Every day Sarah M. Wood, MD, a fellow in the Craig-Dalsimer Division of Adolescent Medicine at The Children’s Hospital of Philadelphia, is stunned by the resilience and strength of the young people she works with who are living with human immunodeficiency virus (HIV) and the obstacles that they overcome. Yet, they have fallen into an extremely vulnerable space.
At this point, about 2.1 million adolescents worldwide are living with HIV. While recent data has shown that AIDS-related mortality declined from 2005 to 2012 for adults and children, adolescent mortality has increased by 50 percent. What is creating such a huge equity gap in treatment for adolescents?
In an editorial published in JAMA Pediatrics, Dr. Wood and colleagues suggest that adolescents living with HIV are a “generation at stake.” A significant barrier to achieving their optimal care is that youth with HIV who are older than 13 often are treated as adults, which fails to recognize that adolescence is a unique and distinct transition of physical, psychosocial, and neurocognitive development. These years also are a crucial time for youth who are not yet HIV positive but are at high risk for infection.
“They are still developing their brains, and they are subject to intense social pressures,” Dr. Wood said. “Those things can work together for youth who are not yet infected with HIV to increase their risk of becoming HIV positive through risk-taking behaviors. Or, for youth who have been born with HIV, their adherence to antiretroviral therapy is going to face significant challenges during this adolescent period.”
As an adolescent medicine expert, Dr. Wood recognizes that the concept of future orientation — teens’ ability to think about how poor adherence when they are feeling well will eventually impact their future health — is a difficult concept for most teens with chronic conditions to grasp. But that should not relegate the teen years as a tumultuous time of bad choices. Instead, she said, we must begin to prioritize adolescent HIV care as a “dynamic process of overlapping stages” and develop systems tailored to help youth navigate this continuum.
Then researchers can begin to pinpoint and pilot test interventions targeted at different levels of that cascade:
- finding youth who are HIV positive
- increasing uptake of testing
- facilitating linkage to care interventions
- looking at the barriers to prescribing antiretroviral therapy
- identifying the challenges and facilitators for adolescents to stay in care and adhere to antiretroviral therapy throughout their life cycle.
Dr. Wood especially is interested in exploring how to use and strengthen adolescents’ social support, which includes family, partners, and other people in their social network, to make improvements in these areas. Part of a program at CHOP called the Adolescent Initiative uses an integrated, medical case management model that emphasizes social support when helping youth to become more knowledgeable and competent in managing their HIV. Oftentimes, this means working with youth who have been left homeless due to stigma and discrimination related to their sexual orientation or gender identity.
“We’re doing work to optimize the social support that adolescents have because we can care for them while they’re in the clinic, but in the month or months in between when we see them, they must rely on the support that they have in their lives to be able to sustain treatment,” Dr. Wood said. “Many of our youth are thinking about where are they going to sleep that night and how are they going to eat. The stress of survival may outweigh their ability to think about taking a medication.”
Hearing firsthand from youth living with HIV about their daily difficulties has prompted Dr. Wood to pursue some important research questions: What factors in adolescents’ lives may challenge their ability to stay adherent to their therapy and stay suppressed from a viral load standpoint? And over time, how does housing, social support, substance abuse, and mental illness play into our ability to provide optimal care for youth living with HIV? Another one of her research priorities is looking at ways to increase uptake of HIV pre-exposure prophylaxis.
“We live in an amazing time,” said Dr. Wood, who has 17 years of experience in the area of HIV and sexual health preventative care. “Keeping people adherent with their antiretroviral therapy can reduce their risk of transmitting to their partners. But we also now know that we can give antiretroviral medicine to our negative youth and keep them from becoming HIV positive.”
Prior to starting her Adolescent Medicine fellowship, Dr. Wood was a site investigator at CHOP for Project PrEPare, which aims to examine the acceptability and feasibility of daily medication to prevent HIV for young men who have sex with men. The study began in 2012 and included approximately 100 participants between the ages of 15 and 17 from 12 cities across the U.S. Now in its final stages, the project is a prime example of adolescent-specific research that will be essential to advancing HIV care and prevention for youth in years to come.
“We need to begin to build an adolescent care competent world in HIV,” Dr. Wood said.
Project PrEPare was organized by the Adolescent Trials Network for HIV/AIDS Interventions, a research network fund by the National Institutes of Health that develops and implements intervention trials for HIV positive and at-risk adolescents.