Last Thursday, another step was taken towards PrEP being made available on the NHS, with The Court of Appeal upholding the original High Court decision stating that the NHS has the legal power to provide PrEP.
We interviewed Justin Harbottle, a Service Development Manager from the Terence Higgins Trust and participant of the PROUD trial, to discuss what implications this ruling has for the future of PrEP.
Hi Justin. Could you give us a quick overview of last week’s ruling?
So back in August, National AIDS Trust (NAT) had brought a judicial review to the High Court to challenge NHS England’s decision not to consider funding PrEP. NHS England said they couldn’t fund it, as it was the responsibility of local authorities. The High Court ruled in favour of NAT, saying NHS England could fund PrEP, but NHS England decided to appeal the decision. The case was then heard by the Court of Appeal last week, who upheld the original decision that NHS England can fund PrEP. Essentially the judgement said that as NHS England is responsible for HIV treatment currently, including PEP, this also covers PrEP.
Why do you think the ruling was contested?
All areas of the NHS are under a significant amount of pressure at the moment and they can’t afford to pay for every treatment. With PrEP, there isn’t much of a precedent for this type of treatment, so there was a bit of a grey area. However, there is a strong argument for it if it’s widely distributed amongst those at risk, as it will be cost-effective over the long-term.
By the looks of things, the NHS seem to have accepted this decision and won’t be appealing again.
It’s really good that they’re not appealing again. 17 people a day are being diagnosed with HIV and the battle to get PrEP on the NHS has been dragging on for about two years now. These legal challenges have been slowing it down and after it all, we’re pretty much in the same position, in that it’s still going through the assessment process.
Is there a worry that this reluctance to fund PrEP will continue, such as making it difficult to obtain a prescription for it?
That’s a possibility. When you look back at some of the statements the NHS were releasing around the same time as the first ruling, there was some concerning language which was still quite stigmatising, especially the pitching of patient groups against each other. Some of it harkens back to the viewpoints of the 80s and 90s, with ‘good AIDS’ and ‘bad AIDS’, with gay men and other stigmatised groups being portrayed as essentially being to blame for HIV. This has been picked up in the right wing media as well. However, with this failed appeal, PrEP will go back into the NHS’s decision-making process, which will decide on whether or not it will be funded, based on its merits and without prejudice, so hopefully PrEP will get a fair decision.
How many more stages has it got to go through before we might see it on the NHS?
While it was being ruled in by the court, it continued to be assessed by CPAG (Clinical Priorities Advisory Group), which decides what treatments or services the NHS should provide based on potential impact and cost effectiveness. We expect to hear their verdict in the coming weeks, hopefully before the end of the year, so we should have a final decision by then. While we think that the results from the PROUD trial provide a convincing argument for it being made available on the NHS, we will have to see how this stacks up against all the other treatments looking for funding.
How did the PROUD Trial go?
It was a huge success. It involved 544 patients, half of whom were given PrEP straight away, and the other half were to be given it after 12 months. The trial was able to report early as PrEP was far more effective in practice then they estimated, with the group taking PrEP having 86% fewer infections. And this included people who weren’t taking the drug as prescribed; when they did so the effect was close to 100%. It was one of the most successful PrEP trials internationally.
How did you personally find it?
For me, I work in HIV prevention, but I never feel like I had a as much control as I wanted over my HIV status. It can feel like it’s constantly hanging over you and you’re only as good as your last test. However, when I was on PrEP, it was the first time I felt really confident about my HIV status. When I went to get my tests, there was no longer that nagging sense of doubt. With condoms, you may have to negotiate their use with a partner, and you can’t always be sure how easy it may be to use them the next time you have sex, but with PrEP, where you can take it by yourself, outside of sex, there’s a much greater feeling of control and security.
Do you think it can seamlessly become an integral part of gay men’s lives?
I certainly think so. If you look at places like San Francisco, it’s become really normalised. On Grindr and other dating apps over there, you can put that you’re on PrEP as one of the categories. It’s definitely being recognised as another way to have safer sex. Today, safe sex doesn’t mean just solely using condoms, but also regular testing and now, PrEP as well. Knowing your status is really important, as if you’re HIV-positive and undetectable, then that can be safer sex in itself.
With the initial ruling, there was a lot of negative coverage from the press and claims that it would be re-directing money form more ‘worthy’ causes. Have you seen similar coverage this time round?
There was a little bit less, but the media was rather pre-occupied last week! However, that’s not to say there was none at all. For example, there was a debate on LBC Radio, in which the presenter said that couples where one was HIV-positive and the other not, should just practise abstinence, which is out of touch and ridiculous. People are clearly still misinformed about how people living with HIV can remain undetectable when on treatment for a certain length of time. As well as this type of misinformation, you see that stigma around HIV, and homophobia, still exists.