Stigma, Consent Rules and Pill Fatigue Keep Young People Off HIV Prevention Pills

Adolescents and young people carry a disproportionate share of the global HIV burden, yet the most powerful biomedical prevention tool available to them is reaching only a fraction of those who need it. A systematic review published in BMC Health Services Research has now mapped, with unusual precision, why pre-exposure prophylaxis, or PrEP, so often fails to move from clinic shelves into the daily routines of the people most at risk of acquiring the virus. The findings suggest that the problem is not a single flaw in the drug or the delivery system, but a dense web of barriers operating at the level of the individual, the family, the clinic and the wider society.

PrEP works by maintaining antiretroviral drugs in the bloodstream and mucosal tissues before any exposure to HIV occurs. When taken consistently, oral tenofovir-based regimens reduce the risk of sexual HIV acquisition by well over ninety percent, and the principle has been extended to injectable and ring formulations. The pharmacology is straightforward: steady drug concentrations prevent the virus from establishing infection after it enters the body. The clinical challenge, as the new review makes clear, is everything that happens before and after the prescription is written.

The research team, led by Abdulmuminu Isah and Ifunanya Mary-Ann Onyia of the Person-Centered HIV Research Team at the University of Nigeria, Nsukka, conducted the review under a pre-registered PROSPERO protocol. They searched PubMed, Scopus, Web of Science and Google Scholar for English-language studies published between 2012 and 2024, focusing on adolescents and young people aged ten to twenty-four years, a range extended to twenty-five in three studies whose populations overlapped with the target group. From 16,339 records screened, only sixteen studies met the inclusion criteria, a number that itself reveals how thin the evidence base remains for this age group despite the scale of the epidemic among them.

The sixteen studies spanned North America, Latin America and sub-Saharan Africa, giving the synthesis a genuinely global reach. Because the review included populations at risk of HIV acquisition across three continents, the barriers identified are not artifacts of any single health system or culture. Instead, they recur with striking consistency, from university clinics in the United States to community health posts in eastern and southern Africa, wherever young people weigh whether a daily pill is worth the social and practical costs of taking it.

For PrEP uptake, the first decision point, the review identified stigma as the dominant barrier. Young people reported fearing that being seen collecting or taking the pills would mark them as promiscuous, HIV-positive, or sexually active in ways their families and communities would condemn. This fear operates through what social scientists call anticipated stigma, the internalized expectation of judgment before any actual encounter with it. It can stop a young person from even entering a clinic, and it interacts with low awareness of PrEP, since many eligible adolescents had never heard that prevention medication existed at all.

Mistrust of healthcare providers emerged as a second uptake barrier with deep roots. Adolescents described suspicion that clinics would disclose their sexual behavior to parents, judge their choices, or push moralizing advice rather than confidential care. Concerns about side effects, particularly nausea and other gastrointestinal symptoms associated with tenofovir-based regimens, added a biomedical dimension to the hesitancy. Financial constraints and practical access problems, including clinic distances, opening hours that conflict with school, and the cost of transport, completed the picture of a prevention tool that is free on paper but expensive in practice.

Sustained adherence proved even harder than initial uptake, and the barriers here were more granular. Pill fatigue, the weariness of taking a daily medication for a risk that has not yet materialized, was repeatedly reported. This is a pharmacologically rational complaint: maintaining protective drug concentrations requires consistent dosing, yet the perceived benefit is abstract while the daily burden is concrete. Side effects that fade for most users within weeks can nonetheless drive discontinuation during the critical early period when adherence habits form.

Structural barriers dominated the adherence findings. Transportation challenges made repeat clinic visits difficult, particularly for rural adolescents. Parental consent requirements in some jurisdictions meant that young people could not start or continue PrEP without involving a parent, a condition many avoided because it risked disclosure of sexual activity. Negative healthcare provider attitudes, including judgmental or dismissive treatment, eroded the trust that adherence depends upon. The review’s multilevel framework, spanning individual, interpersonal and structural domains, shows how these barriers reinforce one another: a judgmental provider confirms a young person’s mistrust, which deepens anticipated stigma, which makes the next clinic visit less likely.

The authors argue that addressing these barriers requires interventions matched to adolescents’ developmental and socio-cultural contexts, not simply scaled-down versions of adult programs. They call for stigma reduction campaigns, strengthened provider training in adolescent-friendly and nonjudgmental care, reform of consent policies that currently exclude minors from confidential prevention services, and expansion of youth-centred service models, including flexible hours, community-based delivery and digital support. The review’s conclusions carry particular weight because they are grounded in a systematic synthesis rather than single-site experience, and because the sixteen included studies, though few, consistently converge on the same barrier domains across three continents.

The implications extend beyond PrEP itself. As long-acting injectable prevention and the dapivirine ring enter adolescent populations, the same structural barriers, consent rules, stigma, mistrust and access constraints, will determine whether these innovations reach the people who need them. The review suggests that the technology of HIV prevention has outpaced the sociology of its delivery, and that closing the gap for adolescents and young people is now among the most urgent tasks in the global response to the epidemic.

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Subject of Research: Barriers to the uptake and sustained adherence to pre-exposure prophylaxis among adolescents and young people at risk of HIV acquisition: a systematic review of available evidence

Article Title: Barriers to the uptake and sustained adherence to pre-exposure prophylaxis among adolescents and young people at risk of HIV acquisition: a systematic review of available evidence

Article References: Isah, A., Onyia, I. M.-A., Ezike, C. B., Eze, C. C., Sospeter, S. B., Orok, E., Onyehalu, J. C., & Ezenri, G. (2026). Barriers to the uptake and sustained adherence to pre-exposure prophylaxis among adolescents and young people at risk of HIV acquisition: a systematic review of available evidence. BMC Health Services Research. https://doi.org/10.1186/s12913-026-15650-4

Image Credits: AI Generated

DOI: 10.1186/s12913-026-15650-4

Keywords: Barriers, uptake, sustained, adherence, pre-exposure, prophylaxis, adolescents, young, people, risk, acquisition, systematic