MINNEAPOLIS — The frightened teenager spent her 14th birthday at Children’s Hospital in Minneapolis. For weeks, the doctors didn’t know what was wrong — until she tested positive for HIV.
“I don’t remember anything else they said after the words HIV,” said Ashley, who is now 22 and spoke on condition that her last name not be published.
“I just cried.”
Ashley, who acquired the virus from her mother, is part of a growing generation of American children who have come of age with HIV — born with the virus but living long, fairly normal lives, thanks to antiretroviral drugs developed during the 1990s.
But as this generation ages, many are confronting their own set of challenges: drug resistance, access to care, social stigma, sexual relationships and uncertainty about the virus’ long-term effects on their bodies. Young women must also consider the challenges of being HIV-positive and pregnant.
One risk for kids who are born HIV-positive is that they may have a higher risk of their virus becoming resistant to drugs because they take medications much longer than people who get HIV as adults, said Dr. Laura Hoyt, a pediatric HIV specialist at Children’s.
The virus can replicate millions of times a day. As it multiplies, its genetic material gets peppered with mutations, or genetic errors. If a mutation lets a virus evade a drug’s ability to stop it from churning out progeny, it can have a “survival advantage,” unless other medications are there to suppress it, Hoyt said. That’s why HIV patients take a cocktail of drugs.
In the long term, the medications can also have side effects, including anemia, bone-development problems and high cholesterol.
Research also suggests that children who have grown up HIV-positive may have a higher risk of cognitive problems, learning disabilities and depression. But whether these disorders are related to the virus and medications directly is hard to tease out, Hoyt said, because the diagnosis itself comes with a lot of emotional baggage. Only a handful of studies have examined the long-term effects of HIV and HIV medications, according to Dr. Lynne Mofenson, chief of the Pediatric, Adolescent and Maternal AIDS Branch at the National Institutes of Health.
Stigma is another challenge for HIV-positive youth. Taking pills in public can raise questions they may not want to answer — but the alternative increases their risk of becoming drug-resistant.
Ashley dropped out of school at 15 because fielding her classmates’ countless questions was emotionally exhausting. As she discovered, HIV can also take a toll on budding relationships. Telling her partners about her HIV status was difficult, and for a long time, she thought no one would love her or want a family with her.
“It shattered my dream of a fairy tale life,” she said.
But medical breakthroughs are increasing her shot at those dreams. Proper treatment can lower the chances HIV-positive people will infect their partners.
In addition, since the 1990s, the rate of perinatal transmission — when an HIV-positive mom gives the virus to her baby during pregnancy, labor or through breast milk — has decreased sharply, from 25 percent of cases to about 2 percent.
“That’s been a real success story in HIV prevention,” said Peter Carr, director of the Health Department’s program in AIDS and sexually transmitted diseases.
Ashley hopes to have children someday, but right now she is focusing on studying nursing. She is an honors student at a local community college and an active member of her church.
“I’ve been on my death bed,” she said. “I’m here for a bigger purpose … until I do that I’m not leaving this Earth.”
Daniela Hernandez writes for the (Minneapolis) Star Tribune.