But 1996 became a swing year for AIDS patients like Rae who’d been hanging on by a few tattered T cells, planning their funerals. Suddenly, with a new class of medications—protease inhibitors—on the market, drug cocktails became the first regimens that were really effective. “We now had three classes of medications, so we could hit the virus lots of different ways,” says Cohen. “That’s when we saw real change. Instead of just keeping people bumping around for a while, the drugs helped them start living and working again.”
That year, New York City therapist Robert Levithan remembers, “there was this kind of shock. People would come into my office saying, ‘I’ve been waiting to die’—they’d gone into debt, sold their life insurance, lived out all their dreams—and nothing was organized around ‘I could be here in 20 years.’ For some, the idea of readjusting again seemed harder than dying.” Levithan, who counsels HIV patients privately and at the nonprofit Friends in Deed, has been a patient himself since the early '80s, and was near death in the mid-'90s when he won a lottery and got early access to Crixivan, one of the first protease inhibitors. “I looked at it and went, ‘That’s what I’ve been waiting for,’” he says, today in good health.
For Rae, the ride was rougher. Just out of the hospital with her third round of PCP when she went on a protease inhibitor called ritonavir, she got so sick—”I’m talking about getting up at 5 in the morning and sitting in the bathroom bent over,” she says—at one point, she called Cohen and announced she was quitting the drugs. “I had decided that the quality of my life was more important than how long I could live.” A few weeks later when she went in for an appointment, her labs were bleak. Eight T cells. Cohen said, “You have to get back on the medicine.”
Rae held fast; she was done. Cohen, usually matter-of-fact, went ballistic.
“You have to give me some more time. You have to do this for me,” the doctor screamed. “There’s another medicine coming soon and they say the side effects are not as bad. You can’t quit now.” Rae had never seen her like this before. Through all their time together, they had avoided discussing the possibility of her death, but she could now hear it in her doctor’s voice, and that got to her. She agreed to go back on ritonavir for a couple of weeks.
“Back then, Rae was at that brink where many people as immunocompromised as she was didn’t make it,” says Cohen, who after 31 years at Cook County left this summer to focus on the WIHS research and her HIV project in Rwanda, Women’s Equity in Access to Care and Treatment (WE-ACTx). “We’d just be hoping each time a regimen was approved that it would help her get to the next place so we didn’t lose her. Because we lost so many people. She knows how lucky she was to make it through that period.”
We Hear You!