There was a point when AIDS activist Cleve Jones of San Francisco retired to a small hamlet on the Russian River in northern California and waited to die.
Today, Jones is alive and well. He survived the dark days of the AIDS pandemic in the late 1980s and early 1990s thanks to combination antiretroviral therapy. But those dark days haunt him still: “There are times when I am going to bed to sleep and suddenly it comes back to me with such clarity that I feel that I am falling backwards off a cliff. Those faces start to come back again and it’s just unbearable.” He tears up. “I have to stop.”
Jones is one of the voices that AIDS expert Paul Volberding, MD, FIDSA professor of medicine at the University of California, San Francisco, included in his documentary film, “Life Before the Lifeboat: San Francisco’s Courageous Response to the AIDS Outbreak.” A packed audience at the 47th Annual Meeting of IDSA was treated to the premiere showing of the film, presented by Dr. Volberding as part of the Edward H. Kass Lecture. The moving film and Dr. Volberding were accorded a minute-long standing ovation by an audience that included many people who dabbed away tears themselves as they cheered the film.
“I thought that in doing this lecture I would interview a few of the voices that are still with us to get a sense of what it seemed like to them when they were at the front lines of the epidemic,” Dr. Volberding said. Instead of bringing the people with him to Philadelphia, he raised funds and made a documentary that was shot in San Francisco.
In the film, Dr. Volberding elicits comments from activists such as Jones, physicians, health department administrators, politicians, nurses, and others who reacted to the epidemic, sometimes changing hospital rules to offer compassion when compassion was the only commodity available to patients before advances in antiretroviral therapy.
“The patients were exactly our age,” he said. “They had gone to the same schools; they listened to the same music; they went to the same restaurants. They were really us. It added to the commitment of all of us, but it added to the stress as well.”
During the film, a reporter interviews Dr. Volberding, who says his goal is to turn HIV/AIDS infection from a rapid, heart-wrenching death into a chronic disorder, a goal achieved for many patients due to advances in treatment.
“There were so many people that were part of the early response to AIDS—many of whom are no longer with us,” Dr. Volberding said, including AIDS pioneer Merle A. Sande, MD, FIDSA and a past president of IDSA, who passed away in 2007. “Before we lose many more of those voices and memories, I thought it was important to preserve history in the words of those who lived it—day to day—during the onset of the AIDS epidemic.”
To tell the story, Dr. Volberding collaborated with film director and producer Shipra Shukla of Kathaka Films. Shukla features Dr. Volberding with many of the AIDS pioneers of the early ’80s and tells their stories through reflective conversations. The documentary incorporates photos, footage, and journal entries of those who died of AIDS, chronicling and preserving San Francisco’s history. Among others, the film includes conversations with Mervyn Silverman, former head of San Francisco’s Department of Public Health, and Ambassador Eric Goosby, MD, the State Department’s Global AIDS Coordinator.
Audio and synchronized speaker slides from sessions at the 2009 IDSA Annual Meeting are available for purchase online.
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