An online survey of women found greater interest in long-acting injectables or event-based dosing of PrEP than daily pills, while many would like to access PrEP from a pharmacy or GP surgery. However, these options are not yet available in the UK.
Despite accounting for over a quarter of new HIV diagnoses, only 1.3% of PrEP users in England are women. As described in aidsmap’s new research briefing on PrEP and women, only a third of women whose behaviour and clinical characteristics align with a need for PrEP actually have those needs recognised when they visit a sexual health clinic.
Melissa Cabecinha of University College London presented both quantitative and qualitative data at the British HIV Association conference in Gateshead this week.
The online, quantitative survey included 974 women and gender diverse people assigned female at birth. The sample was largely recruited through adverts on social media which appealed for people who were interested in helping researchers understand women’s sexual health and HIV needs. Like all such convenience samples it had its biases, with an over-representation of those who are university educated (73%), younger (50% under 30) and do not identify as straight (47%, mostly bisexual). While 93% were cisgender (identified with the sex registered at birth), 1.5% were transgender and 5.2% were non-binary. The mix of ethnicities broadly reflected that of the UK general population; it did not oversample women of Black African ethnicity, who are more exposed to HIV than other women. There was a broad geographical spread within England.
Seventy per cent of participants were aware of PrEP, only six individuals had ever used PrEP, and 11% were interested in using PrEP. Interest was significantly associated with identifying as transgender, non-binary, or gender diverse; not being in employment; not being in a committed relationship; and assessing oneself to be “quite a lot” or “greatly” at risk of HIV. Previous awareness of PrEP was not associated with an interest in using PrEP; in fact, just under a third of those interested had not heard of it before.
When asked about PrEP formulations, preferences were for a long-acting injectable (74%), event-based PrEP (51%), a removable implant (46%) and a daily pill (38%). Currently, only the daily pill is available. Injectable cabotegravir has proven efficacy for women, but is not yet licensed in the UK, while the other two possibilities still have not been developed.
In terms of where to get PrEP, respondents would be happy to use a pharmacy (74%), sexual health service (74%), GP surgery (70%) or the internet (46%). PrEP is currently only available in sexual health services.
For the qualitative study, Cabecinha interviewed 18 cisgender women, aged 23 to 61. Half of the interviewees were aware of PrEP prior to taking part, but this did not necessarily mean that the women had knowledge of its availability and eligibility, or even a clear grasp of the purpose of PrEP. Interviewees who were aware of PrEP did not always know that it could be used by women, in part due to perceptions about who can be affected by HIV.
“Because obviously if you’re going to mention that there’s PrEP out there, I heard the term but I didn’t look into it, I wouldn’t have known that it’s for people who are negative…” – Black Caribbean woman, 40 years old, London.
“To find the information you kind of just have to be looking for it, but if you’re not even aware it exists, then you can’t really search for it… You’re not going to search for what you don’t know exists.” – White woman, 24 years old, south-west England.
Participants highlighted the need to “meet people where they are”, in other words discussing HIV prevention and PrEP in settings women currently attend for reproductive and sexual health, such as primary care.
“I’ve never been to a sexual health clinic for myself, I’ve always been the GP, so that’s probably one of the reasons why I’ve never heard of it. I’ve never had a reason to know that was a thing.” – White woman, 25 years old, north-west England.
“Education and awareness campaigns should include women-specific information on PrEP availability and clear indications for PrEP candidacy,” Cabecinha concluded. “Addressing HIV stigma, integrating HIV prevention in conversations around sexual health, and expanding PrEP provision outside of sexual health services may help increase accessibility of PrEP and PrEP information for women.”
Cabecinha M et al. Current PrEP provision does not align with women's preferences: early results from a cross-sectional survey investigating PrEP awareness, interest, and preferences among women in England. British HIV Association conference, Gateshead, April 2023, abstract P028.
Cabecinha M et al. ‘If you don't know, how can you know?’: a qualitative investigation of HIV pre-exposure prophylaxis knowledge and perceptions among women in England. British HIV Association conference, Gateshead, April 2023, abstract O09.