September 5, 2012
Welcome to This Positive Life! We have with us Timothy Brown, known to the world as the "Berlin Patient" or the first man cured of HIV. Timothy was diagnosed in 1995 at age 29 while studying and living abroad in Berlin. Yet the worst had yet to come. In 2006, he was diagnosed with leukemia. Enter Dr. Gero Hütter, who introduced the novel idea of transplanting stem cells from an HIV-resistant donor and the rest is history. Today, Timothy is HIV negative and continues to protect himself from becoming reinfected. He is an active HIV advocate and has even established the Timothy Ray Brown Foundation, the first and only organization with the sole mission of finding an HIV cure.
Olivia Ford: Can you start by describing how you found out you were HIV positive, originally, and where you were at in your life at the time?
Timothy Brown: I traveled around Western Europe and Greece in 1990, for three months with friends, and went back to Seattle, where I was working in banks, and decided that banks weren't my thing anymore. I needed out of there.
I thought living in Europe would be good. So I decided to move to Barcelona and started looking for jobs as an English teacher, and found one at a summer camp. That was fun. It was pine nut season, and we had to teach outside, with blackboards and picnic tables. The kids would pound on pinecones to get out the pine nuts. That was very distracting, so it was practically impossible to actually teach.
Then I made a lot of money there and I was supposed to meet friends in Prague. But I wanted to stop in Berlin, first of all. So I went up to Berlin. This is back in the days without cell phones, except those huge ones. But I didn't have one because they were very expensive.
My friends were supposed to call me, but never got a hold of me. So I ended up staying in Berlin for a month. I met somebody, and he came down to Barcelona to visit me. Then, through a series of incidences, we ended up moving into this place in Berlin. So that's how I started living in Berlin the first time.
At that time, I worked for the British military, at first as an assistant chef (only chopping vegetables and things like that, nothing big), and then, eventually, as a waiter at a hotel for British military people and their families. I did that for a while. Then I met somebody else, and we ended up moving.
I decided to go back to Berlin and try to get into university there because universities are basically free in Germany and they love foreigners, which kind of may sound strange considering the history.
I went back there and started working on learning more German, took intermediate German courses, and passed those. Then I was told that I had to do this course of studies, which were math, history, macro- and microeconomics. There were all sorts of things in German because the students were from all over the world. I did that and that allowed me to get into university. I applied in Berlin, and also Potsdam, which is right next to Berlin. I got into what's called Freie Universität, which means "Free University," in Berlin, and started studying there.
While I was finishing up the course of studies -- that was in 1995 -- I tested positive for HIV.
Olivia Ford: This is while you were studying in Berlin, doing this course of study.
Timothy Brown: Yeah.
Olivia Ford: How did you come to be tested?
Timothy Brown: I had been tested in Seattle the last time, in 1990, before I left. Didn't get tested for a while. Then a friend of mine who I had had sexual intercourse with, told me that he tested positive. He thought that I should go get tested. So I did and my test was positive.
Olivia Ford: What year was this?
Timothy Brown: 1995.
Olivia Ford: How old were you at the time?
Timothy Brown: I was born in 1966, and that was --
Olivia Ford: Twenty-nine?
Timothy Brown: Yeah, 29.
Olivia Ford: What did you think? And how did you feel when you first heard that you were HIV positive?
Timothy Brown: It was horrible because at that time it was basically a death sentence. And my doctor wanted me to start treatment immediately, because my CD4 cells were down pretty low.
The whole time I was in Germany I had access to health care. When I did start taking HIV medication, at first, it was Retrovir (zidovudine, AZT) alone. I was very afraid of AZT because I knew that people had died from the medication itself, apart from dying because of the disease. And I didn't want to take it.
She convinced me to take low doses of AZT. So I took that for a while. Then luckily a miracle happened in 1996 and the protease inhibitors came onto the market. So I was able to take those. Several medications came on the market shortly thereafter, and I was able to take those. I did very well on the medication for years, for 11 years. I actually did take a drug holiday for about two years. I had thought of suggesting that to my doctor, and he actually suggested it to me on the day that I wanted to suggest to him that I do it. And he said for about six months, which turned into about two years, before I needed to take the medication again.
Olivia Ford: What led you to take the medication again?
Timothy Brown: My viral load had gone up. It had been undetectable for a while, and my CD4 counts climbed. I believe they got below 300 which, in the United States, means that you legally have AIDS.
Olivia Ford: A clinical AIDS diagnosis.
Timothy Brown: Clinical AIDS, yeah. It's different in different countries.
Olivia Ford: How was your health after you stopped the drug holiday and started taking the medication?
Timothy Brown: It basically got better again. Actually, I felt very good those two years that I didn't have to take the medication. I got tested quite often, and my doctor said I should take the medication again, so I did.
Oh, yeah -- this was before the drug holiday -- I was taking Norvir and it made me very ill, nauseous. I quit taking it, all of a sudden, on my own. And my doctor got very angry at me. Like, "Probably, you screwed up your whole regimen." Luckily, I didn't have any resistance from not taking it.
Things went on until 2006, and then I went to New York to go to a wedding of friends of mine. It was two men that got married -- not legally, because it wasn't yet legal in New York. But it was a nice Jewish wedding with a chuppah and a rabbi. It was nice. Unfortunately, I felt awful the whole time, very low energy. I thought that it was jetlag. Also, the person I was staying with, a friend of mine, was up all night. And I was sleeping right next to his computer, and I would hear click, click, click, click, and I couldn't sleep. So I thought it was that.
Then I went back to Berlin, and rode my bicycle to work, which I did practically every day when it was possible. I was slower than usual. I got to work and my boss got angry at me, and I said I just didn't feel well.
At lunchtime, I rode my bike halfway to a place that I wanted to eat at, and I had to stop halfway through. I got off my bike and called my partner, Michel, and said, "I'm not feeling well. I don't know what's wrong. I don't have any energy. I think I need to see a doctor."
He tried to make an appointment at my doctor, but they said, "It will be several days." So he called up his doctor, who was also an HIV specialist, and his doctor said, "Yeah, bring him in tomorrow."
I went there the next day. They took a blood test and determined that I had anemia, very low red blood cells, and that I needed to get a transfusion. They got a couple bags of red blood cells for me, and I got those. The levels of red blood cells would go up and then fall, pretty rapidly.
Olivia Ford: When did they discover what was going on?
Timothy Brown: It took about five days. And then he said, "I think I need to refer you to an oncologist."
I went to the oncologist, and he did the same thing. He gave me red blood cells. He said, "I don't think this is anything serious. My gut feeling tells me that this isn't anything real serious like leukemia, or lymphoma, or Hodgkin's disease." But he did a bone marrow biopsy, which is horribly painful. They drill into your back above your tailbone, and pull out small quantities of fluid. And it hurts like you can't believe.
He did that, and I went home. That was a Friday. I had an appointment for Monday. I went in there that Monday, and he said, "I guess I was wrong. My gut feeling was wrong. You have acute myeloid leukemia."
That was a huge shock. That was worse than knowing that I had HIV, even though when I found out I had HIV I thought that was a death sentence. Because I knew that leukemia had to be treated very quickly. They did a test of how much of my blood had been taken over by the leukemia. The leukemic cells had replaced most of my white blood cells. So I was in bad shape.
Anyway, he was like, "You need to go to the hospital." I asked him where he thought I should go, and where I could get the best treatment, and where they wouldn't throw out the stigma things on me.
Because my partner at that time -- he has hepatitis B -- had been in a city called Halle, it's south of Berlin. He had acute liver problems and got taken to the hospital, and heard things like, "Don't touch him. He's got AIDS!" Horrible things like that. I didn't want that.
He said, "OK, we'll call this one hospital" -- where he had worked at before, and that I should go there. It wasn't too far from my house. He called them up and got Dr. Gero Hütter on the phone, who ended up being my savior.
Olivia Ford: Were you connected to a community at this time? Were you surrounded by other people who were living with HIV? Did you have support around that, and support when you were getting treatment?
Timothy Brown: I had friends who were HIV positive. And basically, as sex partners, I searched for people that were also HIV positive because I didn't want to be responsible for infecting anyone and continuing the cycle.
Actually, at the time when Kaposi [sarcoma] was big, a lot of people had it, I had actually looked for people that had noticeable signs of Kaposi, because I knew that they were positive. It was kind of weird. I was kind of into touching it.
Olivia Ford: Really?
Timothy Brown: Yeah, yeah. That may sound strange.
Olivia Ford: No, it doesn't sound strange. Why do you think that is, though? Just as a connection, or just to see what the lesions feel like?
Timothy Brown: For the connection, yeah.
Olivia Ford: That doesn't sound strange at all. But when you were going through treatment, did you have people who were supporting you?
Timothy Brown: Definitely. Yeah. in 1996 I met this man named Michel Dessner -- he's out to the public so people know the name. I found out that he was positive as well, and we ended up being together for 13 years. That's my longest relationship, until now.
He was a big part of my support network. I wasn't really into groups. I didn't really like them. I think I was too shy. I'm not anymore.
Olivia Ford: How were you told, basically, that it seemed as if you were functionally cured of HIV? And what was your reaction? Was it a sudden moment? Were you told, in a way? Or did you know that this was something that was coming?
Timothy Brown: I think I asked about it because that had been like the major part of Gero Hütter's study. I was a guinea pig. I was, like, "OK, I might get cured."
I just heard recently that I was basically cured three months after my stem cell treatment. I can't remember how long after that I found out.
Basically, I knew that Gero Hütter was working on publishing a paper about the case through The New England Journal of Medicine. So I asked him about that. And it was rejected at first (Jeff Laurence gives a different account).
Gero told me that he refused to change the article, and just turned it in the way that he had already turned it in. I think he wrote back, "No," he's not going to do it, not going to make changes, because he thought it was perfect. And they eventually accepted it.
I don't think I kept up on that, but I don't think I really believed it until the article was published.
Olivia Ford: And how did you feel then?
Timothy Brown: Great. Well, I was more interested in my recovery. After the first transplant, I did very well. I went back to work. I kept going to the gym, and got in really good shape. I liked my body for the first time in my life. But after the second one, the second one didn't go as well. And I had a lot to do to recover from that. So I wasn't as concerned about the clinical things.
Olivia Ford: Fast forwarding through the period of time in which us, out in the world, knew you as "the Berlin patient," and then eventually you came out with your name, and you became a public person in the community. I'm wondering, have you ever experienced any negative responses or negative backlash from individuals in the community when you go out into the world? Does anyone ever react negatively to meeting someone who's been cured of what they live with?
Timothy Brown: Not really. The patients, they tend to love to meet me. I did have one scientist, who I thought was my friend -- he had treated me very well when I met him, and took care of me while I was there -- but afterwards, he wrote this really sensationalistic article, and also pretty much a very sensationalist blog. After he was criticized by other scientists. He defended it, saying that he had the right to do that. And that hurt me. I was hurt by that.
Olivia Ford: What's the best response you think you've ever gotten from someone out in the community when they meet you or when they hear who you are?
Timothy Brown: I was told yesterday by Rep. Nancy Pelosi that I am her boss, which was lovely. She is actually my rep in my district, that's our connection. And she's a very important person because she was Speaker of the House. Now she's the minority leader. But it was a very nice comment.
Another comment was from a Republican -- not my party. He said that, "People talk about preaching to the choir; you're the conductor." That was beautiful.
[Timothy's partner, Ralfka Gonzalez, joins in the conversation.]
Ralfka Gonzalez: I'm Ralfka Gonzalez. I'm an artist, a painter. I have a children's book out called My First Book of Proverbs. I was born in San Antonio, Texas, but I've lived in Philadelphia. I've had public art in Philadelphia at the Convention Center; San Francisco; Oaxaca, Mexico; Albuquerque, New Mexico and Chicago for a little bit.
Olivia Ford: Tell me how you've come into the life of this gentleman here.
Ralfka Gonzalez: We actually met on someone's Facebook blog post. I thought he was in Berlin, you know? We met at the Main Library in San Francisco and had some coffee. Then a week later we went to the "Hunky Jesus" Sisters of Perpetual Indulgence contest in Dolores Park. He surprised me by kissing me. And it's all been crazy since then -- since I'm positive, and he's negative.
Olivia Ford: Timothy, how is it for you to be in a relationship with someone who is positive when historically, since you've been positive, you made that choice, but now you're ostensibly an HIV-negative person? How does that change your relationship?
Timothy Brown: Well, originally, I thought that I was immune to all kinds of HIV, because that's what one doctor told me. So we didn't worry about that. The last relationship I was in, the other person was negative. So we didn't really worry about that, either.
Since then, I have been concerned that I could get reinfected. In Philadelphia, I came across female condoms. So we started using those, and they're great.
Olivia Ford: Good plug there for female condoms.
Ralfka Gonzalez: Yeah. Female condoms rock.
Olivia Ford: Awesome. That's good to hear. So, now, tell me a little bit about the Timothy Ray Brown Foundation, and what your vision is, as far as what the search for a cure, and eventually finding a cure, is going to look like.
Timothy Brown: We grounded the Timothy Ray Brown Foundation with the help of the World AIDS Institute. It's the only foundation in the entire country that has ever had the cure of HIV as its primary reason for existence.
I hope that everyone in the world who is afflicted by this disease can be cured of it, no matter where they live, no matter what their socioeconomic background is, no matter what their color is, their sexual orientation is. I want everyone to be cured.
Ralfka Gonzalez: He's insisting on a cure in my lifetime, and his lifetime and your lifetime.
Olivia Ford: Thank you so much for doing that. Let me ask you this: If you could change one thing about the past several years of your experience with being out in the public as the first man to be functionally cured of HIV, and all of your experiences with that, what would it be?
Timothy Brown: I haven't always been treated the way that I should have been by some organizations -- I won't name them -- but a lot of times, they don't look out for my --
Ralfka Gonzalez: -- best interests, for your health.
Timothy Brown: For my best interests, yeah, for my health, for my financial well-being. The fact that I live in these pretty horrible conditions is despicable for the person that has given people so much hope.
Ralfka Gonzalez: Housing is so important to people's well-being. When you have organizations that have a budget of $23 million and the soup kitchens that we go to are empty, you know. The housing lists are really long and when you finally get into a place, the places are filthy. There's so much. It's just really hard to see so much money wasted sometimes. The people that really need the help are treated like animals. I would love to see the CEOs of a lot of these organizations sleep under the same conditions that Timothy has to sleep in.
I just find it disgusting that the soup kitchens are empty, but these people are making so much money. And a lot of people who are working in these organizations aren't even HIV positive. I would love to see some of these people live the life that most people with HIV and AIDS have to live every day, even just for one night. That's worth the $200,000 or $300,000, or however much they make a year.
Timothy Brown: I certainly don't want to say -- and I've said that being the only person in the world cured of HIV, or, hopefully, not the only person, the first person of many, I want everyone to be cured, so the numbers will continue to go up and up and up. I don't want to say that I deserve more than everyone else. I want everyone else to have better living conditions than they do.
Ralfka Gonzalez: Timothy does so much work. He's constantly going to the doctor, and all of the scientific results are open to everybody. So if he just keeps doing that. And I just want to say he's really great, and really down to Earth. I hope that other people understand that he's really humble about this. It's an important thing to cure AIDS and to have research that's out in the mainstream. The Timothy Ray Brown Foundation is here to find the cure, and to find alternative ways of healing. We have to start thinking out of the box. That's really important.
Olivia Ford: Well, with that, I think we have to bring this interview to a close. It's wonderful to speak to you, Timothy, and to you, Ralfka. I'm very glad that you, with your compassion and conscience, are two of the faces of this new chapter in the search for an HIV cure within all our lifetimes.
Olivia Ford is the community manager for TheBody.com and TheBodyPRO.com.