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PrEP demand in England is rapidly accelerating – and most will want to join the trial
Gus Cairns, 2017-08-04 12:40:00
A survey of people currently using pre-exposure prophylaxis (PrEP) has found
that PrEP use has rapidly accelerated in the last year, with more than half of
those surveyed starting since the beginning of 2017. The short survey was
conducted by PrEP advocacy sites iwantPrEPnow and PrEPster, with assistance
from Public Health England.
The study finds that the vast majority of people using PrEP are currently
buying it online but intend to switch to join the 10,000-strong PrEP
IMPACT trial when it starts, which NHS England announced yesterday should
happen "by September".
A large majority of survey respondents (61%) would want to get their PrEP
from a London-based clinic and a majority of Londoners (68%) say they would
prefer to get it from one single clinic – 56 Dean
Street in London’s Soho district.
The survey was conducted in ten days, from 19 to 28 July 2017. It was
distributed to approximately 3300 people who had signed up to the iwantPrEPnow
website saying they wanted regular updates on the IMPACT trial. Only people who
were currently, or had at some point, taken PrEP and were currently living in
England were eligible.
There were 766 responses, which gives a response rate
of nearly one in four – very high for an internet survey. Will Nutland,
co-founder of PrEPster said, "The caveat we should add to this survey is
that the most motivated current PrEP users - or potential users - will sign up
to a mailing list, and the most engaged of them will respond to a survey. As
such, this survey might not reflect broader demand for PrEP. But what it does
show us for sure is that there are 700 people who are intending to start on the
trial, and they are intending to start within a month of the trial
Nearly all were male, including four transgender men. Two women, one of them
transgender, answered the survey while four respondents, three of whose gender
was not the same as at birth, preferred to define their gender another way or
were non-binary, yielding a maximum eight respondents (1%) who were trans*.
The vast majority defined themselves as ethnically white (86%, 60% defining
as white British). Over 6% (49 people) defined as being of some Asian
background and over 3% (24) defined as being of some black background, with ten
people saying they were of mixed ethnicity and 13 replying ‘other’ or
preferring not to say.
Most (95%) were men who had sex exclusively with men
but 22 (3%) had sex with men and women and two with women only. Twelve people
preferred not to say.
A majority of respondents (53%) were aged between 25 and 40; 7% were under
25, 21% in their 20s, 38% in their 30s, 28% in their 40s, 12% in their 50s and
2% 60 or over.
Most participants (95%) had taken PrEP in the last year and the rest had
done so at some point in the past.
The survey shows that PrEP use in England is accelerating rapidly. Only six
people said they took PrEP before 2014, 30 started in 2014, 53 in 2015, 252 in
2016 and 425 in the first seven months of 2017. Even if PrEP use stops
accelerating and new users join at the same rate for the last five months of
2017 as for the first seven, this implies at least 725 PrEP starters in 2017.
Owen, co-founder of iwantPrEPnow said, "This survey for the first time
gives us a much clearer picture about the number of PrEP users in England. Now
we know where people are buying their PrEP from, we can extrapolate from the
sales of Dynamix - the only supplier that provides us with sales data to the
UK. We've been estimating for the past few months that between 6-8,000 people
are buying PrEP online in the UK and that figure is substantiated by the data
from the survey."
Most respondents (73%) said they were taking PrEP “every day or on most
days” while one in six (17%) said they took it around specific episodes of sex.
Six per cent said they were taking it approximately on alternate days while 4%
said they had only taken it, or were taking it now, for a short period of time.
The vast majority (86%) were buying PrEP online and of
these 52% were buying it from iwantPrEPnow’s preferred suppliers Dynamix International,
with 31% from United
Pharmacies and 11% from All Day Chemist.
Nutland, co-founder of PrEPster said, "Not everyone who currently
self-sources PrEP will meet the criteria for enrolment on to the trial. As
such, we'll continue to provide information about how to obtain PrEP safely and
legally online, and work with clinical colleagues to ensure that PrEP support
continues to be provided to PrEP users who are not on the trial."
The minority who were not sourcing PrEP online were getting it via repeated
post-exposure prophylaxis (PEP) prescriptions (10%), from friends (8%), via
private doctors’ prescription (3%) or from an informal contact (2%). (People
could give more than one reply to this question, so this adds up to more than
A large majority (85%, 651 people) said they would hope to switch to the
PrEP IMPACT trial as soon as it started, ideally within the first month, while
a mere 11 respondents said they would not switch and would continue to buy PrEP
online, or stop PrEP.
Participants were asked to select from a list of sexual health clinics which
one they would be likely to go to for PrEP. This gives an idea of respondents’
location. A majority (59%) said they would use clinics located in greater
London, with 68% of those – 40% of all respondents – saying they would prefer
to go to one particular clinic – 56 Dean Street in Soho.
In terms of other
geographical areas, 114 participants (30 from Brighton) would use clinics
elsewhere in the South East, 51 (34 from Greater Manchester) clinics in the North West, 44 in the East or West Midlands, and 22 in Yorkshire or Tyneside,
with smaller numbers from the South West (mainly Bristol) and East Anglia
While this survey may give an indication of where demand for PrEP is likely
to be highest, it leaves some questions unanswered. One is how predictive it is
of the total number of people who may come forward for PrEP when IMPACT starts.
PrEPster and iwantPrEPnow estimate that, from other surveys and based on their
contact figures, there could be over 8000 people using PrEP in England
regularly or intermittently right now, which could imply that the 10,000-strong
IMPACT trial, which is intended to last three years, could fill up very fast.
The other unanswered question is how to reach and interest the minority of
people in need of PrEP who are not gay men: women with HIV-positive partners,
recently arrived immigrants, transgender people and others known from the data
to be at risk. It is striking, for instance, how few transgender people
answered this survey, despite there being a
dedicated clinic for trans people at 56 Dean Street.
Marc Thompson, co-founder of PrEPster said, "This survey reminds us
that those who want to get PrEP as soon as the trial starts are those who are
already engaged with PrEP advocacy. The survey doesn't tell us about how women,
trans people, or people who are not white are currently using PrEP, nor how
they might use it. It's another call to all of us with roots into those diverse
communities to take action to ensure that they know about PrEP, and can access the
The intention is that IMPACT will reserve 1000 places for people who are not
gay men and projects will be developed to reach out to them. What happens if
the trial fills up rapidly and there is pressure to fill the other 1000 places
is a dilemma the trial oversight committee and its community advisory group
will have to address.
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