Timothy Ray Brown
The ‘Berlin patient’, whose bone-marrow transplant made him the first person to be cured of HIV
TIMOTHY RAY BROWN, who has died aged 54, was known to science as “the Berlin patient” and was the first person believed to be cured of HIV. Brown was studying in Berlin and working in a café in 1995 when he was diagnosed as Hiv-positive and prescribed antiretroviral therapy, the standard cocktail of drugs designed to hold the infection in check.
But things changed dramatically in 2007 when he was diagnosed with acute myeloid leukaemia, an extremely virulent form of the disease, carrying a high mortality rate.
His doctor, Gero Huetter, an oncologist and haematologist, made a radical suggestion: that he should be given a bone-marrow transplant using cells from a donor with a rare genetic mutation known as CCR5 delta 32. Scientists had known for a few years that this gene mutation had proved resistant to HIV.
Since a bone-marrow transplant basically involves killing off the patient’s defective immune system with radiation and chemotherapy, and replacing it with one from a donor, Huetter wondered if using a donor with the protective mutation might rid Brown of HIV at the same time as it cured his leukaemia.
Out of more than 2.5 million people in Germany’s donor registry, Huetter found 267 tissue matches to Brown – and one person who also carried the mutation. But the benefits from the first transplant, carried out in 2007, did not last, and Brown’s cancer returned.
Although the donor agreed to a second transplant, Huetter warned Brown there was a high likelihood the procedure would kill him – and it nearly did. “I became delirious,” Brown recalled. “I couldn’t walk and I was incontinent.” He nearly went blind and was almost paralysed.
“I eventually learnt to walk again at a centre for patients with extreme brain injuries,” he recalled. Brown spent most of 2008 in hospital. But every time Huetter tested him for HIV, the tests came up negative. Brown was taken off his antiretrovirals.
No subsequent tests detected the virus anywhere in his body and most Aids experts agreed that the cure was genuine, though some suspected that the virus might still be lurking in some cells. Brown himself did not believe he was cured until Huetter published a paper about the case in the New England Journal of Medicine in 2009.
“At that point I thought, medical scientists are accepting it, so it must be true,” he said.
Timothy Ray Brown was born in Seattle on March 11 1966 and moved in 1993 to Berlin, a city, he explained, where “people who are gay are very open and people were very accepting of people with HIV.”
After his transplant he returned to the US, eventually settling in Palm Springs. There he became involved in volunteer work at the Desert Aids Project and served on the board of Let’s Kick ASS (Aids Survivor Syndrome). In 2012, Brown announced the formation of the Timothy Ray Brown Foundation in Washington, dedicated to searching for a cure for HIV/AIDS.
Although a second man, Adam Castillejo, aka the “London patient”, is believed to have been cured by a transplant similar to Brown’s in 2016, donors with the right gene mutation are scarce and doctors say that the procedure is too expensive, complex and risky to be widely used.
Earlier this year Brown revealed that he was terminally ill from a recurrence of the cancer (though not the HIV) that had led to his earlier bone marrow transplant.
“I’m still glad that I had it,” Brown said of his transplant. “It opened up doors that weren’t there before.”
He is survived by his partner Tim Hoeffgen.
Timothy Ray Brown, born March 11 1966, died September 29 2020