NICHD Efforts in HIV Prevention and HIV/AIDS Treatment for Adolescents and Young Adults
This year's World AIDS Day activities focus on efforts to eliminate new HIV/AIDS infections in adolescents and young adults, to treat those who are infected, and to make future generations AIDS free. This focus is part of the "Getting to Zero" theme (Zero New HIV Infections, Zero Discrimination, and Zero AIDS Deaths) that currently guides global efforts.
In 2010, approximately 12,000 young people aged 13 to 24 years in the United States became infected with HIV, accounting for about one-fourth of all new HIV infections in the United States that year, according to the Centers for Disease Control and Prevention (CDC). Furthermore, about 60% of all youth with HIV do not know they are infected. This means they do not receive treatment, and that they can infect others without knowing it.
In keeping with the World AIDS Day theme, we highlight some of the NICHD's efforts in HIV prevention and treatment for adolescents and young adults, with a focus on two important areas. The first is the need to prevent new infections among youth and to identify and treat newly infected adolescents and youth before they experience illness or death and before they unknowingly infect others. The second is research to understand how long-term HIV treatment affects adolescents and young people who were infected at birth.
The following information describes how two large-scale projects—the Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN) and the Pediatric HIV/AIDS Cohort Study (PHACS)—and a series of international research efforts are exploring these important areas. Select a link to learn more.
The NICHD ATN is the only domestic research network devoted entirely to studying HIV-infected and at-risk youth 12 to 24 years old. The ATN, supported by the Maternal and Pediatric Infectious Disease Branch (MPIDB), with co-funding from the National Institute of Mental Health and the National Institute of Drug Abuse, was created in 2001 with the mission to study treatment, adherence to treatment, and clinical management of HIV-infected youth and to evaluate possible preventive agents, such as vaccines and topical and oral medications intended to prevent HIV transmission in uninfected but at-risk adolescents and young adults.
The Network currently has 14 clinical sites in major urban areas around the nation. All of these sites are strongly linked to their communities, and all have a staff committed to the ATN's clinical and community prevention efforts. Recent research at the ATN's clinical sites found that the fragmentation of services to diagnose and treat HIV infection is an especially significant barrier to getting HIV-infected adolescents and youth into treatment. A strong citywide network helps to coordinate and link critical care services1.
One current ATN initiative, Connect to Protect (C2P) , aims to create positive structural changes in the community to affect youth's risk for HIV infection. The initiative is examining interventions that respond directly to the specific needs of adolescents and young adults; these interventions might include making sterile needles available, extending the after-school hours of a health clinic, or offering a monthly HIV workshop in Spanish.
A recent C2P study found that in a group of 1,457 high-risk youth from 15 U.S. cities who agreed to be tested for HIV, 1,047 (72%) had been tested before (but 113 of these did not know the results), and 410 (28%) had not been previously tested. The HIV infection rate in this group was very high (more than 15% among the males.2 Testing was more frequently part of sexually transmitted disease services than of regular health care.3
Another ATN initiative is SMILE in CARING for YOUTH (Strategic Multisite Initiative for the Identification, Linkage, and Engagement in Care of Youth with Undiagnosed HIV Infection), which links the ATN's research and treatment network with the CDC's HIV testing and counseling programs for adolescents and young adults at high risk for HIV infection. Since it was implemented in 2010, this innovative program has newly identified more than 2,800 HIV-infected youth in major metropolitan areas across the United States and Puerto Rico, and approximately two-thirds have been successfully linked to care.
Some recent findings from this initiative include:
- A recent study of ATN clinics found barriers to linking adolescents to and retaining them in HIV treatment to improve health outcomes. These barriers appeared at several levels and included navigating health insurance; obtaining transportation to appointments; sharing contact information between testing agencies, local health departments, and clinics; lack of youth friendliness (see explanation below) in clinics; and youth readiness for care.4
- In other recent research, aspects of "youth friendliness" in clinics serving HIV-infected youth were found to include both a clinic's physical and social environments. Changes in the physical clinic space and in staff training to make clinics friendlier to youth may reduce barriers to linking HIV-infected adolescents to care.5
- Recently, the ATN received a grant from the Department of Health and Human Services Secretary's Minority AIDS Initiative Fund (SMAIF) to forge a new partnership with the Health Services and Resources Administration (HRSA). The grant's purpose is to expand the successful SMILE in CARING for YOUTH collaborative and add four HRSA-funded sites to conduct an implementation science protocol called the Project for the Enhancement and Alignment of the Continuum of Care (PEACOC). This project will test the effectiveness of providing motivational interviewing training to youth outreach experts as a way to improve linkage to care and retention of HIV-infected youth across the nation. PEACOC implementation starts in the first quarter of 2014. SMAIF and the projects it funds are an important part of the National HIV/AIDS Strategy.
Project PrEPare is a comprehensive HIV prevention study, supported by the ATN, for at-risk youth in major metropolitan areas across the United States. The study will obtain data on the safety and effectiveness of the HIV antiretroviral medication Truvada® in youth. Research shows that this medication is safe and effective for preventing HIV infection in at-risk adults, and it is approved by the Food and Drug Administration (FDA) when taken as pre-exposure prophylaxis or "PrEP." PrEP is a daily dose of a medication that is typically used in combination with other antiretroviral medications to treat HIV infection, but that is now given by itself for prevention to reduce the risk of acquiring HIV. Project PrEPare is a single-arm study to test Truvada® in at-risk adolescents and young adults ages 15 to 22 years.
The project will also evaluate patterns of PrEP use, rates of PrEP adherence, and patterns of sexual risk behavior among young men and transgender women who have sex with men and who take Truvada®, to help determine if PrEP could become a part of a comprehensive HIV-prevention package for this population in real world settings. All participants will receive a proven behavioral HIV-prevention intervention and will have ongoing counseling, regular testing for HIV and sexually transmitted infections, and medical follow-up along with a daily dose of PrEP with Truvada®. Results from a smaller pilot study showed that the intervention was feasible, with 62% of the young men in the study adhering to the medication regimen and an overall reduction in risky sexual behavior among participants.6
The PHACS, also supported by the MPIDB and with co-funding from eight other NIH Institutes, focuses on U.S. youth infected with HIV at the time of their birth, and on U.S. youth who are HIV-uninfected but who were born to mothers with HIV. PHACS is looking at how these youth are growing and developing as they enter adolescence and young adulthood. PHACS began in 2005 to address two critical research questions about pediatric HIV:
- What is the long-term safety of fetal and infant exposure to antiretroviral therapy (ART)?
- What are the effects in adolescents of HIV infection acquired at birth?
To answer these questions, PHACS currently conducts two major studies:
- The Surveillance Monitoring for ART Toxicities Study in HIV-Uninfected Children Born to HIV-Infected Women (SMARTT) follows children exposed to ART in the womb but not HIV infected. The study has more than 3,000 children currently enrolled, with about 250 newborns enrolled yearly to follow children exposed to the latest combination ART.
- The Adolescent Master Protocol (AMP) studies the effects of treatment for HIV infection in adolescents who were infected at birth. The protocol has enrolled about 400 adolescents who will continue to be followed to assess the long-term effects of HIV treatment. Among recent AMP findings:
- Both HIV-exposed but uninfected and HIV-infected youth have a high risk of language impairment. However, the risk does not appear to be associated with ART.
- Youth who were HIV-infected perinatally (at birth) enter puberty slightly later than perinatally HIV-exposed but uninfected youth. However, current ART treatment, as opposed to what was in use from 1991 to 1993, may result in more normal timing of puberty.
- Among sexually active, perinatally HIV-infected youth, 62% reported having unprotected sex. Among those who had unprotected sex, 42% had detectable levels of HIV in their blood. Among the youth with detectable levels of HIV, 22% had a form of the virus that was resistant to multiple classes of AIDS drugs.
- In a subset of sexually active, perinatally HIV-infected youth, roughly 20% reported that they did not know their HIV status the first time they had sexual intercourse.
For more information on recent findings and collaborations, see Getting the Facts on PHACS, the Pediatric HIV/AIDS Cohort Study.
In 2012, 5.4 million7 young people age 10 to 24 were living with HIV, according to the World Health Organization. Given the recent global scale-up of ART programs, more infants and young children living with HIV in resource-limited settings will survive into adolescence and young adulthood. In addition, these youth will face the potential consequences of prolonged HIV infection and long-term ART, which may be worsened by diseases commonly seen in developing countries — such as malaria, tuberculosis, and malnutrition — that are generally not occurring in resource-rich countries such as the United States. The NICHD has extended its studies of perinatally infected youth to address the challenges such youth in resource-limited countries will confront as they enter adulthood. The ultimate goal of this research is to optimize the health of these perinatally infected youth, allowing them to lead lives free of avoidable complications associated with lifelong HIV infection and its treatment. Through a funding opportunity announcement (FOA), RFA-HD-12-207: Perinatally HIV-Infected Youth In Africa and Asia, the NICHD is funding five grants addressing different aspects of perinatal infection in youth in resource-limited countries. The grants include:
- A study evaluating development, psychiatric disease, chronic lung disease and early markers of cardiovascular disease in over 500 perinatally infected youth and uninfected youth in Cape Town, South Africa.
- A study to evaluate host epigenetics and mitochondrial function in relation to HIV disease, ART, and metabolic complications in perinatally infected youth in Johannesburg, South Africa.
- A randomized controlled trial of a family/household intervention that relies on cartoons to convey messages to promote overall and mental health and reduce high-risk behaviors in perinatally HIV-infected adolescents in KwaZula-Natal, South Africa.
- A study to evaluate bone health in youth with perinatal HIV infection receiving ART in South Africa.
- A study to evaluate risk factors for human papillomavirus acquisition, persistence, and disease in perinatally HIV-infected and uninfected female and male adolescents in Thailand and Vietnam.
In recent NICHD-funded research in Malawi, Africa, among youth aged 16 to 26, investigators asked if the growing availability of ART led people to believe that AIDS was a less serious threat to their health or if they were optimistic about the effectiveness of treatment. Overall, the investigators found limited optimism about treatment, but young men who were optimistic were more likely to engage in risky sexual behavior.8 Earlier work in the same group of young people used a novel technique to measure their uncertainty about whether they were infected with HIV. The investigators found that uncertainty about their HIV status influenced the youth's goals and strategies for achieving those goals. For example, those who were uncertain about their HIV status were more likely to want to accelerate their childbearing than those who were certain they were uninfected.9
Another recent study in Ghana, funded through the NICHD's Population Dynamics Branch, used interviews with adolescents and their parents to explore attitudes about when adolescents should initiate sexual activity and how to protect themselves from pregnancy and sexually transmitted infections such as HIV. The investigators found different approaches among the adults in different villages, but all of the parents agreed that there were significant barriers to communicating about sex with their children. The youth were universally ambivalent about communicating with their parents about sex.10
The NICHD supports and collaborates on activities that aim to reduce the number of new infections among adolescents and young adults and to improve HIV/AIDS treatment in the United States and around the world. Through these continued efforts, the Institute works with the global community toward the goal of an AIDS-free generation.
To learn more about World AIDS Day and about NICHD research on preventing HIV infection and treating HIV/AIDS in adolescents and young adults, select one of the links below.
- World AIDS Day
- NICHD Resources:
- Maternal and Pediatric Infectious Disease Branch (MPIDB)
- Population Dynamics Branch
- Previous spotlights on HIV/AIDS:
- Related A to Z Topics: HIV/AIDS
- NICHD News Releases on HIV/AIDS
- FOA: RFA-HD-12-207: Perinatally HIV-Infected Youth In Africa and Asia
- NIH Resources
- World Health Organization
Originally Posted: December 1, 2013
- Tanner, A. E., Philbin, M. M., Ott, M. A., Duval, A., Ellen, J., Kapogiannis, B., Fortenberry, J. D., The Adolescent Medicine Trials Network for HIV/AIDS Interventions. (2013). Journal of HIV/AIDS & Social Services, 12(3-4), 424-436.
- Barnes W., D'Angelo L., Belzer M., Schroeder S., Palmer-Castor J., Futterman D, . . . Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN). (2010) Identification of HIV infected 12-24 year old men and women in fifteen US cities through venue-based testing. Archives of Pediatrics and Adolescent Medicine, 164(3), 273–276.
- Straub, D. M., Arrington-Sanders, R., Harris, R., Willard, N., Kapogiannis, B., Emmanuel, P., . . . The Adolescent Medicine Trials Network for HIV/AIDS Interventions (ATN). (2011). Correlates of HIV testing history among urban youth recruited through venue-based testing in 15 US cities. Sexually Transmitted Diseases, 38(8), 691–696. PMCID: 3155007
- Philbin, M. M., Tanner, A. E., Duval, A., Ellen, J., Kapogiannis, B., & Fortenberry J. D. Linking HIV-positive adolescents to care in 15 different clinics across the United States: Creating solutions to address structural barriers for linkage to care. AIDS Care. Advance online publication. PMID: 23777542
- Tanner, A. E., Philbin, M. M., Duval, A., Ellen, J., Kapogiannis, B., Fortenberry, J. D., & The Adolescent Medicine Trials Network for HIV/AIDS Interventions (2013). "Youth friendly" clinics: Considerations for linking and engaging HIV-infected adolescents into care. AIDS Care. Advance online publication. PMID: 23782040
- Hosek, S. G., Siberry, G., Bell, M., Lally, M., Kapogiannis, B., Green, K., . . . The Adolescent Medicine Trials Network for HIVAIDS Interventions (ATN). (2013). The acceptability and feasibility of an HIV preexposure prophylaxis (PrEP) trial with young men who have sex with men. Journal of Acquired Immune Deficiency Syndromes, 62(4), 447–456. PMID: 24135734
- Yeatman, S., Dovel, K., Conroy, A., & Namadingo, H. (2013). HIV treatment optimism and its predictors among young adults in southern Malawi. AIDS Care, 25(8), 1018–1025. PMID: 23227888
- Trinitapoli, J., & Yeatman , S. (2012). Uncertainty and fertility in a generalized AIDS epidemic. American Sociological Review, 76(6), 935–954. PMC: 3334314
- Asampong, E., Osafo, J., Bingenheimer, J. B., & Ahiadeke, C. (2013). Adolescents and parents' perceptions of best time for sex and sexual communications from two communities in the Eastern and Volta Regions of Ghana: Implications for HIV and AIDS education. BMC International Health and Human Rights, 13(40). PMID: 24070548