protesting for life-saving hiv drugs
We have the tools to prevent HIV transmissions, but the NHS is withholding the drugs. These protestors are leading the fight back.
HIV/AIDS has killed 35 million people since the the epidemic began in 1981. The invention of anti-retroviral drugs in 1996 stopped HIV/AIDS being a death sentence, but progress since has been stagnant. In the UK, transmissions have risen steadily over the past decade, particularly among men who have sex with men, women of colour, sex workers, and intravenous drug users.
A major new breakthrough is Pre-Exposure Prophylaxis, or PrEP, a revolutionary pill that is up to 99% effective in preventing the transmission of HIV if taken daily. The government has refused to roll out the drug nationwide twice, provoking the anger of HIV campaigners and clinicians.
United4PrEP, a coalition of HIV clinicians, charities, advocacy groups and activists, called the protest to fight for the life-changing drug outside the Department of Health in Whitehall. Demonstrators decked in blue, the colour of the pill, scrawled blue chalk graffiti over the pavements of Westminster as speakers lambasted NHS England's refusal to get behind the most valuable new tool in the fight against HIV in two decades. Chants of "Act Up, Fight Back, Fight AIDS" ricocheted off NHS England Headquarters while awkward employees sidled past the assembled crowd.
17 protesters stood on stools bearing an array of placards demanding immediate access to PrEP. One of the protest organisers, Collette Brydon explained to i-D, "The placards represent the 17 people a day who will be diagnosed with HIV in the UK until NHS England accept responsibility and finally tackle the epidemic head on."
It wasn't just the Department of Health that came under fire from activists. Gilead, the pharmaceutical giant behind the life-saving medication, were put on blast with signs reading "Greedy Gilead Drop The Price". The criticism stems from the price of the treatment: while the monthly cost of producing the pill is estimated at £15, and unbranded alternatives available online cost around £44 per month online, Gilead's version costs a staggering £400 per month.
"This isn't a medicine that required a huge amount of testing to discover that it works as PrEP," explains Jacob Johnson, a medical student and ACT UP activist. "They don't have huge costs to recoup from research and development: they're just being greedy and making as much money as they can before the patent ends in two years time, after which point cheaper alternatives can be developed."
The battle for PrEP was unexpected. After two large-scale studies showed it to be more than 86% effective in preventing the transmissions of HIV, stopping 17 out of every 20 HIV infections that would have happened without PrEP, its effectiveness was in no doubt. Other studies have shown that when taken daily over a long period, it can be up to 99% effective, more effective than condoms.
Further models showed it to be cost-effective too: the treatment for HIV+ costs around £360,000 over the course of a lifetime, while PrEP was shown to be cost-neutral in one study, and cost-saving in another.
Contrary to calls from the scientific community and activists alike, PrEP was dropped before reaching the final stage of commissioning. NHS England claimed local councils are in charge of prevention services, and thus PrEP would fall to them to decide individually. Instead, it offered to roll out PrEP on a pilot scheme to 500 people, far short of the general availability campaigners argue is needed.
The decision, first made on March 21 was soon under appeal due to public outcry. Yet on 31 May, NHS England restated its original decision, to the fury and confusion of clinicians, activists and charities alike. "I was absolutely appalled and disgusted," says Susan Cole of the National AIDS Trust, "it's clearly a game-changer, and it's inconceivable that the NHS won't roll it out."
The National AIDS Trust have filed a legal challenge in the High Court against NHS England's decision. According to legal documents seen by i-D, the claim that prevention is the preserve of local authorities is hollow: NHS England already commissions a number of treatments that qualify as preventative care. The court date is set for July 13th.
The feeling among many protestors was that the decision would not have been taken if HIV did not affect marginalised communities. such as sex workers, drug users, African women, trans people and men who have sex with men, who currently make up over half of transmissions, despite constituting only around 3% of the population at large. "If this was an illness that disproportionately affected straight, white people" one protester argued, "we wouldn't be here today."
Alex Craddock, an activist with I Want PrEP Now, an organisation offering advice on how to acquire PrEP while it remains unavailable from the NHS, is currently on PrEP using generic alternatives found online. For him, it was a basic question of sexual health: "I live in South London. When I walk into a gay bar, upwards of 1 in 7 men there will be HIV positive, and 1 in 4 won't know they are. It just makes sense to take PrEP, you can never be protected enough." As it stands, he is paying for PrEP out of his own pocket, and struggling to afford the monthly expense.
With over 110,000 people in the UK now living with HIV, including 6% of sexually active gay men nationwide and 13% in London, for marginalised communities, PrEP is a life-changing tool in the battle to end HIV/AIDS.
"The AIDS crisis isn't over," explained one demonstrator, "while we may not be dying thanks to antiretroviral medication, those living with HIV in the UK are still stigmatised, excluded and marginalised according to their status. We now have the tools to end this pandemic, so why the fuck aren't the NHS using them?"
Text Edward Siddons
Photography Alice Zoo