Collaborative HIV program improves long-term care for youths in the United States

Most adolescents and young adults in NIH-supported research network remained in care over 7-year period

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A pilot program to help adolescents and young adults with HIV navigate the health care system raised the percentage of youths who remained in care compared to national estimates, according to a study funded by the National Institutes of Health. NIH’s Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN) tested the program at sites throughout the United States and Puerto Rico.

Adolescents and young adults (ages 13 to 24 years old) with HIV are less likely than adults to receive an HIV diagnosis, seek health care, and remain engaged in care. These disparities may arise for a number of reasons, including lack of knowledge about how to obtain health care and a failure to develop relationships with health care providers. In turn, lack of engagement can impair access to anti-HIV therapy, which slows disease progression and can prevent HIV transmission to others.

To improve health outcomes for adolescents and young adults with HIV, researchers created a collaborative partnership that addressed National HIV/AIDS Strategy goals: increase access to care, reduce HIV-related health disparities, and improve coordination of the national response to HIV.

The pilot program tested research protocols developed by ATN researchers and collaborators from the Centers for Disease Control and Prevention (CDC), the Health Resources and Services Administration (HRSA), and NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).

The protocols required study sites to develop partnerships with local health departments, create formal referral networks between local HIV testing sites and service providers, and enlist full-time care coordinators to help ensure that newly diagnosed youth attend clinic appointments. The program also connected study sites with community stakeholders and local Ryan White HIV/AIDS Program Part D sites, which provide services for women, infants, children and youth with HIV.

Between 2009 and 2016, the researchers found that 75 percent of nearly 4,000 youths in the program were linked to care, with 88 percent remaining in care throughout the study. In contrast, CDC estimates that nationally, about 68 percent of youths with HIV are linked to care, with only 55 percent remaining in care.

The findings suggest that a youth- and community-focused program that integrates services at multiple levels is effective at improving long-term outcomes for adolescents and young adults with HIV. Furthermore, additional ATN research External Web Site Policy shows that community-based HIV testing strategies can help identify high-risk youths who are unaware of their HIV status.

ATN is funded by NICHD and other NIH components, including the National Institute of Mental Health and the National Institute on Drug Abuse.


Fortenberry JD, Koenig LJ, Kapogiannis BG, Jeffries CL, Ellen JM, and Wilson CM. Implementation of an integrated approach to the National HIV/AIDS Strategy for improving HIV care for youth. JAMA Pediatrics DOI: 10.1001/jamapediatrics.2017.0454 (2017)


About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): NICHD conducts and supports research in the United States and throughout the world on fetal, infant and child development; maternal, child and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit NICHD’s website.

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