“I’ll tell you why I’m not taking my medicines today,” Sonja says, lighting up a Marlboro and settling into one of the few pieces of furniture she owns, a fuzzy green sofa she bought last week at a hotel liquidation sale. “I’m not taking them because a couple of days ago I woke up and saw spiders all over the walls of my apartment. I had to close my eyes and wait for them to disappear.”
Sonja isn’t surprised that the drugs are making her sick. For one thing, her doctor at Cook County Hospital warned her about such symptoms. “I’ve heard a lot of horror stories from people whose doctors didn’t tell them what to expect when they started the drugs,” she says. “At least my doctor got me ready for it. I could cancel my plans.”
With the back benefits Sonja received from Social Security, she paid for a cruise to the Bahamas, which she will take in May. “I’ve never done anything nice for myself,” she explains. She’s also paid for her own cremation.
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The success of protease inhibitor therapy is the subject of intense debate among AIDS service workers. These drugs are even the subject of a daylong conference at John Marshall Law School next Tuesday. Certainly, protease inhibitors have produced dramatic benefits for some. “We all have our miracle patients,” says Dr. Richard Novak, a virologist with the University of Illinois at Chicago’s HIV clinic. One of his miracle patients once suffered from multiple infections and severe weight loss, his T cells bottoming out at 16 (an AIDS diagnosis comes when T cells fall below 200; an intact immune system typically has 1,000 or more). Triple-drug therapy including a protease inhibitor brought his T-cell count up to over 350, and all his symptoms disappeared. He has now returned to work with a new lease on life.
In most of the protease inhibitor studies around the country, resistance develops in 10 to 15 percent of research subjects. Dr. Philip Loy, a biophysicist with American Viatical Services in Atlanta, has completed medical reviews of some 4,000 people on the drugs. He estimates that 30 percent of these patients become intolerant to one or more medications, while another 15 to 25 percent fail to adhere to the drug regimen. If his sample is representative of the larger population of people on protease inhibitors–and his sample is three times larger than the largest clinical study designed to test the drugs’ effectiveness–then these drugs may fail in half of the people who take them.
He started his triple-drug therapy in November 1995. When I met him the following summer, he was pale, thin, barely spoke above a whisper, and had the first telltale signs of the AIDS face rarely described in the press these days–his skull slowly rising to the surface. Now nine months later Jeff seems a different person, sturdier, more animated, filled out. With the dramatic reduction in the amount of HIV in his system, he says, much of his former energy has returned. He’s even able to work out and swim, activities he thought he’d given up for good a few years ago.
It turns out that such fast action may have left Jeff at a disadvantage. “We now know that it’s best to start with two new drugs,” he explains. “In other words, I was on d4T and 3TC, and my doctor added ritonavir. It would have been smarter to change the d4T to another drug like ddC or ddI and add the ritonavir. But no one knew this back then, and in the rush to get people on the drugs, they just did it. Looking back, a lot of people have similar regrets to mine.”
