A New Documentary Project Seeks to Tell the Stories of HIV Long-Term Survivors Who Benefitted from Early Access to Meds
by Chael Needle
Recently lotteries have been popping up across the country to encourage people to become vaccinated for COVID-19. Some within the HIV/AIDS community have balked at the idea that people need to be wooed with the promise of money to protect themselves against the virus. Some remember fighting for their lives, activists whose successes included creating a fast-track for FDA approval for HIV meds in a landscape without effective regimens. Some remember fighting for compassionate access for the most vulnerable individuals, those with advanced symptoms who were ineligible to be part of a clinical trial and needed pre-approval access. Some remember a time when the pharmaceutical companies, partly in response to this pressure, offered lotteries for protease inhibitor-containing HAART meds, scarce in number because they were not yet FDA-approved and not yet produced on a mass scale. Some remember applying for these compassionate access protocols organized by Roche and then Merck, not because they would win money if selected but because they would win back the chance to stabilize their health. And live. Rise again, like the Christian bible’s Lazarus.
Two filmmakers, Carly McCarthy and Malcom Gregory Scott, have chosen this subject for a yet-filmed documentary, The Lazarus Lotteries. The San Francisco-based production is currently seeking long-term survivors who entered one of these lotteries and want to tell their stories of survival. Tens of thousands needed the meds; fewer than 4,000 won access. Scott himself benefitted from one of these lotteries and his search for other survivors will form a throughline for the doc.
Says film producer-director Carly McCarthy about her impetus to work on the film: “I met Malcom a few years ago, and after hearing small bites of his life story, I was immediately intrigued. I did not know what the final outcome would be of making a film about Malcom’s story, but I knew I had to start somewhere. Originally, I had the vision of a short film that told a compelling yet simple version of his story of survival and his role in the era of AIDS. The more time we spent together, I realized quickly how Malcom was one star in a galaxy of history. How his story was connected to a chapter in LGBTQ history that was bigger, scarier, probably more influential on the ever-changing story of queer liberation than most can imagine. I have a hunger to understand this chapter, not only in Malcom’s life but in the story of the United States of America.”
Co-producer Malcom Gregory Scott’s reasons for making the doc were political but also directly personal: “I’ve been wanting to make this film for years, not only because I’m personally so curious to meet other people whose lives were saved in the last hour by the 1995 protease inhibitor expanded compassionate access protocols, aka the lotteries, but also because I think it’s so important to tell this extraordinary story, and give credit to some of the activists and others who fought so hard for the lotteries. These are unsung heroes at a crucial turning point in the history of AIDS, and I want to be sure history doesn’t forget them.
“After meeting Carly through a mutual friend a few years ago, I think she read something about my story on Instagram. She asked me if I would let her film me for a short documentary about my life: being kicked out of the Navy for being queer, being diagnosed with HIV when the diagnosis was considered a death sentence, writing briefly for television, becoming an activist, and then barely surviving stage IV AIDS only because of a lottery for a new miracle drug. “
When McCarthy visited Scott in Portland a few times, Scott says he became very comfortable sharing his story with her and he realized she had a solid skills set to connect with others who might tell their stories. “And I vibed with her aesthetic values, too,” he adds.
Scott dives into storytelling mode: “One day, after shooting at my home in Portland, Carly said, ‘Your story is so big.’
“‘Maybe just desultory,’ I countered.
“‘It’s just hard to know how to tell it, what to focus on, where to start,’ I think she replied.
“That’s when I told her that I had an idea for a documentary that was more interesting than just telling my personal story. I explained I wanted to identify, locate, contact, and meet other participants in the 1995 compassionate access lotteries and capture their stories on film. She nodded and said she would think about it. I honestly wasn’t sure that day that she understood what I was talking about, but after thinking about it for a time, she called me to say, ‘I’m in.’
“COVID happened not too much longer after that, and slowed us down, of course, but now it’s also motivated us to proceed without delay, serving as it does as a reminder of our common mortality, and the need, therefore, to document first hand accounts of the lotteries without delay, and also because it seems the world could really use these stories right now, these stories of unlikely survival in a pandemic.”
A&U had the opportunity to correspond with the filmmakers about their project.
Chael Needle: Why do you think it is important to document the lottery process for today’s audience?
Malcom Gregory Scott: [As I stated before] the story of the unsung heroes who made the lotteries possible deserves to be heard, and the stories of those who survived a pandemic against all odds because of those heroic efforts need to be heard, especially right now. But asking why it’s especially important for today’s audience reveals new layers. Sarah Schulman, in the introduction to her sweeping history of ACT UP [Let the Record Show; see this issue’s cover story], addresses this question eloquently and I can only do a yeoman’s job compared to her, but she parses well the ways in which the history of AIDS has thus far been distorted by sexual stigma, anti-queer prejudice, and commercial biases. We are just a small part of what I think is a larger impulse of the AIDS generation, my generation, in league with our younger cultural descendants who are so thirsty for these true accounts, to document an accurate history of the AIDS era. And this story is instructive, I think, instructive to future activists, public health officials and pharmaceutical interests.
Carly McCarthy: There can be such an amnesia and disregard for historical trauma and oppression, even when that history is so recent. Making films that highlight this and the glimpses of survival gives people an opportunity to learn and for others where relevant to own their history. Our community needs to be reminded of the heroic and radical activism that made real life saving change in the era of AIDS. When so many [limit] their activism to exclusively posting on social media, we all need to see what it was really like to dedicate a life to making change. Now more than ever we need to look at the tactics from the past and apply them to what we face as a community.
Malcom, what was your own experience of the lottery at the time? How do you see it now, looking back?
Scott: I was already very ill that summer twenty-six years ago when the lotteries were announced. I had won my battle with pneumocystis carinii pneumonia in spite of a collapsed lung and an allergy to Bactrim, the main prophylaxis for that opportunistic infection (OI). I had fought back the Kaposi sarcoma also, undergoing radiation therapy, subcutaneous micro-injections of chemo drugs, and months-long courses of interferon. But by 1995, I was losing the war. I hadn’t had a measurable CD4 count for nearly a year, and I was wasting away with a very advanced case of microsporidiosis, huddled inside a bubble I’d created in a basement apartment around the corner from my doctor’s office in N.W. Washington, D.C. I had already lost one-third of my healthy body weight, and I looked like a walking skeleton.
In fact, I had actually surrendered months earlier, and begun the final preparations for my death. I was dosed up on morphine and opium tincture, and required medical cannabis to stomach the handfuls of prophylaxis pills I took every three to four hours to prevent the various OIs that threatened, so my memories are not altogether clear from that time period. But at some point, months before that summer, we began to hear rumors of a new class of drugs called protease inhibitors just entering FDA trials. So I fought to hang on to that sliver of hope; I decided to try to live long enough to see if those new drugs would work for me. By that summer, the FDA was expanding the trials, and soon, almost anyone privileged enough to have access to healthcare could get the new treatment, provided they were still healthy enough to qualify for the trials, which I definitely was not. So I would need to hang on for perhaps another year before the trials would be complete, and knowing how difficult past winters had proven to my health, my prospects still appeared grim.
Then in June, the Associated Press ran a story: “Lottery Set to Distribute Experimental AIDS Drug.” That headline renewed my hope. Soon another lottery from another drugmaker was announced. Doug Ward, my brilliant doctor, facilitated my applications. I still have the letter from Merck explaining that the 1,100 slots were already filled in the first “drawing” and that I was number 9870 on the waiting list should any of the 1,100 be unable or choose not to participate. Nor did I get Roche’s PI on the first “drawing.” So I waited, I hoped, and I tried to stay warm, through what I’ve often described as the coldest winter of my life. Then, in January, and on my thirty-fourth birthday at that, Doug Ward called me to tell me I had been awarded a slot in Roche’s expanded compassionate access protocols for saquinivir.
By February 1996, as I began taking the new drug, stories of miraculous recoveries were already spreading through the community and starting to emerge in the press, and my own was no exception. Within four weeks, I had gained ten pounds and forty T cells and was no longer largely bedridden. Twelve weeks after starting therapy, I was well enough to volunteer as crew for the first (and only?) AIDS Ride from Philadelphia to D.C. Years would pass before I really believed I might live to grow old, but my immune system continued to recover, my CD4 count climbing slowly over the years, although never matching the levels documented in 1987 when I was first diagnosed with HIV.
Carly, how does this film fit within your aims as a filmmaker?
McCarthy: A question I ask myself when approaching a project is, “how will this help my community become stronger and more free?” The LGBTQ community are for better or worse, masters at transforming grief into something else. Something that does justice, creates honor and can live on for whatever was lost. Something that belongs to us forever and that we get to pass down to the next generation. There is a resiliency within us that is beautiful and unstoppable. That is where I feel the most pride. It is so critical that in the fragile times we are living in as a country that we hold the past as we look forward and envision our freedoms. I want to always be making work that centers that message and uplifts those who lived through unimaginable struggle.
If you or someone you knew received protease inhibitors through a compassionate access lottery in 1995, the producers seek to document your story on film. They also seek other first-hand accounts of the lotteries from activists, public health officials, medical care providers, pharmaceutical professionals and others with direct knowledge of the lotteries. For more information, or to connect with the filmmakers, visit www.lazaruslotteries.com or email [email protected].
Chael Needle is Managing Editor of A&U. Follow him on Twitter @ChaelNeedle.