by Nancy Humphrey
Adolescents and young adults living with HIV in Middle Tennessee are being ushered into adult care through a special transition clinic that focuses on adult skill-building and individualized therapy and discussions.
The Vanderbilt Adolescent and Young Adult Health Care Transition Clinic helps prepare young patients with HIV, between the ages of 16 and 26, for adult care at the adult HIV clinic — the Comprehensive Care Clinic (CCC) at Vanderbilt Health One Hundred Oaks.
That model of care is now part of the Southeastern Pediatric and Adolescent HIV Collaborative, a partnership with St. Jude’s Children’s Research Hospital and Emory University. The three programs are working together to implement and share best practice transition services with plans to bring other programs into the fold in the future.
“We’re all learning from each other in this collaborative,” said Neerav Desai, MD, assistant professor of Pediatrics in the Division of Adolescent and Young Adult Health. “We’ve found that control of HIV in the young adult and adolescent population is some of the poorest in all their lifetime. When they are children their viral load is undetectable. When they’re adults their viral control will be better.
“But the most vulnerable time is during adolescence, when there are lot of changes going on. Our program focuses on this time when they’re the most vulnerable, so we can help them deal with a chronic illness during the transition from childhood to adulthood,” Desai said.
About 100 children and adolescents with HIV in the region are seen at the Pediatric and Adolescent HIV Clinic.
The Centers for Disease Control and Prevention reported 91 cases of HIV in children younger than 13 diagnosed in the United States in 2018. Youth 13 to 24 years accounted for 21% of all new HIV diagnoses in the United States and dependent areas in 2017.
Pediatric and adolescent patients with HIV usually fall into two categories: mother-to-child transmission where the mother passes the virus to her child during pregnancy, childbirth or breastfeeding; or youth who acquire HIV during adolescence through sexual transmission. Most of Vanderbilt’s young patients (about 60%) fall into the first category, Desai said. Nationally the mother-to-child transmission rate has been lowered to about 1% or less in the United States and Europe, according to the National Institutes of Health (NIH).
HIV (human immunodeficiency virus), which causes AIDS (acquired immune deficiency syndrome) first became widely known in the United States in the 1980s. AIDS weakens the immune system, gradually destroying the body’s ability to fight infections and certain cancers. There is no cure for HIV/AIDS but antiretroviral drugs can slow the progression, allowing HIV to become a manageable chronic disease.
Medication adherence can be difficult for children and adolescents, Desai said, and patients in the transition clinic work with Desai, Aima Ahonkhai, MD, MPH, health care navigator DeWayne Parker, LBSW, social workers and case managers from the CCC who all come together to offer multidisciplinary care for this patient group.
In addition to providing health care, the transition clinic also works on building adult life skills — how to manage medication, make health care appointments, navigate health insurance, use Vanderbilt University Medical Center’s secure My Health at Vanderbilt tool to keep track of health care information and how to apply for a job.
But there’s also a large psychological component. Sometimes families withhold a child’s HIV status until adolescence, Desai said.
“It’s what we refer to as a culture of silence,” he said.
“We spend a lot of time in this clinic unpacking stigma and trauma in their lives,” Desai said. “Young people with HIV suffer a lot of psychological trauma from the get-go because they’re having to deal not only with a diagnosis but also how all of that fits into the context of family as well. A lot of it is tied to how they learned about their own HIV status. There’s often trauma related to that. Our team helps unpack that and build their resilience factors which will promote their health and well-being.”
One of the most important aspects of the transition clinic is that everything is geared toward the youth.
“We offer youth-friendly services to our patients. Everything in our clinic, from our front-desk staff to the pharmacy and laboratory, is geared toward them so they feel welcomed, not ostracized or stigmatized. It’s a key part of what we do,” Desai said.
