Demand for access to NHS PrEP trial looks set to outstrip places

Published: 04 August 2017

A new study indicates that all of the places on the NHS England funded PrEP (pre-exposure prophylaxis) trial will be taken up rapidly, which may mean that people at high risk of acquiring HIV are refused places.

The three-year NHS trial aims to recruit 10,000 people, which will make it the largest single study of its type in the world. Whilst HIV infection rates in England are falling due to increased prevention, diagnosis and treatment programmes, the trial is intended to assess the full additional potential of PrEP, by gathering clinical evidence on optimal targeting, uptake and implementation on a large scale.

A survey of current PrEP users, conducted by the PrEP advocacy sites iwantPrEPnow and PrEPster with assistance from Public Health England, found that PrEP use has rapidly accelerated in the last year. More than half of those surveyed started using PrEP in 2017.

The study found 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". Eighty-five per cent of those surveyed 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. The number of people already on PrEP who want to switch to the trial may come close to filling all available places.

Greg 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."

Matthew Hodson, Executive Director of NAM commented, “The effectiveness of PrEP in preventing new HIV infections has been well-established, both in trials and in practice. I welcome that we now have a timeline for this major trial to begin in England but remain concerned that the ambition is set too low. The demand for PrEP, particularly from gay and bisexual men who are well-informed about it, means that the limited number of places on the trial are likely to go rapidly. Unless the scope of the trial is increased, we will see people turned away, many of whom may become HIV positive as a result.”

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. Will 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 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.

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 trial."

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.

Read the news story about demand for PrEP on aidsmap.com

Demand for access to NHS PrEP trial looks set to outstrip places

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Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap
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