A Partners In Health collaborator in Peru is examining why many teenagers are struggling to consistently take their HIV medication, and working with team members to improve care and support for the vulnerable, often-overlooked patient group.
Dr. Molly Franke, a Harvard Medical School epidemiologist and longtime collaborator with Socios En Salud—as Partners In Health is known in Peru—turned her attention to adolescents living with HIV at the request of a colleague at National Children’s Hospital in Lima. About 130 adolescents receive HIV care and treatment at the facility, but many of them struggle to routinely take their medication. In the most severe cases, adolescents stay in the hospital until they show steady improvement. Franke and the SES team set out to find out why these young adults were struggling and what she and her colleagues could do about it.
There’s great potential for very positive results: The development and increasing availability of antiretroviral therapy in recent decades means HIV is no longer a death sentence. But taking daily medication is crucial for enabling patients—of any age—to live full lives.
The teen-focused project at National Children’s Hospital is still in its early stages, but Franke and PIH are making quick progress. They’ve piloted a support group for affected teens and have submitted a paper for publication in a medical journal. They’re also applying for grants to develop and study interventions to improve teens’ health.
We spoke with Franke about her research, the obstacles that teens living with HIV face, and the steps PIH is taking to keep them connected to care.
We don’t hear much about adolescent HIV in Peru. Why not?
HIV isn't as prevalent in Peru as it is in other countries in the world. We often hear about HIV in Africa, where the prevalence and overall numbers are much higher. But really, everyone is very far behind in addressing the needs of adolescents with HIV. It’s only relatively recently that large numbers of children who were infected with HIV at birth have survived into adolescence.
Whether we are talking about medication adherence, HIV diagnosis disclosure, HIV education, or sexual and reproductive health, there is a dire lack of interventions that have been designed specifically for adolescents and proven to be effective. It’s alarming because we’re seeing rates of death and non-adherence rise during adolescence, and this likely reflects the gap in health services for this group.
Adolescents living with HIV are not different from other adolescents in that they often begin to explore romantic and sexual relationships. Many health providers and caregivers feel unequipped to discuss sexual and reproductive health with this group, and health providers often have competing demands for their time. The consequence of this is that these conversations never happen and the adolescents don’t have the tools they need to make informed, confident decisions that will keep themselves and their partners healthy.
How do pre-teens fare?
Our own data, from a group of about 30 adolescents in Lima, suggests that most children were doing relatively well from 10 to 12 years of age. They reported taking their medications and generally did not report experimenting with sex, drugs, or alcohol. Beginning around age 13, adherence rates started to decline, and they began to report sexual activity and experimentation with drugs and alcohol. This, of course, is exactly what you would expect to see in adolescents, regardless of HIV status, in many places in the world. The take-home message is that interventions need to be in place to address these issues well before the age at which we begin to see these behaviors.
How did your research begin?
It was really at the request of a collaborator, an extremely committed pediatrician who provides HIV care to all of the children and adolescents living with HIV who receive their care at the National Children's Hospital in Peru. She approached the SES team for support in providing an adherence intervention for adolescents she treats. She was nearly at the end of her rope because the only recourse she has for kids that are not taking their meds is to hospitalize them, until they get back on track. Of course, this is not a long-term solution.
What obstacles do the teens face?
On top of the daily struggles that go along with the adolescent life phase and confronting an HIV diagnosis, many are living in poverty and don't have strong support at home. Among adolescents receiving care at the National Children’s Hospital in Lima, 25 percent are orphans of both parents and about 20 percent live in a group home environment.
What has the PIH team in Peru done so far to help these teens?
We are very much in the early stages of addressing this problem and so our initial approach has involved talking to HIV providers, guardians or caregivers, and adolescents, to understand their needs.
We piloted a peer-support intervention for adolescents living with HIV who, according to their physician, were struggling to maintain optimal adherence to their HIV meds. We work with a fantastic psychologist who trained women living with HIV to serve as facilitators of these groups. The goal was to give the adolescents a space to speak their minds and to take advantage of their peer group to help think through some of the challenges they were encountering. Overall, the adolescents really enjoyed the groups and we would love to find a way to keep them going. The groups also helped us understand what the adolescents were thinking about, what they are worried about, and what they would like to see in a future intervention.
What have you found so far?
Our first analyses have focused on factors that facilitate or interfere with good adherence to HIV medications, considering the perspectives of caregivers, health providers, and the adolescents. We started there because this information is, of course, critical to developing and tailoring interventions to this group. We found that barriers included a lack of caregiver support and supervision, pill fatigue, side effects from antiretroviral drugs, and a lack of information or misinformation about medications. Having strong support from a caregiver facilitated good adherence.
What interventions are being put in place to help these teens?
The two things we are aiming for right now include an accompaniment intervention to support adolescents with suboptimal adherence and an accompaniment intervention to help adolescents bridge the transition to adult care. For the adherence support intervention, we’d like to evaluate the traditional in-person accompaniment model as well as alternatives, such as accompaniment via mobile messaging, which might be more appealing to teens. For the transition intervention, the idea would be to provide accompaniment support through the precarious period during which they switch from the warm, nurturing environment of the pediatric clinic to adult health facilities and adult providers. The idea would be to match them to a peer-supporter who can accompany them to their initial clinic visits, help them enroll in health insurance, etc.
How did you start working in HIV?
In college, I began working at a summer camp in New York for children who were infected with or affected by HIV. This was 1998, so not long after the more potent and lifesaving combination antiretroviral regimens became standard in the United States.
I grew up in a small town that was not very diverse, and I had no idea of the extent to which HIV was disproportionately affecting the African-American community. It was a jolt to my admittedly naïve view of the world to find that nearly all the campers were either African-American or Latino. My first summer I worked with the oldest girls, who were 13, so not that far from my own age. After a week of spending 24 hours a day with the kids, the injustice felt personal, and I knew that I needed to find a way to contribute to fight against HIV and health inequality. For a while, I thought this would be through social work, but when I saw the ways in which researchers at Partners In Health were using data to move the needle on multidrug-resistant tuberculosis and access to antiretroviral treatment, I became convinced of epidemiology as my weapon of choice.
The good news is that, 20 years later, most of my former campers are healthy and have families of their own. Many adolescents’ concerns in Peru mirror those of adolescents living with HIV in the U.S. They want answers to questions like, What does my future look like? Can I have a romantic partner? Can I have children? Is everything going to be OK? Many have a hard time envisioning their future. I would love for them to know that their future doesn't have to be any different than the future of their peers.