There was a wide variety of ways in which participants first
learned about PrEP and how to source it themeselves. Around half were directed
to I Want PrEP Now or PrEPster by a sexual health clinician after
they had been identified as being at higher risk of HIV – one man described his
doctor writing the web address on the back of an envelope.
For those who did not find out in the clinic, friends and
sexual partners were key to getting information about PrEP. Some had read about
it in the media or from a link posted on Facebook. Of note, four men had first
heard of PrEP from friends or sexual partners when travelling in the United States.
“My friend was on it.
I had a talk with him and that’s when I started my journey of education and
learning.”
Most participants bought their PrEP from one of the pharmacy
websites featured on I Want PrEP Now. One man had originally had a private
prescription while another had sourced his PrEP from the HIV treatment his
HIV-positive partner was taking.
In choosing which website to buy from, men were motivated by
endorsement by I Want PrEP Now, how user-friendly sites were, how trustworthy
they appeared to be, their prices, and the range of payment options.
Very few men had problems with drugs not arriving, but the
businesses could be slow to respond to queries, as this man described:
“The whole system seems like it’s being run out of a
garden shed.”
Many men had dilemmas about the legitimacy of online
purchasing. The lack of certainty about the pills they would be taking
contributed to hesitation in starting PrEP.
“It is alien in this
country to buy your own drugs.”
“What if this is just
a sugar pill? How can I assess what a good pharmaceutical website is? I can’t.
I have no idea.”
While men got information from a range of online and
personal sources, it was almost always the discussion with their NHS sexual
health clinicians that made them decide to go ahead and buy PrEP.
“The doctor pointed it
[the website] out… Nothing can be wrong with this.”
The 56 Dean Street programme providing therapeutic drug
monitoring – which
showed that the drugs delivered were not fakes – gave legitimacy to men’s use
of otherwise unknown pharmaceuticals. It provided reassurance and removed
lingering worries.
But men would have much preferred to have their
self-sourcing of PrEP explicitly and clearly endorsed by the NHS. Rather than
have information about online pharmacies “coming
from someone’s blog”, they would have preferred to have suppliers vetted by
an official body and information to be given by NHS organisations.
As men dealt with the day-to-day practicalities of taking
PrEP – including managing side-effects and choosing between a daily or
event-based regimen – they sometimes struggled to find information that they
felt they could trust.
“It’s the little
questions, just having something authoritative and definitive that answers
them, in one place that has been given that authority. Not just by the IPERGAY
trial or by the authority in the USA, but by something that’s known, domestic
and that I can point to for my own purposes, the medical profession here.”
There was confusion in all the focus groups about kidney
function tests, in particular in relation to the sample needed (urine or blood)
and their recommended frequency. Men appeared to have received inconsistent
advice from different healthcare professionals.
Men were grateful for the support they had received from
sexual health clinics and were conscious of the difficult situation in which
their clinics found themselves, given NHS England’s ambivalent stance on PrEP
provision. Nonetheless, many were frustrated with such inconsistencies and with
staff members who were not always aware of the necessary tests and procedures.
Beyond the clinic, friends living with HIV offered advice about
taking the drugs. However, the most crucial support came from peers and
partners who had used or were also using PrEP. This peer support element,
through friendship and social media, was seen as an essential component of PrEP
education by almost all participants, with peer experience being seen as “less
abstract” and “more trustworthy” than a website.
“Peers’ experience is important, especially
if they’ve been taking it for a while. It saves you the trouble of
following those dead-ends yourself.”
Asked to comment on a possible peer-led support
intervention, all participants felt that it was needed and would be beneficial.
They agreed that a face-to-face intervention would be preferable to an online
service.