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The ‘Berlin Patient’

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Hopeful for a cure: Timothy Brown (third from right) joins (l–r) Kyle Hubregtse, Pahl Samson, Juven Jacob, Stephen Farrish, and Beau Miller at a lecture sponsored by LIVE Consortium. Brown was the guest speaker for the event.

Did Timothy Brown’s treatment for leukemia rid him of HIV?
by Timothy Baker • Photos by Dalton DeHart

Timothy Brown

Timothy Ray Brown, aka “The Berlin Patient,” is the first person to be declared cured of HIV. A Seattle native living in Berlin until his recent move to San Francisco, he was diagnosed with leukemia in 2006 while living with HIV. Timothy underwent an innovative treatment for his cancer that resulted in not only a remission of his leukemia, but also having HIV completely eliminated from his body.
We were happy to have Brown speak on September 22 in Houston at two HIV-cure advocacy lectures sponsored by LIVE Consortium for the LGBT community and doctors at Baylor School of Medicine. His speech moved many in the audience to tears as they heard about his struggle and triumph. At the end of the speech, he was made an honorary citizen of Houston by Mayor Annise Parker. Following is a short interview with Brown.

Timothy Baker: Welcome to Houston. Is this your first time here?
Timothy Ray Brown: Thank you. No, I was here for about five months in the ’80s. I got pulled over by a police officer for speeding. This time I was made an honorary Houstonian. I like Houston now. [Laughs]

I’m glad we could change your mind. Timothy, I understand that you had leukemia and HIV, but now you don’t have either.
Right. I was diagnosed HIV-positive in 1995 when I was a student in Berlin. I really thought I would be dead in a few years. Fortunately, new medication treatments became available the next year. Between that and the German healthcare system, I had a pretty normal life. Then in 2006 I was diagnosed with acute myeloid leukemia.

How did you handle that?
It was a shock, but the doctor who diagnosed me admitted me to the university hospital the next day. I got lucky again, because that’s when I met Dr. Gero Huetter, a young doctor who was going to treat my cancer.

Was he an HIV specialist too?
No, but he knew about the research in CCR5 T-cell receptor mutations that keep people from getting infected with HIV. Some people are just born with the mutations. He had the idea of giving these special T-cells to HIV patients to see if it would help get rid of HIV.

So he just gave you new T-cells?
No, it wasn’t that easy. To do what he wanted to do, he had to give me a stem cell transplant from a donor who had the CCR5 mutations. But this donor had to have cells that were compatible with mine and also have the CCR5 mutations. Only 1 percent of the population in Europe is this lucky. It took him a while to find one of those people who was willing to donate. He then gave me chemotherapy and radiation to kill my body’s immune system so that the donor’s immune system could take over my body. A transplant is not the first treatment for leukemia because it is so dangerous. I had already had chemotherapy months before, but I got really sick and had to stop, so my leukemia came back. He knew this was my last chance to survive, so why not take the chance and do something like this that had never been done before? I said yes.

Then he did the stem cell transplant?
Yes. They gave me a special pre-transplant chemotherapy, irradiating my whole body and then giving me the stem cells that had the CCR5 mutation.

Did you stay on your HIV medications?
No, I stopped my HIV medications the day of the transplant. Five-and-a-half months after the transplant, there › wasn’t any detectable HIV in my blood, but there was some in my old immune cells—macrophages left with HIV in biopsies, which disappeared later. The donor’s immune system took over my body. I have been cancer- and HIV-free for almost five years now.

So you’ve been without any sign of disease since then?
My leukemia came back the year after my stem cell transplant, but not my HIV. Dr. Huetter gave me another stem cell transplant, but I had some complications. I became delirious and he had to biopsy my brain. It has affected my thinking. Some friends tell me I say things I didn’t used to say. I used to love dancing, but I don’t anymore. I have some physical problems, too.

How can they be sure you are cured of HIV?
The doctors can’t find HIV anywhere. My brain, gut, and liver biopsies showed no HIV. I have had repeated biopsies of my intestines, and they keep checking my blood but they still can’t find any HIV. And I hope they’re not going to. It’s been five years and I’m considered cured of HIV.

What has it been like being cured of HIV?
It is nice not to have to take HIV medications anymore. At first I didn’t let anybody know that I was “The Berlin Patient.” What do you do with that? Then I got the big picture. Even with the problems I now have, it’s been worth it because more researchers now believe that a cure is possible and they’re working on it. I want people with HIV to realize that a cure for HIV is possible, and they can be part of making that happen. Clinical trials for new HIV treatments are coming and will need volunteers. I am now speaking around the U.S. and overseas to raise awareness so that we can advocate for funding of researchers who are thinking outside the box, like my oncologist in Berlin did.

So, will we see you in Houston again in the future?
Houston has been the warmest city—weather- and people-wise—for me. I really feel at home here and now have good friends. Hopefully, Houston will become a center for HIV cure research and I can come back for more advocacy work, and to have great Tex-Mex food and margaritas with my friends.

For more information on Timothy Ray Brown, please visit powerusa.org (click on Cure Advocacy).

Dr. Timothy Baker is a Houstonian, a board member of Program for Wellness Restoration, and a friend of Timothy Brown.

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