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I Want PrEP Now - HIV Activism and the NHS

Writing: Iz Gius

Illustration: Juliet Richards

It can be easy to think of HIV/AIDS as a distant disease of the past; I certainly did. I imagined New York City in the 80s, Rent, Ronald Reagan refusing to speak up, the death of Freddie Mercury. Nowadays, nothing like that could happen, right? Surely we have made strides in terms of our public health infrastructure, attitudes towards LGBT+ people, and understanding of disease and contagion. We have, and yet there is still so much work to be done. The continuing activism surrounding PrEP and the NHS has shed light on the ways that our healthcare systems differentially value bodies, and how cuts to the NHS will disproportionately affect the most marginalized communities among us. What is PrEP? PrEP stands for Pre-Exposure Prophylaxis, and it is an antiretroviral drug which can prevent HIV transmission when taken before and after sex. A 2012 UK trial of PrEP was stopped early because there was such a high level of effectiveness (100% biological effectiveness) – in other words, PrEP worked so well that it was unethical to withhold it from the control patients of the study.

The importance of PrEP cannot be overstated. It is a complete game-changer. More than 30 million people have died from HIV/AIDS around the world, and the most recent estimates (2017) suggest that there are 101,600 people living with HIV in the UK. In 2015, one in eight gay men in London had HIV. Trans women, black people, and IV drug users are also disproportionately affected. PrEP has the power to change this. Where can I get PrEP? That’s the complicated part. The answer – it depends on where you live. Despite the revolutionary results of the 2012 Trial, the process to get drugs approved by the NHS is slow and full of bureaucratic ineptitude. So despite the fact that PrEP was approved by the World Health Organization in 2014, and has been available in the US since 2012, you still cannot get PrEP on the NHS as part of routine service provision, except in Scotland (*woop woop Scotland*).

From the beginning, PrEP was controversial – critics claimed that it would force taxpayers to pay for reckless (implied: queer) sex and indulged gay men who didn’t want to wear a condom. The best way to prevent HIV, they said, was simply to behave ‘well’. This narrative is shockingly familiar to public and scientific response after the initial outbreak of AIDS. The message is the same: the groups being disproportionately affected by HIV (gay and bisexual men, trans women, and black people) deserve their fate. In 2016, from high-up in NHS England came a decision: they were not legally able to recommend PrEP, due to the re-shaping of the NHS in 2012 which delegated public health responsibility to local councils. These local authorities were not given enough money to provide necessary public health services; plus, due to price gouging by pharmaceutical companies, a month’s supply of PrEP costs a whopping£500. The NHS, facing a financial crisis, attempted to cut without cutting. Because PrEP did not fit a warped definition of ‘treatment’, NHS England claimed it wasn’t their problem. Two court cases challenged this decision, and both times (thanks to an outpouring of community activism), the National AIDS Trust won against NHS England. What now? NHS England promised a large-scale PrEP trial in 2016, launched the trial in October 2017 with 10,000 places, increasing by 3,000 places in September 2018 following reports that sexual health clinics were oversubscribed and turning people away.

This is not a long-term solution, and it is not enough. Trials are not the same as routine availability, and every day that passes, people are diagnosed with a lifelong condition that could easily be prevented. In Scotland, PrEP is routinely available through sexual health clinics, and has been since 2017. Both Wales and Northern Ireland are currently running trials with no cap on numbers. The case of PrEP and the NHS is a testament to the dangers of cutting nationalized healthcare, and the problematic game that politicians and healthcare providers play in attempting to place differential value on human lives. Gay, trans, and black lives deserve the same urgency in providing prevention and treatment as white, straight, cis individuals. We cannot let bigotry flourish with the excuse of cost – effectiveness. PrEP is not about promiscuity or recklessness – it is about taking responsibility and showing care for yourself, your sexual partners, and your communities. If you are interested in learning more or in getting involved, I cannot recommend Prepster enough. They are a London-based group of HIV prevention activists, educating and agitating for PrEP access. Their website is amazing, and they run a variety of campaigns which are especially inclusive to groups that are often left out of the narrative of HIV/AIDS (like trans women, migrants, and people of color). Also, I Want PrEP Now is a website which provides information about accessing PrEP outside of the NHS through cheaper generic means. ( ( ( ( ( (

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