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.
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.
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
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
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
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."