Transitioning From Pediatric to Adult HIV Care: A Q&A With Dr. Vicki Tepper
Vicki Tepper, Ph.D.
Children who are infected with HIV perinatally—those who acquire HIV from their mothers during pregnancy, labor or delivery or from breast-feeding—require an extended period of medical care.
What happens to them when they grow into adulthood? Vicki Tepper, Ph.D.—chief of the Division of Pediatric Immunology & Rheumatology, and director of the Pediatric AIDS Program, at the University of Maryland School of Medicine in Baltimore—presented findings of a study that a clinical team at the Pediatric AIDS Program there conducted on transitioning these youths to adulthood at the 20th International AIDS Conference (AIDS 2014) in Melbourne, Australia. We talked to her about her results.
Tell us more about the briefing at the AIDS 2014 conference.
I presented at the clinical-studies poster session. My topic was looking at transitioning young people born with HIV from pediatric care to adult care. The transition program that we established used three components: readiness assessment to determine what skills and resources are needed to prepare youth for transition to adult care; gradually shifting responsibilities for health-related tasks at a developmentally appropriate time; and identifying and linking with an adult-care provider. We took a small sample of our young people (19 total) who had successfully transitioned and evaluated their health outcomes to see if they had improved, remained the same or grew worse. And everyone did well. We realized that the components of our program worked.
What are the challenges for the youths who were perinatally infected with HIV?
Many people born with HIV didn't always know that they had it. Their parents didn't always disclose it [to them]. Their parents would tell them they had a blood disease or an infection, or even things like cancer or asthma. The reason for that is, by disclosing the child's status to them, the parents would have to disclose their own status. And mothers don't want to give their child that information because they want to protect them from the stigma and discrimination. They also aren't comfortable talking about how they were infected because oftentimes it was through risky behavior.
Do you think that society is more sympathetic to someone who was perinatally infected, as opposed to someone who was behaviorally infected?
Unfortunately, I believe it's true. There are people who think that children who were born with HIV are innocent, versus someone who made a choice and engaged in risky behavior to acquire HIV. I don't necessarily agree with that characterization. This kind of thinking just expands the stigma and makes life harder for people living with HIV.
Tell us more about the health-care coverage for young people living with HIV in Baltimore.
Actually, finding health-care coverage was where they experience the fewest challenges. In the state of Maryland, access to health care for people living with HIV has been seamless and free. There's a program within the Medicaid system that gives them access to care as well as medication. And this has always been true in Maryland, even before the Affordable Care Act. In Maryland, all children living with HIV had access to health care. For those who fell out of the system for various reasons, we were fortunate to have money from [the] Ryan White [Program], which would cover their health care while we tried to get them reconnected to coverage.
Young people who move into adulthood with HIV have to have a transition plan. What is involved in that plan? Who develops it?
We start in advance of the transition, making sure that they are prepared. If you're a child living with HIV, you've probably been visiting specialists your whole life. You may have gotten used to having all your needs taken care of in one place. You might not have had to learn about how to get insurance, how to fill a prescription, etc. So we teach the patients how to do these things. We also make sure that they've met the providers who will care for them in the adult setting. We are very fortunate to have relationships with certain providers who take care of adults with HIV. It's a collaborative effort between our team and the health team. We have lots of communication, and that helps to make it a success.
Candace Y.A. Montague is a freelance health writer in Washington, D.C., who has been published in The Grio, The Body and Capital Community News.