Rural Uganda Survey Reveals Gaps in HIV Status Awareness Despite High Treatment Uptake

In the rural sub-county of Kyamulibwa in southwest Uganda, where HIV has circulated at generalised levels for decades, a large community survey has provided one of the most detailed pictures yet of how many people living with the virus actually know their status. The study, led by Keith Tomlin of the Medical Research Council/Uganda Virus Research Institute and London School of Hygiene and Tropical Medicine Uganda Research Unit with colleagues including Ronald Makanga, Janet Seeley, Emma Slaymaker, Robert Newton and Joseph Mugisha, was published in PLOS Global Public Health. Between June 2019 and July 2021, the team surveyed residents of 25 villages, recording self-reported HIV status before offering every participant an HIV test. This design allowed the researchers to calculate, with unusual precision, the proportion of people living with HIV who were already aware of their infection, the characteristics of those who had never tested, and the proportion of diagnosed individuals who reported taking antiretroviral therapy (ART).

The findings arrive at a critical moment for global HIV policy. UNAIDS has set the ambitious target of ending AIDS as a public health threat by 2030, and a central pillar of that strategy is the so-called 95-95-95 cascade: by 2030, 95 percent of people living with HIV should know their status, 95 percent of those diagnosed should be on sustained ART, and 95 percent of those on treatment should achieve viral suppression. Knowledge of HIV status is the essential first step in this cascade, because without a diagnosis people cannot begin treatment, cannot achieve an undetectable viral load, and cannot benefit from the dramatic reductions in morbidity and mortality that modern antiretroviral regimens provide. Population surveys that offer testing to every participant, regardless of what they report about their own history, are among the most reliable ways to measure progress toward that first 95 percent target, since they do not rely solely on what people remember or are willing to disclose.

Kyamulibwa is an ideal setting for such an assessment. The sub-county hosts a long-running population cohort established by the Uganda Virus Research Institute, and HIV prevalence there has remained high and sustained for years, making it representative of rural settings in the region where the epidemic is generalised, meaning transmission occurs widely in the general population rather than being concentrated in specific groups. The survey team approached residents across 25 villages and achieved remarkable coverage of the biomedical component of the study: every participant consented to HIV testing, and 99.9 percent of those tested received a result. This near-universal acceptance of testing within the survey itself is a striking contrast with the gaps in routine testing uptake that the survey uncovered, and it demonstrates that when testing is offered directly and confidentially in a trusted community setting, people are willing to learn their status.

The headline result is a mixed picture. Among survey participants found to be living with HIV, 83.6 percent of men and 88.0 percent of women already knew their status before the survey test. These figures fall short of the 95 percent target that UNAIDS has set for 2030, and they quantify the remaining diagnostic gap in a rural African setting with a mature epidemic. Yet the study also delivered an encouraging finding about the second stage of the cascade: among those who knew they were living with HIV, 99 percent of both men and women reported taking ART. This near-universal treatment uptake among the diagnosed suggests that once people in this community learn their status, they overwhelmingly engage with care, pointing to high acceptance of treatment and good availability of antiretroviral drugs in the local health system. The bottleneck, in other words, is not treatment provision but diagnosis.

HIV prevalence among survey participants was 8.1 percent among men and 10.5 percent among women, figures consistent with a sustained, generalised epidemic in which roughly one in ten adults carries the virus. At this level of prevalence, the researchers note, reliable access to sufficient ART is essential not only for the health of the individuals on treatment but for the community as a whole, because viral suppression among treated individuals dramatically reduces onward transmission. The high proportion of diagnosed individuals reporting ART use is therefore doubly significant: it protects the nearly one in ten residents living with HIV and supports the broader goal of bringing the epidemic under control.

One of the most consequential findings concerns the people who had never been tested. Among all survey participants, 39.7 percent of men and 28.7 percent of women reported that they had never previously tested for HIV. That such a large share of the adult population had never come into contact with HIV testing services, even in a community with decades of epidemic experience and active research infrastructure, underscores how unevenly testing reaches rural populations. The researchers found that never having tested was associated with older age, male sex, lower educational attainment and never having been married. Each of these associations points to a distinct mechanism of exclusion from health services, and together they sketch a profile of the individuals most likely to be missed by routine testing campaigns.

The association with male sex is particularly notable, because men in sub-Saharan Africa are consistently underrepresented in HIV testing and treatment cascades, a pattern often attributed to health services that are designed around maternal and child health clinics, to masculine norms that discourage help-seeking, and to employment patterns that keep men away from facilities during opening hours. The association with older age suggests that people who reached adulthood before the era of universal test-and-treat policies may never have been systematically offered testing, and that testing campaigns may disproportionately reach younger adults through school-linked, antenatal and youth-oriented services. Lower education likely reflects barriers of health literacy, awareness of services and confidence navigating the health system, while never having been married may indicate weaker contact with services that are often accessed through household or family pathways.

Crucially, the study found that the large group of never-tested individuals did not represent a large reservoir of undiagnosed infection. Among participants who had never previously tested, only 2.5 percent of men and 2.7 percent of women received a positive diagnosis in the survey. Because HIV prevalence in the community is far higher than this, the mathematics of the epidemic imply that most people living with HIV had already been tested at some point and knew their status, while the never-tested group was composed predominantly of people who were HIV-negative. This is an important nuance for programme planners: the diagnostic gap in Kyamulibwa is not primarily a matter of finding large numbers of undiagnosed infections hiding among the never-tested, but rather of the roughly 12 to 16 percent of people living with HIV who had tested at some point yet either did not learn their result, did not retain the knowledge, or did not report it accurately.

The distinction matters for strategy. If the undiagnosed fraction of people living with HIV were concentrated among never-testers, then simply expanding testing volume and reaching first-time testers would close most of the gap. Instead, the data suggest that interventions must also address people who have had contact with testing services but remain unaware of or have not disclosed their status, as well as the specific demographic groups, older men, people with less education and unmarried adults, whose participation in testing needs to increase. Tailored approaches might include community-based and home-based testing that reaches men where they live and work, index testing that offers screening to the contacts of diagnosed individuals, and integration of HIV testing into services that older and unmarried adults already use. Self-testing kits, which allow people to test privately before confirming at a clinic, represent another avenue that has expanded across the region since the survey period.

The study’s authors frame their results against the UNAIDS 2030 targets, and the arithmetic is sobering: with 83.6 percent of men and 88.0 percent of women living with HIV aware of their status, the community would need to close a gap of roughly seven to eleven percentage points to reach the first 95. In a generalised epidemic with prevalence above eight percent, each percentage point represents a substantial number of individuals who could start treatment, achieve viral suppression and protect their partners. At the same time, the near-universal ART uptake among the diagnosed, and the near-universal acceptance of testing when offered within the survey, are grounds for optimism. They indicate that the demand for and acceptance of HIV services in this rural Ugandan population are strong, and that the remaining challenge is one of reach and equity, ensuring that testing opportunities extend to the older, less educated, male and unmarried residents whom existing services have not fully engaged. As the 2030 deadline approaches, studies like this one, grounded in decades of community-level research infrastructure, provide exactly the granular evidence that national programmes and global funders need to direct resources where the diagnostic gap actually lies.

Subject of Research: Knowledge of HIV status and antiretroviral therapy uptake in a rural Ugandan population with a sustained generalised HIV epidemic

Article Title: Knowledge of HIV status in a rural Ugandan population with a sustained, generalised HIV epidemic

Article References: Tomlin, K., Makanga, R., Seeley, J., Slaymaker, E., Newton, R., & Mugisha, J. (2026). Knowledge of HIV status in a rural Ugandan population with a sustained, generalised HIV epidemic. PLOS Global Public Health, 6(10), e0007354. https://doi.org/10.1371/journal.pgph.0007354

Image Credits: AI Generated

DOI: 10.1371/journal.pgph.0007354

Keywords: HIV, Uganda, HIV testing, antiretroviral therapy, UNAIDS 95-95-95 targets, HIV prevalence, rural health, generalised epidemic, knowledge of HIV status, Kyamulibwa, PLOS Global Public Health, treatment cascade