Getting to zero: The persistence of HIV stigma

One of the themes for this year’s World AIDS Day is getting to zero, with a focus on 2030 as the point at which the UK is aiming to achieve zero new cases of HIV, zero HIV-related deaths, and zero HIV stigma. Although there are reasons to be optimistic about achieving the first two of these objectives, a sociological view of stigma as an enduring social process casts doubt on whether it will be possible to ‘end’ HIV stigma.

The most recent report on the UK HIV epidemic provides reasons to be optimistic: numbers of new diagnoses are lower than in previous years and the country as a whole has met the ambitious UNAIDS ‘90:90:90’ targets of having 90% of cases of HIV diagnosed, 90% of people living with HIV taking treatment and 90% of people on treatment having an undetectable viral load (when treatment reduces the amount of virus in the blood to such a low level that standard tests cannot pick it up).

Dr Tom Witney, Postdoctoral Research Associate in the Faculty of Wellbeing, Education and Language Studies (WELS), talks to us about HIV stigma and how recent advances in HIV treatment not only promise to alter the dynamics of the epidemic but have the potential to transform the experience of people living with HIV.
 

Preventing transmission – preventing stigma?

Having an undetectable viral load is important in terms of prevention because studies have proven that people living with the virus who are undetectable cannot transmit it. Although doctors had suspected this might be the case for many years, recent studies have proven it beyond all reasonable doubt.

Trials involving thousands of couples – both gay and straight – where one partner is HIV positive and the other HIV negative (also known as a serodiscordant relationship) failed to find a single instance of transmission within the relationship. So, the more people who know their HIV status, the more people can start treatment and stay healthy, the fewer people there will be who can transmit the virus, and the fewer new cases there will be.

Alongside prevention using condoms and pre-exposure prophylaxis (PrEP), ensuring access to HIV testing and treatment could play an important part in helping the UK achieve this important goal.

Thinking about treatment as a form of prevention (sometimes abbreviated to TasP) highlights its importance as a way to tackle the epidemic, working at the level of the population, but it can also be important for people living with HIV and their partners.

If you don’t have to worry about transmitting the virus, is there a need to worry about HIV at all?
 

Raising awareness

This is the impetus behind a campaign run under the banner of U=U (undetectable means untransmittable) which involves more than 950 organisations from 100 countries around the world to raise awareness of the fact that a person with an undetectable viral load does not transmit the virus to their partners.

Their aim is to use the science of TasP to tackle the enduring stigma of living with HIV. This is an important goal as stigma can be a barrier to people accessing testing and care, further driving the epidemic. Despite this work, a 2019 survey suggested that fewer than one-in-five people in the UK were aware of TasP.

But what does TasP mean for people living with HIV and their partners in the day-to-day?
 

Everyday experiences

This was the question motivating my PhD research into the experiences of gay and bisexual men in serodiscordant relationships in the UK.

I interviewed 30 men (17 HIV positive, 13 HIV negative) about what life and their relationship was like. Many of the men participating in the study told me that in their relationship, HIV didn’t really matter anymore – for some, it was like it had gone away, for others it was something that they just didn’t talk about (not because they couldn’t talk about it, but because they didn’t need to).

All of them described how normal their relationships were – yes, one partner took treatment every day – but often that was the only sign of HIV and it became part of the daily rhythm of living together.

Despite this, participants described how they sometimes didn’t tell people about their relationship being serodiscordant. In some cases, it was because it was an intimate part of their relationship that not everyone needed to know: do my workmates need to know my partner’s HIV status?

In other instances, it was to avoid the potential for stigma or discrimination, as one participant put it: “You sort of forget about it until someone else comes along, and now we’ve got to think about their bloody reaction!”

Others described how they felt it was like their relationship was in a bubble. But even though participants felt that they were somewhat insulated from negative ideas about HIV in the world ‘outside’, looking carefully at how they talked about their relationship revealed the subtle ways in which stigma could creep in.
 

Busting the bubble

Although no participants believed that people living with HIV were ‘less than’, the fact that their relationships are enmeshed in a society in which a negative HIV status is still valued more highly than a positive one meant that this idea inflected their daily lives.

For example, talking about how they or their partner’s status had never been an issue for them is based on the idea that it could have been. This echoes the observation of Arlie Hochschild, that because of enduring societal ideas of gender roles, a woman whose husband shares the housework equally with her might be expected to be grateful for this ‘gift’.

This connection between the private sphere of relationships and the social world in which they are embedded illustrates the importance of social change for individuals and their relationships and reinforces the role that campaigns like U=U can play.

However, thinking about stigma as something that can be ‘ended’ might only make sense if we conceive of it as something located in an individual: if a person can overcome their negative beliefs about people living with HIV, then they will no longer stigmatise or discriminate against them.

Yet stigma can be conceived of as an enduring social process that can persist despite efforts to dispel it among individuals. Stigma can also be transformed and affect people in new ways or apply to previously different groups.

As social beings, we are constantly defining and redefining the boundaries between ourselves and ‘others’ as conditions change. The risk is that in ‘liberating’ one group, stigma is transferred to others. Other researchers have described how, in a time when recommendations are that all people living with HIV take treatment, those who cannot or who choose not to are becoming stigmatised.

Viewing stigma as a social process, bound up with issues of power and marginalisation shows how the issue of HIV stigma is more than an issue of low awareness, it is one of social justice. And the experience of people in serodiscordant relationships shows how, until everyone is free, stigma will continue to shape the ordinary experiences of people living with the virus and those around them.

HIV stigma is bound up with wider issues of sexism, racism, and homophobia. There is clearly no one solution to such a complex undertaking, but that is not to say that there is nothing to be done. Providing space to share personal and intimate stories can help to transform how marginalised groups are perceived by society and supporting serodiscordant couples to share their experiences could be part of changing attitudes.
 

Looking ahead to 2030

Modern treatment means that people living with HIV in the UK diagnosed today can expect to live as long as someone without HIV without passing it on to anyone else.

The enduring stigma of being HIV positive is now, for many, the main experience of living with the virus. Even in situations where HIV is not an everyday concern, negative attitudes to the virus can subtly shape the lives and relationships of people living with the virus and their partners. And although raising awareness of the ‘good news’ of U=U can help change attitudes and reduce HIV stigma in some settings, conceiving of stigma as an enduring social process suggests that we must be vigilant that rather than being reduced it is transferred to other, potentially more vulnerable groups.

Markers of the epidemic in the UK are moving in the right direction. With the continued and concerted medical and community effort, the UK could achieve its aim of zero new infections and zero HIV-related deaths by 2030. Addressing HIV stigma will require all these efforts and more: everyone will need to be reached if societal attitudes to HIV are to be transformed.