Despite U=U, concerns about sharing HIV status persist among older people

Despite a decade of widespread ‘Undetectable equals Untransmittable’ (U=U) messaging and advances in HIV prevention, stigma has barely shifted for older people living with HIV in Amsterdam. ‘Disclosure concerns’ fell only marginally over ten years, while negative self-image did not change, report Dr Kevin Moody and colleagues in the Journal of Acquired Immune Deficiency Syndromes.

Interestingly, having lived longer with HIV seemed to be linked to a reduction in both disclosure concerns and negative self-image, while – as might be expected – having depression correlated with greater concerns. Living in a larger household, being a woman and being bisexual were all associated with worse stigma scores too, but these results may not be reliable as the numbers of participants matching these criteria were too small.

Stigma is multilayered and can affect many aspects of life, making thriving with HIV more difficult than it should be. Stigma can either be ‘enacted’, meaning someone with HIV experiences prejudice and discrimination because of their diagnosis, or ‘anticipated’, where the person themselves avoids people, events and situations because they anticipate being judged. Perhaps the worst form of stigma is when the person accepts all these negative beliefs and internalises them.

Even with major scientific advances such as the availability of effective treatment, U=U (meaning someone maintaining an undetectable viral load cannot transmit the virus sexually) and PrEP, stigma often remains more difficult to address than HIV itself. Biomedical progress has not necessarily translated into social change, and attitudes can be slow to shift.

The study

The researchers collected data on 116 participants who were part of the AGEhIV Cohort Study in Amsterdam. The participants had to have completed a stigma-related survey focusing mainly on disclosure concerns and negative self-image in the periods 2012-2014 and 2022-2024. The study essentially matched each participant’s original score with their score ten years later to follow the evolution of their experience of stigma.

The median age of the participants at the time of the first survey was 56 years and 93% were men, of whom most were gay. Nearly all participants were White with a median time since diagnosis of 14.5 years. Half had at least a college degree and almost all had a viral load below 200 copies, meaning they were virally suppressed.

Between 2012 and 2014, the participants completed the Berger HIV Stigma Scale, a questionnaire that measures different aspects of stigma, including disclosure concerns and negative self-image.

The domain of disclosure concerns reflects how at ease someone with HIV is with sharing their status, including items about keeping HIV a secret and being careful about who they tell. The negative self-image domain captures internalised stigma, with items addressing guilt about having HIV, feelings of being a bad person due to the diagnosis, and diminished self-worth resulting from others’ attitudes towards HIV.

For each question the options were strongly disagree (one point), disagree (two points), agree (three points) and strongly agree (four points), with higher overall scores reflecting greater stigma. For example, agreeing that “Telling someone I have HIV is risky” would score three points. In the shortened form of the questionnaire used in this study, with each of the two domains completed, the lowest possible score would be three per domain as each domain contains three questions, while the highest score would be 12 points.

Disclosure concerns

Over ten years the average disclosure concerns score shifted from 8.37 to 7.97 points, translating into a 3% drop. Given all scientific and social developments in the last ten years in the landscape of HIV treatment, this drop feels insignificant. There didn’t seem to be any specific factor that correlated with reduction in someone’s disclosure concern score except the time since their diagnosis. Participants who had been living with HIV longer at baseline tended to have lower average scores. Every additional decade past their diagnosis was estimated to be associated with 1.10 points or roughly 12% reduction in their disclosure concern scores. Conversely, living in a large household was linked to an increase in the scores by the same magnitude.

Negative self-image

Over a decade, negative self-image scores remained practically unchanged, only shifting from 5.17 points to 5.07. Women’s scores got worse over the ten years, but the reliability of this statistical finding is questionable as there were only eight women in the analysis. Similarly to disclosure concerns, each additional decade past their diagnosis at baseline was linked to a reduction in negative self-image by 0.72. Being bisexual and having depression, on the other hand, both equally correlated with a worsened self-image with 1.86 points rise in their scores; again, there weren’t enough bisexual participants to draw reliable conclusions.

Final thoughts

It is discouraging that disclosure concerns and negative self-image did not improve in a cosmopolitan city like Amsterdam that has a well-educated and relatively large community of people living with HIV, especially given U=U and the widespread use of PrEP. This may not hold true for all people living with HIV and it may only be a local observation since the study focuses only on 116 participants in Amsterdam. These findings may also partly reflect the characteristics of an older cohort, many of whom have lived through the more difficult periods of the HIV pandemic, during which negative experiences and societal attitudes may have left a lasting psychological impact.

However, the positive finding of this study is the reduction in disclosure concerns and negative self-image as people lived with HIV for longer. This may reflect the resilience and adaptability that develops in people with HIV over time.