Attitude editor-in-chief reveals how going on PrEP changed his life

“Why should my taxes pay for these sluts to have bareback sex?” “People taking PrEP give gay men a bad reputation.” “Why can’t they just shut up and wear condoms?”

These are just some of the comments registered on Attitude’s social media feeds whenever we’ve posted stories about PrEP.

And I have to admit that when I first heard about PrEP, I too had mixed feelings. The NHS is already at breaking point and can’t afford to pay for certain cancer treatments, so why should it cough up for PrEP? But I was worried that my reaction was the result of anti-gay conditioning, being brought up to think I didn’t deserve the same rights as the rest of society. And I wanted to challenge this.

I’m lucky enough to be able to afford to buy PrEP from one of the websites that allow people to source their own. Earlier this year, I ordered mine from a Bangkok clinic recommended on iwantprepnow.co.uk. It’s priced at around £40 per month and I bought a three-month supply. It was quite a tricky process, especially for someone like me who struggles to cope with any form of technology, let alone transferring money to Thailand. But I was successful and a few weeks later three boxes arrive in the post.

Before I start taking it, I go to my local sexual health clinic to check that it’s safe for me to do so. Several sexual health clinics in London and cities such as Manchester, Brighton and Birmingham, offer PrEP monitoring services. I book an appointment at the Mortimer Market Centre, which is part of the Central and North West London Foundation Trust.

The Mortimer Market Centre looks very much like an old-style hospital rather than the new generation of sexual health clinics, which are more akin to coffee shops or lounges. But the staff are friendly and non-judgmental and the service is excellent. The nurse assigned to me is Abramo Marchesani, who’s gender non-binary and prefers female pronouns and the name Amanda.

She tells me that between February 2016 and February 2017, 201 individuals have attended Mortimer Market’s weekly PrEP clinic 327 times. She adds: “When we set up this service, we thought that it would be more high-risk men who have sex with men, people who are into the chemsex scene, people with a chaotic lifestyle.

“But for some reason, the people that we see at the PrEP clinic are actually men between the ages of 30 and 60, who are quite knowledgeable about the risk-taking.”

Once my appointment is underway, Amanda chats to me about my sexual history and how to take PrEP. She explains that there are two options. I can either take a pill every day, which will give me protective drug levels continuously, or through event-based dosing, which involves taking PrEP in the run-up to exposure to risk. The drug will take up to seven days to get into my system but if I take a double dose on the first day, I’ll be protected after just a few days. I decide to take a pill every day.

Amanda explains that, like any drug, PrEP can have side effects. Less than 10 per cent of people have reported nausea, diarrhoea, bloating and headache. But, more importantly, in some cases, it can impair the function of the kidneys and also lead to a slight reduction in bone density. My blood and urine are tested and I undergo a full STI screening, involving anal and throat swabs. These will be repeated after one month, then at six months, and then once a year. I’m also asked to commit to a full STI check once every three months.

I wonder how the clinic is allowed to provide the service when the prescription of PrEP itself has been blocked by the NHS. Laura Waters, consultant physician in HIV and sexual health, tells me: “The General Medical Council is very clear that a clinician has a duty to make sure patients are informed of all treatment choices, whether they’re available on the NHS or not. In terms of monitoring, there’s no legal obligation for the NHS to provide it. However, there is a strong argument that there’s an ethical and a moral obligation to provide that service.”

I leave feeling nothing but admiration for the clinic’s staff, who are willing to work on the fringes of what’s legal within the NHS to do what they think is right.

A few days later, I receive a text telling me that my kidney function is normal. I take my first dose of PrEP.

Over the next week, I start telling people what I’m doing. Apart from the occasional exception, people express disapproval or, at the very least, unease, when I bring up the subject. Several of them grimace at the news and a few friends tell me they “struggle with” PrEP. At a party I discuss the subject with a gay man I’ve known for seven years and feel encouraged when he’s supportive. When I ask if he himself is taking PrEP he erupts in anger and asks how I dare suggest that. He’s so outraged at what he perceives to be a slight that he causes a major scene and I have to leave.

A few days later, I tell a fellow high-profile LGBT+ journalist and he expresses disapproval, later texting me the line: I don’t understand how all these sluts are getting PrEP, together with links to articles about rising STI rates among gay men and stories of men contracting HIV despite being on PrEP. These are impossible to verify but absolutely terrifying. None of these reactions make me change my mind about taking PrEP. And as my experiment goes on, I find myself becoming increasingly political about the subject.

One argument against PrEP is that it’s unnecessary because gay men can protect themselves with condoms. But it’s not as easy as this. Crucially, the fact is that a passive partner in anal sex faces much greater risk of contracting HIV through unprotected sex, but it isn’t him who has to put the condom on; it’s the active partner. And there’s a whole host of reasons the passive partner, should he want to, may find it difficult to persuade his partner to do so — such as low self-esteem, thinking he doesn’t deserve him, or will lose him. PrEP frees passive gay men from this tricky and often risky negotiation and offers them the chance to empower and protect themselves. Also, when we have sex without a condom it’s demonised as “barebacking.” But when straight people do this, it’s just “having sex”. In fact, when I discuss what I’m doing with straight men, many of them tell me their default setting is to have sex without a condom and they’ll only wear one at the insistence of the female partner. One straight man I ask, who’s in his twenties and has had sex with dozens of women, tells me he’s never worn a condom.

Another argument against PrEP is that it encourages gay men to have condom-less sex and therefore increases our exposure to other STIs. But when have we ever opted not to treat one infection just because we can’t treat others? Teenage girls are offered the HPV vaccine as standard by the NHS. No one suggests we shouldn’t do this because it doesn’t protect against other STIs. And, yes, the NHS can’t afford certain cancer treatments but it does pay for anti-smoking therapies, gastric bands for over-eaters and the contraceptive pill for straight people.

Most people I’ve spoken to agree with the principle of preventative medicine so why should PrEP be the exception? It is estimated to cost the NHS £360,000 to treat somebody with HIV over the course of their lifetime. Surely it makes better economic sense to offer them PrEP.

I debate all of these arguments with friends who expressed strong reactions to the news that I’m taking PrEP. But what I’m not prepared for is the strength of my own reaction when I start to have condom-less sex.

I’m not a habitual user of hook-up apps but before I start taking PrEP I create a Grindr profile and mark my HIV status as negative. I monitor the number of approaches I receive and the kind of things people say. When I start on PrEP I do the same, changing my status to “Negative — on PrEP.” I want to see if there’s a difference and if I’m bombarded with men asking to have condom-less sex. I’m not and there’s no major difference, although I do have one man saying he wouldn’t come near me as he suspects I’m “barebacking” all over the place and am “riddled” with STIs.

The first time I do have condom-less sex while on PrEP is a one-night stand. I tell the man I’m negative and on PrEP and he tells me he’s negative but not taking it. He doesn’t seem to care whether we use a condom or not but, telling myself that I’m protected, I go through with it.

Afterwards, I burst into tears. I feel dirty and guilty, as if I’ve let myself down. I grew up in the Eighties, when fear of HIV/Aids was at its height and I had it drilled into me that I always had to wear a condom. Sex without a condom was a bad thing. It seems I can’t shake off this idea now.

Once I’ve picked myself up, I carry on and, over the next six weeks, date a couple of men. One, an architect, tells me he isn’t put off by the fact that I’m taking PrEP but he’d prefer to use a condom. He tells me it would feel as if we were rushing into the intimate stages of a trusting relationship to have condom-less sex straightaway; we’d be skipping over rules that have been strictly laid out since the onset of the HIV/Aids crisis.

Another man I date, an older banker, is very supportive of my decision to take PrEP and thankful that we don’t have to use condoms. We don’t and this time I don’t experience any regret or guilt.

I’m not sure which is the right approach but as it happens, neither relationship lasts.

By the time I can make my second PrEP monitoring appointment I’ve been taking the drug for six weeks.

My nurse, Amanda, chats to me about how it’s going and asks about my sexual activity and adherence to the drug. The STI tests are repeated and a sample of my blood is taken to check my kidney function — and to test for HIV. I’m told that I’ll receive my results via text within the next seven days or that I’ll receive a phone call if there’s a problem.

At the clinic, I chat to the consultant Laura Waters and ask if she’s observed any cases of a patient becoming HIV+ while taking PrEP. “No, not here,” she tells me. “There were some infections within some of the PrEP studies but almost all of the cases so far have been when people weren’t taking the PrEP properly. Where there have been infections on PrEP, that’s where people have had very early HIV infection at the beginning and it wasn’t picked up on the basic test.”

I ask if she’s noticed a rise in the rates of other STIs among gay men accessing the clinic’s PrEP services. “We haven’t looked specifically at STI rates in that small group of people,” she answers. “But we do know that in our clinic, as in all clinics, according to the Public Health England figures, there has been a steady increase in sexually transmitted infections in men who have sex with men. Is PrEP contributing to that? Probably to a degree, but it doesn’t change the fact that they were all going up before people were accessing PrEP.”

Her words stay with me. But it’s what Amanda says that has the most impact. She tells me that when you take PrEP it can open a whole Pandora’s box of emotions. It can also open up part of yourself you didn’t know was there, part of you that had been suppressed since childhood.

I’m intrigued by her comments and discuss them with a friend who started taking PrEP at the same time as me but wants to remain anonymous. Although he says he isn’t ashamed of taking the drug, there’s such a stigma around it that he doesn’t want to risk alienating his employer.

He tells me that he was brought up to be so terrified of HIV/Aids that he didn’t dare have anal sex for more than a year after coming out and since then has always used condoms. He says he associated sex so closely with the threat of death and disease that he became neurotic and was unable to open himself up to a relationship. But what he’s found since taking PrEP is that he’s able to use sex to connect with someone on a more intimate level and he’s now in a relationship with the first man with whom he had condom-less sex. After years of resisting relationships, he feels as if his emotions have been opened up and he describes having sex with condoms as like “wearing rubber gloves when you hold hands with someone.” Now, he says, it’s as if his sexuality has been set free.

Before I’ve had the chance to reflect on my friend’s words, I receive a phone call from the Mortimer Market Centre. I’m told there’s been an anomaly in my test results. I panic. Have I exposed myself to a PrEP-resistant strain of HIV like those I’ve read about online?

While on the phone I’m told that I haven’t been infected with HIV but my kidney function is dangerously low. I have to discontinue taking PrEP immediately and go back to the clinic for an emergency blood test.

When the results come through a few days later, it seems my kidney function is back to normal. The doctors can’t work out whether there’s been a mistake in the lab or if the ibuprofen I was taking to ease a muscle strain has added to the PrEP and impaired my kidney function. But it strikes me how easily I could suffer kidney failure and this makes me realise how important it is for people self-sourcing PrEP online to be monitored by the NHS, just like women taking the contraceptive pill have to have their blood pressure checked regularly.

A few days later, I restart my course of PrEP with a vow to avoid ibuprofen.

Shortly afterwards, I fly to America to write a travel article. While there, I’m interested to see whether PrEP is viewed differently in the US. I know from research that every gay man with health insurance is offered it by their provider and PrEP is widely believed to be changing the way gay men have sex.

As soon as I log on to Grindr I notice that most people mark their HIV status as “Negative — on PrEP.” In fact, the first thing that happens when I switch on the app is that I receive an advert for PrEP on sale at the high-street pharmacy chain Walgreens.

During the course of my trip I have sex with a few men and condoms aren’t even mentioned — HIV status isn’t discussed. I’ve no idea whether this is a good or bad thing but it’s clear that PrEP has indeed changed things. In the past I’d always been struck by how up-front Americans were about their HIV status — and asking about mine. What stands out now is that this is no longer an issue or even a conversation and the sexual activity I experience is entirely free from fear.

Because health insurers in the US offer PrEP and so many gay men take it, it’s become completely normalised and there’s no stigma attached. As I fly back to the UK, I think this is what it should be like at home.

As I pull together my thoughts for this article, it hits me just how much impact PrEP has had on my life. And how it has changed my life in ways I didn’t expect; it’s affected me emotionally and politically as well as physically.

Broadening out my own experience to look at the wider picture, there’s no denying that PrEP has the potential to be a game-changer. If all the gay men who are HIV negative go on PrEP and all those who are HIV positive take the medication that will make their viral load undetectable (meaning they cannot pass on the infection), we will have the power to wipe out this disease.
If the NHS begins offering it everywhere in the UK and all gay men who are deemed to be at risk start taking it, there can be no slut-shaming. PrEP will become the new normal.

The main emotion this unlocks in me is relief; if I carry on taking PrEP I’ll never become HIV positive. And in the same way that the contraceptive pill freed so many women from associations between sex and the fear of earning a bad reputation or, at worst, social ruin, PrEP can free gay men from the association between sex and death. It allows us to have sex how it should be experienced: innocently and joyously.

And why should I be made to feel ashamed of wanting this?

I won’t. It’s perfectly natural and a desire that’s always been part of me. I’d been robbed of it for more than two decades.

So as my three months on PrEP comes to an end, I’ve come to a decision: I’m going to carry on taking the pills.

NHS England have announced the start date for a three-year trial of PrEP on 10,000 adults.