Where is PrEP?

Where is PrEP?

Some of you in the HIV field may have read this. And if you haven't, read and sign.

It's a letter to the Chief Executive of NHS England demanding to know, in my words not theirs, what the bloody hell is happening about approving pre-exposure prophylaxis (PrEP) for people at risk of HIV in the UK.

The public consultation process (of which more below) seems to have ground to a halt. We're being met with a deafening silence. And in this silence, alarms start to ring about the ability or willingness of the NHS to provide PrEP at all.

Yes, PrEP. Giving people pills to stop them catching HIV. If you don't know about it now, you should.

It works. My God, it works. It works if you take it daily. It works if you take it before and after sex. It works for heterosexuals. Even I, who have been following it as a possibility since 2002, am surprised how well it works.

And yes, although condoms work too, and it might be a good idea to combine them, it works better. Condoms work pretty well if you use them perfectly. PrEP still works almost perfectly if you forget three out of seven doses.

The French approved it in January. Oh yes, and Canada, Israel, South Africa and Kenya, yes Kenya have approved it.

Yes, it doesn't stop other sexually transmitted diseases. And yes, those are on the rise in gay men. But they have been since well before PrEP was even researched. It doesn't stop chemsex or addiction or loneliness or self-hatred or just the lure of finding an easy f***, or whatever else has led to the UK having the worst HIV epidemic in western Europe.

It does just one thing: it stops people getting the worst STD of all. The one that means you'll have to take pills for a lifetime and if you don't, it will still kill you, slowly and nastily. And which, at least in the US, gay men stand a one-in-six chance of getting in their lifetime. That's 80 times the risk for a straight man.

So why haven't we got it here?

I should know, really. But I don't.

I should know because 18 months ago, a bunch of us got together to hammer out what NHS provision of PrEP should look like in England. We had to decide who should provide it, who should pay for it and - because it's expensive, and we can only afford to give it to people at the highest risk - who should get it.

By 'a bunch of us' I mean some of the top HIV docs in the UK. England's top epidemiologists. NHS and local authority commissioners. Even Scotland dropped in, to find out what they should do. Oh and four of what they always call 'community reps' including me, which means people who've been obsessing about HIV prevention for years.

Eighteen months of hard work. What an education it was! We prepared Recommendations and Impact Assessments and Cost-Effectiveness Models and Provision Pathways and Financial Implication documents. I learned more than I ever wanted to about the cost-effectiveness of health interventions, including the fact that all models are basically tests of the often loopy assumptions experts put into them.

But through them, I also learned that if PrEP was given to the gay men most in need of it, it would start saving money. If you spend £25m or so a year on it, it stops people joining the £770m annual HIV treatment bill. So if people ask "Why should we pay for gay men to bareback?", the answer is that if you don't, you'll pay more later.

I learned about the Byzantine complexity of the NHS's approval process, committees advising committees advising committees, sending our reams of paper further and further up into the hierarchy of NHS courtiers until it fell on the desk of the unseen Emperor who could fix it or nix it.

Finally, we ran it round so-called 'stakeholders', basically anyone the NHS agreed had some kind of right to an opinion.

You don't need to know the details, but by February, we'd knocked it into shape enough so that it could get its final polish: a Public Consultation, sticking it on the net and letting Joe Public comment. All ready for a crucial meeting in June of a committee called CPAG (you don't need to know) whose Grand Vizier would then, hopefully, whisper in the Emperor's ear that, your Majesty, this might not be a bad idea.

And then: nothing.

The deadline for the full 90-day consultation promised passed. Meetings were cancelled and not re-arranged. The depthless void of the NHS's processes suddenly stopped returning the echo of our shouts.

There were rumours. Of course there were. The Chief Exec of the NHS had stopped it. The Health Minister had stopped it. The Treasury had stopped it. Donald Trump had stopped it (no, I take that one back.) There is, apparently, much whispering behind curtains. A Question may be asked in the House.

My best guess? PrEP may be a casualty of the fine old Eton Mess this government has turned the NHS into. The Health and Social Care Act 2012 ripped public health away from the NHS and dumped into the laps of Local Authorities. Yes, The Council now runs our clap clinics and our don't-smoke campaigns, as well as collecting our rubbish.

No doubt there was some philosophical justification for all this, but it was very convenient for George Osborne, who could make it look as if he was sparing the worst of the cuts to the NHS while letting public health slowly wither in the desert of poverty that has become local government.

The trouble is, this leaves any public health intervention that is also a medicine without an owner. The crunch point may have come simply because the NHS decided PrEP wasn't its baby. Send that sickly orphan down the road to the Parish Workhouse, I say!

Which is ridiculous. There are plenty of public-health measures that are medicines. Statins for basically healthy middle-aged men. Contraception for women to stop something that isn't even a disease, namely pregnancy. And vaccines. Oh, hang on, aren't they running into the same sort of trouble?

So the letter is a sign that, unfortunately, what we had hoped - that the good English way of doing things through committees and cups of tea, without all that public raving the Americans get into - has run its course. We have to start making a fuss.

And we need the backing of everyone concerned on this, and that especially means the gay community. Including the bits that normally fight shy of thinking about HIV.

Yes, PrEP is controversial. Anything that turns upside-down a quarter-century of consensus on what 'safer sex' consists of was bound to be.

And it doesn't sit well with a certain kind of gay politics. We've made huge strides with the idea that gay people are the same as others. We want marriage. We want kids. We want to be treated like everyone else, because we are like everyone else.

But PrEP says: gay men are different. In many ways, but one way is that we are more, much more, vulnerable to a deadly force called HIV. This isn't about equality. This is about justice.

I hope I've persuaded you that denying PrEP means that more and more gay men will simply catch HIV. In my book, that makes refusing PrEP a denial of their right to health.

So sign the letter now. We need PrEP. We need it publicly funded, not bought in dribs and drabs off the net. We need it via our poor old battered but still prized NHS. We need it now.


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