“Does anyone in Manchester have any spare PrEP?”
No one should have to ask for medication on social media. But in March of this year, 29-year-old Chris Smith found himself in that position when his sexual health clinic failed – once again – to deliver his repeat prescription of HIV pre-exposure prophylaxis (PrEP). “I put feelers out on [Twitter] and Instagram,” he tells Novara Media. “Luckily someone had some spare.”
Smith estimates this incident was the fourth time his clinic had not refilled his prescription on time. “It’s anxiety-inducing,” he says. “They [could] give up to six months worth of PrEP to people at [a] time, yet don’t choose to. It seems like the system makes what should be a very simple process, overly complicated”.
PrEP is a game-changing drug, proven to reduce the risk of getting HIV from sex by almost 100%. Yet government failures to properly fund and modernise delivery mean PrEP’s full potential is squandered as people’s health and well-being are put at serious risk.
Smith’s story is not uncommon. New research published on Thursday by the National AIDS Trust (NAT) shows that people in England still face “enormous barriers” to accessing HIV pre-exposure prophylaxis (PrEP). Titled ‘Not PrEPared’, the report found that only 35% of respondents could access PrEP at the time of the survey, whilst nearly half (47%) of clinics surveyed said they were under-resourced to provide PrEP services.
One person NAT spoke to contracted HIV after trying to get PrEP at his local clinic and being turned away. The NAT also found significant mental health problems incurred by the process of trying and failing to get it – 48% of respondents said barriers to PrEP access impacted their mental health.
Long waiting times, lack of appointments, and a training shortfall are all part of the equation. It compounds massive failures in public health communications to reach high-risk groups of people that aren’t white men who have sex with men (MSM). Women make up a third of people living with HIV in the UK, but the NAT found that not a single local authority in England reported more than five women using their PrEP services.
James Greig, acting media manager at the NAT tells Novara Media that these are “the tangible, material consequences of government failure. If we continue on the path of austerity then not only will we fail to meet the [entirely achievable] target of ending new transmissions by 2030, but we risk going backwards and undoing the progress we’ve already made.”
The NAT report recommends an urgent increase in expenditure on sexual health services and targeted outreach programmes. It’s also holding the government to promises made last year in its HIV Action Plan to improve access through a national PrEP Action Plan.
It took two court cases and a three-year trial before PrEP became routinely accessible through NHS England from 2020. Experts and PrEP users told Novara Media it’s “obscene” that life-changing treatment is at our fingertips, but still out of reach for thousands of people.
The cost of cuts.
Ben, a 26-year-old from Preston, who chose only to give his first name, told Novara Media that he was on hold for 40 minutes trying to access PrEP before his clinic’s automated phone system hung up on him. “They have very limited phoning hours, and I work full time,” he says. “[It’s] not really a conversation I want to have in work.”
‘Not PrEPared’ highlights the north west as one of three areas in England with the highest level of identified need for PrEP. It’s also where people are most commonly turned away from PrEP services, at a rate of 21%. Across the country, 30% struggled to book a PrEP appointment over the phone whilst 40% found significant barriers to booking online.
40-year-old Roger* from Manchester says that his city “suffers massively from cuts” and it’s “a nightmare” to access wider sexual health services after walk-in sessions were scrapped at his clinic. “You need to ring at 8am or 9am on the dot,” says Roger, who often gets home-test kits posted from friends in London.
“It’s an absolutely archaic system that, in many parts of the country, is in gross need of modernisation,” says public health doctor Will Nutland, co-founder of PrEPster, a grassroots organisation at the forefront of PrEP education and activism, that jointly gathered data for ‘Not PrEPared’.
Not only old fashioned, but also underfunded. “The top thing that comes out from this is the continued disinvestment in our sexual health services,” Nutland says.
In August, Nutland warned the government that “dangerous” levels of underfunding led to “some clinics reporting a 90% reduction in their ability to provide PrEP.” This came alongside additional pressures from monkeypox and Covid-19, but alarm bells have been ringing for years that sexual health services are at breaking point under Tory oversight. In 2020, longstanding sexual health charity, the Terrence Higgins Trust, reported a political “unwillingness” to address “brutal cuts” that were “compromising” sexual health services.
How did we get here? Alongside “12 years of ongoing Tory austerity cuts,” Will Nutland points to the impact of the 2012 Health and Social Care Act. This put commissioning responsibilities on local authorities with sexual health services funded by a ring-fenced public health grant supplied by national government.
Last month the Health Foundation, an independent charity campaigning for better healthcare, revealed that this grant has been cut by 24% on a real-terms per capita basis since 2015/16 and, for the past seven years, spending on local sexual health services has been slashed by £100m. A real-term increase of 1% in public health grant allocations was granted in 2020-201, but campaigners warn that such tiny amounts simply don’t keep pace with rising inflation and growing pressures.
Nutland says that funding is just one barrier to PrEP access, but failure to invest properly in sexual health will result in avoidable transmission of HIV. “We should be doing everything that we can to prevent new HIV infections. And right now, the obscene thing is that we have the technologies to do that.”
Funding equitable access.
Media and politicians have a history of encouraging an ‘us and them’ culture when they want to reinforce austerity measures around healthcare. When NHS England appealed against a High Court ruling to provide PrEP it called the treatment a drug “for men who have high-risk condomless sex with multiple male partners.” The agency denied accusations that this and other statements were inaccurate and homophobic whilst Terrence Higgins Trust condemned NHS England for trying to “pit one patient group against another” by suggesting PrEP’s availability would be to the detriment of other treatments on the NHS. The charity also said NHS England’s messaging resulted in “moralistic” and “homophobic” press coverage which included the Daily Mail dismissing PrEP as a “lifestyle drug” that same year.
Campaigners won in court but stigma and prejudice persist, as does an attitude that systemic failures in healthcare come down to personal responsibility. 26-year-old Jason in Manchester, who chose only to give his first name, is sick of the “bonkers” red tape around PrEP. “What makes me angry is that these problems are political choices”, he says. “I get the impression from elected leaders that sexual health services are luxury healthcare services; that simply if people stopped having sex, all these problems disappear.”
But “abstinence is not a robust public health strategy,” says, Greg Owen co-founder of iwantPrEPnow an awareness organisation aimed at improving access to PrEP. “It’s short-lived and is peppered with detrimental interpersonal impacts. I have significant concerns about whole communities of people being somehow expected to limit or cease their opportunity for connection and pleasure because of system failings because that’s what it is.
“We see it mirrored in the monkeypox vaccine situation too. The vaccine is there. PrEP is there – neither is being utilised fully because the system is underfunded and creaking.”
Owen worked on ‘Not PrEPared’ research as PrEP lead for the Terrence Higgins Trust and identifies “easy wins” that include: “reducing waiting lists, increasing allocation of pots of PrEP per visit and making access easier via a range of booking options. We also need to see a commitment to expanding where PrEP is available, including community pharmacies and GPs.”
Working hand-in-hand with these changes is outreach. PrEP can benefit anyone who isn’t HIV positive, but, says Greig, “there is a real lack of outreach work and awareness among basically every demographic other than white MSM – no local authority we spoke to reported having more than a tiny handful of women using it, which is a profound failure of public health.”
Some of that outreach will have to undo the government’s own lack of ambition or interest. In June this year, sexual health was stated as a key element of the government’s Women’s Health Strategy For England, but it made no mention of HIV or PrEP. In response, the Terrence Higgins Trust said “we won’t reduce the gender health gap without properly funding the country’s vital sexual health services.”
In broader terms, the ‘Not PrEPared’ report warns that sexual health commissioners must fund more targeted outreach programmes to understand the unmet needs within “heterosexual, trans, Black African, Black Caribbean, and other ethnic minority communities.” Commissioners wanting to learn from good practice can follow the lead of Phil Samba’s success as strategic lead for #PrEP4QueerMenOfColour at PrEPster.
Samba says that “more research on Black queer men” is vital “as there is not enough on what the motivations and barriers are for us accessing or not accessing PrEP”.
“It’s extremely important that public health organisations, clinics and the voluntary sector include challenging racism in their everyday activities,” he explains.
Likewise, outreach has to be fit for purpose. “There’s a lack of specifically targeted campaigns for Black queer men,” says Samba. “If we’re at the forefront of campaigns and being involved in developing them, we can really make a difference.
“We are told that we are hard to engage and hard to reach but I disagree, there are no hard-to-reach communities, there are only hard-to-reach services.”
After more than a decade of austerity and cuts, Will Nutland says that everyone can join the push for funding PrEP to its fullest potential.
“It’s not [NHS staff’s] fault. They want PrEP as much as we do,” he says. “What people can do is join in the campaigning work that they’re seeing us, and people like the National AIDS Trust, do. Let’s put PrEP and sexual health on the agenda in the run-up to the next general election.”
*Names have been changed to protect anonymity.