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Forget the 'Berlin Patient' and meet Timothy Ray Brown
Extended for the online edition of Windy City Times
by Sarah Toce

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Timothy Ray Brown didn't seek fame. In fact, it was quite the opposite. Brown, originally from Seattle, Washington, was enjoying his youth—meeting friends, experiencing life via various sexual partners, making his way through university—when the unthinkable happened. He contracted the HIV virus.

Surely you've heard of Brown. No? Let's try another name: the "Berlin Patient." Now have you heard of him? We thought so. That's because Brown (a.k.a. the "Berlin Patient") was the first human ever functionally cured of his HIV-positive status. And therein lies both the blessing and the curse for the man who stumbled into an accidental life in the spotlight.

Windy City Times: In your own words, please tell us how you contracted HIV.

Timothy Ray Brown: I believe I contracted HIV in Barcelona, Spain through unprotected anal sex with a male partner. I am actually not completely sure that is true because one time during passive anal sex a condom broke.

WCT: What was your life like before the diagnosis?

Timothy Ray Brown: Before moving to Europe, I took part in several ACT-UP Seattle demonstrations even though I was not yet HIV-positive. One was a demonstration at a Nordstrom Fashion Show at the Seattle Sheraton because Nordstrom had fired a salesman because he was HIV-positive. This was my first small taste of HIV and AIDS activism. Although I have always been politically concerned and aware, I did not get back into that until I was cured even as an HIV-positive person.

I decided in 1990 following a trip around Western Europe and Greece with two female friends of mine that I wanted to live in Europe. One year later, I moved to Barcelona with a good friend from Seattle and worked as an English teacher. After moving to Barcelona, I took a month-long trip to Berlin, Germany, returned to Barcelona, lost my room in my apartment there and ended up moving to Berlin.

I had always been rather sexually active; I just enjoyed sex. When not using a condom for anal sex as a passive partner, I would always ask my partner not to ejaculate inside of me. That always worked except once in Barcelona.

WCT: How did you learn you were HIV-positive?

Timothy Ray Brown: I worked for the British Military until I moved back to Barcelona because of a relationship with a German man who wanted to live in another large European city. I worked again as an English teacher. When I moved back to Berlin by myself about a year later, I started working at a Cafe Adler at Checkpoint Charley (former border crossing point between West and East Berlin). I took a university preparation course of studies in German to be able to attend university in Germany.

About one week before I finished, a former partner, Joerg, told me that he had tested positive for HIV and suggested that I should also get tested. I had tested regularly in Seattle before moving to Europe and had always tested negative. I got tested and it was positive.

WCT: How did your life change post-diagnosis?

Timothy Ray Brown: My first HIV specialist at the clinic talked me in to starting AZT directly post-diagnosis. She prescribed a very low dose of it due to my concerns about it. I would look for men who appeared HIV-positive to me because pre-HAART, they were much more obvious than they are today. I certainly did not want to be responsible for infecting anyone else. I started university as planned. I met my long-term boyfriend in December 1996. We became extremely close and stayed together until January 2008. I remained monogamous for the first two years but then I could not do it any longer so I would secretly have sex on the side. I quit university and later started working as a German to English translator because my knowledge of German had become very good. The ARVs that I took once combination treatments began becoming available in 1996 allowed me to live a relatively normal life with an almost normal life expectancy.

WCT: You have been recognized as the first person to ever be functionally cured of HIV. Could you explain, essentially, what this means?

Timothy Ray Brown: I was the first formerly HIV-positive person in the world to have his entire immune system replaced by one from a donor who is immune—or at least highly resistant to HIV. I have been poked and prodded from head to toe, had biopsies done of my gut, brain tissue and lymph nodes as well as my blood tested hundreds of times. No sign of HIV has been discovered anywhere. I no longer have any antibodies to HIV. I am told that I am not only functionally cured but also have a sterilizing cure although the former would be enough to end HIV because, on a larger scale, patients would no longer require medication.

WCT: How does one carry that status without feeling isolated within his own community?

Timothy Ray Brown: When conversing with people, I show a complete attachment with the HIV-positive community. I was HIV-positive twice as long as I have been cured. I definitely understand being HIV-positive. I refuse to lose that feeling and empathy. I may not completely keep up with the available medication at any given point. My boyfriend is HIV-positive so I talk to him about this all the time. Most of my male gay friends are HIV-positive. I feel completely connected with POZ people.

WCT: Where did the name "Berlin Patient" originate?

Timothy Ray Brown: Because I was having difficulty recovering after my second stem cell transplant, I was not ready to be open to the public about who I was. Medical scientists were discussing my case and needed a way to talk about me without using my name. I remember agreeing to do an interview with Die Welt, a German New York Times-style newspaper. I told the professor of Oncology that I did not want my real name used; nor did I want photos to be taken of me or used.

On a side note—a bit off subject, the reporter asked me if I had sex with anyone since the transplant. I told him that I had unprotected anal intercourse with an HIV-positive friend. The professor said excitedly that this was proof that the transplant had worked and that I was now immune to HIV. Since then, I have learned that people with undetectable viral loads are highly unlikely to transmit HIV.

WCT: How did you/do you feel about being referred to the "Berlin Patient?"

Timothy Ray Brown: Considering the fact that I am not German and not from Berlin but rather Seattle, I prefer people to refer to me by my name: Timothy Ray Brown or Timothy for short. That was the principle reason to name my non-profit The Timothy Ray Brown Foundation rather than using another name for it.

WCT: Naysayers have speculated in recent history that your HIV status is positive, thus debunking your statements to the contrary. What might you say to them now?

Timothy Ray Brown: Like I have pointed out, almost every part of my body has been biopsied, including my brain. My blood has been tested countless times. No researcher has found any living replicable virus anywhere in my body. The proof that I have been cured is in that I have never taken any HIV medication since my first transplant February 6, 2007. My T-cell level (CD4 count) has continuously increased to that of a person who never had HIV. The US National Institutes of Health (NIH) can verify that I am cured.

WCT: Since your two bone marrow transplant surgeries for leukemia treatment in 2006 and 2007, two other HIV-positive men may have been cured of HIV, according to reports. Is this progress, in your opinion? Should it continue to be a method of treatment and, ultimately, a cure?

Timothy Ray Brown: I believe that this is definitely progress. I am not doing this just to be famous for being the only person to be cured. My message is that I want all HIV-positive people in the entire world to be cured of this disease. The cure of these two is a start but I want many others to follow. My cure was expensive and dangerous. I am blessed to still be here. Dr. Gero Huetter, the oncologist who had the idea to look for a CCR5 Delta 32 negative donor and replace my immune system with that donor's immune system told me last year that prior to my second transplant, statistically I only had a 5 percent chance of survival. Therefore, I believe that my case represents a proof of concept that a cure is possible.

Dr. Huetter told me in December 2010 that he had tried to replicate my case on a dozen further patients. None of the patients survived succumbing to the effects of their primary illness like leukemia, lymphoma or other serious blood conditions. However, my case has raised the hopes of other possible less expensive possible treatment or even cures. Prior to my cure, the word cure in relation to HIV really was considered a four-letter word. Afterwards, medical scientists dealing with HIV actually believed that HIV can be cured and are looking for a cure.

WCT: What do you feel about PrEP [pre-exposure prophylaxis]?

Timothy Ray Brown: At first, I thought that we should not "waste" money on treating HIV-negative people while many HIV-positive patients do not have access to life-saving medication. However, my thoughts on PrEP have evolved to thinking that it is important to stop this disease in any way possible. If PrEP is successful in preventing just one HIV infection, then it was worth the funds for it.

WCT: Shouldn't we be further along already than we are now?

Timothy Ray Brown: Yes, we should be further along. Unfortunately, funding amounts for cure research are too low in this country. Promising and motivated young medical researchers are not able to find work. Biotech companies are not able to afford to pay scientists. Most of the research that is done in this country is publicly funded on the federal or state level.

Nevertheless, progress on HIV has gone comparatively quite rapidly as opposed to other diseases such as polio. We managed to take it from a rapid death sentence to a manageable disease in a couple decades and now we have the first cure of it with more to follow. This may not be of any consolation to people who have lost loved ones or are lying on deaths bed without any viable treatment. I am deeply troubled about that but medical science is making progress!

WCT: In 2012 at the XIX International AIDS Conference in Washington, D.C., you publicly announced the Timothy Ray Brown Foundation. Was it important for you to give back to the HIV/AIDS community? What was behind the initiative to create this organization?

Timothy Ray Brown: During my time in recovery, I began to realize how amazing my case was in bringing back the desire by the medical scientific community to find a cure for HIV along with other diseases which could benefit from a better understanding of stem cells and how they work. I was encouraged in my college course in 1985 that all diseases would someday be curable through the use of stem cells. I believed that. Once I made the decision to release my name and image to the media, I began traveling in North America and Europe to tell my story and show people that a cure for HIV is possible.

I met Dave Purdy and Chad Johnson of the World AIDS Institute in Washington, D.C. in June 2012 and told them that I wanted to step out as a leader to advocate for the cure of HIV. We decided together that we would do make an announcement during the XIX International AIDS Conference in Washington, D.C. in July 2012. The planning began.

WCT: Have you ever felt negatively about being the only cured HIV-positive patient in history?

Timothy Ray Brown: Initially, I had a feeling of guilt of being the only person cured of HIV. Whether intentional or not, I felt a sense of envy from a couple of my friends who were still HIV-positive. My decision to start the Timothy Ray Brown Foundation was in part my desire to deal with this sense of guilt, whether it was rational or not.

WCT: What are some initiatives on the docket for the Timothy Ray Brown Foundation in the remainder of 2013 and going into 2014?

Timothy Ray Brown: I have been invited to speak at the XX International AIDS Conference in Melbourne, Australia in July 2014. Leading up to that, the Timothy Ray Brown Foundation of the World AIDS Institute started a Cure Coalition in order to allow our followers to get involved in our efforts to promote a cure for HIV. We are also looking to support institutes and organizations such as Fred Hutchinson Cancer Research Center which are at the forefront in the search for an HIV cure. A large sum of donations collected will go directly to the Center. This is the first of several of these sorts of events.

The second one will be in Boise, Idaho, in October. I will be doing an interview for the Australian public broadcast company ABC. Their U.S. interviews for a feature story on the search for an HIV cure are being done in Washington, D.C. in mid-July of this year. In November 2012, I will be giving a keynote speech in San Francisco for the London-based transitional science institute Cell/The Lancet. Other events are still in planning.

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