alienation between gay people and the rest of the society.

And they brought suspicions of their own to the table. They figured that the reason scientists weren't doing research and producing effective medications is because the scientists were evil and wanted them to suffer and didn't care for their lives. And when they finally all got together, and we see that in the course of this film, what they discovered was, you know, real human beings trying as hard as they could on all sides to do the right thing, and that in fact the scientists were trying to be heroic, and the AIDS activists were trying to be helpful.

And once they made that bond, and we see that in that particular scene, the beginning of that dialogue and respect and trust, then they really started to pull together in a single unit to try to find their way through this morass of this new virus and to try to find a way to bring it to its knees.

CONAN: The film tracks the awful frustration as the death toll continues to mount as nothing, including AZT, proves to be very helpful. It tracks the frustrations of the group as it splits over internal divisions over tactics, and it does not flinch away from describing those as well. And then it describes the moment of almost miracle as those who had suffered from Kaposi syndrome saw those awful lesions melt away from their skins as finally the triple treatment proved to be effective.

I wonder. You specifically make a point at the end of the film to say this is still going on, many people can't afford the drug; too many people still die of AIDS, 5,000 a day. Nevertheless don't you feel that in this happy moment at the end, you're conveying a false message?

FRANCE: Oh, no, not at all. You know, this is an amazing breakthrough and it made survival possible. In fact, there are today eight million people alive on those drugs that were spearheaded in this remarkable meeting of minds and hearts in this campaign to find this drug. It's really - you know, the story of how we got those drugs, it's really like a, you know, like a, you know, a medical thriller about, you know, solving a problem that seemed unsolvable.

And there are - and it changed everything about the prospects and the epidemic. It changed the plague. And - but - and it also allowed us to address these brand new goals, which are - which include getting everybody who needs the drugs on the drugs, and saving the lives of the people who are - if they don't have access to the drugs just as doomed as they were prior to 1996. So those goals are a luxury now thanks to the work these people did.

CONAN: David France, congratulations again. Good luck on Oscar night.

It's the TALK OF THE NATION from NPR News. Transcript provided by NPR, Copyright NPR.