In December 2016, NHS England finally agreed to meet the demands of activists nationwide and fund a large-scale trial of HIV prevention drug PrEP. The announcement marked a breakthrough; previously, anyone wanting to protect themselves from the virus had been forced to either clinic-hop or buy the pills online, often through unmoderated and potentially unsafe channels.
When the trial began recruiting in October 2017, 10,000 places were allocated—8,000 for MSM (men who have sex with men) and 2,000 for women and other high-risk groups. The spaces reserved for MSM began to fill up, resulting in willing participants being turned away. Women, on the other hand, simply weren’t signing up. This pattern hasn’t changed since the trial started. As a result, some of the spaces reserved for women have even been reallocated, with the NHS claiming their needs had been “overestimated.”
A quick glance at recent research shows that this isn’t the case. Women make up one third of all people living with HIV in the UK, yet their experiences are barely ever in the public eye. In an attempt to remedy this, sexual health charity Terrence Higgins Trust and UK advocacy group Sophia Forum teamed up to create "Invisible No Longer," a report exploring the daily realities of these women. Their findings were eye-opening: 45 percent of respondents live below the poverty line, 31 percent avoid or delay seeking healthcare due to fear of discrimination, and more than 50 percent have experienced violence as a direct result of their HIV status.
These figures paint a distressing portrait of life as an HIV-positive woman, but they also highlight an obvious fact: women do need PrEP, so why aren’t they seeking it out?
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According to Sophia Forum trustee Jacqui Stevenson, culpability lies partially with the media: “Much of the coverage around PrEP has focused on gay men, and there has been little targeted outreach or information to counteract that narrative,” she explains to Broadly. To combat this problem, volunteers have launched the trans-inclusive website Women and PrEP, which aims to break information down into easy, accessible chunks. “PrEP works for women, but more needs to be done to support women and to tell them if it might be right for them,” continues Stevenson. “That will require sustained investment and a meaningful commitment to providing information, support and access.”
Marc Thompson, health improvement lead at Terrence Higgins Trust, similarly states that women are often left out of discussions around HIV. “The PROUD study, which found PrEP to be highly effective, was focused on gay men who were at high risk of contracting HIV,” he explains. “Because of this, we’ve seen the ‘acceptability’ of PrEP amongst this group grow, and we recently saw the first ever drop in new HIV diagnoses among gay and bisexual men. But it also means that people see PrEP as something which is only for gay men, which isn’t the case. We need to ensure that the treatment is utilized by everyone who could benefit from it, especially other high risk groups such as black African men and women, and trans women.”
There is obviously a reason that these discussions so often center around gay men. Throughout history, cultural conversations around HIV have been rooted in fear-mongering and insidious homophobia (the virus was initially nicknamed the "gay plague"). It’s important not to forget this history or downplay its devastating effects on gay communities worldwide. But to focus solely on this history without broadening the conversation creates an uneven playing field, and it’s women who are being left behind.
“We now have a range of HIV prevention options including PrEP, male and female condoms, and treatment and prevention,” says Stevenson. “We’ve seen steep falls in diagnoses among gay and bisexual men, especially in urban areas. But not for women. The progress is uneven.” The Invisible No Longer research indicated that this could be due to a lack of information—plenty of women don’t even know what treatment is available to them, nor do they receive information or support.
The NHS trial itself also has creases which need to be ironed out. Sexual health clinics are facing an uphill battle to provide a reliable service, and Soho’s beloved 56 Dean Street was recently criticized for slashing its number of available appointments. Vital organizations are being shuttered too, including the St. Stephens AIDs Trust, which played an instrumental role in launching and managing the PrEP trial.
“A 10,000 place trial was never going to be good enough,” Thompson argues. He recommends making more spaces available (a proposal has been made to widen the trial to 13,000 places) and reiterates that the aim should be making PrEP freely available on the NHS. Until this happens, Terrence Higgins Trust has established a PrEP Access Fund to ensure that those in financial need are given vouchers to buy a three-month supply through a verified online provider. The offer also extends to Northern Ireland, whose access to treatment Thompson describes as “very patchy.”
HIV activists and charities say they must still intervene on a regular basis, whether it be to provide free treatment or vital information to women whose lives could be saved by PrEP. Meanwhile, media outlets are unwilling to challenge an HIV cultural narrative that excludes women. This exclusion has consequences: women at risk of HIV are essentially rendered invisible and their experiences erased.
Now that diagnoses are finally starting to fall, the eradication of HIV now actually looks like a viable reality as opposed to a pipe dream. Stevenson argues that, now more than ever, we can’t afford to be complacent: “We’re at a pivotal moment in the epidemic, and now is the time to invest properly in HIV prevention for women.”