“My mother named me Timothy Ray Brown. The media renamed me ‘the Berlin Patient’ I am the man who once had HIV.”
This is how the crowd at Philadelphia FIGHT’s Prevention and Outreach Summit June 14 met the keynote speaker, a man thought to be the only person to be ostensibly cured of the HIV virus.
Several years ago, Brown, 46, was the recipient of two stem-cell transplants that were meant to eradicate his leukemia and which also sought to explore a new avenue for eradicating HIV.
Doctors utilized a CCR5-negative donor, a rare genetic mutation in which the individual lacks the receptor gene that the HIV virus often uses to enter cells. While Brown’s recovery process was lengthy and challenging, his HIV levels have since been declared undetectable.
“I didn’t really believe it at first,” he told PGN last week. “Although the doctors told me, I didn’t really believe I was cured until the New England Journal of Medicine released their report about me. It felt really, really good.”
Brown, who is gay, was diagnosed with HIV in 1995 when he was studying in Berlin. Although he said he at first thought the virus was a death sentence, he eventually learned that he could live a reasonably comfortable life on antiretrovirals.
However, he was faced with another diagnosis a decade later: leukemia. After unsuccessful chemotherapy, Brown’s doctor decided to turn to then-more-unusual method of stem-cell transplantation, screening 67 potential candidates until finding a compatible donor who also had the genetic mutation.
After full-body irradiation, the transplant was performed in February 2007. Following the recovery period, Brown’s HIV levels became undetectable and his physical strength returned. He went back to the gym and was able to regain muscle weight.
“I did really well for that first year,” he said.
However, upon a visit to the United States later that year, he was struck with pneumonia and during treatment learned that his platelets were low, an indication that his leukemia had returned, which was confirmed when he returned to Germany.
Brown underwent multiple bone-marrow biopsies and was eventually faced with deciding if he should have a second stem-cell transplant: While survival rate for an initial transplant is about 70 percent, it drops to just 5 percent for a second procedure, he said.
He ultimately elected to take the risk and received the second transplant in February 2008.
After the procedure, he experienced weight loss, delirium, bleeding behind his eyes and a wealth of other conditions, and spent months in rehabilitation learning to walk again.
He gradually regained his strength and mobility and, while he was left with some residual neurological challenges, Brown is now cancer-free — and, even though he has been off his antiretrovirals since 2007, HIV-free.
Brown’s identity was not publicly revealed until 2010, having only previously been known as “the Berlin Patient.”
He has participated in countless speaking engagements since then and said he has been inspired by the effect his story has had on people who are HIV-positive. One of Brown’s most memorable encounters was with an HIV-positive Canadian woman who said her son, also HIV-positive, was brought back from the brink of suicide upon hearing Brown’s story.
“I was told that my information changed his life, made him want to live,” he said.
Brown’s name was again in the news last week with the release of a report out of Spain that suggested HIV traces still existed in his body.
University of California scientist Steven Yuki contended in his study that his team identified what could be bits of HIV genetic material in Brown’s system. While responses varied, many in the medical community suggested that the samples in the highly sensitive tests were contaminated, which Brown believes.
While Brown said his treatment was successful, he noted that it’s not a feasible cure for all HIV-infected people, in part because of the extremely high cost and risk: Germany’s universal healthcare system allowed him to undergo the extensive procedures, which he said he would not have been able to do in America.
“My treatment went surprisingly well but I wouldn’t wish what I went through on my worst enemy,” he said. “What needs to come about is a cure that is easier on people than what I had to do.”