An HIV diagnosis upended San Diego resident Jim Dunn’s life. But his willingness to participate in an end-of-life program is helping scientists to better understand the disease and hopefully find a cure.
In May 2003, a severe illness Dunn thought was Parkinson’s disease turned out to be HIV, the human immunodeficiency virus that attacks the immune system and can lead to AIDS.
Looking to help find a cure, he eventually enrolled in The Last Gift Study, a UC San Diego effort that studies HIV patients’ bodies through a rapid autopsy immediately after death.
His story is now chronicled in “The Last Gift: Jim’s Courage,” a documentary offering a firsthand account of his life, diagnosis, decision to enroll in the study and ultimately his death from cancer on Dec. 30, 2024, at age 76.
The film was screened Dec. 28 at the Beach Break Film Festival in Half Moon Bay in Northern California. It is available to view for free at lastgift.ucsd.edu.
Understanding HIV
Even if antiviral therapy keeps it at bay, HIV integrates in immune cells all over the body and can be very hard to access. As a result, scientists have lacked access to large amounts of fresh, high-quality tissue.
The Last Gift Study, launched in 2017, combats that issue by conducting an autopsy immediately after a patient’s death. Dr. Davey Smith, a professor of medicine and prominent infectious-diseases researcher at UCSD, is the lead investigator, while Dr. Sara Gianella Weibel, a virologist and professor of medicine, oversees aspects such as recruitment, enrollment and follow-up.
“[Smith] had the idea at the very beginning to enroll people with HIV that will also have life-limiting illness into a rapid-research program and then follow very closely so that we really characterize them,” Gianella Weibel said. “We know exactly what type of medication they take … how they feel and what disease they have, and at the time of death, we do rapid autopsies.”
The autopsy process begins with the study team receiving immediate notice of a participant’s death. From there, the researchers collect more than 1,000 tubes of samples and ship them to a lab. The samples can be processed at any time, day or night.
Jason Neidleman, a staff research scientist at study partner Gladstone Institutes in San Francisco, said time is of the essence “because with every passing moment, cells are dying.” With more cells, the team can do more effective research.
Thus far, the program has enrolled 66 patients and conducted about 40 rapid autopsies. Since its inception, it has been awarded more than $15 million from organizations such as the National Institutes of Health and the California NeuroAIDS Tissue Network.
In the documentary, Dunn explains his motivation for enrolling.
“It is truly the last gift, because I’m giving up myself to research scientists [for] the tools that may lead to a breakthrough for a cure for HIV,” he said. “If it does, I’ll be eternally grateful.”
‘An important story’
“The Last Gift” director and videographer Ryan Neisz caught wind of the study through Gianella Weibel, as their children go to the same school. He learned more about her efforts and later helped produce a short video for her.
Neisz, a three-time Emmy Award-winning TV producer, director and editor with extensive experience in reality and documentary projects, often fields ideas and helps with casting, pitching and bringing a project to production.
Now working as a freelance filmmaker, he said “At this stage of my career, I like to tell stories that are important. I’ve done a lot of vapid things — things that make people watch, a lot of housewives stuff and throw-the-wine-in-the-face stories that … don’t cure the soul.
“[‘The Last Gift’] is an important story … that needs to be told. And that’s what excites me. … It’s like wow, there’s something there. There’s humanity here. There’s hope here.”
Gianella Weibel had a pitch for Neisz: Tell the human story behind The Last Gift Study’s scientific work.
“I think a lot of people, when they do research, they really get focused on the logistics of the research and they forget the human part,” she said.
“Ryan did an amazing job really capturing both the science and the human parts of Last Gift. That was really the scope of the movie … the human story behind the tissue.”
‘Do it justice’
“When I sat down and heard [Dunn’s] story, it was a beautiful story and he was a beautiful person,” Neisz said. “So it became important to me to do it justice. I went on this journey with him and I saw him decline. … I interviewed him multiple times over a year and a half to two years and I saw him pass away.
“The gravity of it was extremely important to deliver this story correctly.”
Gianella Weibel had similar sentiments.
“I do think The Last Gift, as a project, has completely changed the trajectory of my career,” she said. “I can almost tell [the story of] my career before and after Last Gift, because the human and ethics and community part is now embedded in everything I do.” ♦