The fact that she’s developed resistance to so many of the drug options is the curse she bears for being a guinea pig. “HIV mutates very frequently, and if you just use one or two of the drugs, the virus can overcome them fairly quickly,” says Hiroyu Hatano, MD, an assistant professor of medicine at UCSF, who recently published a study on the topic. “And Rae took every regimen that came down the pike,” says Cohen. “At first we gave people one drug at a time—we didn’t have any other options. Now we give newly infected patients several drugs all together in one force, which has a much stronger effect and causes a lot less resistance.”
And there are new medications. In fact, Hatano believes that 2007 may be comparable to 1996 in seismically shifting the course of AIDS. On August 6, as Rae was injecting her drug of last resort, the FDA approved maraviroc, a CCR5 inhibitor, which represents the first new class of oral HIV drugs in more than a decade. Rather than fighting HIV inside the T cells, maraviroc thwarts the virus from even entering uninfected cells by blocking one of the main entryways. “So it’s a whole different mechanism,” says Hatano. Another novel class of drugs called integrase inhibitors hovers on the brink of approval, as does a medication called etravirine, “which is exciting because it’s effective against some viruses that have become resistant to the existing drugs in its class,” she says.
Meanwhile, there’s a lot of buzz around a group of patients called elite controllers, who have been infected with HIV for years without ever getting sick. “We thought these people were rare as hen’s teeth. But now we realize that about one in 300 patients ends up like this,” says Bruce Walker, MD, director of the Partners AIDS Research Center at Massachusetts General Hospital and a professor of medicine at Harvard, who is launching a multimillion-dollar study (EliteControllers.org) to find out what’s unique about their immune systems that could be applied to all patients—maybe even as a vaccine. “You want goose bumps?” he asks. “I look across the table at one of these people and feel like the answer is sitting right there in my office.”
As it is, AIDS specialists say, with 22 drugs available, today’s outlook for patients is so much better, and longer, than 24 years ago when Rae and Sharon were infected—to the point where, if a newly diagnosed woman comes into Monica Gandhi’s clinic at UCSF asking how long she has left, the doctor is able to tell her, “We’re going to try for a normal life span.”
Whether any of the research or new drugs will keep Rae or Sharon alive is a question neither chooses to dwell on. They have too much work to do to die anytime soon. With more and more women testing positive for HIV, their mission has intensified. They know they are in a unique position to change lives, and that in itself keeps them going. “I do it,” says Rae, “so that my story will never become your story. I do it so you’ll never have to walk in my shoes.”