AIDS ad the Research Subject
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He also was afraid of the consequences, that the stigma of an AIDS diagnosis could hurt his job prospects. "I knew I had to be very careful."
When he learned he was HIV-positive, Michael refused to give in to the idea that he had a fatal disease and continued to live his life pretty much as he always had. While he did go on AZT, he quit after a year because of the cost. By 1993, he was experiencing crippling fatigue and started to become increasingly forgetful. But because dementia was then, and remains so today, one of the least-understood aspects of AIDS, Michael didn't connect his deterioration to HIV.
"I just thought it was a function of my age," he says, "that maybe my memory is getting a little faulty."
Finally, in late 1994, he took a leave from work, and soon after he saw the neurologist who told him his death was imminent. Panicked, he called his internist for a second opinion. "That very day, I got a call from Elyse Singer," an AIDS researcher, he says. "She said, 'Michael, I am not going to let you die.' And I chose to believe her."
Singer called Michael's mother in the small upper-middle-class suburb outside of Detroit where he grew up and gave her the news. She said that Michael was very sick, that his memory had completely failed and that he needed her help. It was Christmas time, and Michael's mother asked if she should come after the holidays. "You really need to be here yesterday," Singer told her.
For nearly three months, Michael's mother lived with him, ferrying him to doctor's appointments and keeping track of his medication, which included an AZT regimen. He was improving, but after his mother returned to her home, he began to slide and grew increasingly depressed. While visiting his parents in 1995, he was hospitalized.
About the same time, there was a pivotal advance with the advent of protease inhibitors, a three-drug "cocktail" to attack the virus. "It really changed the whole tenor of treatment," recalls Mitsuyasu. "There was this major improvement in survival. Before, we were trying to keep people alive from month to month. After the protease inhibitors became available, we saw AIDS as a controllable disease."
But the cocktail offered no benefit for Michael; he was resistant.
"All around me it was like springtime," he recalls of the changes he witnessed in people who, through protease inhibitors, had been able to reclaim their lives. "I just couldn't relate to it. I felt very left out."
Still, Michael has eagerly joined any trial that will accept him. "From the very beginning, I was always willing to do whatever I needed to do," he says. "I like doing trials because I like to be a part of the solution. I know that I'm a good participant. I'll show up. I'll take my medications. They can count on me."
In 1996, Singer put him in a study of recombinant nerve-growth factor, which offered the hope of being able to regenerate damaged nerves. But, unhappy with the drug's results, the pharmaceutical company pulled the plug on the trial.
The disappointment of that experience didn't faze him, however. Even failure, Michael says, is OK. "Every single bit of information is valuable, so nothing that is done is futile."