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Physician insights of AIDS epidemic, early on, via film
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For one prominent infectious disease specialist, slides and charts could not adequately communicate the effect that AIDS had on his adopted hometown of San Francisco, the infectious disease community and, ultimately, on the American health care system at large, particularly during the early years of the epidemic.
So when invited to give the Edward H. Kass Lecture on the early history of the disease at the Infectious Diseases Society of America’s annual meeting in 2009, Infectious Disease News Chief Medical Editor Paul A. Volberding, MD, turned to film.
He considered convening a panel to interview on stage but was deterred by the logistics of scheduling everyone to attend and allowing them enough time to share what mattered most, according to Volberding. He decided instead that the most compelling way to tell the story would be to interview others using a video camera, then patching the pieces together himself.
“I wanted to help others remember some of what those experiences were all about and how the system of care that we developed evolved, with the hope of learning some lessons,” Volberding said in an interview. “The early epidemic was horrendous in so many ways, but it’s something that young physicians today have either largely forgotten or just never have known about.”
The collective amnesia began in 1996 once effective therapies for managing the disease were approved, according to Volberding, who was head of the oncology department at San Francisco General Hospital when the epidemic struck. “It went from being an inevitably fatal disease almost overnight, in a manner of speaking, to being a chronic disease where death really isn’t expected,” he said.
Many views, many voices
Although the Edward H. Kass Lecture was meant to be his presentation, Volberding said he did not want it to be solely his own point of view.
“When I would talk to my friends and colleagues about the early days, I realized that my memories often didn’t exactly match theirs, even when talking about the same event, so I thought it would be more fair — and interesting — to give more than just my perspective of what happened because there were so many important moments and different takes on what was going on,” he said.
Others were enthusiastic about his idea, however, and soon Volberding found himself surrounded by a professional production team, filming hours of interviews on several cameras at once. Life Before the Lifeboat: San Francisco’s Courageous Response to the AIDS Outbreak was born.
“It was amazing,” he said. “By chance, I found a great videographer who’d worked in TV before. In turn, he had a connection to a great digital studio and editors, and suddenly, we had a full-scale production going. We basically took over an entire studio for a month.”
Once he realized that the extent of his project meant he would need funding, Volberding was able to obtain about $30,000 in grants from the San Francisco General Hospital Foundation and the California HealthCare Foundation. Still, the monies raised were not adequate to cover all costs. “A lot of the labor was donated,” Volberding said. “The story was personal to a lot of the production people involved; it resonated with them. Everyone it seemed knew someone who had died during the early epidemic.”
Talent makes a difference
Volberding said what impressed him most about the process was the way that the talent came together. Referring to the hundreds of hours of footage that the editors condensed into 30 minutes, he said: “Finding people who can best tell an aspect of a story, people who can see and understand its context, and who know which historical footage makes the most sense to weave into the story, was amazing. Doing this gave me a lot of insight into the incredible level of professional talents that filmmakers have to have. I am not including myself in that group.”
From start to finish, including interviews with 15 people once the funding was secured, the documentary took about 5 months to complete. “We shot the interviews over a month,” Volberding said. Of the suit he wore during filming, he said, “I swore I’d never wear that coat and tie again.”
He said he was keen to complete the project before people important to the story were no long with us, such as former chief of medical services at San Francisco General and a past president of IDSA, Merle A. Sande, MD. “Before we lost too many more, it was great to get these people onto the video. It felt a little bit like a memorial project, especially for Merle Sande, since he was in the middle of most of the events then,” Volberding said.
Not a ‘dry eye’ in the house
Lifeboat spans the period between the first reported case of AIDS in 1981, through 1996 when the disease became manageable with combination antiretroviral therapy. “The film covers how the whole system of care had to be re-thought,” Volberding said. “It’s about how medicine had to learn to act in collaboration with communities; how the entire health care workforce was involved, not just doctors; and how we learned the importance of research as part of the response to a frightening epidemic.”
“When Paul showed his film at IDSA, it brought down the house,” Theodore C. Eickhoff, MD, former IDSA president and Infectious Disease News editor emeritus, said in an interview. “There wasn’t a dry eye there. It’s still an emotional moment any time he shows it to people, especially those with HIV.”
“I know this sounds trite, but the power of video or film is impressive,” Volberding said. Among the most important messages of the film, he noted, was the value of having a “very public dialogue. It was a huge epidemic, and in the beginning, it killed everyone who was infected. It would have been understandable if there had been more discrimination in this country, but by and large, this country acted appropriately, and that was in part because people in medicine were eager to talk and share, and admit it when we didn’t have the answers. That’s the key lesson — approaching an epidemic with candor and collaboration.”
“You’ve got to recognize that this all happened 30 years ago,” Eickhoff said. “There is a whole generation of ID people who weren’t there at the beginning of this. It’s important for them to listen to wise people, like Paul, talk about it.”
Expanding the story’s reach
Although there is nothing firm yet, Volberding said there has been talk about having Lifeboat more actively distributed. “We’re talking to various groups that are interested in possibly using it and expanding upon it.”
Interviewing his friends and colleagues, reliving the early days of the epidemic and seeing how it all came together was “one of the most interesting things I have done in years. It would be interesting to do it again. I believe this format allows a deeper insight into what happened [than a slide presentation]. First-person stories are most compelling,” he said. – by Whitney McKnight
Paul A. Volberding, MD, is professor emeritus of medicine at the University of California, San Francisco.
[Editor’s note: This story was updated in 2021 with Volberding’s new titles to be re-promoted on the 40th anniversary of the first published report of AIDS. Eickhoff died in 2018.]