Timothy Ray Brown, 1st person cured of HIV, was an 'unlikely rock star,' says friend

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Timothy Ray Brown was just an ordinary guy, who happened to be in the right place at the right time, and served as "an inspiration to millions," says his friend and fellow HIV/AIDS activist Mark S. King.

Brown, the first person known to be cured of an HIV infection, died on Tuesday at his home in Palm Springs, Calif., from leukemia. He was 54.

In 2007, Brown received a hematopoietic stem cell transplantation in Berlin to treat his leukemia. His doctors had the novel idea to seek out a donor with a rare genetic mutation that provides a natural resistance to HIV, the virus that causes AIDS.

After his transplant, Brown consistently tested negative for HIV. The news made a splash, and Brown was referred to in media articles and scientific journals as "the Berlin patient."

The treatment had a major impact on AIDS research, but because such donors are rare and transplants are medically risky, researchers have been testing gene therapy and other ways to mimic the effect.

In 2010, Brown came out publicly as the face of the HIV/AIDS cure. But while his HIV never returned, his cancer did. 

King, an activist and blogger, spoke to As It Happens guest host Helen Mann about his friend's legacy. Here is part of their conversation. 

You met Timothy Ray Brown at [the International Aids Conference in Washington, D.C.,] in 2012.... What was the meeting like?

It's a very large international meeting of scientists, community advocates and public health officials — and he was the star of the show.

He was modest. He was not a media superstar expert. He was just a guy who this remarkable thing had happened to, who was trying his best to navigate it and do some good in the world as a result.

He was a remarkable person because he was an ordinary man in an extraordinary circumstance.- Timothy Ray Brown, HIV/AIDS activist

How did you make his acquaintance at that conference?

There were lots of people living with HIV like myself who just, as soon as we realized who he was, gravitated to him, wanted to meet him and talk to him and thank him and, you know, just express our appreciation.

Because he had gone through a real physical gantlet. It was extremely dangerous ... what he had gone through as a patient to achieve what he did.

It sounds like he was the rock star of the conference.

He certainly was, and an unlikely rock star because, again, he never really asked for the spotlight. The guy was just trying to survive another day, you know, and not die of cancer.

He was a remarkable person because he was an ordinary man in extraordinary circumstances.

So how did he feel about all that attention he got once he decided to reveal himself as the Berlin patient?

He was afraid. He was scared. You know, he made a joke in a speech about [how] it's not everybody that has every medical record about themselves online for the entire world to see. And, of course, that's exactly what he had done.

So he was nervous about what it would mean. He was nervous about whether or not he could fulfil the role of this icon, you know, of this symbol, because we certainly projected, those of us living with HIV, we certainly projected onto Timothy all of our own hopes of our own wishes and desires that maybe one day we wouldn't have HIV anymore either.

The German doctor who performed the transplant said that Mr. Brown was basically in the right place at the right time. What was it about the circumstances of his condition that allowed him to become ... effectively this guinea pig?

Because at the time that he was being treated for his leukemia in Berlin ... we knew enough to know that there was this genetic mutation in some people's blood that made them resistant to HIV infection in very rare cases.

And his very creative oncologist who was treating his cancer happened to know this, and knew that Timothy was also positive, and thought, "Well, if I'm going to have to give a stem cell transplant to this guy, I wonder if anybody on the stem cell transplant list also has this genetic mutation making them resistant to HIV?"

It was a shot in the dark. It was a needle in a haystack. And sure enough, one of the donors on their list carried this genetic mutation. And it was that donor's stem cells that they used to transplant into Timothy's body.

It was very, very serious. He nearly died twice. And once he recovered from the serious stem cell transplant, he never tested HIV positive again, and they were never able to locate it in his body.

And in fact, sadly, Timothy Brown died of leukemia. It was that leukemia that re-emerged 12 years later to claim him. But, he was still HIV-negative on the day that he died.

He said that he wanted to give people hope and that is why he decided to reveal himself as the Berlin patient. And he also, as I understand it, was a real advocate for [pre-exposure prophylaxis (PrEP)], to keep people from getting HIV. How did he come out as an activist?

Tentatively, but soon with great enthusiasm.

He realized how warm our community is, the community of AIDS activism and advocates and public health people. We were cheering him along every step of the way, and so I think he got more comfortable with that as the years have come by.

He was the first person cured of HIV, and then went on the pill. 

He once said, you know, "It would be really terrible if the first guy cured of HIV contracted it again. So I'm not going to do that."

Right now, there's only been, so far, one other person to be cured of HIV infection, Adam Castillejo, I believe, the so-called London patient. Given that, where do you see hope in what researchers have learned from Timothy and Adam to bring about a bigger breakthrough?

First of all, Timothy's story and the fact that he stepped forward and put a face on an HIV cure electrified the cure research community and the researchers doing it. It just gave everybody a boost of feeling good. And so it's hard to measure how many more funding dollars, how many more researchers doubled their efforts to look for an HIV cure because of Timothy.

And it's also true that we have many ... scientific avenues to how we may eventually have a cure for HIV. But certainly genetics is one of them. And genetics, the genetic makeup of the donor that they were able to locate and how genetics may play a role in making other people immune to HIV, is a serious avenue of research. And that's because of Timothy.

Timothy Ray Brown became a good friend to you. What will you miss most about him?

Timothy Ray Brown liked to have a good time. He was as alive as anyone else. He was deeply in love with his partner, also named Tim. And even though he had a very busy travel schedule — a lot of obligations were put upon Timothy, and he did his best to fulfil them, all over the world, speaking and talking — they had a great love affair.

And what I'll miss is his sense of fun and his sense of this Alice in Wonderland, "I can't believe I'm in this situation, because really I'm just a regular guy who, you know, enjoys my boyfriend and enjoys going out. And, oh, I guess along the way, I will serve as an inspiration to millions of people around the world."

Sounds like him being in the right place at the right time was good for a lot of people.

It certainly was.

Written by Sheena Goodyear with files from The Associated Press. Interview produced by Kate Swoger.