Research: Adolescents In Peru Face Barriers to HIV Treatment Adherence

Globally, AIDS-related deaths among teens are on the rise, even as fewer adults and children are dying of the disease, despite monumental advances in treatment and research over the past decade.

UNAIDS estimates that 1.8 million adolescents worldwide are living with HIV. In Latin America and the Caribbean, as many as 74,000 adolescents live with the disease.

Although antiretrovirals are widely available, young people living with HIV face several barriers to treatment adherence. The issue is especially potent in North and South America—a recent meta-analysis of data from 53 countries found that the lowest treatment adherence among adolescents living with HIV occurred in the Americas.

Why are so many adolescents struggling to follow their treatment? And how can the barriers they face be addressed? A team of PIH researchers based in Lima and Boston set out to investigate just that in a study, “Barriers and facilitators to antiretroviral therapy adherence among Peruvian adolescents living with HIV: A qualitative study,” published in the medical journal PLOS ONE.

“People worldwide have a lot of concern for children with HIV, but few wonder what happens to these children once they grow up and become adolescents,” says Milagros Wong, RN, a co-author of the study and Project Manager at Socios En Salud, as Partners In Health (PIH) is known in Peru.

Understanding The Barriers 

In Peru, around 79,000 adults and children live with HIV, according to UNAIDS. Free antiretroviral therapy was only made available in 2004. As a result, adolescents living with HIV now are among the first generation to reach adulthood.

PIH researchers collected data through a series of support groups with 18 adolescents living with HIV – all receiving care at an urban hospital in Lima, Peru – and in-depth interviews with their families, caregivers and health care workers.

What they found was unsettling but not surprising: young people living with HIV faced barriers to treatment adherence at the individual, family or caregiver, and structural levels. Among the factors that interfered with treatment were life-stage and emotional issues, negative side effects from therapy, a lack of information about HIV, and a lack of economic resources.

For example, young people struggling to form their identity and navigate relationships sometimes choose to hide their HIV status—even if it means skipping treatment.

“HIV is highly stigmatized,” says Dr. Molly Franke, co-author of the study, Harvard Medical School epidemiologist, and longtime collaborator with PIH in Peru. “So a lot of the adolescents haven’t necessarily disclosed outside of their immediate family. In order to keep their diagnosis private, they may not take their medication when they are out with friends or with a boyfriend or girlfriend, out of fear of disclosure and rejection.”

PIH researchers also found that complicated family relationships or lack of familial support can make staying on treatment feel like an uphill battle for adolescents.

Add systemic barriers to the mix and it becomes even more clear how treatment adherence can be especially difficult for adolescents. Sometimes there are complications in health insurance registration, delays in accessing care, or a complicated and bureaucratic transition from pediatric to adult care. A routine HIV care visit, for example, can last an entire morning, preventing parents from going to work and creating financial difficulties for families living on the margins.

All of this overlays challenges that some adolescents living with HIV already face, as the HIV epidemic disproportionately impacts the LGBTQ+ community. Wong recalls hearing from a transgender patient who hesitated to participate in the research due to fears of rejection.

“The needs are pretty multi-factorial, and I think that was a major lesson for us,” says Franke. “We knew the needs were going to be complex to a certain degree, but I think we underestimated them.”

Finding Solutions

The study highlights the need for interventions that consider not only the individual but also their environment—from their families and caregivers, to the health system. And it has since paved the way for the team to investigate potential solutions, including an ongoing intervention funded by the National Institutes of Health.

Called The PASEO Project, the intervention aims to provide social and medical support to adolescents living with HIV who are especially at-risk for non-adherence to treatment. Guided by the model of accompaniment – a key pillar to PIH’s work around the world – the intervention involves training entry-level health workers and lay workers to help adolescents navigate a complex health system, serving as their liaisons with formal health services.

The PASEO Project draws upon PIH’s 20-year history of working in Peru, specifically its long-running, community-based accompaniment and social support programs for patients with HIV and tuberculosis. The intervention seeks to help adolescents bridge the transition from pediatric to adult care and to address the social and economic conditions that prevent them from adhering to treatment.

The work is ongoing, but the takeaway is clear: no adolescent living with HIV should die from AIDS when treatment is accessible and when support can be made available.