By Winnie Sseruma (photo: Jason Ashwood)

The game-changing HIV prevention drug PrEP (pre-exposure prophylaxis) is a vital tool in efforts to end new HIV transmissions. In 2022, the Not PrEPared report, which NAT published alongside Terrence Higgins Trust, PrEPster, Sophia Forum and One Voice Network, showed that many people who might benefit from taking PrEP were not currently able to access it, including women and those from racially minoritised communities. In fact, no local authority in England reported more than five women using their PrEP services.

For International Women’s Day, PrEP champion Winnie Sseruma speaks about the barriers that women and racially minoritised communities face when it comes to PrEP and what can be done to improve access for those that need it.

People cannot access what they don’t know about, which is one of the reasons why PrEP uptake is so low among women and racially minoritised communities. We have to address this by taking PrEP into our communities so people can have more opportunities to learn about it. Otherwise, we’ll be talking about the same challenges next year and the year after.

PrEP was initially framed as something for gay men to use and women were not necessarily a part of the initial conversations around access. Though PrEP has helped many men who have sex with men to protect themselves from HIV, it’s clear that other groups still don’t think it is for them. It is crucial to frame things correctly from the start because there is never a second chance to make a first impression. Most PrEP information is in sexual health clinics but women and racialised communities access sexual health services in very different ways to gay and bisexual men. They also face other barriers to using PrEP which we are not addressing.

Women, especially, can find it challenging to talk about PrEP with male partners. HIV is still a difficult conversation between most heterosexual couples and taking PrEP to protect oneself from HIV is not something many are considering. Each person’s circumstances are unique and may contribute to further barriers when it comes to learning about PrEP or accessing it. For example, it matters whether someone is in a stable relationship, or if they are a migrant, as well as other cultural considerations. With all this in mind, open discussion about PrEP use is not necessarily something that many women are empowered in.

HIV-related stigma and misinformation remain very high, and this is particularly true for women and racialised communities. This is on top of many people simply not considering HIV a risk day to them today. While stigma is rife and without HIV being front of mind, many won’t learn about the precautions they can take to protect themselves.

Some people in racially minoritised communities have limited trust in health services due to racism. Racism actually makes people ill. Research shows that Black women are treated differently in some healthcare settings. Studies such as a recent one showing a higher rate of Black newborn babies dying in comparison to white babies are shocking reminders of the very real impact of racism. Women who are migrants have further reasons to feel concerned about engaging with the health system.

We need to support racialised communities and make it easier for them to access the services that already exist to enable them to take an active role in their healthcare. This has an overall positive impact on the whole population’s health.

We also need to remember that PrEP is not the most important thing in people’s lives. Everyone has so many different issues to think about, particularly right now with the cost-of-living crisis. Therefore we need to engage people on issues that matter to them before we can talk to them about PrEP.

There are ways of tackling these barriers. An entry point could be training women and racially minoritised health activists, or funding community organisations to employ properly remunerated health advocates from within the community. This network of trained people in the community could support others to navigate healthcare services on a long-term basis and help disseminate information. This is important and avoids us starting from scratch every time there is a new issue we need to inform communities about.

We also need to increase the number of places where people can access PrEP. GPs, pharmacists and community centres all have the potential to reach women more effectively. We could also use different occasions such as research days and awareness days to raise awareness of PrEP in our communities and have health activists drive the message home. It is important to have HIV-negative people, perhaps even those on PrEP, who can speak from experience.

There are so many women who could benefit from PrEP who aren’t currently accessing it. Making sure we leave no one behind is crucial to ending new HIV infections by 2030. PrEP has a huge role in stopping new HIV transmissions in women, but only if they know it exists and can access it.