People at very high risk of contracting HIV who took part in a
groundbreaking NHS study into the drug that prevents the virus
have been told that they will no longer be given the
medication, BuzzFeed News can reveal.
The decision to stop supplying the drug to the participants now
that the study is over comes despite indications from NHS
England earlier this year that this would not happen. Britain’s
leading HIV charity has warned that it is a statistical
certainty that some of these participants will now become
The 545 gay and bisexual men who volunteered for the PROUD
study were selected on the basis that they were particularly
vulnerable to infection and were willing to take one pill –
called Truvada – a day, in an HIV prevention regime called PrEP
study, conducted over two years, became a world-leading
investigation, with its conclusions used internationally as
evidence of the medical efficacy of providing the drug to those
most likely to contract HIV. It found that PrEP reduces the
risk of transmission by 86%, and that those who take the drug
are no more likely to contract other sexually transmitted
Some of those selected for the study are in relationships with
HIV-positive people, some had volunteered after at least one
unprotected sexual encounter within a three-month period, and
others had been identified by clinicians as very likely to
acquire the virus.
But NHS England
confirmed in May that it would not be rolling out PrEP to
all those most liable to become infected, claiming that funding
the drug was the responsibility of local authorities. Instead
it said it would fund a small £2 million project offering the
drug to a few hundred people.
The Terence Higgins Trust, Britain’s largest HIV charity, told
BuzzFeed News that there was “no clarity” on whether any of the
PROUD participants would be included in that group.
Dr Michael Brady, the trust’s medical director, said: “In
reality, whatever they [NHS England] do it’s not going to
happen for a few months, so we’re looking at months where
everyone is having to get it privately or get generics.”
He added: “The delays, and the real life impact of people on
the PROUD study, just further highlights what feels like
procrastination and a lack of clarity in [NHS England’s]
Brady said doctors were aware what the refusal to commit to
further treatment meant. The PROUD study showed that nearly 10%
of those in the at-risk group will contract HIV within the
first year without the drug. So, he said, the decision not to
provide the study participants with continued medication would
lead many to become infected, as well as highlight the wider
risk of withholding the drug from everyone vulnerable to
“Not providing access to PrEP for all those MSM [men who have
sex with men] who are like the PROUD participants is
potentially allowing 10% to become infected,” he said. “We know
that there are many more MSM at a similar risk who are not in
the PROUD study.”
Now the study participants are on their last few pills – with
their doctors telling them they will not receive any more in
the near future.
One, Jamsheed Master, a 37-year-old musician from Brighton,
told BuzzFeed News that he discovered at his recent appointment
at the sexual health clinic that there would be no further
“I went on Monday kind of expecting that they’d have made some
sort of provision to provide it and the answer was no, sorry,
thank you very much, that’s the end of the study.”
He said he felt the NHS had failed him and the participants.
“It’s rough,” he said, adding that earlier this year, “We were
told [by doctors conducting the study] ‘Don’t worry about it –
at the end of the study, more likely than not, the NHS will
In March, when NHS England
first announced that it would not make the drug universally
available to those in need, it released a statement
interpreted by many as indication that participants would be
given PrEP after the study.
It said: “NHS England is keen to explore how a period of
further support can be offered to the participants enrolled in
the PROUD study and is committed to making funding available
where there is a clinical need for additional help.”
Although participants were told that there were “no guarantees”
that treatment would continue, Master said many participants
were angry now because, after volunteering for a vital study
that both helped the NHS understand the benefits of the drug
and also transformed many of their lives, they had expected it
“The drug has absolutely changed my life,” he said. “Without a
doubt, if I hadn’t been on Truvada in the last two years I most
likely will have contracted HIV in that time. I reckon it’s a
95-100% chance I’d have got HIV.”
Beyond removing the chance of acquiring the virus, the effect
of the drug was profound on a psychological level, said Master.
“It took the fear out of having sex. It’s incredibly
emancipating.” He explained that for his generation of gay men
who grew up in the midst of the AIDS crisis – before effective
medication arrived 20 years ago – the fear of sex, and of HIV,
can have severe effects on sex and relationships.
Now, Master feels that he has no other option but to buy the
drug privately, online, from a foreign manufacturer that makes
cheaper versions, called “generics”, of the branded medication.
This costs around £45 per month without postage.
“While I can afford to buy generically from the internet,
there’s many people who cannot,” he said. “And that makes me
very cross – especially in a country that’s supposed to have
social healthcare. We live in the UK and the NHS has a duty to
provide it, in the same way it has a duty to provide
He added that providing the drug would save the NHS money in
the long run as providing this prevention drug is significantly
cheaper than treating someone for HIV.
Last month, Britain’s leading HIV epidemiologist, Professor
Sheena McCormack, who ran the PROUD study, wrote to Simon
Stevens, the CEO of NHS England, to ask whether the
participants would continue to be given PrEP.
Stevens’ deputy national medical director, Dr Jonathan Fielden,
replied without confirming either way.
He wrote: “As part of the overall considerations for the test
sites will be consideration of any ongoing needs of PROUD
participants. We have already held initial discussions with
[Truvada manufacturer] Gilead on this matter. Furthermore, we
will continue to work with you and Public Health England to
explore all avenues for how PrEP might be made available in the
most clinically and cost effective way.”
Next week, following legal action by the National Aids Trust,
the high court will conclude its judicial review on whether NHS
England’s decision not to provide PrEP is justified.
Master, meanwhile, made a direct plea to NHS England to at
least protect those who volunteered for the study.
“There’s a product available that is a fraction of the price of
[HIV] treatment, so you should be funding prevention with the
same intensity that you fund treatment,” he said. “There’s an
opportunity to end HIV, so why don’t you take it?”
BuzzFeed News asked NHS England for comment on its decision not
to provide the drug to PROUD participants but did not receive a
response by time of publication.