Dr. William Paul, chief immunologist at NIAID, even expects to see reports in Geneva of rare patients who, thanks to a mysterious immune response in their own bodies, have gone off the pills and remain free of HIV. "I have heard of such spontaneous responses," he says. Yet, despite recent headlines about a large-scale vaccine trial, most researchers remain deeply skeptical, especially in the short term. "I don't think there's going to be any earth-shattering kaboom," says Gregg Gonsalves, the policy director of Treatment Action Group who sat on the basic science planning panel, "nothing like the giddy days of Vancouver."
The new reality hit William Cullum like a heart attack. Actually, it was a heart attack, and it struck just before last Thanksgiving as he was walking his dog along Greene Street. Cullum, a board member of Visual AIDS, was just 39 and appeared to be in peak physical shape. But one side effect associated with protease drugs is dangerous triglyceride levels. Cullum's cholesterol was through the roof -- he had a blockage in one artery. (He also smoked and had a family history of heart disease.) And the spark that ignited the heart attack, according to his doctor, was probably another component of his cocktail, the steroids prescribed for depression and low testosterone, a common symptom of HIV.
Cullum survived, but right after Christmas came another, more painful -- and far more common -- side effect: kidney stones, reported regularly in people taking Crixivan, one of the most popular protease inhibitors on the market. A jagged stone seven millimeters wide was lodged in his urethra. "The heart attack was oddly, deeply uncomfortable," Cullum says, "but the kidney stones were horrible; I can't begin to tell you." He was kept in the hospital for another two weeks, this time on morphine. The hospital took him off Crixivan, creating the risk for mutation. "Practically half my friends have had kidney stones. Everybody has these horror stories," he says.
Becky Trotter was a strong and healthy 29-year-old when she went on her first protease inhibitor a year and a half ago. It did only harm. "From the moment I started taking them, I had every side effect in the book," she says. "I was blacking out, I had these amazing fevers; it was just unbelievable. I felt like such a failure." Ultimately, diarrhea and vomiting sent her to St. Vincents for two weeks in January. By the time she took herself off the pills, she had lost 20 percent of her body weight, was on a feeding tube, and was confined to a wheelchair. Today, Trotter, an artist, is on a drug holiday -- she's taking no medications whatsoever. "If I had stayed on them, I believe, I would have died," she says.
"I think AIDS will come back; I think this is really a false honeymoon period," says Eric Sawyer, the executive director of the HIV Human Rights Project. Sawyer himself is on a drastic six-drug salvage therapy. "If that's true, what's going to happen when we all get to the end of the line on protease? Will there be anyone around to care?"
That's the concern that seized him as he marched ahead of Steve Michael's coffin on June 4, pounding a doleful drum eight blocks down E Street, from Freedom Plaza to Pennsylvania Avenue. The marchers hoisted a banner, OVER OUR DEAD BODIES. But there were only 200 people in the procession. Six years ago, during the dramatic "ashes action" on the Capitol, more than 5,000 showed up to dust the White House lawn with the powdery remains of their lovers, parents, children, and friends.
"I felt like this was not just a funeral for Steve but for activism too," Sawyer says. When they reached the White House gate, they placed their friend's casket on a stand and opened it up. Reporters who had covered some of Michael's causes -- needle exchange, medical marijuana -- cried openly.
But they did not all publish their stories. The action garnered little attention beyond a touching article in the Washington Post. "We still think we're dealing with a huge crisis, and the rest of the country seems to have decided otherwise," says Ann Northrop, Michael's vice-presidential running mate, who traveled from New York to eulogize him. "It's discouraging to think you can bring a dead body to the White House and not have the whole country stand up and pay attention."