Since the beginning of the epidemic, nearly 5,000 American children born with HIV have died. But there is still a robust group of some 6,015 children and young adults born with HIV who are thriving. How are they doing? Donna Futterman, MD, director of the adolescent AIDS program at Montefiore Medical Center in the Bronx, New York, gives us the lowdown on some issues facing HIV-positive teens today:

  • These kids grew up taking sequential- monotherapy (before multi-class therapy), so they tend to develop resistance. That can mean adapting to a series of new combos. Adherence programs are crucial and must recognize that for some youth, saying no is a way of asserting their independence and development. (The outlook may be better for today’s babies, who won’t grow up with the legacy of monotherapy.)
  • Taking HIV meds their entire lives can cause significant side effects such as lipoatrophy (skinny arms and legs, say). That’s hard enough for adults—imagine handling it with the other body-image crises of adolescence. Some kids develop lipid problems (high cholesterol), but cholesterol-lowering drugs aren’t made for children. Doctors need to find the correct doses.
  • HIV stigma in the schoolyard can cause depression, learning difficulties and attention deficit disorder. Many teens also struggle with dating and sex, worrying that they’ll never have a long-term relationship or children of their own. Talking to other positive teens can help—at summer camps for kids with HIV, for example.
  • Teenagers who rebel by refusing to take their HIVmeds may be left vulnerable to illness and other sexually transmitted diseases. Compassionate doctors and nurses can offer support and guidance.
  • Handling these issues requires support—and the patience needed for dealing with any teenager.  Counseling, which aids many positive people, can be especially critical for these young people.