Although screening and treatment efforts have cut mother-to-child HIV transmissions to about 200 annually in the United States, some 10,000 US patients now living with HIV were infected as infants. Seven agencies of the National Institutes of Health (NIH) are studying 451 of these patients, now ages 7-16, as they grow from adolescents to adults, providing some of the first long-term data on their prospects.
Many were weakened by earlier therapies that did not control the illness and now take more onerous regimens, often with harsher side effects, to control the virus. The more complex pill schedules make adherence difficult, and some youths are asserting themselves by refusing to remain adherent.
"I'm expecting a second wave" of young people "dying because they're not adherent" to antiretroviral therapy, says Dr. Ellen Cooper, medical director of pediatric and adolescent HIV at Boston Medical Center. Some doctors allow the youths to stop medication altogether rather than take their "last rescue regimen poorly," she said.
Preliminary data suggest that kids on antiretrovirals have high cholesterol, raising concerns about heart problems, said Dr. Russell Van Dyke, the NIH study's co-principal investigator. Their bone density is poor, and many have health and behavioral problems, though it is not known whether these issues are related to HIV/AIDS or the difficult family life many experience. "These lessons are going to be applicable to the rest of the world," Van Dyke said.
The "One Love Project" helps youths as they transition from the "very nurturing network" of pediatric programs to adult care, said founder Rena Greifinger. One weeklong retreat featured music therapy, role-playing HIV disclosure, and discussions about sex and having children. "We wanted to give them so much information that we get that buy-in to stay on their meds, and they learn how to live with HIV," said Bill Kubicek, executive director of One Love's parent organization, Next Step.