by James Whitely -
SGN Staff Writer
On Wednesday, June 19, Timothy Ray Brown, the famous 'Berlin Patient' - the first person ever confirmed to have been cured of HIV infection - participated in a Fred Hutchinson Cancer Research Center panel discussion that was open to the public, in the Pigott Auditorium of Seattle University. Brown was cured of HIV through a blood stem-cell transplant he received in 2007 and has tested negative for HIV ever since. A onetime SU student himself, Brown filled the large auditorium to capacity and inspired all with his humor and bravery as he told his story.
Opening the panel was the director of the Vaccine and Infectious Disease Division at Fred Hutchinson, Dr. Julie McElrath. She first asked the audience to keep their friends and loved ones who have been affected by HIV on their minds throughout the panel, and then introduced the three Fred Hutchinson researchers joining Brown on the panel: Dr. Keith Jerome of the Vaccine and Infectious Disease Division, Dr. Hans-Peter Kiem of the Clinical Research Division, and Dr. Michele Andrasik of the Vaccine Trials Network.
Dr. Jerome spoke about the breakthroughs in HIV/AIDS research related to Brown's case. For Jerome, it's those 'aha' moments that keep him going in the face of such a terrifying disease. 'For a scientist, that is the moment you live for,' he said.
'THE FACE OF HOPE'
As he introduced Brown, the evening's keynote speaker, Jerome called the event 'a celebration of hope,' saying, 'Tonight, hope is really embodied in a person.' He called Brown a 'hero,' because 'he made a choice to become the face of hope.'
As Brown took the stage, the entire audience gave a long, standing ovation.
Since he was cured of HIV in 2008, Brown was known simply as 'the Berlin Patient' to most of the general public, but he's not just a nameless medical case - he's Timothy Ray Brown. He's funny, sentimental, and noble. Where he once wore the red ribbon we're all too familiar with, his lapel now sports a blue rose, a traditional alchemic symbol for the impossible made possible.
Before telling his story, Brown recalled his time as an HIV activist with ACT UP in Seattle in the early '90s, well before his own diagnosis.
'I'm going to speak from my heart,' said Brown.
In 1995, while Brown was finishing up his education in Berlin, a former partner told him that he had tested positive for HIV and had been given two years to live. He urged Brown to get tested too, and Brown's results came back positive.
'I was scared to death,' said Brown. 'I didn't tell my mother for a long time.'
Like many, though, Brown learned to live with his diagnosis. He took his medication daily and went about his life, but in 2006, he was diagnosed with leukemia.
DR. HÜTTER'S HUNCH
In addition to his regiment of chemotherapy, it was decided that Brown would need a blood stem-cell transplant. His physician, Heidelberg University's Dr. Gero Hütter, whom Brown calls 'my savior,' had a hunch. For Brown's donor, he would search for someone with a rare, recently discovered genetic mutation that provides a natural resistance to HIV, just to see if it would help his body fight the progression of the infection.
Brown said Hütter came up with a list of 261 possible donors - an exceptional number, as another man in the hospital with Brown at the time came up with zero, which isn't uncommon.
Hütter just kept 'testing, testing, and testing,' said Brown. On the 61st donor he checked, he found the mutation, called the 'Delta 32' variant of the CCR5 gene. Brown laughed at the fact that the donor was a German man living in the United States and that his cells would be going to him, an American living in Berlin.
Just as Hütter had hoped, the resistance transferred to Brown. After two transplants, Brown was not only cured of leukemia, but HIV had been completely eliminated from his body. To this day, he still tests HIV-negative.
All could see the smiles forming on the doctor's faces as his story shifted from one of tremendous fear to an extraordinary message of hope.
Brown recognizes that he was very, very lucky on many occasions.
'They gave me a five-percent chance of survival and I didn't think that I'd make it,' said Brown. 'But I did make it.'
'That mutation occurs in only about one percent of northern Europeans,' Brown told SGN last week in an interview. 'I was lucky to be in Germany. It's most common there.'
In addition, Germany's nationalized health-care system paid for the millions of dollars' worth of treatment it took to cure him.
After another standing ovation, Brown took questions from the audience. In his answers, he demonstrated his knowledge about current research trends concerning the treatment of HIV. Brown, the patient, kept up with the three doctors he sat beside. He's educated himself because he still identifies with HIV-positive people. In the vein of his days in ACT UP, he started the Timothy Ray Brown Foundation to build cooperation between communities and researchers and to raise funds for a cure.
'WE NEED YOU'
'We're working hard. We need you to work hard because we've got to defeat this thing together,' Dr. Jerome told the audience.
It's exactly what Brown is doing.
When asked about what a cure might look like, Dr. Kiem said Brown's case has 'shifted the direction of HIV research back to finding a cure.'
Despite being very lucky, Brown had a particularly rough course of treatment, Kiem said.
'In [Brown's] case, these were not his own cells,' Kiem told SGN in an interview last week. 'They reacted with his cells. It's what we call 'graft versus host disease.' It's a common complication.'
Dr. Kiem explained that Brown's case reflects the value of using gene therapy instead of using a donor. Essentially, the idea is to extract cells from the patient, make them HIV-resistant with the Delta 32 mutation, then put them back. Those cells would then affect the cells around them. Kiem hopes this usage of gene therapy will be ready for human trials later this year or early next year.
SUMMERING IN SEATTLE
Brown will remain in Seattle for the summer so he can cooperate with the research currently underway at Fred Hutchinson, one of the world's leaders in HIV study. He'll then move to Palm Springs, California, for a few months of well-deserved rest as he prepares for an international tour next year.
You can learn more about Brown and his foundation at www.timothyraybrownfoundation.org.
'Until everyone who has HIV is cured, I'll keep going. I want everyone to know there is hope,' Brown told SGN last week. 'I believe there will be a cure in my lifetime.'
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