Call for raised awareness of the ‘changed world’ of HIV

As the UK works towards achieving zero new HIV transmissions by 2030, an OU academic is calling for greater awareness of this ‘changed world’.

According to Dr Tom Witney from the OU’s Faculty of Wellbeing Education and Language Studies (WELS), although developments in the treatment of human immunodeficiency virus (HIV) have transformed what it is like to live with the virus, the enduring stigma and concern associated with HIV, remains a source of concern

Effect on couples with mixed HIV-status

He says that modern treatments can suppress the virus to such a degree that it cannot be detected by standard blood tests, known as an undetectable viral load. Recent studies of mixed HIV-status, where one person has the virus and the other does not (also known as serodiscordant) relationships, have shown that having an undetectable viral load prevents sexual transmission of the virus, with one study finding zero instances of transmission after following 972 serodiscordant couples for a median of 2 years. While this result, sometimes known as treatment as prevention (TasP), has been hailed as a game-changer in efforts to tackle the epidemic, the clinical studies themselves tell us little about their implications for everyday life in a serodiscordant relationship.

Findings around living in serodiscordant relationship

In order to address this, Dr Witney conducted a study into the experiences of gay and bisexual men serodiscordant relationships. In the qualitative study, he interviewed 30 gay and bisexual men living in the UK (17 HIV positive, 13 HIV negative), representing 20 different serodiscordant relationships. All the HIV positive men in the study had an undetectable viral load. For most of the men in the study, TasP meant that they did not worry about HIV transmission. This was experienced by some as an absence of HIV in their everyday relationship – that the virus had ‘gone away.’ For others, it meant that the pills the HIV positive partner took every day was the only sign of HIV in their relationship and it became a normal part of their lives together. Some HIV negative participants got into the habit of checking their partner had remembered their pills as way of being involved in their care. Many participants expressed their gratitude that their relationships could be so ‘normal’. In addition, the fact that TasP prevents HIV sexual transmission even if condoms are not used allowed some participants to rethink how they thought about ‘safer sex’ and what they considered to be ‘responsible’ sexual practices.

Enduring stigma associated with HIV

However, despite the reassurance provided by the clinical studies and medical professionals that the risk of HIV transmission is essentially zero, some participants reported that they still occasionally worried about the virus. These concerns sometimes occurred during sex: HIV positive partners knew that they had an undetectable viral load at their last check-up, but sometimes worried whether they were undetectable in that moment. Other participants said that although they understood that there was no risk, they still occasionally felt a fleeting moment of worry after sex. Another area of concern related to stigma: after his partner cut himself playing sport an HIV negative participant worried that he would need to tell his partner’s team mates about his status. In this way, the stigma HIV affected both HIV positive and HIV negative men in the study. Participants described how they were careful about who they talked to about being serodiscordant, wanting to avoid ‘ignorant’ reactions from people who did not know about TasP and held outdated views about HIV. Others used their relationship as an opportunity to try and reduce stigma by educating the public about TasP and raise awareness that an undetectable viral load means that HIV is untransmittable.

Dr Witney said said:

“Although participants in this study felt that for the most part HIV was not an important feature of their relationships, they still sometimes experienced moments of uncertainty and worry in everyday situations. The enduring stigma associated with HIV was also a source of concern. While some used their relationship as an opportunity to raise public awareness of TasP, others felt that talking about being serodiscordant might attract negative reactions.”

As the UK works towards achieving zero new HIV transmissions by 2030, these findings suggest that although increasing HIV testing and supporting access to successful treatment will form an important part of the puzzle, raising public awareness of TasP and the ‘changed world’ of HIV and relationships will also play a role in supporting people in serodiscordant relationships in their everyday lives. Tom’s findings will be submitted for journal publication and will form the basis of a series of workshops for people in serodiscordant relationships to further share their experiences.

Find out more about research in the Faculty of Wellbeing, Education and Language Studies