Youth Born With HIV Face Unique Challenges


Transitioning from a child born with HIV into an adult living with HIV often means less adherence to antiretroviral medication therapies and a lower level of viral suppression. A new study delves into some possible reasons why.

Of the roughly 1.1 million people living with HIV in the United States today, approximately 12,000 are children and young adults who were infected with the disease before they were born. Perinatally-acquired HIV (PHIV) can result in a somewhat different set of challenges from those of a person who acquired HIV later in life. A new study published in the journal AIDS examined factors linked to nonadherence to antiretroviral therapy (ART) and unsuppressed viral load in a population of young people with PHIV.

The longitudinal study, led by Deborah Kacanek, ScD, a research scientist at Harvard University’s T.H. Chan School of Public Health’s Department of Biostatistics, examined data from 381 adolescents with PHIV who were part of the Pediatric HIV/AIDS Cohort Study. Children and caregivers were enrolled in this study, which encompassed 15 different clinical sites in the United States, as well as Puerto Rico, between 2007 and 2009. Subjects were divided into categories including preadolescence (8 to 11 years), early adolescence (12 to 14 years), middle adolescence (15 to 17 years), and late adolescence/young adulthood (18 to 22 years). The subjects were followed for an average of 3.3 years.

The investigators found that as children aged, they were less likely to stick to their ART regimens and less likely to be virally suppressed. In preadolescence, 31% of subjects were nonadherent—but by young adulthood, fully half were missing doses of medication. Sixteen percent of preadolescents were virally unsuppressed, but that number rose to 40% by young adulthood.

The factors associated with nonadherence varied as the subjects moved from age group to age group. In mid- to late adolescence, some youth with PHIV expressed concern about the side effects of ART, which may have led them to back away from it. One surprising discovery was that for preadolescents and early adolescents, using a buddy system—or relying on someone to remind them to take their medicationresulted in a higher level of noncompliance. “We did not distinguish the nature or quality of the relationship of the person providing adherence support,” the authors wrote in their report. “Adolescents ages 12-14 who often desire greater autonomy may not view caregivers’ adherence reminders as desirable.”

Living in a low-income household was associated with unsuppressed viral load in early and mid-adolescence, which the investigators hypothesized could be due to “food insecurity, insufficient resources to access quality care, or poverty-related stigma and psychosocial stress.”

Other factors negatively impacting the subjects’ rate of adherence included stigma, which encompasses the fear of inadvertent disclosure of HIV-positive status; using alcohol; having an unmarried caregiver; being directly or indirectly exposed to violence, such as when subjects live in a crime-ridden community; and experiencing other stressful life events. According to this study, middle adolescence was the period in which these structural and social factors were particularly impactful.

Understanding how age may affect youth who live with PHIV is important for all clinicians who deal with this population, the investigators stressed. “Services to help support adherence need to address both the age-related risks and build on the sources of strength and resilience among youth at different stages of development,” said Kacanek in a press release issued by Harvard’s T.H. Chan School of Public Health.

Although the authors of the study point out its strength in assessing both subjects’ adherence to medication and their levels of viral suppression over a relatively long period of time, they acknowledge a couple of limitations. These include the relatively small number of subjects in the 18-22-year-old category, as well as the fact that subjects were seen at various health care clinics and may not be truly representative of all young people with PHIV.

More research on children and adolescents with PHIV is needed globally, according to the investigators, as the vast majority of infected youth reside outside of the United States.

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