The row over PrEP is a chilling reminder to many of us of a time we thought had passed. In the early 1980s news began to emerge of a ‘gay plague’ sweeping America. In 1982 AIDS claimed its first life in the UK when Terence Higgins died. My late partner Lawrence who died in 1995, knew Terry on the club scene in London.
It was a terrifying time. Diagnosis was a death sentence. Friends became sick and died very quickly. Funeralsñ became habitual. No one knew who would be next.
And yet faced with this new fear in our lives we were met with ignorance and prejudice. Lawrence became infectedn in 1984. Later that year during one of the first of many stays in hospital, nurses refused to clear up vomit by his bed and left him lying with the foul odour around him. When they eventually did mop it up, they wore masks and gowns and didn’t even speak to him.
What happened in response to that was that gay men organised to protect themselves, campaign for better treatment and decent services. With the help of lesbians and straight allies including politicians and professional who were prepared to go out on a limb, things gradually improved. But securing non-judgemental health care, particularly from non-specialist services could be an uphill struggle.
All the time people like Lawrence were having to contend with the unknown, new drugs emerging which you might or might not get access to, which might or might not improve your prognosis. Amongst the many things which still hurts me about his death is that just a year or so later the new brand of retroviral drugs which are commonly available today came on the scene. If he had just hung on for another few months, he might still be alive today. That was a lottery he didn’t win.
Now we have another massive breakthrough which could save countless numbers from a life dependent on drugs at a time when infection rates amongst young men are on the rise again. And we are faced with the same barrage of intolerance that we were met with all those years ago. This is not just from some of the newspapers.
Their coverage has been generated by the actions of NHS England. The NHS in Scotland is devolved of course. But it should concern us all that the NHS in England has decided to hide what is effectively a moral judgement about so-called lifestyle choices behind a smokescreen about who is responsible for resources for preventative treatments. Yet there is a wealth of examples of the NHS providing preventative healthcare.
And the comparisons thrown at us in the media, with the collusion of NHS England, are deliberately provocative. The money which might be spent on PrEP could be spent on innocent people like sick children. To the extent that the risk is created by choices gay men make, we are not even afforded a comparison with lifestyle choices like smoking. Imagine the reaction if the same position was taken about a new drug for lung cancer.
But worse still imagine the reaction if HIV was predominantly spread through heterosexual sex. Is anybody seriously suggesting the response of some sections of the media and NHS England would be the same?
No matter the ludicrous economics of all this. It’s not difficult to compare the much-quoted figure of £400 a month with the cost of treating someone with retroviral drugs for a lifetime. Even the most elementary cost-benefit analysis exposes the paucity of the argument.
I am not arguing that gay men like everyone else should not be asked to take responsibility for their own health and well-being. But I am asking that, if because of the social context they find themselves in they are at risk of serious ill health, the response they get from the health service is the same as one anyone else in a comparable situation.
I am not arguing that there aren’t real resource issues and that rationing, the constant elephant in the room, isn’t something we don’t need to face up to. But I am arguing that those issues should be confronted without recourse to discriminatory moral judgements and homophobia.
A lot has changed since Terence Higgins died in 1982. We live in a more enlightened society where attitudes to LGBT people are unrecognisable from what they were. We are even told that acceptance of LGBT people is a British value now. Really? Not if it's permissible for a part of the national health service in the UK to make decisions like this it's not.
Shame on NHS England for ending up in court and for having the audacity to respond to losing by appealing. So much for it embracing those values. What a triumph for prejudice over reason.
And in case it isn’t immediately obvious from its actions that those new found values aren’t fragile, consider this. According to the British Social Attitudes Survey which began in 1983, prejudice actually hardened in the wake of the arrival of AIDS and the hysteria it provoked.
Two years before Lawrence died my friend, Tim, died. Alone in his bed just round the corner from where we lived. He’d had bronchitis we thought. But it was pneumonia brought about by a compromised immune system. The cause of death was AIDS.
But what aided and abetted his death was stigma. Tim had never been able to confront the virus he had because he was frightened. He couldn’t even tell us, let alone approach his doctor. How lonely must his death have been?
Is that the kind of world we live in now? I really thought not. But now I’m not so sure.