Bill & Melinda Gates Foundation

Documenting a Plague: HIV/AIDS Filmmaker Q&A

December 03, 2012


How to Survive a Plague is a film that documents the story of two coalitions—ACT UP and TAG—whose activism and innovation turned AIDS from a death sentence into a manageable condition. With unfettered access to a treasure trove of never-before-seen archival footage from the 1980s and '90s, filmmaker David France puts the viewer smack in the middle of the controversial actions, the heated meetings, the heartbreaking failures, and the exultant breakthroughs of heroes in the making. Mr. France spoke with us at the International AIDS Conference about why he made the film. Following is a summary of the interview.

If you want to talk with David France and AIDS activist Peter Staley, join them for a Google+ hangout on December 3 at 8:00 PM EST.


You have covered AIDS as a journalist for decades. What motivated you to make a film of the fight for effective HIV treatment?  

I made How to Survive a Plague because I believed that we have failed to document an important and heroic chapter in the history of AIDS in America. We forgot how a group of AIDS activists fundamentally changed the way that people everywhere advocate for their health.

A lot of people look back at the early years of AIDS as a time of horror and tragedy. But as anyone who lived on the frontlines of the epidemic in the 1980s and 1990s can tell you, it was also a time when a core group of committed activists – patients, advocates, scientists, and regulators alike -- came together and launched a successful revolution. It was a revolution that saw patients stand up and demand a direct role in decision-making at every level. Patients refused to let researchers meet behind closed doors at the National Institutes of Health. They demanded a seat at the table, and they got one.

I thought that other storytellers had focused exclusively on the negatives of the early AIDS epidemic and hadn’t told the story of what a few dedicated young gay men and women and their allies achieved. These activists pushed their government and the healthcare industry and researchers to respond, and it resulted in the discovery of effective treatments for HIV in just a few years of collaboration.

As someone who chronicled the early history of AIDS, was the discovery of effective HIV treatment in 1996 an unforgettable moment?  

Absolutely. I remember exactly where I was when I learned the news. I remember the way the sun looked in the sky that morning, and the way it felt to finally have hope after 15 long, long years. But still, it was a really hard thing to celebrate at the time. We didn’t know whether these new treatments would turn out to be effective. We didn’t really know how to handle the news. There were concerns that the pills would make people sick, that the side effects would be too severe, that the positive benefits wouldn’t last. People were holding their breath, trying to figure out exactly what to do next.

What are some of the lasting achievements of the AIDS advocacy movement?

They forged an effective and incredibly productive dialogue among patients, advocates, and doctors. That dialogue fueled research. It humanized people with AIDS, broke down stigma and empowered advocates with the knowledge they needed to demand action. It helped advocates push our government to accelerate funding for basic research and clinical trials. It created a healthcare system that is actually responsive to patients.

We learned early on that the only way to sustain positive momentum was to raise our voices while also building constructive relationships with people in government agencies and other key organizations. We were successful because we recognized the importance of working both outside and inside the system.

What do you hope your film’s legacy will be? 

I want people to look at the accomplishments of AIDS activism and recognize that it created a legacy as meaningful and powerful as the Civil Rights Movement. Like the Civil Rights Movement, it created a legacy that we can all embrace and celebrate as humans. It left behind notions of patients’ rights and the right to health that have benefited all of us. I want the AIDS movement to take its rightful place in the history of social movements that have transformed the way we live and the rights that we enjoy.

How can all of us play a part in ending AIDS?

I think we have to stay optimistic, and we have plenty of reasons to be optimistic that we can end AIDS. I also think that we need to remember just how much it cost – in human lives – to get those drugs. When we do that, it can inspire us to keep going and to recognize that we can overcome any challenge.

 
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