Damian Barr: NHS England are risking lives with their anti-PrEP attitude

I caught Aids in 1987. Aged 11, I was convinced the birthmark on my neck had turned into one of the lesions they kept showing on the news. I would die horribly and soon, and all because of what my best friend Mark and I did in secret. Nobody would cry for me.

In terror I watched the government advert, blushing when it came on, convinced everyone could see how dirty I was. “There is now a danger that has become a threat to us all,” intoned a plummy English voice as an epitaph was chiselled out of black stone. “It is a deadly disease and there is no known cure. Anyone can get it. Man or woman. So far it has been confined to small groups. But it’s spreading. So don’t die of ignorance.”

The advert ends with the epitaph: Aids. I saw my own name on that tombstone.

I was 16 when I finally went for an HIV test. I found the GUM clinic in the Yellow Pages – nothing to do with teeth. I took the bus there in my school uniform and stood around outside like I was waiting for a date. I only went in because I was scared someone might catch me and tell my mum. Inside I was asked by a doctor, who looked like our school vicar, if I was ‘a homosexual’. I wasn’t sure – I did things with boys but had a girlfriend too.

When I mentioned her, he smiled at me. He asked me to describe all the things I’d done with boys, with men. Was I active or passive? I looked down as I answered and he told me to look up as he made notes. Slowly he put his pen down then told me, calmly, I would one day catch Aids and die. When he took my blood he pushed the needle in so hard it snapped in my arm – I still have a tiny round scar, the full stop on his death sentence. I can show you, if you want.

Sex, when I got drunk enough to attempt it, was all about cheating death not enhancing life

Back then it took two weeks to get a result but I didn’t go back for a month. There was no point, there was no cure, there was no hope. I barely slept, spending days drafting increasingly elaborate funeral plans in my Smash Hits diary. Turns out they weren’t needed.

I dodged that bullet and ran away to university in Edinburgh where all around me boys and men I’d only just managed to find were mown down. It was a war, only there were no medals, no glory, no possibility of victory. Nobody was mourning us. And I wasn’t brave.

Sex, when I got drunk enough to attempt it, was all about cheating death not enhancing life. I lay awake afterwards, after going over and over every moment, running my tongue round my mouth for ulcers, my hands over my body for the tiniest scratch, feeling for ways the virus could get in. Was I sweating with anxiety or were these flu-like symptoms? I wore a red ribbon to show support but also as a talisman to ward it off.

https://twitter.com/Damian_Barr/status/711991263340466176

In Edinburgh, a city hit hard by the first wave of infection, I found a less judgemental clinic and went for monthly then weekly tests before a kind nurse referred me for counselling. Slowly, I learned to manage risks, to leave fear at the bedroom door. But it’s never gone away completely for me or for the LGBT community. I still have nightmares.

My generation came of age during the crisis. Those lucky, or scared, enough to survive pre- and-post Aids. Now nobody else need go through what we did: combination therapies have commuted the death sentence and a vaccine is tantalisingly close. We don’t yet have a cure but we do have prevention and that’s always better. Right?

Wrong, says NHS England, which is risking lives and wasting money by refusing to deploy our most powerful weapon: Truvada.

Truvada, two powerful drugs in one pill, has been used to treat HIV since 2004. It’s also prescribed to people who’ve been exposed to risk – a finger pricked on a needle, a broken condom, one drink too many, a rape. It must be taken within 72 hours then daily for 28 days. This is called post-exposure prophylaxis (PEP). PEP, like the morning after pill, is available on the NHS.

PrEP is more like The Pill – it’s one Truvada pill each day, every day, forever. A two-year study, commissioned by the UK Medical Research Council and published in The Lancet, shows it reduces the risk of getting HIV by 86 per cent. Prevention isn’t just better than cure – it’s cheaper and kinder. France, the USA and even China are rolling it out. Yet NHS England, which prescribes PEP, refuses to prescribe PrEP. NHS Scotland is thought to be about to make PrEP available, raising the prospect of cross-border healthcare refugees.

Last month the National Aids Trust took NHS England to court, where judges ruled they must make PrEP available. The British Medical Journal pointed out “delays will cost lives”. Disgracefully, NHS England launched an appeal claiming PrEP is “particularly for men who have high-risk condomless sex with multiple partners”. Cue moral panic.

I know men who are being forced to buy (possibly illegal or fake) drugs online because they want to take responsibility for their own health

Where are these legions of bare-backing nympho-homos? I don’t see them. But I do know men who are being forced to buy (possibly illegal or fake) drugs online because they want to take responsibility for their own health. Men who pay taxes to help fund the NHS. I know them. They haven’t stopped using condoms either because they know PrEP doesn’t stop syphilis or anything else. They haven’t given up work to dedicate their days to orgies (maybe we all should).

As with The Pill, so with PrEP. People don’t always make the best decisions: we misplace our trust, we get scared to say no, we get horny, we can’t remember what we did last night or don’t want to. We are not perfect. That’s okay. The Pill didn’t turn womankind into sex-crazed sluts – it gave her control, and some men hated giving that up. Just as they now hate the thought of gay men enjoying sex and not being punished for it.

HIV is an equal opportunities killer. It doesn’t care who you are or who you do. HIV doesn’t discriminate. But NHS England does.