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Why We Should Pay for the Pill to Stop You Getting HIV

27/06/2016 11:09 | Updated 27 June 2016

Other events will be overshadowing today's Gay Pride march in London, but one significant group on the parade is a bunch of HIV organisations and their fans marching, probably in blue, under the banner #United4PrEP - pre-exposure prophylaxis, the HIV pill to stop HIV.

Thew reason we are spurred to march for PrEP is typified by a common reaction I hear:

"It's a lifestyle choice. They should pay for it."

That was someone I know the other day (Someone surprising - see below.)

He was explaining why he didn't think it was a scandal that the English NHS has, for the second time, refused to countenance paying roughly one-thirtieth of the annual spend on HIV treatment for a prevention intervention of almost unreasonable effectiveness. We asked for £16-20 million a year for the next five years to pay for 5000 a year on PrEP. Instead they've fobbed us off with £1 million a year to pay for - well, it looks as if it will mainly pay for the 400 or so guys on the PROUD trial, whose funding will run out soon. So no more PrEP, unless you pay for it.

The 'they', of course, being gay men and the 'lifestyle choice' having sex without condoms. Why, he asked, should the rest of us pay for their wilful refusal to do the right thing?

This argument, of course, is not new. Why should we pay for people who eat their way to type 2 diabetes? Alcoholics who get liver transplants, only to drink again? Smokers with lung cancer?

The primary answer is: because that's what we do. That's what a National Health Service is about. It's about the healthy paying for the sick, on the understanding that one day we will be the sick. And it's about stopping sickness, with vaccines, statins, smoking cessation. Even if the sickness is self-inflicted.
There are additional reasons, however, why the remark shocked me.

One is that HIV is such an exorbitant price to pay for risky behaviour. OK, lung cancer or cirrhosis are horrible too, but are generally the result of decades of smoking or drinking. You can get HIV with a few youthful slip-ups.

My mind goes back here to Philip K Dick's eerily prophetic 1977 novel A Scanner Darkly in which he shows us people ruined by a drug, Substance D, that is universally addictive - and universally fatal, to both body and sanity. "This novel is about some people who were punished entirely too much for what they did," said Dick.

I think that HIV is entirely too much punishment for rubberless sex, of whatever degree of stupidity.

I know HIV to the bone. I held the hand of a young lover as he died, aged 28, drowning of pneumonia. Later there was my own wasting, unending pain, 40-degree fevers that left me shuddering, my dad standing beside me helpless as I cried that I didn't want to die. I was rescued in the nick of time by the miracle of combination therapy.

I don't want HIV to be merely contained, suppressed to a minority disease by condoms, sure, but still burrowing its way through the underground of the gay community to fasten on to the least capable.

I want more than that. I want HIV killed. Annihilated. As dead as smallpox or at least reduced to the exotic rarity it was till the 70s. PrEP won't do this by itself. It is not a magic bullet, because nothing is.

But, over time, if we test and treat more people with HIV (thereby making them uninfectious) and add the option of PrEP to the locales in which HIV still spreads - whether that be the Chemsex parties of Vauxhall, the shebeens of South Africa, or the bridge in Kabul under which guys fix heroin - we could remorselessly drive down infection rates. This is already starting to happen in a lot of countries. But not among gay men. Not anywhere.

I want people to have something that, for the first time, may enable them to take control over their risk of HIV. I want something that has been demonstrated in the USA, where PrEP is now taken by 50,000 people, to reduce levels of anxiety about sex. Young or single HIV-negative men and women, or simply ones taking a chance on their partner's faithfulness, should be able to take a pill when they're sober and sorted one morning, knowing they'll be protected that evening when they've thrown caution to the winds.

Pioneer PrEP scientist Bob Grant has said: "PrEP works, and responsible and attractive people take it." He didn't mean that people who don't take PrEP are irresponsible or unattractive. He meant that a decision to take PrEP might be their first step towards feeling responsible and attractive.

PrEP enthusiasts like me get accused of not remembering the consequences of condomless sex, and of being complacent about the rising rates of it and of STIs in gay men. One the contrary; I want gay men to have something added to condoms, something more than the fallible, slippery, awkward, fumble-in-the-dark rubbers that have up till now been our only defence. We should not mourn the demise of safer sex: we should make it safer still.

Yes, condoms well always be needed for other STIs, but PrEP may bring into the clinic guys who otherwise wouldn't get checkups. And the thing it does do is stop the one STI that is incurable, invariably deadly without treatment, and carries with it a crushing burden of shame.

Oh yes, the stigma. No-one in a country with an NHS needs to suffer physically from HIV. I don't, and haven't done for years. Yet the lingering consciousness and, were I to dig deeply, shame of my status drags me back again and again to campaigning on behalf of other people with HIV, when I could have settled into a career as a mental health professional - something I was embarking on when AIDS struck.

I think of a recent therapy client, a literate, sparky young gay man struggling with the shock of an HIV diagnosis because he's suddenly one of the "sort of people" he assumed he was too sorted to be.

The biggest disappointment of all, however, is that the person who made the "lifestyle choice" remark was an openly gay physician - someone who himself is a campaigner against HIV in the world's forgotten corners.

I think people like him forget, or don't want to acknowledge, that any of us can one night be seduced by the promise, not of sex, but of what it symbolises - attention, touch, union, surrender, pride, transgression, ecstasy. Love. An emotional tug as deep as evolution that makes fools of us all, and which, I am convinced, is experienced no differently by blushing brides or party boys.

Except that the party boys exist in a milieu with high levels of a circulating deadly virus, and may have high-enough rates of isolation, depression and anomie to make them, at some points in their lives, reckless.

When it comes to sex, gay men, no more than anyone else, are the captains of their soul. Responsibility is, for a lot of people, a hard-won aim. They should not be punished for achieving it too late.

I'm not religious. But I was brought up in a churchgoing family, and my favourite parable of Jesus is the one about the Pharisee and the publican. 'Publican' in translation meaning not a barkeeper but a tax gatherer - to Jews, the lowest of the low, a Roman stooge, a traitor to his own people. Yet, Jesus tells us, as welcome as the upstanding pillar of the community to throw himself upon the mercy of God in the temple.

Too many members of the gay community, with our hard-won marriages, our adopted kids, our newfound respectability, regard the guys who haven't yet got there as traitors. Letting down the side. Tainting the gay brand. Doing what the homophobes accuse us of.

Let's not be Pharisees. Let's welcome our gay brothers into the fold and protect them from what is still the most serious consequence of sexual risk.

Let us save them from HIV. Let us offer them PrEP.

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