Seattle man cured of HIV hopes to help others

Published Jun 19, 2013 at 05:00AM

SEATTLE — Early reports identified him only as “the Berlin patient.” But Timothy Ray Brown, the first person cured of HIV, was born and raised in Seattle.

Now, Brown is returning to his hometown to help boost efforts at the Fred Hutchinson Cancer Research Center and elsewhere to extend the cure to others.

“I don’t want to be the only person in the world cured of HIV,” Brown said in an interview. “I want there to be a lot more like me.”

Seattle is the first stop on his national fundraising tour for The Timothy Ray Brown Foundation, devoted to the search for a cure.

“I really believe that there is going to be a cure for everyone within my lifetime,” said Brown, 47.

His own cure was a grueling procedure that required a combination of serendipity and scientific innovation difficult to duplicate.

Diagnosed with HIV in 1995, Brown kept the disease mostly in check with a regimen of drugs. Then in 2006, while living in Berlin, he began to feel so weak he could barely ride his bicycle to work.

German doctors diagnosed a highly lethal form of leukemia.

Brown’s first stroke of luck was coming under the treatment of bone-marrow transplant expert Dr. Gero Hütter.

Hütter knew that about one in 100 Northern Europeans carry a genetic mutation that blocks the AIDS virus from getting into their immune cells, shielding them from infection. Since a bone-marrow transplant basically involves killing off the patient’s defective immune system with radiation and chemotherapy, and replacing it with one from a donor, Hütter wondered if using a donor with the protective mutation might rid Brown of HIV at the same time it cured his leukemia.

Out of more than 2.5 million people in Germany’s donor registry, Hütter found 267 tissue matches to Brown — and one person who also carried the mutation. But the benefits from the first transplant didn’t last, and Brown’s cancer came roaring back.

The donor, a German man living in the United States whom Brown has never met, agreed to a second transplant. Hütter warned Brown there was a high likelihood the procedure would kill him — and it nearly did.

“I became delirious. I couldn’t walk and I was incontinent,” Brown recalled. When a physical therapist told him to lift his left leg, he lifted the right. “I couldn’t tell the difference anymore.”

Brown spent most of 2008 in the hospital. But every time Hütter tested him for HIV, the tests came up blank. Today, Brown no longer takes drugs for HIV, and no tests have detected virus anywhere in his body.

Most AIDS experts agree that his cure is real, though some suspect virus may still be lurking in some cells. Brown himself didn’t believe he was cured until Hütter published a paper about the case in the New England Journal of Medicine in 2009.

“At that point I thought, medical scientists are accepting it, so it must be true,” Brown said.

In April, a 12-year-old boy with HIV received a transplant in Minnesota using umbilical-cord blood from a newborn with the protective mutation — but it’s too early yet to know if the procedure provided a cure.

Clearly, though, it’s not the kind of operation that can be widely replicated, said Hutchinson center researcher Dr. Keith Jerome.

Jerome and his colleagues hope to develop a streamlined version of Brown’s cure. “The long-term goal is to make this simple enough that it doesn’t require hospitalization,” Jerome said.

With a $20 million grant from the National Institutes of Health, the Hutchinson scientists are tweaking patients’ own stem cells to make them resistant to HIV.

To do that, they use special enzymes developed by California-based Sangamo BioSciences to induce artificial mutations that mimic those in people who are naturally immune to the virus.

“It’s an engineering tour de force,” Jerome said. “In some ways, it seems like science fiction that we can actually modify a spot in the genome and leave everything else alone.”

The treated stem cells would then be infused back into the patient, where the hope is they would proliferate and replace the patient’s HIV-plagued immune system.

The research is still in an early stage, but the scientists hope to start clinical trials soon.

In a sign of the growing optimism about a cure, two other labs also received major NIH grants at the same time as the Hutchinson. Scientists at the University of California, San Francisco, are working to rev up patients’ immune systems to fight the virus. At the University of North Carolina, the focus is on drugs that will roust out hidden pockets of infection.

Other scientists think early, aggressive treatment of HIV might be able to eliminate the virus. That’s what happened with a baby in Mississippi who was born infected. Doctors immediately administered high doses of drugs. More than two years later, the child seems to be HIV-free.

Brown, who now lives in Las Vegas, says he’s healthy and plans to spend much of the summer in Seattle, where his mother still lives. After coming out as gay in the 1980s, he was an AIDS activist in Seattle long before his diagnosis.

Brown said his foundation will push for more cure research funding, a cause that convinced him to step back into the spotlight.

“I realized I couldn’t really effect change and advocate for a cure for other people until I came forward, so that’s what I did.”