This Positive Life: Life After Being Cured of HIV
September 5, 2012
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.
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.
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