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A new model for AIDS treatment activism

Two years ago, author-activist Larry Kramer had a scare. Kramer is blessed with an extremely low amount of virus in his blood--in lab tests it's undetectable--but suddenly it flared up. "I thought, 'Oh my God,'" he recalls. "What happens if my virus is on its way up? What drugs would I take? I didn't know then and I still don't know."

Luckily, Kramer's virus receded on its own, so he didn't have to decide which of the new protease-inhibitor drugs to take, a decision that's frightening and confusing. There are 11 approved drugs that fight HIV, and two more about to be released. But no one is sure how to use them.

Patients usually take a cocktail of three medicines. With 11 to choose from, there are 165 possible combinations, and when the two new drugs come on line, that number will soar to 286. Add in the regimens of two, four, and even five drugs, which are becoming more popular, and the number of options exceeds 2300. Which is best? And if the first combination fails--as currently happens with a quarter or more patients--what is the optimal "salvage regimen"?

The most precise way of answering these questions is to run controlled clinical trials--but with so many options to choose from this is impractical. What's more, such trials take years, by which time new drugs are likely to become available, rendering the outcome obsolete.

Yet hundreds of thousands of patients are playing what Kramer has dubbed "drug-combo roulette," choosing regimens without full knowledge in a desperate bid to keep AIDS at bay. What Kramer realized, even before his own scare, was that these patients are participants in a vast medical experiment that, unfortunately, no one is tracking. "What a waste, all this data going down the toilet," Kramer says. "And so it just sort of came to me that patients should be able to put their information on the Internet," allowing them and their doctors to log in and find out, in real time, how patients are doing on any drug combination.

Two years later, Kramer's idea has grown into the multimillion-dollar HIV Treatment Data Project (TDP). Field testing is scheduled to begin in New York City and California next month, and Kramer sees it as the next step in AIDS activism--patients collecting and recording the scientific data that might help save their lives. "We're all waiting for someone to tell us what drugs to take," says Kramer. "That's not going to happen. We'll have to find these answers for ourselves. It's time to hit the keyboards like we hit the streets."

Not quite yet, because TDP might not be fully available for a year. There's also debate about how reliable the information it provides can ever be. Though leading activists and researchers raised plenty of questions about the project, almost no one opposed it. "It's worth a try," says Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases. "It may turn up useful information."

Treatment Action Group's Mark Harrington, who won a MacArthur "genius" grant for his activism, predicts that TDP will have limited use, because only clinical trials can prove what drugs are effective. Still, he thinks the project could uncover hidden trends: "What happens if everyone's failing nelfinavir [a leading protease inhibitor] and we didn't know it?" There's little love lost between Harrington and Kramer, but, Harrington says, TDP "might well be the most constructive thing Larry's done in five years."

Kramer's old friend Rodger McFarlane, the indefatigable former head of Gay Men's Health Crisis and Broadway Cares/Equity Fights AIDS, is TDP's director. Mike Stocker, president and CEO of Empire Blue Crossand Blue Shield,helped convince the American Association of Health Plans, a managed-care industry group, to get involved, and it provided more than a million dollars in funding. High-caliber AIDS doctors and statisticians--led by Sherrie Kaplan of New England Medical Center and Tufts University--are designing the questionnaire and the data crunching. But maybe the biggest break came when an executive at the software company Lotus read an article by Kramer that described the project and called for volunteers.

Bruce Brothers had moved to Colorado, where his parents live, to die of AIDS. Lymphoma raged in his body. For three months, he recalls, he was in the hospital "almost constantly." His T-cell count, an important gauge of the immune system, plummeted to 19 (a healthy person has 1000). Death was more than just knocking; it was banging down the door.

Brothers was rescued by one of the new three-drug regimens, allowing him to return to work. That's the Lazarus story that has become so commonplace in AIDS. But just as common is what happened next: HIV mutated, escaping the powerful drugs, and Brothers faced the dilemma of what medications to take next, something no clinical trial had solved. Just when Brothers "realized this great ride and recovery was not a sure thing," he read Kramer's article in the AIDS magazine POZ and called the publication, saying, "I'm the person Larry is looking for."

Brothers, who has never before been involved in activism, says he wanted to "add value" to the project. That he has. Lotus estimates it has already donated more than $1.5 million in staff time and resources, and Kramer calls the company's work "fucking unbelievable." (The company's motivation? Partly, it's helping Brothers, but if the project succeeds, Lotus could use the PR to land new contracts in the healthcare business.)

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