There have been a number of recent films about AIDS and AIDS activism. Were you worried about covering the same ground or competing with them?
I didn’t know about We Were Here until I saw that it was playing at Sundance, when I was already working on my film. I went to see it to see how much shared territory there was, and there was none. In a way, that film looked back at some of the period without talking about what was accomplished and how to tell the story of the triumph of the drugs that became available in 1996. There’s also Vito, which is the story of one important person’s life and activism. It brings him into ACT UP, but not the area in which I was focusing. I don’t tell the entire story of ACT UP. It’s the story of a group of people who invented this idea of treatment activism and transformed the health care world as we know it.
You’ve been a print journalist for decades. What inspired you to move into filmmaking?
I started thinking about it in 2009. I wanted to write the story. Then I realized that even in order to write it, I’d have to go back to video. I knew that it was there and had been shot. HIV and the camcorder go hand in hand. The camcorder was introduced in 1982, just a few months after the first reports of AIDS. It was adopted very quickly as a tool by people who were doing activism. Looking at this 25-year-old footage, I changed my goal to making a documentary.
How hard was it to track down all that footage?
It wasn’t too tough. We were working on it right until we locked the picture. I kept looking for different camera angles and higher quality footage. The footage that we used is from all formats. Sometimes, it was copies of masters, and we kept looking for masters to get a better-quality image. Some of it is shot on VHS.
How long did the editing on your film take?
Fourteen months. We had two cutting rooms. So in terms of hours, that’s 28 months. We went through 700 hours of archival footage to pare it down to two hours. My first cut was 13 hours. It took us two days to watch. I loved it, but I couldn’t release it. I had to remove a lot of significant detail, entire stories of people’s lives in order to make a digestible feature.
Did you ever feel tempted to make a more overtly personal film?
No. Before doing this, I never thought of myself as a documentarian. It’s not my personal story. I’m not a hero here. I just stood on the sidelines, hoping these people would succeed. I had invested a lot of hope in them. Because my lover was sick, I’d hoped they’d do something quicker rather than later and make a significant breakthrough.
Why do you think the anger of the ACT UP days is largely missing from contemporary gay or health care activism?
I don’t know if it’s anger that’s missing. Maybe it’s urgency. That was a time when every minute counted. The prognosis for survival after diagnosis was 18 months. That’s all you could expect. Once that changed, urgency evaporated. That makes sense. Somehow, we’ve allowed the Republicans to demonize the word “care” as if it’s an awful thing. No one’s come to the defense of the idea that ACT UP promulgated that health care is a human right. That’s gotten lost. I’d love to see it come back, but no one’s doing that kind of activism. The model ACT UP used for interfacing with science has been replicated in breast cancer activism, but the grass roots activism has been forgotten.
On the other hand, do you think in a post-9/11 world, it would be possible to do the same kind of activism? The Pussy Riot action made me think of the ACT UP protest in St. Patrick’s Cathedral, although obviously it took place in a different country.
They’re absolutely parallel. I don’t know if activists today would be able to get away with a protest like that in this country. I was just in Washington for the International AIDS Conference, and some of the protest organizations went to the White House to demand more money for cure research. Approaching the gate to the White House in exactly the way they had in 1992, they saw there were snipers around. They were not going to be able to do anything, and they were instantly arrested. Then they were informed that if they threw anything over the fence, it was a felony, not just a misdemeanor or violation. What could they get away with? The times are really different. But they don’t have a huge grass roots movement behind them. I’m curious whether Pussy Riot will lead to a huge pro-democracy movement in Russia.
Have all the people you interviewed seen the film?
All but two. I think they were nervous at first. One of the reasons why the story of AIDS activism hadn't been told before is that it’s defended fiercely from various angles. ACT UP really was so much more than the story I tell in the film. Needle exchange emerged through it. Housing Works came from it. Its influence was really broad, in policy and so many other social issues. The political risk in telling one small story was large. I was relieved and gratified that the people whose story I told felt that I did it justice.