An anonymous stem cell donor cured Timothy Ray Brown of both his leukemia and his HIV. For years, experts wondered whether it was a cure or just a temporary remission.
It’s been 11 years. Brown is still HIV and cancer-free.
Brown, 53, is now frequently asked to speak around the world to scientists, people with HIV and everyone else curious about his experience. Once referred to only as the “Berlin Patient,” Brown’s identity is no longer a mystery and at events in Vancouver this week, he is the inspiring guest speaker.
Before talking to scientists affiliated with the B.C. Centre for Excellence in HIV/AIDS, Brown said in an interview that he keeps pushing researchers and physicians to think outside the box. His physician did in 2007 when Brown was an American living in Berlin and diagnosed with acute myeloma leukemia. To complicate matters, he had HIV.
Fortuitously, he was referred to a blood specialist named Gero Hütter who would become Brown’s “saviour” by trying a novel approach after initial treatment with chemotherapy failed. Hütter searched for a registered donor who was both a tissue match for Brown and a double carrier (inherited from both parents) of a gene called the CCR5-delta 32 mutation. Those with the mutation are resistant to HIV, a discovery made in the mid-1990s at the U.S. National Institutes of Health.
Only one per cent of Northern Europeans have such a mutated gene, but Hütter found a donor in the registry without too much difficulty.
Brown, who was born in Seattle but now lives in Palm Springs, has no idea who the donor is except he was a German going to university in New York City who flew to Germany when called on to donate his stem cells.
“All I know is he flew back to Germany twice and saved my life. I don’t even know if he knows that. Or if he knows that he’s immune to HIV. But he also changed science forever.”
Brown said the donor returned to Germany the second time, after his cancer returned. “The HIV was cured after the first transplant, but the leukemia was more difficult to get rid of.”
Brown had two stem cell transplants, plus radiation and chemotherapy. The process, which involves destroying the patient’s immune system to allow transplanted stem cells to grow, nearly killed him and he says he “wouldn’t wish this on my worst enemy.”
Because of the harsh side-effects, the process is not considered a cure for HIV. But it has been tried in other individuals with dual diagnoses of cancer and HIV. In London three years ago, for example, a patient had a similar treatment and is now believed to be the second person cured of both leukemia and HIV.
Brown said about six years ago, he spoke to a 12-year-old American boy and his mother about the treatment. “I believe he was born with HIV and when he got cancer, a donation was offered to him, but he died from complications.”
Dr. Zabrina Brumme, director of the laboratory program at the B.C. Centre for Excellence in HIV/AIDS, said the death rate from such transplants can be as high as 40 per cent, so “it’s not a therapeutic strategy that can be broadly rolled out to a large number of people.
“It’s neither safe nor scalable on a mass level. But for Brown, he was going to die without it and he had a pioneering hematologist who had an inspirational idea.”
Brumme said Brown’s experience helps raise awareness and hope.
“His visit to Vancouver is another opportunity to keep researchers and those with HIV engaged, to keep dialogue up, to remind people that HIV treatment has come a very long way. There is still no cure and no preventive vaccine, and a lot of unresolved social issues like stigma and discrimination we need to talk about. But there are excellent therapeutic options which enable people to live a normal life with no risk of transmitting if suppressed on therapy,” she said.
Brumme said there are many dozens of researchers across B.C. working on biomedical science that may one day lead to a cure for HIV, which today is normally controlled with drugs.
Brown said he still keeps in touch with Hütter and they have talked about writing a book together. Hütter wrote a case study about Brown and submitted it to the New England Journal of Medicine in 2008. It was initially rejected because editors were skeptical, Brown said. Only after the Wall Street Journal and the New York Times wrote stories about his case did the journal finally publish it.
Asked how he celebrated his cure, Brown said he suspended belief until it was published in the medical journal.
“When it was published there, I finally believed it.”
In 2010, Brown gave up his anonymity.
“I decided to become the face of the cure. Ever since then, I have been on the road,” Brown said, adding that the small fees he earns for giving speeches help pay his rent and bills.
His message to medical researchers is often the same: “Keep trying to find elusive cures, don’t give up.” And to individuals with HIV: “Make sure you take your meds because one day a cure will come.”