A recurrence of the very leukemia that led to his revolutionary HIV-curing stem-cell transplant has taken the life of Timothy Ray Brown, who died in Palm Springs, California, on Sept. 29. His partner since 2013, Tim Hoeffgen, was at his side.
In 2007, Brown became the first person ever to be cured of HIV when doctors in Berlin, where he was living at the time, arranged for a stem-cell transplant to cure his cancer using a donor with a rare genetic mutation that blocks most strains of HIV.
As the passing years proved that the tweaked transplant kept HIV from further reproducing in his body, Brown, known merely as "The Berlin Patient" until he came out under his own name, became medically famous—and a symbol of hope for an HIV cure.
"He never asked for this spotlight. He was just a man living with HIV, like many of us, who had the misfortune of developing leukemia, and who had a very clever oncologist and some pure luck," said longtime HIV survivor and blogger Mark S. King about Brown.
The Decline of a Gentle Soul With an “Amazing Will”
News of Brown’s passing was initially posted on his Facebook page by Tim Hoeffgen, his partner since 2013.
On Sept. 25, talking to TheBody as he sat alongside Brown, Hoeffgen had said that he'd been caring for Brown since the spring, living alongside him in the hospital for weeks while he had heavy rounds of chemo and radiation that debilitated him—but failed to knock back the cancer remission.
"He has an amazing will," said Hoeffgen at the time, "but all that treatment really messed him up. He can sound pretty normal talking to someone on the phone for a few minutes." In fact, Hoeffgen put Brown on the line, but his voice was too feeble to make out.
Hoeffgen said that the hospital had made a special allowance during COVID so that he could live and sleep alongside Brown there, which he did—only going home twice in several weeks.
Since the return from the hospital, said Hoeffgen, he'd been Brown's primary caregiver, alongside a weekly nurse, a twice-weekly home health aide, and a circle of friends who would stay with Brown while Hoeffgen went out for errands or fresh air.
"He'd be delirious one moment, then the next minute fine, sitting up and bitching about Trump and drinking a milkshake," said King, who was in touch with Brown and Hoeffgen in Brown's final days and wrote about it in a post intended for the HIV community, with the couple's blessing.
In an interview with me last year, Brown told me that, despite some neuropathy and joint stiffness, he was living quietly and happily in Palm Springs with Hoeffgen and their cat, Penny. He was doing yoga weekly, volunteering via Desert AIDS Project to provide resources for locals struggling with meth addiction, was involved in the area's HIV & Aging Research Project, and still regularly attending HIV research conferences, including one in Seattle in early 2018.
“I gave a short speech and said to the researchers, ‘Hurry up!’ I’m basically the cheerleader for an HIV cure," he told me at the time.
In His Words: Brown Recalls His HIV Cure
Born in Seattle in 1966, Brown was diagnosed with HIV in 1995 while studying in Berlin. In a 2012 interview with TheBody, he recounted his travels and various jobs throughout Europe before learning, while attending Berlin's Freie Universität, that he was positive.
"It was horrible because at that time it was basically a death sentence," he said. "My doctor wanted me to start treatment immediately, because my CD4 cells were down pretty low."
But the following year brought the first highly effective, multi-class HIV treatment regimen, and Brown stayed in Berlin, doing well on HIV medications for the next decade.
Then, at a friend's wedding in New York in 2006, "I felt awful the whole time, very low energy. I thought that it was jetlag," he recalled. But back in Berlin, the fatigue persisted, leading to tests that finally led to his leukemia diagnosis.
At that time, he met Gero Hütter, M.D., "who ended up being my savior," he recalled. It was Hutter who suggested doing the stem-cell transplant using a donor with the rare HIV-block mutation.
The gambit was successful—and for four years, Brown was anonymously famous worldwide as "The Berlin Patient," the first known person in which HIV was cured. He came out under his real name in 2010, and went on to found The Timothy Ray Brown Foundation, with the help of the World AIDS Institute, to advance cure research.
Only one other person is widely considered by experts to have been "cured" of HIV: A London man named Adam Castillejo, whose cure came about via a stem-cell transplant similar to Brown’s. More recently, additional potential cures have been identified in a Brazilian man and in an American woman, Loreen Willenberg, neither of which involved a stem-cell transplant.
A Post-Cure Love Story
In 2014, Brown and Hoeffgen, while both living in Las Vegas, met over the hookup app Scruff. "I said to myself, 'Is that the Berlin Patient?'" recalled Hoeffgen upon seeing Brown's picture on the app. The two met, hit it off, and, about a year later, moved together to Palm Springs, where Hoeffgen, who is living with HIV, preferred the available HIV medical care over what he received in Vegas.
"My first impression of Timothy was that he was extremely sweet—and a very interesting person," Hoeffgen says. Among their favorite pastimes in Palm Springs was gorging on new movies at the local Regal cinemas with their monthly $21 all-you-can-watch passes. The last movie they saw before the COVID shutdown and Brown's hospitalization was "The Invisible Man," with Elisabeth Moss.
In Palm Springs, the couple befriended Jeff Taylor, founder and head of the HIV+ Aging Research Project-Palm Springs, which communicates with longtime survivors around their needs, especially psychosocial ones.
Brown and Hoeffgen joined the project's stakeholder advisory board, as well as the local chapter of "Let's Kick ASS (AIDS Survival Syndrome)," a national network of longtime survivor social groups started by Tez Anderson.
"He's hanging in there," Taylor said of Brown on Sept. 24. "He gets a little confused but he can still follow a conversation and laugh at dirty jokes."
Taylor said further of Brown: "He's very sweet and naive. I don't think he understood the media spotlight he'd be under [once he came out as the Berlin Patient]. He's funny, disarming and unabashedly sexual." Laughing, Taylor said that Brown was legendary for wearing something to a "No Pants No Problem" party during the 2018 International AIDS Conference in Amsterdam, the Netherlands, "that left nothing to the imagination."
A Quiet, But Outspoken, Advocate for an HIV Cure
Both King and Taylor said that Brown's bravery in coming forward with his story had given hope to countless people living with HIV, as well as researchers, that an HIV cure was possible.
"He put cure research front and center on the cover of every major magazine at a time when general interest in HIV was waning," noted King. "We projected all our hopes and what-ifs onto him. People swarmed him at conferences, despite the fact that he was not a show person at all. He and [Hoeffgen] were just two regular gay guys living in Palm Springs enjoying the sunshine, the pools and the boys. They've never pretended to be anything more than that."
In a great irony, noted King, Brown, formerly HIV-positive himself, eventually went on pre-exposure prophylaxis (PrEP), the regimen for sexually active people that prevents them from getting HIV. (Before PrEP, Brown told TheBody in 2012, he was enjoying using the female condom for HIV protection.)
Before Brown, said Taylor, "Cure was a word that dare not speak its name. Since Tim, every cure meeting you go to, it all starts out with The Berlin Patient. He gave us proof of concept that a cure was possible. If it weren't for him, we wouldn't have cure research. You can't underestimate the importance he's had. He was Mr. Cure."
It was a title that Brown did not want to keep for himself. "I hope that everyone in the world who is afflicted by this disease can be cured of it," he told TheBody in 2012, "no matter where they live, no matter what their socioeconomic background is, no matter what their color is, their sexual orientation is. I want everyone to be cured."
On our Sept. 25 phone call, I asked Hoeffgen to ask Brown what he thought the meaning of his remarkable, obscurity-to-legend life had been. Hoeffgen spoke back Brown's murmured response: "Trying to be good, trying to help people as much as possible, finding cures for HIV."
At the time of Brown's death, he and Hoeffgen were facing financial and legal challenges that Hoeffgen did not want to detail publicly. Donations to their household can be made via this GoFundMe campaign set up by friends.