It's been a long road for man 'cured' of HIV
by Ed Walsh
When Timothy Brown, the only person in the world to be functionally cured of HIV, was first offered the chance for the cure in 2006, he turned it down flat. Brown had been HIV-positive for more than a decade and was diagnosed with leukemia earlier in 2006. His doctor told him that an experimental stem cell transplant could cure him of both leukemia and HIV.
Brown explained in a speech last week during an appearance at a Stop AIDS Project event, "The possibility of being rid of cancer and HIV at the same time? Who could say no to that chance? To strike back at a disease that has killed some of my closest friends, who could say no to be part of something so groundbreaking? Who could say no? Me, that's who. I said no."
Brown, 45, is originally from Seattle and was living in Berlin when he was first diagnosed with HIV in 1995. He came down with leukemia 11 years later. He was dubbed the "Berlin Patient" early on to protect his identity. When he was offered a double cure, he was in remission from the leukemia. Brown was being treated by German hematologist Dr. Gero Huetter.
"Now, let me put this in perspective. When this was first proposed to me by one of Dr. Huetter's colleagues, I was still recovering from toxic cancer drugs. I'd come close to dying. By comparison, my 11 years of HIV treatment had been a cat walk," Brown said, looking up from his notes as he grinned as the audience chuckled when he corrected himself, "or cake walk. And stem cell transplants are very risky procedures. Did I really have to go through this extra hell? I chose not to do it because I had been recently told that my leukemia had been in remission."
But by January 2007, all that changed. The cancer came back. Brown opted for the stem cell transplant.
At least 1 percent of Caucasians are naturally immune to HIV because of a mutation in the CCR5 receptor gene. Brown's doctors found a donor with that immunity, who was also compatible with Brown's genetic type, and infused him with those cells. But first, Brown had to undergo chemotherapy that would completely wipe out his existing immune system.
The procedure is considered very risky and there was a possibility that Brown's body would reject the donor cells. But it worked and he felt healthy and thought he was out of the woods.
"I thrived. I went to the gym. With HIV, I [had suffered] wasting syndrome. And without HIV I developed muscles. I was looking good. I felt good. I kept doing good until early 2008," he said.
But then he felt ill again. He thought it was the norovirus, which had been big in the news at that time. But doctors determined that the leukemia had returned. Eventually he had to undergo a second stem cell transplant from the same donor. But the HIV had still not returned. Brown had not been on HIV medication since the first leukemia stem cell treatment and his blood showed no sign of the virus. He had no HIV antibodies.
Brown faced a long, painful recovery. Following that second treatment, he faced another setback when a biopsy caused an "air pocket" in his brain. Brown said that was a result of the incision for the biopsy not being stitched properly. He had to undergo another surgery to treat that. Then, in October 2009, he was severely beaten and "nearly died" following a mugging in Berlin. He suffered a severe shoulder injury and he believes the attack may have done some brain damage resulting in his continuing neurological problems.
He moved back to the United States in December 2010. He told the Bay Area Reporter that he opted to move to San Francisco in January rather than with his mother in Seattle because the thought of moving back to Seattle felt a "little like giving up." He also has a couple of good friends in San Francisco who have been living with HIV and noted that the health care they received is excellent.
His medical care is being covered by Medi-Cal. Dealing with the medical bureaucracy in the U.S. has been difficult for Brown, who was used to Germany's universal health care. He only recently was able to set up an appointment with a specialist in brain injuries.
Brown told the B.A.R. that he hopes he will be able to eventually be well enough to get work as a German translator. He is being studied by doctors from UCSF and San Francisco General Hospital and is one of the volunteers in UCSF's Scope study.
Brown said it didn't really sink in with him that he was the first person functionally cured of HIV until February 2009, two years after his first cell transplant, when it was reported in the New England Journal of Medicine.
"There's nothing like having a respected medical journal talking about you to drive home a point," he said.
Brown told the B.A.R. that he has always been a private person but decided to come out about a year ago as the Berlin Patient to put a face on the cure and to encourage more research on finding a cure.
Researchers say that Brown's functional cure cannot be practically applied to others with HIV. That's primarily because of the risks and costs involved with the procedure as well as the challenge of finding donors who are both genetically compatible with the recipient and are among the very few who are immune to HIV. But his case is giving new hope that HIV can be defeated. Trials are under way and have had some success using genetic engineering to alter a patient's own blood cells to make them resistant to HIV.
Shocked at testing positive
In 1995, while living in Berlin, Brown was encouraged by a former partner to get an HIV antibody test. The positive result shocked and devastated him. His former partner, who was also HIV-positive, told him that despite the advent of the drug AZT, he would likely be dead in a couple of years. But fortunately better drugs came along a year or so later and Brown enjoyed a medically uneventful life for the next 11 years. Then he faced a number of extremely risky medical procedures and a near-fatal mugging and emerged on the other side.
"I guess you can say that I have more lives than a cat," he said.
Brown's speech last week was before a Positive Force-sponsored forum entitled "Taking care of ourselves, on the road to a cure," in the Rainbow Room at San Francisco's LGBT Center. Positive Force is a program of the Stop AIDS project.
As he concluded his speech, Brown said, "Now I know my treatment will not become a commonplace procedure to cure HIV. It is dangerous. It is expensive. But my experience has shown me that a cure is possible.
"For those of you with cynicism or battle fatigue from your long fight against HIV, I hope my experience brings a renewed ray of hope. For me, my treatments have shown the benefits of an effective public health system and the synergy it can achieve with those working in academic medicine.
"As I finish, I would like to share with you two dreams I have. My first one is for me. I admit, I really want to receive an invitation from Berlin's current mayor to speak there."
Brown paused and looked up from his notes to tell the crowd of about 125 that he understands that Berlin's openly gay mayor, Klaus Wowereit, is up for re-election and may be voted out of office in mid-September. Brown, who has been out since he was 18, said he appreciated that Wowereit is also out.
"I want the opportunity to thank Berlin and Germany for what they have done for me," he said.
At the end of his 20-minute speech, Brown concluded, "My second dream is to not be the one who stands before you and says 'I'm cured,' but to be the man who stands before you and says 'we are cured.'"
In a five-minute question and answer period that followed, someone asked whether he met his donor. Brown said the donor had opted to remain anonymous and declined to meet with him. Brown had wanted to thank the donor.
"I would really like to say, thank you very, very much," he said.
When asked if he is currently taking medication for anything, Brown replied that he takes meds to control diarrhea and a psychotherapy drug, "to make me happy." He added that he suffers from neuropathy that causes numbness on his feet and toes.
Brown first appeared on television in May in an exclusive interview with KPIX's Hank Plante, who returned from retirement to work on a series on the 30th anniversary of AIDS. Brown was also featured in a cover story for Poz magazine and gave a brief interview to the B.A.R. for its commemoration of the 30th anniversary of AIDS. Plante's story was picked up by CBS news and other news stories followed.
Brown told the B.A.R. that his celebrity status as being the only person in the world to be functionally cured of HIV hasn't been a big deal. A bank teller once asked him if he was the guy on TV who was cured of HIV, and just after he gave his speech last week, he was approached by a man who was in attendance who asked him if he knew him from somewhere. He says that sometimes people stare at him and he doesn't know if that's because they recognize him from TV, or think he is cute, or are staring for some other reason.
A video of Brown's complete speech can be found below.