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In one horrifying experience, Pascual remembers how a child, after taking medication, became violently ill and died in the middle of the night. Although the child had black blood coming from every orifice, Pascual says she was told to keep the child in bed and not take him to the hospital: "That was the most horrible death I ever experienced," she says. "It just gets to the point where you wonder, 'How much do you sacrifice one to save the other?' "
Others who worked at Incarnation have similar recollections: Renee Carlyle worked briefly as a nurse at Incarnation, beginning in 2002. "ICC was a mess. That was no joke," she says. "They put two people in a cubicle when the room wasn't adequate for one. You have kids with growths, bumps on their skin, skin conditions up the wazoo. That place wasn't really set up to house children that were that sick."
But the most difficult part, says Carlyle, was the psychological effect on the children of being around so much death. "It was psychological torture for all of those children," she says. "They are knowledgeable enough to know that they all have the same disease."
Thomas also remembers the trauma around him. "There were a lot of psychotic kids," he says. "That shit will have you just zoned out." He remembers a boy whose skin was covered in scabs, who would pick at them and then flick them at the staff. One day, the boy flicked a scab at Nicholas. The boy was soon transferred out. "They did that to the wrong white person," Pascual jokes.
Thomas remembers getting a phone call from the boy soon after he left. "He called me and said, 'Hey, I'm riding horses'—and the next day, dead."
Of the approximately 300 children who resided at Incarnation, the institute reports that about 60 took part in the drug trials. The children weren't told if they were included, so Thomas has no idea if he was one of them—he's never seen his own medical records. (According to some estimates by the child welfare agency, by 2003, 90 percent of HIV-positive children had participated in a clinical trial.) Thomas has made a few attempts to get access to his records, but a few years ago, when he and Pascual went to Harlem Hospital to request them, they were told by a clerk that the records were so extensive, it would cost thousands of dollars to copy them.
He made another attempt after he was contacted for this story: He sent letters to both the city's child-welfare agency and to Incarnation, where he was told the records cost 75 cents per page. Thomas requested that the fees be waived. Pascual has contacted Congressman Charlie Rangel's office to ask that they advocate for lowering the fees.
"After all he's been through, you'd think they owe him something," says Pascual.
Though he would like to know what was done to him, Thomas is also ambivalent about how much of the past he wants to uncover. "I've been through too much," he says. "Now, it's time to chill."
And Thomas says that's exactly what he's doing. He says he hasn't needed any medication in four years. "I feel fine. I could do whatever you could do, maybe even better," he says.
In the late 1980s, crack cocaine use had surged, and the spread of crack and HIV was a deadly combination overwhelming New York's child welfare system. In 1987, the Centers for Disease Control estimated that between 60 and 70 percent of injection drug users in the metropolitan area were HIV-positive. Pregnant women who used drugs often had their babies taken away from them at birth. Many of these children were born sick, and the mothers were often themselves sick, too, or unable to care for them because they used drugs. Few foster agencies were equipped to take care of sick children, or they were reluctant to take them because of the stigma associated with the disease. So the kids stayed in the hospital, with nowhere to go, for months at a time.
It was in that environment that Nicholas founded Incarnation. Like many other pediatricians who faced the AIDS crisis directly, he began to administer drug trials. In the days before AIDS medications had been approved by the FDA, people fought to get into such trials, most of which were being administered to gay men. But when more children—predominantly black and Latino—started to become infected, activists saw getting them into trials as a civil rights issue. Congress gave the pharmaceutical industry incentives to conduct pediatric AIDS trials. But because it took a long time to approve drugs and people were dying, activists pressured the FDA, in 1989 and 1990, to create what were known as "expanded-access" programs, so that people could have access to the drugs before they had even been approved. In the HIV epidemic, the lines between medical research and treatment were often blurred.
When the city's child welfare agency decided to enroll foster children in trials, they were aware of the historical weight of doing so. Even so, many things happened that suggest the protections supposedly in place for foster children didn't function properly—and a lot went wrong. "In a lot of cases, they did it right," says Ross. "But when it was wrong, it was so badly done, it's striking."
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