Clare Garrard explores a meeting with Timothy Ray Brown; the first man to be cured of HIV as a result of stem cell transplants.
He wasn’t born to be a public speaker. A slight man, he stood before us, telling his story. He was the first man to be cured of HIV. It wasn’t the conventional approach to a cure. This man, Timothy Ray Brown, also popularly known as the “Berlin Patient” had been cured of HIV as a by-product of being treated for leukemia.
A couple of weeks ago I had the privilege to attend a public forum where one of the speakers was Timothy Ray Brown – the first man to be cured of HIV. I first heard about him from an article that I stumbled upon in my second year of university. In great excitement, I waited behind at the end of my next Biochemistry lecture to ask the lecturer about him, and why we couldn’t do this for everyone. She told me that the risk was too great.
Now, a few years on, I understand a great deal more about the reasons behind that. The treatment for leukemia involves a stem cell transplant from the bone marrow of a healthy donor. This transplant alone has great risks associated with it. And these days an HIV positive person can live a healthy and fulfilled life on ARVs, so why take that risk?
Read: Why is HIV incurable?
Brown told us how he had not wanted to have the transplant at first. “50% of stem-cell transplant patients die and I did not want to die.” But eventually, when his leukemia made him severely ill, Brown decided to go for treatment. The doctors had found a donor with a special HIV resistance mutation, CCR5-delta32. CCR5 is one of the common receptors on human immune cells, and is used for the entry of HIV into them. A donor with two copies of the CCR5-delta32 mutation meant that they would be resistant to HIV infection. To take these resistant stem cells and give them to an HIV positive person would perhaps give that person resistance too – at least that was what the doctors hoped.
Brown stopped his ARV treatment in February 2007 for his first stem cell transplant, in case the drugs interfered with treatment. After a relapse of leukemia, he underwent a second transplant in 2008. Since then, now over a decade ago, he has not been on ARVs. Brown had been cured as a result of the stem cell transplants.
This medical miracle was initially thought to be due to the special CCR5-delta32 mutation from the donor, which gave him HIV resistance. But recently another school of thought has emerged, that Brown may have been cured due to graft versus host disease, where the donor’s cells would have fought off and killed Brown’s cells – including the HIV positive cells. Whether by one or the other, or a combination of the two, the fact remains that Brown was cured.
Yet, as great a blessing as this is, it can also be difficult. “I don’t want to be the only one cured of HIV‚ it is a very lonely place,” explained Brown, who has had to watch friends die from HIV. “I do have a sense of survival guilt, but I believe in a higher power at work who chose me for this journey.”
Having undertaken treatment in Berlin, Brown was initially known as the “Berlin Patient” in order to allow interested parties to talk about this miracle, but also protect his identity. In 2010, Brown made the decision to go public as the first person cured of HIV. “I wanted to do what I could to make [a cure] possible. My first step was releasing my name and image to the public.” Since then he has been involved in HIV cure advocacy, lending hope as the first man to be cured of HIV.
Although the method of his cure is not something that would be available or desirable for all HIV positive people, it is a possibility for those who have both HIV and leukemia – albeit a risky one. As of 2017, six people who have undergone the same transplant treatment as Brown, and only one of them receiving the special CCR5-delta32 mutation, appear to have no trace of HIV in their bodies. But although HIV cannot currently be detected in their bodies, until they come off ARVs we won’t know if that is just HIV at undetectable levels, or if they too have been cured.
However, progress is being made. And that counts for something. At least, with Brown’s story, we know that HIV can one day be defeated.
Read Brown’s reflections here: I Am the Berlin Patient: A Personal Reflection
Follow Clare Garrard on Twitter: @claregarrard