The Teens Left Behind: Funding Cuts Impact Clinical Trial for Adolescents with HIV in Peru

Being a teenager is already difficult enough. Add in a chronic illness and every day can present new challenges. During a life stage that is often characterized by both physical and psychological changes, adhering to a consistent treatment plan can seem futile.

For adolescents living with HIV, the shift from pediatric to adult care can cause interruptions in their treatment, especially in vulnerable populations, due to a general lack of supportive, accessible health systems. Without consistent medication, HIV can develop into AIDS and a treatable condition could potentially become life-threatening.

Now, imagine trying to explain the gravity of this diagnosis to a teenager. Without fully understanding how critical their treatment is, seeking medical attention for HIV can become a chore. In fact, the data-although limited for this age group in particular-shows that adolescents living with HIV have worse health outcomes than adults over the age of 25 across the HIV continuum of care.

For Alexander*, a veterinary assistant in Peru, his symptoms caused a clinic to incorrectly diagnose him with dengue fever. Socios En Salud (SES), as Partners In Health (PIH) is known in Peru, happened to be hosting a sexually transmitted infection screening clinic around the same time, and Alexander wanted to attend. It was at this screening that his test came back positive for HIV.

"I was in shock," he remembers. "I couldn't accept it. While they were explaining it to me, my mind wasn't connecting with my body."

In Peru, approximately 98,000 people live with HIV, nearly a third of whom are adolescents or young adults. Despite this large population, there aren't many programs dedicated to their unique challenges.

To address this gap, SES partnered with Harvard Medical School (HMS) to launch an intervention called PASEO which provided accompaniment by community health workers (CHWs) to adolescents undergoing the transition to adult care. In Spanish, paseo means to stroll or walk, typically with friends. The name also serves as an acronym for peer accompaniment, support, and education.

"With the SES counselor, I could ask anything," said Onexis*, a PASEO participant. "I valued the company, the understanding, and the guidance. When you start out, you have a lot of questions, and they were there when I needed them most."

Following a pilot study, the National Institutes of Health (NIH) awarded a grant to Dr. Molly Franke, professor of global health and social medicine at HMS, in collaboration with SES, to fund a clinical trial that could help determine PASEO's impact on viral load suppression as well as overall well-being.

Studying the Critical Role of Accompaniment

PASEO enrolled and randomized 160 adolescents ages 14-23, either transitioning from pediatric HIV care to adult HIV care or receiving a new diagnosis, to one of two groups: a control group and an intervention group. The control group received the standard of care in Peru, as well as mental health screenings and referrals.

The intervention group received PASEO's model of accompaniment in addition to the standard of care. Each intervention participant was paired with a CHW for nine months, attended support groups and educational workshops, received mental health care screening and referrals, had monthly check-in visits, worked on personal development plans, and were accompanied to their clinic appointments. Surveys and chart reviews were completed by all participants at routine intervals throughout their 24-month participation in the study.

"We received a lot of information about [HIV], medications, and legal aspects, including what to do when looking for work," said Isaac*, a PASEO participant. "We also received psychosocial support and integration activities. In addition, each of us had a [CHW] who accompanied us to the hospital or visited us at home."

Following his diagnosis, Alexander was enrolled in the intervention group with people his age, like Isaac and Onexis.

"I always felt [SES] was by my side, as both an emotional and physical support," Alexander said. "I received psychological counseling because I didn't feel good about myself. During the walks and workshops, my anxiety began to decline, and I began to see it as just another aspect of life. Dealing with a condition like [HIV] isn't easy, even worse if you keep it a secret."

The clinical trial was in its third year of five when HMS was notified that its funding from the NIH had been terminated, and this collaboration with SES would face a precarious future. Their immediate concern was for the study's participants.

"There was a great feeling of concern that both the team's and the participants' investment in and commitment to the study may have been in vain," said Erika Gonzales, PASEO study coordinator. "We also felt disappointed that we would perhaps not be able to keep promises made to participants when they enrolled."

An Unpredictable Fate

Immediately following news of the United States government's funding cuts, Dan Nguyen, a medical student at Tufts University School of Medicine and current member of the Boston City PIH Engage chapter, arrived in Lima as a visiting student researcher for the PASEO project.

"I am still in awe of the staff's resiliency and rapport despite the study's uncertain future," he said. "They recognized that their patients were more than checkboxes, quantifiable viral loads, and CD4 counts [an indicator of immune system strength], making a meaningful and sustained impact on their livelihoods."

During his time in Lima, Nguyen was able to see firsthand the impact that PASEO was already having on adolescents participating in the study, like Alexander, Onexis, and Isaac.

"Many... used to be fearful of seeking out care, coming to terms with their socially stigmatized diagnosis, or starting an unfamiliar treatment regimen," he shared. "Today, they are confident, informed, and prideful young adults who recognize that HIV is not a death sentence, find comfort in support systems with similar diagnoses, and understand that being undetectable equals untransmissible. Their CD4 counts are at healthy levels, their viral loads are low, and they can lead healthy lives while living with HIV."

Onexis felt similar about her first-hand experience.

"It's essential to feel supported," she said. "Society sometimes pushes people away out of ignorance, but [SES] helps clear up these misconceptions. There are people who sink into loneliness, anxiety, or depression...but being able to help them see things differently is very important. Completing the treatment has given me more confidence."

With two years left in the trial and already promising results, PIH, SES, and HMS have generously stepped in to support this project until June 2026. However, as funding still remains in limbo, the final year of the study is still in jeopardy.

Beyond Teenagers in Peru

Cutting funding to research has massive implications on health advancements, particularly for vulnerable populations that are often left out of critical studies, like teenagers living with HIV in Peru.

"Without research, there is no public and global health. There are no recommendations for best practices or new ways to intervene to disrupt or improve the course of disease, both on an individual and population level," Dr. Franke's research team shared. "Research is a long-game field that the general public many times doesn't realize affects their lives on a daily basis."

Eliminating funding for PASEO's research in particular removes a critical resource for their study participants and will ultimately hurt adolescents living with HIV globally. Even in the U.S., adolescents living with HIV have alarmingly low adherence rates.

"If our research is permanently halted, we will be unable to continue accompanying participants," Gonzales said. "The health system and participant data we have collected won't be adequate to determine if the PASEO intervention could be scaled up and integrated into the Peruvian health system standard of care or beyond."

The PASEO program has the potential to inform HIV treatment for young adults around the world-bringing this large population tailored care that emphasizes humanity, accompaniment, and overall well-being.

*Last name omitted by participant request

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