There are around 36.7 million people in the world living with HIV/AIDS. Since it appeared in 1981, 35 million have died from complications associated with the deadly autoimmune disorder, and another million or so are expected to be infected by year’s end. Countless fortunes have been spent on concocting a cure which has not materialized. There is one person, though, who has beaten HIV for good, a 51-year-old professional dog walker in Palm Springs named Timothy Brown. Between 2007, when a bone marrow transplant in Germany rid him of the virus, and 2010, Brown was known simply as the Berlin Patient. For reasons pertaining to his health, he had chosen to conceal his identity for nearly three years. Brown, who had lived in Europe for two decades working odd jobs, decided to reveal himself to the world after relocating to San Francisco. Back stateside, he had to adjust not only to life back home but to his new role as humanity’s sole HIV miracle.
At first, attention was intense. Brown’s email inbox overflowed with messages, many of them from HIV patients hoping to hear how he did it. He tries to respond to as many as he can but he cannot reach them all; currently he has around 100,000 unread emails. Since Brown’s transplant under a doctor named Gero Hütter, dozens have tried to replicate the procedure but none have found lasting success. Brown has been poked and prodded by countless researchers; his blood stored in labs across the globe, but how exactly his transplant cleared him of HIV remains pretty much a mystery.
Brown has become a leading advocate and spokesperson for the cause of finding a cure. When not walking dogs, exercising, or doing yoga in Palm Springs, where he recently moved, he attends HIV/AIDS conferences around the globe, often as a keynote speaker. In July, he will be bearing a torch for HIV survivors during the 22nd International AIDS Conference in Amsterdam. His existence gives hope to patients and researchers alike; he proves the possibility of a cure. We reached out to Brown to hear more about him and his advocacy work.
You are known famously as the Berlin Patient. But you’re from Seattle. What brought you to Germany in the first place?
I had taken a post-graduation Eurorail trip with two female friends in 1990. We started in London and went all over western Europe. I was gone for three months. When I got back to the US, at 24, I started working in banks. I grew bored with that so I quit and took on temp jobs. I didn’t know what the hell I was doing. I decided I’d move to Europe and picked Barcelona, which had been my favorite place I visited. In April 1991 I moved and stayed there awhile. At one point I lost my apartment in Barcelona and this guy I was seeing asked if I wanted to live with him in Berlin. I hitchhiked there. I worked for the British military as a translator then at a cafe near Checkpoint Charlie.
When did you find out you had HIV?
June of 1985. I had been going out with this guy for six months when he told me that he tested positive for it. He said that I should get tested; he was concerned about my health, though not really for his own. The doctor said my CD4 count was pretty low at that point, about 250, low enough to think that I had had HIV for a long time. She thought I should start treatment immediately. The next year, 1996, Protease inhibitor, an antiretroviral drug, came out and I started taking that. It made people who looked on the edge of death get better; it was like you got a new lease on life. Eventually, I was switched to a combination of three drugs and then was able to kind of forget that I had HIV. It just became, Okay I have it but I’m doing fine and feel healthy.
What made you take the step from being contently HIV+ to getting your fateful bone marrow transplant?
In 2006, I took a trip to New York to attend a wedding. The whole time I was very tired and didn’t know why. I thought it was jet lag but it continued back in Berlin. I saw a doctor and eventually, it was determined I had leukemia. I didn’t want to go to a hospital where there’d be a lot of stigma so he sent me to a university hospital in Berlin. I thought I’d do a round of chemo and the whole thing would be over. I’d be cured. But after the second round Dr. Hütter said he wanted to send my blood to a bone marrow stem cell blood bank to see if it had matches for my tissue type. It was just in case the chemo wasn’t effective, something to fall back on.
It ended up that there were way more matches for my blood then most people get–230 possible matches. That gave him the idea to look for a donor who was immune to HIV.
It ended up that there were way more matches for my blood then most people get–230 possible matches. That gave him the idea to look for a donor who was immune to HIV. He explained that 1% of northern Europeans have a gene mutation which makes them immune. Both parents have to have the mutation for the child to get it. Out of my 230 matches they hoped to find that donor. Eventually, they did.
I had the transplant in February 2007. The doctor’s theory was that if I got this transplant I would also become immune to HIV. I quit taking my HIV meds the day of the surgery. After it, I noticed physical effects. With HIV, I wasn’t able to gain muscle mass. But I was going to the gym every day and suddenly gaining muscle. I felt better. I was able to return to work. At first, after I stopped taking medication the virus went way, way up but then went down to undetectable levels. That took about three months.
You kept your identity a secret until 2010. Why?
My health, basically. I had to do a second transplant because the leukemia came back. I didn’t do so well after that one. My health was horrible. I had quit working before the second transplant. Then after the surgery, I had an episode of extreme delirium–mumbling and so on–and went back to the hospital where it was determined I should get a brain biopsy. Of course, they were worried that they’d find HIV or leukemia in my brain. They didn’t find either. However, the surgeons left an air-bubble in my brain. They did an emergency surgery and removed it. But having that there for several hours has screwed up my balance to this day. I walk like I’m drunk.
So the reason you decided to remain anonymous is because you were recovering?
Why then did you move back to the US?
Because I would either have had to go live temporarily in a home or find someone to take care of me at my home. I was basically bedridden, incontinent. I was in horrible shape. Through physical therapy, I was able to walk again. Then on Halloween of 2009 in Berlin I was out very late and got mugged, probably because I looked like an easy target. I was hit over the head and had my wallet stolen. I fell onto my left shoulder and hit my head on the ground. I got a concussion. It was kind of like having a stroke. I lost my ability to enunciate and had to do speech therapy.
That was a rough patch of years for you.
Yeah it was. But I’m on the other side of it and doing very well.
What has your advocacy work been like since returning to America?
My case is very important because it has proven that curing HIV is possible
My case is very important because it has proven that curing HIV is possible. I tell people that I don’t recommend curing HIV the way I did. It’s hard, expensive,and dangerous. It has been tried a few times but no one’s made it yet. And doing a stem cell bone marrow transplant is not something that can be done just for HIV because HIV treatment now is so good, it wouldn’t be ethical to do one on somebody.
Given how well managed HIV is today through antiretroviral drugs, do you think people are complacent about finding a cure?
Yes. I talked about that in a recent article I wrote. For HIV+ patients, a cure would mean they’d have to give up their benefits. Moreover, they’re doing fine on the medication so why do something that might kill them.
Do you sympathize with that view?
I do. But it’s disappointing. I was very disappointed after an HIV conference I went to recently in Seattle. It was something like 60% of the attendees who said that they really didn’t want a cure.
From a public health perspective, it is very important to find a cure. It’s way too expensive for governments and insurance companies to pay for HIV medication in the long term. It can really bankrupt smaller poorer countries. South Africa is a good example. At least twelve percent of the population is HIV+. That’s huge expenses. Not to mention the lives that are wasted.
How do you see your role as a public figure?
I won’t give up until a cure is found for everyone.
For people with HIV and their loved ones, I think I give them hope. I’m told by many, many researchers that I’ve inspired them.
No one has settled the debate yet over how you were cured. But how do you think you were?
I think the reason I’m cured is because I don’t have the CCR5 protein, which is absent from my body. I think that’s the main reason but there is still debate about that.
Are you hopeful that a cure will be developed in your lifetime?
Yes. I won’t give up until a cure is found for everyone. I have survivor’s guilt to a huge a degree. I’m the only person that’s been cured of it. I’m not a scientist but I do what I can to make sure the research goes on. I couldn’t sleep at night if I didn’t.