NHS Engalnd delayed plans to fund doubling the trial in size, just days after its announcement – and that may leave people at even greater risk.
HIV activists across the country rejoiced earlier this year as NHS England announced it would fund a doubling in size of its 2017 PrEP Impact Trial, taking the total number of slots from 13,000 to 26,000. People welcomed the news, especially because anecdotal reports that people from high-risk groups were being turned away from the trial and refused access to the vital HIV-prevention drug had trickled out; according to the National AIDS Trust, some of these potential participants who were turned away ran the risk of later contracting HIV as a result. But this initial celebration of the funding announcement on the 11th of January was short-lived; just days later, the plans to expand were were delayed indefinitely by the Trial Advisory Board.
In an official update summarising the decision, NHS England notes that the Advisory Board recognised its “commitment to fully fund” the new places, and that board members agree with plans to expand “in principle”. But board members reportedly felt that more work was needed to engage local authority commissioners and make sure research sites could actually handle the extra capacity. They also highlighted the need to consider the financial impact of expanding the trial.
These concerns might be valid, but to campaigners they look like yet another roadblock. The Impact Trial was only introduced after the National AIDS Trust legally contested NHS England’s claim that it couldn’t legally fund PrEP, and even after this landmark victory, conversations around the so-called “lifestyle drug” were thick with homophobic stigma. Since then we’ve seen progress made not just in terms of a decline in transmission rates, but also in terms of cost-efficiency – a court case last year ruled that generic alternatives to branded PrEP, known as Truvada, would be opened up.
“We would like to see extra places released as soon as possible,” says Charlie Alderwick, Senior Communications Officer at the National AIDS Trust. “This would mean at least some clinics could give PrEP to patients they would currently turn away.” In terms of how the Board’s justified the delay, Alderwick describes the current situation as a “mixed picture – because of cuts, lots of sexual health clinics are creaking at the seams. This is a broader issue to do with cuts to the public health grant that pays for these services. We have a broken system where there has been investment into the NHS, but the opposite with councils. The NHS will pay for the PrEP pills, but now councils have struggles in funding the rest of the service patients need.”
The lack of available places isn’t the only problem with the trial. In the update, board members also “stressed the need for more attention to be paid to how underrepresented communities can access PrEP”, echoing the words of activists who identified that high-risk groups were being turned away.
“Initially, when the trial was launched, I was turned down because I didn’t fit one part of the criteria,” explains activist Philip Samba, who also works as Health Improvement Specialist at HIV charity Terrence Higgins Trust. “[That was] even though I am gay, black and African – three categories that are all disproportionately affected by HIV.”
Samba explains that certain demographics are more in need of PrEP than others, and outlines that this often isn’t taken into account. It’s also worth noting that some websites sell the treatment safely at relatively low prices, but even the smallest cost can be prohibitive for some people. “I believe that all the demographics which are disproportionately affected by HIV are being let down not only by this trial, but by the NHS overall,” Samba tells me. Loosely speaking, these demographics include queer men of colour (particularly those of African descent), trans and non-binary people, sex workers and black heterosexual men and women.
Women are also particularly invisible in conversations around HIV – a fact noted and then highlighted by NGO Sophia Forum and its recent Invisible No More campaign, which amplified the voices of HIV+ women. Trustee Jacqui Stevenson similarly expresses frustration at the current funding situation, underlining that media coverage around HIV often doesn’t help. “You see this media coverage of PrEP as a ‘lifestyle drug’, which is a nakedly homophobic claim and has been critical in turning public opinion against PrEP.” It’s also furthered the myth that women – particularly heterosexual women – don’t need HIV treatment. “For women, there has always been a lack of priority, resources and attention to HIV prevention,” Stevenson continues. “It is true that the number of women vulnerable to acquiring HIV is relatively low and not so easy to calculate, but that isn’t an excuse to do nothing. Unfortunately, that’s what it has been used as.”
Reframing these conversations around HIV constitutes vital work, especially as there are places for ‘women and other groups’ still available on the trial, but the fact that they aren’t being filled exemplifies the extent to which HIV myths still aren’t being challenged. “It isn’t so much that the trial shuts out ‘women and other groups’,” explains Alderwick, “It’s more than the wider system is currently not reaching women, heterosexual men and trans people who might benefit from PrEP. This systemic issue points to a much bigger piece of work we need to do.”
To reframe conversations around HIV means to destigmatise them and to garner support for a virus which predominantly affects minorities – a task Samba stresses is difficult to achieve in a society fraught with discrimination. “If this was a health issue that disproportionately affected white, straight, cisgender middle-aged men, we would either have a solution or at least be working towards one,” he says.
Despite these various issues and the delay of the trial expansion, activists remain hopeful that the barriers listed by the board members can be hurdled with enough work. More importantly, they’re optimistic that routine commissioning – in other words, PrEP being freely available on the NHS – is still the ultimate goal. “[This] aim was set out by NHS England from the beginning of the trial,” says Alderwick, “and they have set a clear expectation that this is on the horizon. We can only work with them to advise on this and help make it happen.”
The concerns listed by the advisory board are ultimately understandable, especially given the ongoing struggle to adequately fund sexual health services, but it’s clear that more needs to be done to engage underrepresented groups and open up enough spaces for those belonging to high-risk groups. It’s also crucial that the thousands already recruited take their medication as required, as any complications or perceived trial failures could jeopardise the tireless work that activists have done to get us to this point. An end to HIV is almost in sight; now isn’t the time to push treatment down the priority list.
By Jake Hall