Just two weeks ago one of my closest friends “celebrated” his one year anniversary with HIV. As part of the general annHIVersary bonanza, he wrote this awesome and hilarious post about what it’s actually like to be diagnosed with HIV in the 21st century. People shared it on Facebook and Twitter, words like “inspiring” and “brave” were bandied about without irony, the post somehow wound up on Popsugar, Australia [*shrugs*] and for a while it seemed like compassion and an open-minded spirit of learning and informing really were the prevailing winds. Things in the HIV world (at least, my own very small HIV-adjacent world, anyway) were looking, for want of a better word, up.
[You thought I was going to say “positive” didn’t you? But trust me, once you go down that route, there’s no turning back. The “positivity” jokes – we have discovered over the last year – are basically endless so embark only if you are absolutely… sure.]
Rewind to nine months ago and I and a couple of other friends were sitting in his living room drinking wine while he filled us in on the situation.
“One of the shitty things is,” he told us, “there’s actually this drug called PrEP which prevents you contracting HIV in the first place. It’s in trials at the moment but they couldn’t offer it to me because I’m ‘low-risk’.”
Leaving aside for the moment the irony of a person deemed to be at low risk of contracting the virus ending up with it, this was pretty shocking news to most of us (despite the fact that straight people absolutely can and do get HIV they/we remain monstrously ill-informed about it which is what makes posts like Simon’s so important to read and share).
“Wait, what? There’s a PREVENTATIVE DRUG and people aren’t getting it? What the actual?” we [probably] said [something similar].
“Yeah, the NHS won’t fund it” he said, to wide-eyed disbelief all round. “The nurse at the clinic told me, no joke, ‘Of course we have to be pretty low-key about the trials, I mean, imagine the headlines if the Daily Mail got hold of it.’”
Let’s backtrack a little bit here. If you hadn’t heard, the High Court ruled two days ago that the NHS could fund the provision of a PrEP (pre-exposure prophylaxis) drug that can prevent HIV. This is obviously amazing news. From a basic medical development point of view, any new drug that allows us to prevent viruses from being contracted in the first place is a cause for celebration. We all know prevention is better than cure and any scenario where fewer people get sick is a better one, isn’t it? Yay for science and all that.
And then there’s the financial rationale. The current lifetime cost of treating someone with HIV is almost £380,000 which works out at around £8,000 a year if the person is diagnosed at the age of 30 and lives into their 70s (hilariously, this “cost to taxpayers” is something the Mail et al have complained about in the past). By contrast PrEP costs £400 per person per month (that’s £4,800 a year). Now, obviously this is not an either/or situation. If the NHS starts providing PrEP it will still be footing the bill for the treatment of the estimated 103,700 people in the UK who are living with HIV. But by preventing the spread of HIV in the first place you are reducing the number of people who will need treatment in the future. With PrEP, as with all preventative medicine, we’re working towards a future in which nobody needs HIV treatment. Our generation could be the last to have HIV in the UK. That’s not romance, that is a scientific reality. If we invest in it.
And you do need to view it as an investment because the reality of NHS funding is complex and every time new treatments become available there is a struggle over which ones can be taken on by an organisation that, at the end of the day, has a limited budget. And the fact that the NHS are planning to appeal the ruling isn’t actually to do with not wanting the drug to be available, it was more that they are trying to palm the cost off onto local authorities (who in turn say they can’t afford it). As for the cancer patients and amputees who will supposedly be hit by the decision, there are ALWAYS going to be other drugs and treatments and departments that could have been funded instead. In fact, according to this Guardian article, which also sets out some of the nuances of the budgeting situation, in this current funding battle, there are 146 different services competing for the same pot of money. Nobody wants children with cystic fibrosis or people with cataracts to miss out on medical advancements, for goodness sake, but these kinds of decisions have to be made by the NHS all the time. The difference is they only make the news when the recipients of the new treatment are gay.
Or majoritively gay, I should say. The UK government’s HIV report in 2013 showed that men who have sex with men (MSM) make up by far the largest group of people living with HIV. So while it is ignorant to think of HIV as a “gay problem” it is also important to acknowledge that when we talk about “lifestyles” and “behaviour” we are referring to a particular group of people.
And what a lot of the objection to the funding of PrEP boils down to is that on some level people don’t think this group of people should enjoy the same rights and freedoms as everybody else. Underneath this so-called concern about “sexual risk taking” is a moral objection to the kind of sex that is being had.
As several people have pointed out this week, PrEP is no more a “lifestyle drug” than the contraceptive pill (though I am well aware that there are plenty who would brand that a “promiscuity pill” too). Both allow people to engage in sexual relationships safely and on their terms. Yes, we know about condoms but let’s be real for a moment: we don’t always use them. I’m not saying that’s deliberate, necessarily, but it is statistically true whether you like it or not. I passionately believe in comprehensive sex education (if you don’t know this about me by now then you need to go do some homework – starting HERE) but punishing people for not using condoms when you have a drug is ridiculous.
Even if it weren’t the case and we all remembered/opted/managed to use condoms all the time, why would we if there is an alternative? Why would you want to block people’s access to unfettered sexual enjoyment unless deep down you had a problem with it? Objections to this treatment are not about concern for those who will “miss out” on funding (are we seriously pitting a supposed shortage in cataract surgery against one of the biggest developments in preventative medicine of our age?!), they are pure homophobia.
As Owen Jones pointed out,, the job of the NHS is to save lives. All of the drugs and treatments competing for funding (not just now but at any point in time) are designed to save and improve lives, but it happens in the case of PrEP that the lives at stake are predominantly gay lives. Anyone who argues those lives matter less than others is bigoted and wrong.