HIV stigma is now more dangerous than the virus – my research shows how to address this

Speaking at the 16th International Aids Conference in 2006, the then UNAids executive director, Peter Piot, remarked: “Since the beginning of the epidemic, stigma, discrimination and gender inequality have been identified as major causes of personal suffering, and as major obstacles to effective responses to HIV.”

Now, in the fourth decade of the HIV crisis, this statement remains largely true. Despite the leaps and bounds that have been made in the treatment and prevention of HIV, stigma and discrimination continue to harm the lives of people living with HIV, and hinder efforts to stem the epidemic globally.

HIV today: a changed landscape

HIV is now an extremely treatable condition with excellent outcomes. Those living with HIV who are on treatment can expect to live a healthy life with a normal lifespan.

Crucially, medications are so effective that they reduce the amount of the virus in the body to undetectable levels. This means people living with HIV cannot pass on the virus to others – a condition known as “U=U”, or undetectable equals untransmittable. The evidence supporting this is robust and spans over 20 years.

The most comprehensive evidence for U=U stems from the Partner and Partner II studies, which aimed to determine the risk of transmission between HIV positive and HIV negative partners when the positive partner is virally suppressed.

These large observational studies tracked a combined 2,020 couples – both heterosexual and gay – over several years of follow-up. Between the two studies, participants reported 134,000 acts of condomless sex, however no HIV transmissions between couples were recorded.

The evidence was incontrovertible and study authors concluded the risk of transmission when a person is virally suppressed is zero. This is extremely reassuring for people living with HIV, who can feel confident that they cannot pass the virus on to their partners.

It is also good news for public health, with the World Health Organization endorsing the U=U message and affirming the importance of treatment as a vital preventative tool in the ongoing HIV epidemic.

Stigma: a persistent obstacle

Despite these extraordinary medical advancements, HIV-related stigma remains a persistent obstacle that negatively affects the health and wellbeing of people living with HIV.

The first European-wide community survey of people living with HIV, published by the European Centre for Disease Control (ECDC) in 2023, reported that among the 3,272 respondents, one in three had not told a single family member their diagnosis for fear of rejection.

In the same study, a third of respondents also reported experiencing stigma in healthcare settings, with almost a quarter reporting having healthcare refused or delayed as a result of their HIV status.

A subsequent ECDC study of HIV-related stigma among over 18,000 European healthcare workers, published in July 2024, found that almost two-thirds worried about drawing blood from patients with HIV and a quarter reported using double gloves with such patients.

That HIV-related stigma in healthcare settings is so prevalent and commonplace is particularly troubling. Such experiences create distrust between people living with HIV and their healthcare providers This can lead people living with HIV to avoid attending healthcare services, which has obvious knock-on effects for health.

Moreover, there is evidence that experiences of HIV-related stigma in healthcare settings are associated with poor adherence to antiretroviral medication and treatment failure.

This is bad for individual health, but also may have negative impacts on public health, given that treatment is such a vital prevention tool.

Reducing HIV stigma in healthcare settings

A range of factors including fear of HIV, negative attitudes, lack of policies and a lack of training of healthcare workers can drive HIV-related stigma in healthcare settings.

In Ireland, where my research is based, as part of a wider project in 2022 we carried out a survey of 295 healthcare workers to measure stigma in Irish healthcare settings. Our findings, published earlier this year, provide tentative new evidence for the potential of the U=U message to reduce HIV-related stigma.

Like other studies, we found that fear of HIV was a major driver of stigma in healthcare settings in Ireland. Just over half of our survey respondents said they would worry about drawing blood from a patient living with HIV, and over a quarter reported using special measures they would not use with other patients, such as double-gloving.

What was unique about our study was that, for the first time, we also measured knowledge of U=U among healthcare workers. We found that, while other factors were relevant, knowledge of U=U was the most powerful protective factor against fear of HIV and stigmatising behaviour.

In other words, healthcare workers who are confident in the U=U message are much less likely to stigmatise against people living with HIV.

Stigma is a complex social phenomenon, and no single intervention will be fully effective against it. However, our research suggests that increasing awareness and acceptance of U=U would be an effective, low-cost and scalable action that might inch us closer to a stigma-free future.

Elena Vaughan received funding from the Irish Research Council for her research on HIV stigma in Irish healthcare settings.