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Women should not be forgotten in the UK HIV response

HIV campaigners in Parliament Square, London, 30 October 2021 | Alamy

Baroness Barker and Florence Eshalomi

3 min read

Women make up a third of people living with HIV, with an estimated 31,000 women living with HIV in the UK. As a group, women do not experience the best HIV outcomes.

Late diagnosis of HIV is associated with poorer health and outcomes, but 43 per cent of women diagnosed in England in 2020 for the first time were diagnosed with HIV late. Women are also not experiencing the same rates of decrease in new diagnoses as other population groups.   

With this in mind, it is not a surprise that women often feel invisible in the response to HIV in the UK, reporting they feel ignored or not taken seriously by healthcare staff and researchers. Of the missed opportunities to test for HIV in sexual health clinics in England, 75 per cent were women; women are both less likely than men to be offered a test, and less likely to accept one when offered. This contributes to the fact that women are more likely to get their diagnosis at their GPs, antenatal clinics or at other hospital departments, often because of health complications and secondary health conditions related to untreated HIV. We need to be reaching more women with proactive tests in sexual health clinics and in other preferred settings. 

Take the HIV prevention pill, PrEP. It’s a game-changer, yet it’s not on the radar of the majority of women

The demographic of women with HIV has broadened in recent years. Black African women make up 34 per cent of new HIV diagnoses, but there is great diversity among women living with HIV in the UK. New diagnoses are increasingly likely to be UK-born, white or another minority ethnicity and aged 50 or older. There is little knowledge or research to understand who women at risk of HIV are. Women are often not included effectively in research about HIV prevention and treatment. This holds back interventions targeted at a key population in the HIV response.

Take the HIV prevention pill, PrEP. It’s a game-changer, yet it’s not on the radar of the majority of women. Cisgender women accounted for just over one per cent of the more than 26,000 people enrolled, with very few Black women – who account for almost 40 per cent of new HIV cases among women. This must change if we are to end new transmissions of HIV and find those living with HIV who don’t know their status.

We know that the way women’s sexual and reproductive health interacts is often neglected in the HIV response. For example, women living with HIV continue to experience high levels of menopausal symptoms, which often go under-managed and therefore impact their quality of life and engagement in care. Instances where women access sexual health services represent an opportunity for an increase in HIV testing of women, while also addressing misconceptions about who is affected by HIV. 

The opportunity to eliminate new cases of a long-term condition is rare, yet we have the tools to do just that, now! To do this, women must be at the heart of the nation’s response. We must grasp that opportunity and create a culture where women feature front and centre in the UK’s response to HIV; where we are offering HIV tests on a routine basis to women; where no woman leaves a sexual health clinic without being give the choice of a HIV test.; where all women are aware of the HIV prevention drug PrEP, and can make informed decisions about whether it is suitable for them; and where women living with HIV are included in research efforts and supported to have the best quality of life possible. 

Florence Eshalomi is Labour MP for Vauxhall and Baroness Barker is a Liberal Democrat peer and voluntary sector spokesperson. They are co-chairs of the All-Party Parliamentary Group on HIV and Aids

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