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For children born with HIV, adhering to medication gets harder with age

Researchers found that from preadolescence to young adulthood, the prevalence of non-adherence increased from 31% to 50%. In addition, the prevalence of detectable viral load among the same age groups increased from 16% to 40%.

Paolo (not his real name), now nine years old, doesn’t know he has HIV.

Ang alam niya lang, kailangan niya uminom ng gamot gabi-gabi (He just knows he has to drink his meds every night),” his aunt, Virginia, said. “‘Di niya alam para saan ‘yun; basta gamot lang na kailangan niya (He doesn’t even know what they’re for; just that they’re meds that he needs).”

Paolo calls Virginia “mama”, but his biological mother – Virginia’s younger sister Vicky* – already passed away over eight years ago. And when his biological mother died, Vicky’s child Paolo was given to Virginia, the ate (elder sister).

And now that Paolo is growing up, this – the taking of medicines – continues to be an issue that Virginia said is one of those that “we continue to face.”

Apparently, though, this issue is not exactly surprising.

A new study in the US found that children born with HIV were “less likely to adhere to their medications as they aged from preadolescence to adolescence and into young adulthood.” The study – led by researchers at Harvard T.H. Chan School of Public Health – found that additionally, the prevalence of detectable viral load – an indication that the virus is not being managed by medications and a factor that’s often associated with non-adherence – also increased with age.

The study is one of the first to examine why different age groups stop adhering to treatment (non-adherence). While the factors related to non-adherence varied by age group, youth who were concerned about side effects of the drugs were less likely to be adherent at most ages.

“As they approach adulthood, many youth face challenges, such as entering new relationships, managing disclosure of their HIV status, and changing to an adult HIV care provider. Ensuring successful HIV medication adherence before and throughout adolescence is critical,” said lead author Deborah Kacanek, research scientist in Harvard Chan School’s Department of Biostatistics. “We found that the factors that either supported adherence and a suppressed (undetectable) viral load, or made it harder for youth to adhere to treatment, varied depending on their age.”

The study was published in AIDS.

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This study is worth highlighting in the Philippines because HIV continues to also affect younger Filipinos.

In April 2019, there were 38 newly diagnosed adolescents 10-19 years old at the time of diagnosis. Further, two cases were 17 years old and 36 cases were 18-19 years old. Almost all (95%) were infected through sexual contact (six male-female sex, 19 male-male sex, and 11 had sex with both males and females), one was infected through sharing of needles and one had no data on mode of transmission. In addition, there were three diagnosed cases less than 10 years old and all were infected through vertical (formerly mother-to-child) transmission.

Globally, 1.8 million adolescents live with HIV; and adhering to regimens of antiretroviral therapy (ART) is key to managing the disease and reducing the risk of transmission. And yet “sticking to a daily regimen of medicine, however, is especially challenging for adolescents and young adults, who are navigating a range of physical, cognitive, social and emotional changes.

“Adherence can be more complicated for youth growing up with perinatal HIV, whose lifelong experiences with HIV, stigma, and multiple antiretroviral medications may pose challenges to achieving viral suppression that are different from youth who acquire HIV later in life.”

To better understand these challenges and why young people may not adhere to their medications, the researchers followed 381 youth with perinatally acquired HIV for an average of 3.3 years. The youth were participants in the Pediatric HIV/AIDS Cohort Study, which follows children and youth born with HIV or born exposed at birth to HIV to determine the impact of lifelong HIV and the long-term safety of antiretroviral regimens.

The preadolescents, adolescents and young adults in the study ranged from age 8 to 22 and were recruited from 15 different clinical sites in the US, including Puerto Rico. As part of the study, the researchers examined results from blood tests that measured viral loads, and they examined nearly 1,200 adherence evaluations in which study participants or their caregivers self-reported any missed doses of medication in the prior seven days.

The researchers found that from preadolescence to young adulthood, the prevalence of non-adherence increased from 31% to 50%. In addition, the prevalence of detectable viral load among the same age groups increased from 16% to 40%.

For each age group, different factors were associated with nonadherence. For example, during middle adolescence (15-17 years old), alcohol use, having an unmarried caregiver, indirect exposure to violence, stigma, and stressful life events were all associated with nonadherence.

“It is important to talk with youth about how to take medications properly, but our study highlights the need for those who care for these youths to focus also on age-related factors that may influence adherence,” Kacanek said. “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.”

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Other Harvard Chan School researchers who contributed to the study include Claire Berman, Yanling Huo, and Katherine Tassiopoulos.

Back in the Philippines, Virginia said that “mabuti ngang may gamot na (si Paolo)… pero marami pa ring isyu na di nasasagot, di nagagawan ng paraan (it’s good Paolo’s already taking antiretroviral medicine… but there are still numerous unanswered/unresolved issues).”

And with dealing with children living with HIV, this still continues to be the case…

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