Hutch News Stories

Timothy Ray Brown, who inspired millions living with HIV, dies of leukemia

For more than a decade after a stem cell transplant, he was the only person known to be cured of HIV/AIDS
Timothy Ray Brown stands in an auditorium at Fred Hutch speaking to an audience
Timothy Ray Brown addressed an audience during the opening of a defeatHIV conference at Seattle's Fred Hutchinson Cancer Research Center on Aug. 17, 2017. Photo by Robert Hood / Fred Hutch News Service

Timothy Ray Brown, the Seattle native who gained world renown in 2010 when he revealed his identity as the first person ever to be cured of HIV/AIDS, died Tuesday in his California home after a recurrence of cancer. He was 54.

“He was such a symbol of hope for so many people living with HIV and an inspiration for those of us working toward a cure,” said Fred Hutchinson Cancer Research Center virologist Dr. Keith Jerome, who got to know Brown in the course of his ongoing research to replicate that cure for others through genetic engineering of immune cells.

Ironically, it was a bid to stop Brown’s cancer that led to a transplant of blood-forming stem cells in 2007 that also cured him of HIV. He had been living with the virus in Berlin since he was a university student there in 1995. Until he publicly revealed his identity in 2010, Brown was known to the world only as “the Berlin Patient.”

In the two successive transplants needed to halt his acute myeloid leukemia — the second of which nearly killed him — Brown received stem cells from a donor who carried a mutation known to confer natural resistance to HIV.

According to his doctor in Berlin, Brown stopped taking antiretroviral drugs just before his first transplant on Feb. 16, 2007. He was free of the virus for the rest of his life. Brown often referred to the time of his transplant as his “new birthdate,” and it is has been celebrated in Seattle with cake in early February by members of defeatHIV, the Hutch-based HIV cure research group.

Brown's success inspired HIV cure research

As co-founder of defeatHIV, Fred Hutch transplant physician Dr. Hans-Peter Kiem, holder of the Stephanus Family Endowed Chair for Cell and Gene Therapy, also got to know and respect Brown. He credits him with spurring research in HIV cure work funded by the National Institutes of Health through its Martin Delaney Collaboratories program.

“It was because of Timothy that the NIH launched this HIV cure effort 10 years ago. It’s incredible how many people he has helped directly or indirectly,” Kiem said.

In November, Kiem delivered a TEDx talk in Seattle describing how Timothy Ray Brown has inspired his work to find a cure for HIV through the eventual delivery of “gene therapy in a syringe.”

Despite numerous efforts to duplicate Brown’s cure, for a dozen years he remained the only person on Earth known to have beaten the virus. It was his fervent wish to not be the only one.

Then, on March 4, 2019, a “London Patient” was deemed likely to have been cured through a similar stem cell transplant. He identified himself a year later as Adam Castillejo, a 40-year-old immigrant from Venezuela who worked as a sous chef in London. He had received a single stem cell transplant in 2016.

Although Brown had talked to Castillejo by telephone, the two never met in person.

A small circle of those cured of HIV

Joining Brown in this elite circle of those thought cured of is Loreen Willenberg, a 66-year-old California woman believed to be the first to clear the virus without a transplant or drugs. After testing positive in 1992, she is among  a group of 64 so-called elite controllers enrolled in a study who seem to have a genetic ability to sequester or suppress the virus. She uniquely has shown no evidence of HIV using the most powerful of gene probing techniques. Scientists are eager to discovery why.

“Somehow, my immune system has provided clues to what is possible in the fight against HIV infection,” said Willenberg, on learning the news of Brown’s passing. “The discovery that I have sequestered this virus into a type of genetic ‘jail’ is a testament to the dedication of researchers to unlock the mysteries of spontaneous control.

“I met Timothy a decade ago in San Francisco, and I was immediately struck by his serene nature and humility, despite obvious frailty resulting from his struggle with the transplants. It was an honor to be in his presence.”

While antiretroviral drug combinations had kept Brown’s HIV under control, as they have for nearly 25 million others on the therapy around the world, he had to take the drugs every day or the virus would rebound. It was the diagnosis of acute myeloid leukemia in 2006 that posed a more immediate threat to his life.

His German oncologist, Dr. Gero Hütter, concluded that only a bone marrow transplant could stop his aggressive cancer, but he proposed to Brown a radical option: If he could find matching blood stem cells from a donor who carried a rare mutation that conferred resistance against HIV, he might be cured of HIV as well as of his leukemia.

Dr. Gero Hutter and Timothy Ray Brown
German hematologist Dr. Gero Hütter (left) reunited with his stem cell transplant patient, Timothy Ray Brown (right), during a visit to the Fred Hutch campus in 2015. Photo by Robert Hood / Fred Hutch News Service

Surprisingly, Brown’s tissue type matched with 267 possible donors, and when Hütter screened the 61st, he found one who also carried two copies of the so-called CCR5 delta 32 mutation. That missing strip of DNA code essentially disables a normal protein on the surface of immune cells that HIV uses like a trap door to break in. Once inside, it hijacks the genetic machinery of these cells to make copies of itself. About 1% of northern Europeans carry two copies of the mutation and are virtually immune to HIV.

Brown was 40 years old when he underwent the first of two transplants of blood-forming stem cells that carried the mutation, and he tested free of HIV ever since. It took a second, grueling transplant a year later to arrest his leukemia. He lived in the shadow of a potential recurrence of that cancer for 13 years.

“This is very sad news,” wrote Hütter, in an email from Berlin. He noted that a significant number of leukemia patients who have transplants will face cancer again, later in their lives.

“Timothy used these years since his diagnosis not only for his own purposes, but as hope and inspiration for all people living with HIV. He did this in his own style: unexcited, friendly, warm-hearted and well-informed,” Hütter wrote.

Brown moved back to the U.S. shortly after revealing his identify as the Berlin Patient. He continued to participate in HIV cure research, working with scientists still trying to puzzle out why the transplants worked for him. He relocated to Palm Springs, California, to live with his partner, Tim Hoeffgen, whom he met while both were living in Henderson, Nevada.

In a post to friends of Brown by Hoeffgen, he spoke of his friend’s zest for politics and travel. The couple was able to travel to Europe and Africa, including a visit with students at the Desmond Tutu HIV Center in Cape Town, South Africa.

“I’m heartbroken that my hero is gone,” Hoeffgen wrote. “Tim was truly the sweetest person in the world. Tim’s spirit will live on and the love and support from family and friends will help me through this most difficult time.”

Sabin Russell is a staff writer at Fred Hutchinson Cancer Research Center. For two decades he covered medical science, global health and health care economics for the San Francisco Chronicle, and wrote extensively about infectious diseases, including HIV/AIDS. He was a Knight Science Journalism Fellow at MIT, and a freelance writer for the New York Times and Health Affairs. Reach him at srussell@fredhutch.org.

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Last Modified, October 08, 2020