In a World with HIV Treatment, Why Are Teenagers Still Dying of AIDS?

Work described in this story was made possible in part by federal funding supported by taxpayers. At Harvard Medical School, the future of efforts like this — done in service to humanity — now hangs in the balance due to the government’s decision to terminate large numbers of federally funded grants and contracts across Harvard University.

Around 2013, Lenka Kolevic, a pediatric infectious disease specialist at the National Children’s Hospital in Lima, Peru, noticed a startling increase in the number of adolescent patients with HIV who were faltering in their treatment, missing so many doses that they were at risk of developing AIDS.

The number of children and adults dying from AIDS has fallen steeply since 2010 as the lifesaving combination of medications known as antiretroviral therapy (ART) has become increasingly available around the world. But even in places where these drugs are available, such as Peru, the number of adolescents dying from AIDS has continued to rise. AIDS is now the second-leading cause of death for adolescents worldwide, according to UNAIDS. A million adolescents between the ages of 15 and 19 around the world are living with HIV, according to UN estimates.

To keep HIV from progressing to AIDS, ART must be taken consistently. But in addition to the hazards of navigating complex clinical treatment with a still-developing brain, many young people with HIV face specific social challenges that can make it difficult or impossible for them to take the medication regularly.

“In a world where antiretroviral drugs are available, no one should die of this disease,” says Molly Franke, a professor of global health and social medicine in the Blavatnik Institute at HMS.

Franke is working in Peru to test a simple intervention that can help young people successfully manage their treatment and avoid developing AIDs. “Having HIV while you happen to be a teenager or young adult should not be a death sentence,” Franke says. “This research can help find ways to make sure that all adolescents and young adults get the support they need to manage their treatment and to thrive.”

But this study is now in peril due to the cancellation of federal research grants at Harvard Medical School. Without this research, it will be harder to keep adolescents and young adults living with HIV healthy, not just in Peru but wherever they live, including the United States, where adolescent drug adherence for HIV treatment is also dangerously low.

The kids are not alright

As her former patients entered the adult HIV care system and began to falter, Kolevic reached out to Socios En Salud, the Peru branch of the international health care delivery nonprofit Partners In Health, for help and began to work with Franke on defining the problem and finding ways to assist young people making the transition from pediatric to adult HIV care.

The first step for the researchers was to identify the most significant factors in helping and hindering kids on the drug regimen. When they learned that the odds of successfully following treatment depended heavily on personal challenges that many young people with HIV face, the researchers designed a program that could address those specific concerns.

“One of the major things we realized was that living with HIV in adolescence or young adulthood is often a marker for exposure to some of the cruelest circumstances imaginable, including sexual abuse and assault, extreme poverty, and absence of caregivers,” Franke says. “All of these factors conspire against treatment adherence in HIV care.”

In a world where antiretroviral drugs are available, no one should die of this disease.

Rosa, one of Kolevic’s patients, is an example. At seventeen, Rosa had been living with HIV since birth. Her parents had died, and her extended family lived far away, leaving her without any support. Plus, she had a one-year-old daughter of her own to care for. She experienced housing and employment instability and sometimes worked as a sex worker. She struggled with depression and had instances of suicidal ideation and a history of disengaging from care.

Franke and her team came up with a plan to meet the specific needs of young people in Peru, building on their initial research and the strengths of the community-based system PIH had nurtured in Peru. They collaborated with the Socios En Salud youth advisory board, comprising adolescents and young adults living with HIV, to guide them on the intervention and study design.

The program is called PASEO, which in Spanish means a stroll or walk, typically taken with friends. It’s also an acronym for peer accompaniment, support, and education. The core of the program is simple: Each youth is paired with a community health worker who accompanies the adolescent or young adult to their appointments for at least six months, helping guide them through the process. The patients also get training in how to navigate the health care system and to counter common misinformation about HIV and ART. If needed, participants are linked to social support services and mental health care.

Support systems

The U.S. National Institute of Allergy and Infectious Diseases funded a small pilot study of thirty people from fifteen to twenty-one years of age. Results published in 2022 showed that the intervention could improve adherence, social support, self-efficacy, and transition readiness.

The researchers also published a qualitative study that featured interviews with participants and caregivers about their experiences with PASEO. Their responses illustrate the remarkable transformations that were possible from something as basic as having a person walk with them to the clinic.

“To be honest, I could say that I was totally lost — disoriented — and I didn’t know how I was going to do it,” one participant said, describing how he felt when he started treatment. But PASEO helped, he said. “Sometimes, I got so low that I felt horrible, but knowing that I had someone who supported me, that helped me, emotionally more than anything. That was what I needed most at that time.”

After the results of the pilot study were published, the researchers received additional support from the NIH’s National Institute of Mental Health to expand the program. The pilot study focused on adolescents making the transition from pediatric to adult care. The new study includes adolescents and young adults with new HIV diagnoses, a distinct group but one that shares many of the social challenges experienced by their peers who were born with HIV. They often deal with stigma, isolation, complicated relationships with family, and homelessness, among other challenges.

The team completed enrollment for the larger trial in November 2024. One hundred and sixty youth between the ages of fourteen and twenty-three were randomized to either the full suite of PASEO activities or to a robust mental health and substance use screening program that linked them to the appropriate care they needed.

An uncertain future

The loss of federal funding is a devastating blow, Franke says, and not just because it means discontinuing the PASEO program for hundreds of young people before it is completed, leaving them once again without a support network. It could also mean real damage to the decades’ worth of research infrastructure that has been built by partnerships between HMS faculty and researchers, Socios En Salud, and the Peru Ministry of Health.

Franke notes that working with Socios En Salud in Peru, which has a sophisticated approach to delivering community-based care for a variety of complex diseases — such as HIV, mental health disorders, and drug-resistant tuberculosis — has great lessons to teach about how to deliver care anywhere in the world.

The PASEO project is just one part of a suite of effective, creative interventions for young people with HIV that Franke and colleagues have built, including social media campaigns on Instagram and TikTok to try to reduce HIV-related stigma, a rap video about how patients can keep their viral load down, and an AI chatbot to help triage mental health challenges for adolescents with HIV.

The federal grants that have been cancelled include so-called subawards that support work at institutions that collaborate with HMS. In this case, these funds were passed through HMS to Boston Medical Center, Brigham and Women’s Hospital, and the University of South Florida, and Socios En Salud.

“It’s heartbreaking to think that we might lose this study just as it was about to provide us with powerful evidence on an effective model for supporting adolescents and young adults through this precarious time,” Franke says. “When I think of the injustice to the participants, and to the millions of young people for whom an intervention like this could be lifesaving, I’m shattered.”

Jake Miller is a science writer in the HMS Office of Communications and External Relations.