Fighting for access to PrEP in the UK
Although the story of PrEP availability in the UK is still being written, one of the central characters who is driving the narrative is activist Greg Owen.
In October 2015, Greg Owen and Alex Craddock co-founded I Want PrEP Now. Greg is now working with health charity Terrence Higgins Trust to maximise access to the medication that has been demonstrated to prevent the transmission of HIV.
I caught up with Greg over a coffee in Soho, he’d recently returned from the AIDS 2018 conference in Amsterdam.
At the conference in Amsterdam, Terrence Higgins Trust announced a new program to increase access to PrEP in the UK. How is that going to work?
This is something that we’ve been talking about since 2016. We’ve been looking at various ways that THT could consolidate and expand on the work that we’d begun with I Want PrEP Now as well as increase access to PrEP. Additionally, the slow response by the National Health Service in England left everyone feeling that THT had no choice but to step in and help increase access to PrEP for those who needed it most.
THT have allocated a substantial amount of funding to help people access PrEP directly from the supplier.
The program is scheduled to launch in September 2018. Our initial pilot will provide PrEP to 250 people, testing the initial eligibility criteria before expanding to 1,000 people.
The way that it’s going to work is that anyone in England and Northern Ireland who wants access to PrEP can go to THT’s website, and complete some personal information to determine clinical and financial eligibility. Their application will be assessed, if they’re approved they’ll be given a voucher code that they’ll be able to enter when ordering PrEP from the supplier. People being supported by THT will be able to access PrEP at no cost.
What are the eligibility requirements that people will need to meet in order to be approved to be part of the THT program?
The program will be open to anyone over the age of 16 who is at risk of contracting HIV. What we want to do is to ensure that PrEP is reaching people who we know would benefit but currently aren’t benefiting from the protection that PrEP offers. In some cases that’s people who are facing a financial barrier, in other cases it’s cultural - quite often it’s both financial and cultural.
What are the current costs of providing PrEP to people?
In the UK, the price when we launched I Want PrEP Now was £150 per person for a three-month supply. That’s recently been reduced to £60 per person for a three-month supply.
At the moment there are 8,000 people accessing PrEP through the Impact trial being run by the NHS. In addition, our analysis indicates that there are around 12,000 people self-sourcing through online pharmacies.
This fund from THT is specifically for people on low-income or who have no income. If your income level means that you won’t be eligible for support from THT, but you feel that you’d benefit from its protection, I’d encourage you to buy it yourself. PrEP is available, we know it works.
How sustainable is the program being funded by THT?
It’s not sustainable - it’s outrageous that a charity has felt compelled to make this kind of intervention, and we expect demand for this program to be very high. Because it’s not sustainable is exactly why, alongside planning for the roll out of the fund this autumn, we’re continuing to put pressure on NHS England via every available channel to urgently make PrEP available to all who need it.
In order to reach everyone that would benefit from it, PrEP needs to be integrated into other health services and other points of care. We also have a lot of work to do to educate health professionals about PrEP.
What’s your role moving forward?
I’m still motivated to keep pushing. It’s like the first day of school for me every day.
I miss the virtual clinic that I was running during the early stages of I Want PrEP Now. It was very emotional, it was very real - you could see the difference you were making.
My role now is very fluid, but I feel as if I’ve found my feet at THT.
I’ll be speaking on the main stage at Pride Cymru in Cardiff. I’ll be speaking at Manchester Pride. I’m producing some radio content for the BBC. We speak a lot with other activists and organisations globally. I seem to have been elevated to the position of elder PrEPster.
What’s weird is when people come up to me to say thank you, or send me photos of them watching me on TV. I never know what to say when people say thank you for helping them access PrEP. The other day I said to someone - ”Enjoy your PrEP!” - combining it with a double thumbs-up and a cheesy grin. I need to try and not be so awkward.
Dating has been a bit of a struggle. There’s something about the work that I do, plus my visibility as a PrEP advocate and someone who lives very openly with HIV, that makes things complicated with the internal issues that guys are struggling with - whatever their status.
At the beginning, the only thing that I knew, the only thing I had was myself, my story. Subsequently, I’ve struggled to separate my identity from the PrEP campaign. I got lost a little, I didn’t look after myself so well, but I’ve been working on that.
What is PrEP?
- PrEP is a pill you can take to protect you from HIV. It is extremely effective when taken properly.
- If you take PrEP correctly, you don’t need to worry about a sexual partner’s HIV status.
- You’re protecting your own HIV negative status by taking PrEP.
- PrEP stands for pre-exposure prophylaxis.
Key PrEP milestones
- In 2012, the US Food and Drug Administration approved Truvada for use as PrEP, based on growing evidence that the drug was safe and effective at preventing HIV in populations at increased risk of infection.
- In 2012, the World Health Organisation issued guidelines. WHO noted that - ”International scientific consensus is emerging that anti-retroviral drugs, including PrEP, significantly reduce the risk of sexual acquisition and transmission of HIV regardless of population or setting.”
- Numerous countries have now approved the use of PrEP for HIV prevention, including the United States, South Korea, France, Norway, Australia, Israel, Canada, Kenya, South Africa, Peru, Thailand, the European Union, and Taiwan.
- Scotland was one of the first countries in the world to publicly fund PrEP for the prevention of HIV, with public funding commencing on 10 April 2017.
- In England, the National Health Service considered the public funding of PrEP and decided against it in 2016. The National AIDS Trust successfully challenged the decision of NHS England in a case before the High Court. NHS England appealed, but again the court found that it had a responsibility to fund the availability of PrEP. As a result, in 2017 NHS England began a three-year trial to provide PrEP to 10,000 people.