Tanya is a spirited 22-year-old with dark, cropped hair, a penchant for body art, and a secret. On a chilly October afternoon, she sits at a round wooden table in a knitting shop in New York City and shows off her latest tattoo. Her companion, a 56-year-old nurse practitioner named Susan Ledlie, examines the design and grins, pulling up her sleeve to display her own.
Ledlie and Tanya (name changed) are an unlikely pair. Ledlie, a plump older white woman with a brisk maternal air, teaches graduate nursing at Molloy College in Long Island, New York, since retiring from her job as a nurse practitioner in 2010. Tanya, young and black with a cavalier attitude towards adulthood, grew up with her grandmother in Brooklyn, NY and wants to be a hairdresser. Yet the two have been close friends for 16 years. In 1995, when Tanya was six years old, her grandmother took her to Ledlie’s clinic in Brooklyn. Tanya had HIV. She had become infected at birth when she came in contact with her mother’s blood, and was diagnosed soon after.
“The first time I saw Susan, I remember I had to get my shots for school,” says Tanya. “I was kicking and pushing Susan and she had to bring three other doctors in to hold me down.” From that day forward, Ledlie saw Tanya at least once a month, as her primary Aids care provider - a role that included prescribing drugs, doing regular medical checkups and providing teenage counselling. “Visits became like a family thing,” Tanya laughs.
Ledlie’s role was almost unthinkable three decades ago. In June 1981, the US Centers for Disease Control and Prevention reported the first known case of what would eventually become known as Aids. Just a year later doctors began to diagnose the disease in children. Initially, they were treated with zidovudine - the first antiretroviral medicine designed to treat HIV - or nothing at all. During these early years of relevant ignorance about the disease, 45% of HIV-positive children died before their tenth birthdays. “We were focused on pain relief and comfort, without any thoughts about the child’s future,” says George Siberry, an adolescent HIV expert at the US National Institutes of Health.
But in the years since Tanya was diagnosed, there has been a dramatic shift in what it means to be born HIV-positive, particularly in western countries. Today, babies born to mothers infected with HIV receive anti-HIV medication within hours of birth and are not breast-fed so as to avoid passing the virus from mother to child. As a result, fewer than two babies in every 100 born to HIV-positive mothers in the US and Europe become infected with the virus. With treatment, 95% of kids now reach the age of 10. “Since antiretroviral therapy, we’ve showed they can live well into adulthood, although we don’t know for how long,” says Siberry.
This is Generation HIV. They are the first kids and young adults to have battled a lifelong infection since birth, and scientists are trying to understand what that really means. “There are so many unanswered questions,” says Yvonne Kingon, an HIV nurse practitioner in New York City who now treats Tanya. “Are these kids’ immune systems the same when they’ve been fighting a virus since birth? What does it mean to be an adult and have been on multiple medicines throughout your life?” she says.
A long-term study of 450 HIV-positive youth aims to answer some of those questions. The Pediatric HIV/AIDS Cohort Study (pHAcs) began in 2005 and now has 21 sites across the United States. Researchers are studying two groups of adolescents: those infected with HIV at, or shortly after, birth, and those who were exposed to treatments as infants or during foetal. They hope to understand the effects of the long-term use of HIV medications and the impact of HIV on the biology and psychology of these children. Infectious disease specialists have been closely watching these young survivors, analysing their cellular makeup and immune health, and characterising the HIV virus in the context of these patients’ infections. The study will also collect information on immune function, neurological development, cardiac function, bone growth and metabolism. Siberry says the early results show some worrying results, such as increased risk of heart attacks, attention deficit and language learning abilities, as well as higher rates of asthma. “But we won’t know for sure until we’ve followed this pioneering group into their 30’s, 40’s and 50’s,” he says.
According to the United Nations, at the end of 2010, there were 3.4 million children (under 15 years of age) living with HIV around the world – nine out of 10 living in sub-Saharan Africa. Every hour, around 30 children die as a result of Aids, but in the developed world, paediatric HIV has morphed into adolescent HIV, and brought with it a fresh set of obstacles. When Ledlie started as a paediatric HIV nurse practitioner in 1991, most kids who came to her clinic died by age three or four. “They stopped crawling and holding their bottles…they became stiff as a board until they died,” she says. But a couple of years into her practice, she reached the first landmark in her fledgling career. “The first kid whose kindergarten graduation I could go to, that was a big thing,” she says. “It was like, ‘wow’.”