Nearly a quarter of people who want PrEP currently can’t get it, UK survey finds

PrEP users report significantly greater happiness with their sex lives, despite worries about stigma

Gus Cairns
Published: 25 June 2018
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Summary

A study of pre-exposure prophylaxis (PrEP) use conducted throughout the UK by Public Health England in collaboration with PrEPster and IWantPrEPNow finds that a significant proportion of the people (mainly gay men) who took part have been unable to access PrEP, despite wanting it. People from outside London found it particularly hard to get hold of PrEP.

This is against a background of a rapid expansion in PrEP availability, however, in the last year considerably more people have started taking PrEP and over half of those formerly buying it online have switched to the PrEP IMPACT trial.

Virtually all PrEP users reported condomless anal sex but so did nearly three-quarters of those who could not access PrEP.

One striking difference between PrEP users and others was that those who managed to get PrEP were significantly more likely to report that they were happy with their sex lives than people who had not managed to access PrEP.

Details

The survey was conducted over four weeks in May this year. It was featured on both IWantPrEPNow and PrEPster, sent to members of their mailing lists, and advertised on Facebook and through other websites. It was specifically directed at people who had either taken PrEP since January 2016 or had tried to access it. The starting date was chosen because prior to 2016, PrEP availability in England was almost entirely restricted to the 500 participants in the PROUD trial plus a small amount of online purchasing.

A previous survey in July 2017 which was reported by aidsmap.com found that PrEP use in England was rapidly growing and that most PrEP users intended to join the PrEP IMPACT trial when it started in October 2017.

The current survey was answered by 1711 people of whom 1565 provided demographic data. Most (93%) said they were men who have sex with men but 2.4% were either trans or non-binary and 1% defined as heterosexual (some didn’t answer). Eighty-three per cent said they were white (British or ‘other’) while 13% were of black and ethnic minority background. Half lived in London and the majority (51%) were between 30 and 44 years old.

Of the 1711 respondents, 1348 people said they had used PrEP since January 2016 and 1066 indicated that they were currently doing so (62% of the total). Over half of current PrEP users were getting it through the PrEP IMPACT trial (58%) while a third (34%) were buying it online. Fifty-six per cent of people who had formerly obtained PrEP in other ways had switched to the IMPACT trial.

Three-quarters of PrEP users said they took it daily while one in six said they took it when they knew they were going to have risky sex (‘event-based’ dosing).

One hundred and ninety-three said that they had formerly used PrEP during that period, but had now stopped. The most common reasons people gave for stopping PrEP was because they were not having sex (42% of those who stopped) or were in a monogamous relationship (22%).

Greg Owen of IWantPrEPNow commented: “This data shows how people are using PrEP in ways which suit their personal circumstances and sexual patterns. We need to be supporting people to use PrEP in ways that best suit them in real world settings”.

Three hundred and ninety-three respondents said that they had tried to access PrEP since January 2016 but had never managed to: that’s 21% of all participants or about 30% as many as those who had successfully accessed PrEP. Seventy-two per cent of people who had failed to get PrEP lived outside London despite only half of respondents living outside the capital, meaning that non-Londoners were 40% more likely not to get PrEP; people living in the north of England found it especially difficult.

One would-be PrEP IMPACT participant said: “‘I wanted to get PrEP to try and protect myself and not be…anxious about having gay sex anymore. I rang the only place that is/was doing the PrEP trial but was told there were no more places on the trial…’

PrEPster’s Marc Thompson said: “It's unsurprising that PrEP access is so geographically unequal. We need more targeted health promotion activity and advocacy in parts of the country where it's hardest to access PrEP.”

Of the peoplen who had accessed PrEP, nearly all (96%) reported having condomless anal sex in the previous six months, a third of them with more than ten partners. However, not being able to get PrEP did not stop people having condomless sex, as 72% of those who could not get PrEP still had sex without condoms.

Nearly a quarter of participants reported that they were worried about being treated differently because of their PrEP use, while one in six said they actually had experienced stigma. Ninety people said they had experienced hostility from dates because they used PrEP and nearly as many had encountered disapproval from friends. However, only two people gave stigma as the reason they stopped PrEP.

One participant commented: “My family thought I had HIV, or was "sleeping about". However I explained that regularly being checked and taking precautions makes me less likely to contract HIV.”

One of the most striking findings was that people on PrEP were much happier with their sex lives. Only 9% of people unable to access PrEP said they “agreed strongly” that they were satisfied with their sex life compared with 28% on PrEP; in contrast while only 11% of those on PrEP “disagreed” or “disagreed strongly” that they were satisfied with their sex lives, 32% of people unable to access PrEP did.

Will Nutland of PrEPster commented: “This data confirms what we've been hearing directly from PrEP users: PrEP has a bigger benefit than just preventing HIV. PrEP facilitates better sex, and is reducing fear, anxiety and stress.”

Valerie Delpech of Public Health England, who worked with PrEPster and IWPN to devise the survey and processed the data, commented: "The survey shows that PrEP is now a real option for many people and the large majority using PrEP are men at high risk of HIV acquisition."

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