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Policy makers’ inaction is leading people to take PrEP ‘in the wild’
Roger Pebody, 2016-10-19 14:20:00
An increasing number of gay men and others at risk of HIV
are seeking to protect their health with PrEP (pre-exposure prophylaxis), but the lack of PrEP provision
and lack of regulatory approval in many countries is leading people to take PrEP
without medical supervision and on an ad-hoc basis. This will undermine the
safety and effectiveness of PrEP, Jerome Galea said as he presented results of
the PrEP in the Wild survey to the
HIV Research for Prevention
(HIVR4P 2016) conference in Chicago yesterday.
official authorities are playing catch up and failing in their duty to protect
public health,” commented the authors of a separate report on PrEP
Access in Europe.
The PrEP in the Wild researchers wanted to gain a better
understanding of the characteristics of PrEP users and of their practices, to
inform the implementation of PrEP. The internet survey recruited a convenience
sample of people who responded to recruitment on social media, through advocacy
groups and on websites such as aidsmap.com.
The survey was launched in February 2016 and remains
open to new participants. Interim results, with data up to the end of July,
The survey was completed by 262 PrEP users as well as 52
‘frustrated users’ – individuals who had been unable to obtain PrEP at all. The
vast majority of respondents were gay men. One quarter had a primary partner
who was living with HIV.
While there were some responses from all parts of the world,
most participants came from Western countries in which there has been PrEP
activism, including the UK (90 respondents), the US (48), Australia (31) and
People who had been able to get hold of PrEP had a variety
of motivations for use – and individuals often expressed more than one. They included wanting to ‘let go’ during sex (80%), to facilitate sex with partners of an unknown HIV
status or partners who said they were HIV negative (76%), because they preferred sex
without a condom (71%), because of fear of HIV (67%), as a back-up for condom
use (48%), to facilitate sex with HIV-positive partners (47%), to use during a
sex party (43%) and because a sexual partner preferred not to use condoms
Only 13% had been advised to use PrEP by a health
People were resourceful in the ways they obtained PrEP. Just
over half ordered generic medicines online, without a prescription. (This may
partly reflect the strong participation in the survey of people living in the
UK and Australia; importing medicines is legal in these countries but it is not
in many others.)
A third obtained pills from a friend or someone they knew. This
could be medicines that were prescribed for HIV treatment and which were no longer needed; some HIV-positive patients may have also obtained extra pills by stating that they had “lost their
prescription”. One-in-five obtained medications for use as post-exposure
prophylaxis (PEP) but used some of them as pre-exposure prophylaxis (PrEP).
Others ordered online with a prescription, went to a retail
pharmacy with a prescription or obtained them in another country.
Whereas 192 people saw a medical provider before starting
PrEP, 62 did not. Among those who began PrEP without medical consultation, many
omitted key procedures including kidney function monitoring (only done by 29%),
HIV testing (done by 87%) and sexual health counselling (25%).
Most people were using either Truvada or a generic equivalent. While 5% did report using Atripla (which includes efavirenz
alongside tenofovir disoproxil fumarate and emtricitabine), few people reported
using other antiretrovirals.
One-in-five were following non-daily dosing. For some
individuals this may reflect genuine choice, but for others it probably reflects the
cost and difficulty of getting medication. Around a third of those aiming for
daily dosing in fact had interruptions in their use. One-in-seven had shared
pills with others.
The 52 respondents who couldn’t obtain PrEP cited a number
of barriers, including its cost (mentioned by 60%), doctors’ refusal or
inability to prescribe PrEP (50%) and importing PrEP being against the law in
their country (35%).
“PrEP is not a DIY intervention,” commented Jerome Galea. He
said that for PrEP to be safe and effective, regular medical monitoring and
sexual health counselling is required. It is particularly important that the
drugs are not taken after HIV seroconversion, which risks the development of
These problems were also described in PrEP
Access in Europe, a report by the PrEP in Europe Initiative (a
coalition of HIV organisations including NAM) that was launched at the
conference. There is anecdotal evidence from countries across Europe of gay men
obtaining PrEP in the ways described above.
countries, HIV doctors are prescribing Truvada off-label to small numbers of affluent HIV-negative people
who can pay the full cost of the drug (around €400 or €500 a month). In
countries with more restrictive policies or attitudes, individuals are
smuggling drugs from other countries or obtaining them in underhand ways, as
these respondents described:
“The only legal way to
do this is to travel to the UK and bring the pills with you in your own
luggage. That’s quite a barrier, so people are asking friends in the UK to
receive the order and send on privately, or using parcel forward delivery
services that use a UK PO box then forward the parcel to Germany from there.”
“There are anecdotal stories about some people
living with HIV giving their Truvada to negative friends and
asking for an extra bottle saying they have lost it. It is possible this is
happening, but at a very small scale, as it would be noticed by the clinic if
it were on larger scale. We only have one clinic and pharmacy with HIV drugs in
“We did hear stories of people selling Truvada on a party bus coming from Paris going to Brussels to a gay party.”
official PrEP approval and roll-out within health care and community settings,
many gay men will end up taking a few pills of Truvada without knowing their HIV status, STI status, renal health
and risk factors,” the authors comment. “Many of them may take PrEP needlessly,
or worse, within an acute HIV infection phase. These men may also be vulnerable
to being sold counterfeit versions of Truvada
as a black market emerges.”
The PrEP in
Europe Initiative calls on European governments to make PrEP available to
populations at imminent risk of HIV, as a matter of urgency.