'Berlin Patient' HIV-free for 10 years
by Liz Highleyman
Ahead of the Conference on Retroviruses and Opportunistic Infections in Seattle, the man formerly known as the "Berlin Patient" marked 10 years of being HIV-free.
At a February 12 community workshop on HIV cure research in advance of CROI, former San Francisco resident Timothy Ray Brown, previously known as the "Berlin Patient," celebrated the bone marrow transplant he received a decade ago, making him the only known person cured of their HIV.
In 2006 Brown, then living in Berlin, was on antiretroviral treatment with well-controlled HIV when he developed leukemia that required bone marrow transplants. His doctor, Gero Hütter, had the idea to use bone marrow from a donor with a double CCR5-delta-32 mutation, meaning the stem cells were missing a receptor that most types of HIV need to enter T-cells.
Brown underwent intensive chemotherapy that killed off the cancerous immune cells in his blood – nearly dying in the process – and the donor stem cells then rebuilt a new immune system that was resistant to most HIV.
"[Hütter] paid attention in medical school and said this could make you free of both leukemia and HIV and you'd never have to worry about it again at all, but I didn't believe it," Brown said before he cut a cake presented by cure advocates, researchers, and community members. "It was a hard survival, but I'm here."
Despite 10 years of testing his blood, gut tissue, and everywhere else they could manage to look, researchers have not been able to detect replication-competent HIV anywhere in Brown's body.
"Brown is why there is a cure research effort," said Dr. Hans-Peter Kiem, from the Fred Hutchinson Cancer Research Center in Seattle, where Brown now lives. "He really inspired and launched this cure effort."
Brown said he doesn't miss depending on doctors for his survival.
"In a way it seems like yesterday, but in a way it feels like a long time ago that I had to take medications every day," Brown told the Bay Area Reporter. "That is the best part of my cure – not needing to take daily medication and not needing to depend constantly on my doctors for my survival."
But Brown, 50, has recently started taking another type of daily pill. Since the donor's stem cells were only missing the CCR5 receptor, Brown potentially remains susceptible to the small proportion of HIV strains that use a different receptor called CXCR4. For this reason, he revealed, he has started taking Truvada for PrEP.
"Recovery has taken too long, but I feel great and I am grateful for everything," Brown said. "I still hang on to the hope that everyone living with HIV will be cured in my lifetime."
But some fear that even as cure research advances, the benefits may not be available to all who need it.
"Timothy gives me hope, but there's also a lot of fear that when there is a cure it won't be available to everyone, and long-term survivors, women, and communities of color will be left behind," said Pat Migliore, who spoke on behalf of people living with HIV in Seattle. "Until there's a cure for everybody in the world, there's a cure for nobody."
Presentations at CROI will feature the latest news on HIV prevention, treatment, and managing its complications.
Dr. Susan Buchbinder, director of Bridge HIV at the San Francisco Department of Public Health, opened the meeting with a welcome to international participants and a denunciation of President Donald Trump's recent executive order – now suspended by the 9th U.S. Circuit Court of Appeals – restricting immigration from seven predominately Muslim countries.
"Diseases don't stop at national borders and neither must efforts to combat them," Buchbinder said. "More than ever, science is a global collaboration. We believe that one important form of resistance to policies like this is to fully participate in meetings that are international, such as CROI, and to say at every opportunity that we will not be divided from our colleagues, our patients, or our communities by unjust governmental edicts."
Scientific presentations at CROI were ongoing as the B.A.R. went to press and highlights will be reported in a future issue.