In August 2017, George was living in Glasgow when he received a call from his partner in South America. They had remained together despite the distance, a physical rather than emotional separation. George answered, and the voice on the other end of the phone dissolved into tears.
“He had just been diagnosed with HIV,” says George. “I was worried about him. I was worried for myself and my future health. And I was worried about what my family would think.”
HIV is no longer a death sentence, and advances in treatment mean that most people on medication can expect a normal life expectancy and can’t pass it on. But residual social stigma and the fear of parental rejection haunted George. “It would have confirmed to them their worst fears about having a gay son. You spend so much time and energy trying to reassure them about that when growing up that the thought of telling them ...” He trails off≠.
The call came on a Thursday evening. The local clinic had no Friday appointments. Over the weekend, sexual health services in the city shut down. “I spent four days not knowing my HIV status after my boyfriend had just tested positive. The wait was dreadful,” he recalls. The window for post-exposure prophylaxis (PEP) – a combination of drugs that if taken within 72 hours of exposure to HIV can halt transmission – was long past. “I just assumed I must have it. If he did, I did.”
George’s test came back negative. But the anxiety remained. He describes himself as cautious, and a regular condom user, but wanted to ensure that he would never again find himself in the dark about his HIV status. The sexual health nurse who delivered his results told him about pre-exposure prophylaxis, or PrEP – a single pill, taken daily or on demand before sexual contact, that effectively eliminates the possibility of contracting HIV. It was the first time he had heard about it, but it offered a degree of security that appealed to him.
A few months before his test, in April 2017, Scotland became the first country in the UK to make PrEP available to eligible patients on prescription. But George had moved to England, where PrEP was not – and still is not – freely available on the NHS. Instead, like thousands of others, George had to self-source through a website offering generic PrEP – an identical pill at a fraction of the price of Truvada, the branded PrEP pill developed by pharmaceutical company Gilead. “Sourcing it myself took time, but I could afford it. It was worth it to take care of myself and my partner,” he says.
George is now one of tens of thousands in the UK taking PrEP. Some believe it could herald the end of the world’s HIV pandemic, and preliminary signs are positive: in January, Public Health England announced a 71% drop in the number of new HIV transmissions among gay and bisexual men since 2012. The dramatic decrease isn’t due to PrEP alone – improved screening and the effect of regular medication stopping transmission of the virus have contributed significantly – but the drug seems to reach people that condoms alone do not. Yet with the drug only available on the NHS through a national trial set to end this year, PrEP users and campaigners are concerned that the greatest addition to HIV prevention in recent years isn’t being prioritised by public health systems in England.
That PrEP works is beyond reasonable doubt, say experts in the field. In 2015, two robust, large-scale studies reported their findings. In the UK, the Proud study announced an 86% reduction in new HIV transmissions among those taking PrEP. The same year, a French study, Ipergay, reported the exact same decrease in new transmissions. Analysis of those who had become infected while on the PrEP study revealed that they had not been taking the medication as prescribed.
PrEP prevents HIV transmission by stopping the virus from replicating in cells. “It doesn’t stop HIV entering the body, but it stops it taking hold,” says Professor Sheena McCormach, the chief investigator of the 2015 Proud study. The science, she says, is robust but its effectiveness – over 99% according to some studies – did not convince NHS commissioners to make the drug widely available.
In 2016, NHS England announced they would not be commissioning PrEP, claiming that prevention was not their remit. The National Aids Trust took the government to court and won. But instead of making PrEP available, NHS England and Public Health England announced the Impact trial, which would initially make the drug available to 10,000 people at risk – predominantly gay and bisexual men, but also African women, sex workers and trans people – and has since been expanded to cover 26,000. But in regions across the country trial spaces are filled. As of October 2019, 15 men on the waiting list for PrEP have contracted HIV.
Jack Ash, a 47-year-old enrolled on the Impact trial, was initially not convinced by the drug: “When I first heard about PrEP, I didn’t want to take it. I was in a long-term relationship, I’d just adopted two kids, and I was living in rural Sussex.”Jack came out in 1985, over a decade before effective treatment options meant HIV was a manageable condition, not a fatal illness. “I had always used a condom. I’d lived through some of the worst years of HIV and Aids, and I didn’t get it, so I didn’t see why we needed it or, to be honest, why the NHS should fund it.”
But when Jack’s relationship broke down, “I moved to London, and realised I’d be having a sex life again, with any luck. I just sort of realised, I’ve got two kids, I’m here for the long haul, PrEP’s just a way of guaranteeing I won’t get HIV – it’s as much for their sake as mine.”
But, as a single parent, Jack couldn’t afford the monthly expenditure. Help came from the Mags Portman Trust, a fund set up in honour of the late HIV prevention pioneer that helps people on low incomes access PrEP. For Jack, after 35 years of condom use, PrEP has facilitated new kinds of sex, free from old fears.
Condom use is a common refrain among those sceptical of PrEP. The drug offers no defence against other sexually transmitted infections, and for those concerned that it encourages condomless sex – which some studies support – it’s a poor alternative to using a condom. “Condom use is always a negotiation,” says Shorai, a bisexual woman whose name has been changed to protect her from stigma within her family and community. “If you are a married woman with an unfaithful partner, if you are with someone you cannot fully trust, or if you are in an abusive relationship, the power you have to demand the use of a condom is immediately limited.”
As a woman of African origin – she grew up in Zimbabwe – Shorai was informed she was, statistically, at increased risk of contracting HIV, and after an emotionally abusive relationship with a man she knew to be unfaithful, PrEP allowed her to protect herself discreetly.
“PrEP has given me autonomy and power over my own body,” she says. No longer does she rely on the honesty of her partner or overcoming the reluctance of men to use a condom. And the safety PrEP has provided has allowed her to explore polyamorous relationships and more open forms of intimacy without the fears of her childhood.
“People haven’t used condoms since the beginning of time,” says Phil Samba, a 27-year-old PrEP user who now works to improve PrEP uptake among queer men of colour. “When straight men have sex without a condom, all they do is ask if the woman is on the pill. That’s the end of the conversation. When gay men have condomless sex, it’s suddenly ‘barebacking’ and there’s something ‘wrong’ with it.” Condomless sex among heterosexuals is treated as a fairly harmless slip-up which we make provision for in the form of the morning after pill. Sex between men doesn’t seem to engender the same duty of care.
“If HIV was an issue that primarily affected cis white straight men, we’d have had PrEP on the NHS in nanoseconds,” says Samba. “HIV disproportionately affects black African heterosexual men and women, gay and bi men, sex workers, drug users – groups that don’t fit the norm. It’s [not been funded] because our health matters less, because we aren’t seen as so important.”
When NHS England failed to commission PrEP, there was outrage across the HIV sector. Will Nutland, a doctor of public health and co-founder of PrEPster, a charity advocating for PrEP provision, originally thought the decision was born of a refusal to recognise the value of sex in people’s lives and the importance of sexual autonomy, not the racism and homophobia identified by Samba. He has since changed his mind. When the high court ruled that PrEP was in NHS England’s remit, the health agency put out a press release claiming the cost of PrEP would leave it unable to fund novel cystic fibrosis drugs for children – effectively pitting ill children against the deviance of LGBTQ people, in Nutland’s reading.
“All of the people most likely to benefit from PrEP are highly stigmatised. There was and remains a sense that the NHS can’t be seen to be giving money to people living ‘perverted’ lives,” he says. “People are getting infected every day while we have a drug that works just sitting in the lab.” As a gay man who was born before homosexuality was decriminalised in 1967, who lived through the censorship of section 28, and lost friends and lovers during the worst years of Aids, his anger is palpable.
NHS England has publicly committed to a “seamless” transition when Impact concludes. What that looks like has not yet been made clear to anyone in the sector, or PrEP users. Changes to local authority funding and years of austerity have made PrEP provision a logistical challenge. Since 2013, sexual health services have fallen under the remit of local authorities. But local authority public health budgets have been slashed by £700m in real terms since 2014. While research suggests PrEP would eventually save the NHS £1bn over 80 years, that benefit would not start to be seen for 30 years, and the costs of the quarterly STI checkups recommended to PrEP users would add strain to threadbare sexual health services.
Among PrEP users, particularly those on the Impact trial, there is a degree of frustration and, for some, guilt that they have access to something others do not. “I know healthcare workers who have wanted to prescribe PrEP but not been able to, or who have sat with people who cannot afford to pay for it and need it. There are people who are trying to protect themselves, but they aren’t able to,” George says. “That makes me angry.”