Great leaps are still required to find ways to inject the zinc finger nucleases directly into a patient’s body. But an important leap has already been made. Gene therapy is allowing us to imagine a world of Timothy Browns, without everything he had to endure.
News of the Berlin Patient’s cure—Brown stepped forward to identify himself by name only late last year—made its debut at the February 2008 annual Conference on Retroviruses and Opportunistic Infections in Boston. Hütter had submitted a paper to The New England Journal of Medicine and to the conference organizers as well, asking to present Brown’s results—no HIV a year after stopping treatment. The journal rejected his submission, and CROI only allotted Hütter space to put up a poster, the platform offered to present research considered of lesser importance.
Steven Deeks, a professor of medicine at the University of California, San Francisco, and a doctor at San Francisco General Hospital’s Positive Health Program—the newest name for the old Ward 86, the first-ever outpatient AIDS clinic—was among the few to appreciate the significance of Hütter’s display. “I said, ‘Wow, this is interesting. Why doesn’t anyone seem to care?’ ” Another was Jeffrey Laurence, director of the Laboratory for AIDS Virus Research at Weill Cornell Medical College and a senior scientific consultant for AMFAR. “I thought it was the most exciting thing I’d heard about since the discovery of the virus,” he says. “I couldn’t believe people didn’t take notice.” Laurence wrote an editorial about the Berlin Patient in The AIDS Reader. He received two letters. “It basically got ignored.”
Laurence asked Hütter to present his findings to a small meeting of top AIDS researchers at M.I.T. in September 2008. He also asked him to provide Brown’s samples to send to laboratories in the United States and Canada, which could run more sensitive tests. Again, all the samples were negative. Mark Schoofs, a Wall Street Journal reporter who’d been invited to attend the session, wrote an article about the Berlin Patient. The New England Journal of Medicine reconsidered its rejection of Hütter’s paper, publishing his results in February 2009.
The case caught the attention of a small activist organization called the AIDS Policy Project, which was trying to rehabilitate the idea of a cure. One of the things the group does is track the money going to cure research, as a way to highlight the need for more of it. Its founder and leader, Kate Krauss, is an organizer and publicist but not a fund-raiser—the group’s annual budget is roughly the price of a used car. She often travels to scientific conferences by bus.
The Project, together with officials from San Francisco, presented an award to Hütter in June 2010. Stephen LeBlanc, a patent attorney in Oakland active with the group, drove Hütter to the ceremony. He was startled when Hütter told him that this was the first such honor he had received. LeBlanc replied that he’d read that the Berliner Morgenpost newspaper had named Hütter a “Berliner of the Year.” Hütter smiled. “I came in ninth,” he said.
The AIDS Establishment, like many Establishments, tends to be suspicious of outsiders. Here comes a young doctor, not even prominent at his own hospital, who by his own admission knew next to nothing about AIDS, doing something never done before. As more of the research community became aware of Hütter’s claims, the prevailing view was: Who is this guy?
Robert Gallo, a co-discoverer of HIV, devoted his opening address at a major conference in December 2009 to an attack on Hütter’s results. Gallo simply didn’t believe them and warned that only a pathologist could declare the patient cured—once the patient was dead. Hütter, scheduled to speak at the same event, quickly amended his presentation. As he defended his results to a panel of skeptics, he showed the new slide: “Do we have to cut this patient into slices?” it asked.
When Kevin Robert Frost, the CEO of AMFAR, began to cite Hütter’s work in fund-raising pitches, he found that potential donors sought different proof. “They said if the Berlin Patient were true,” he says, “it would be on the front page of the New York Times.”
In fact, the Berlin Patient did appear in the Times—on page A12. The short article included quotes from Anthony Fauci, the director of the NIH’s National Institute of Allergy and Infectious Diseases and the world’s most important gatekeeper of AIDS research. Unlike other experts, Fauci accepted that Brown had been cured. He just didn’t think it was anything to get excited about. “It’s very nice, and it’s not even surprising,” he said—meaning that if you take away someone’s immune system and give him a new one resistant to HIV, it’s logical that he would be cured of AIDS. “But it’s just off the table of practicality.”