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Be PrEP-ared!
With uncapped PrEP rollout due to start in England, Richard Angell, Interim Head of Policy and Public Affairs at Terrence Higgins Trust (THT), looks at the painstakingly long and winding road to this important milestone THT, along with our close and amazing partners at National AIDS Trust (NAT), Prepster, the Elton John Aids Foundation (EJAF), local HIV advocacy groups, LGBTQ+ and BAME activists, a coalition of health professionals, councillors and MPs – both living with and without HIV – have made this remarkable achievement happen.
) “The problem with democratic politics –
change can be slow,” I remember being told when I first met an MP aged 16. I was keen to lobby for the abolition of Section 28 and impatient to see this unjust law fall. This was the year 2000. I believed myself to be radical and agenda setting – having only learned about the horrendous legislation weeks before and being closed down from discussing it in school because of... Section 28.
Below is the painstaking timetable of work done over the last five years to make this moment possible. It shouldn’t have taken this long. It shouldn’t have taken court cases, parliamentary lobbies, trials and pilots. It shouldn’t have meant people becoming HIV+ while waiting for PrEP. But it did.
I largely dismissed the pessimism that ‘change had to take so long’ – time in politics, I have learnt, is always correlated with political will. Instead, I went on a journey of discovery about those who had campaigned before me: we stand on the shoulders of giants.
At times the government was dragged kicking and screaming, at other times doing the right thing and ploughing ahead. Our chief executive, Ian Green, gave evidence in Parliament while our members and supporter wrote to their MPs. Our friends in national and local HIV groups lobbied the government and spread the word. What everyone involved in this remarkable campaign can each say, hand on heart, is: “We did not do it alone but it would not have happened without us”. We really do stand on the shoulders of giants – they live among us.
This is never more poignant than in the HIV sector. Our charity was founded by early pioneers of HIV activism – the partner and friends of Terry Higgins – and has achieved so much thanks to them and to many more people since who never knew him. For them, his untimely passing meant so much and still does. The Department of Health & Social Care’s (DHSC) announcement of funding for local authorities in England to roll out uncapped PrEP – the drug preventing HIV transmission – is a watershed moment. It’s a time to celebrate, to look back and also to set out a further agenda – because sadly the work is never done.
My role – again working with a coalition of remarkable people and until I hand back to Debbie Laycock when she returns from maternity leave – is to run the next leg of the relay.
Writing this as THT’s newly-appointed interim head of policy is a double-edged sword: half feeling like an imposter picking up the baton at the last possible moment, half with the clarity to see all that has been done (and give credit) and what is still to be achieved. RICHARD ANGELL
It’s great that uncapped PrEP is to be available at sexual health clinics – but we know these are used disproportionately less by women, trans people and people of colour. Why is PrEP not available in maternity services, GP surgeries, pharmacies, gender clinics and many more health settings besides? It is only a matter of time, or will. Will the agreed level of rollout funding – £16million annually – be a recurring grant? If not, how can PrEP possibly reach all the communities who stand to benefit from it? Will the rich set of data from the PrEP Impact Trial be properly used to shape the future commissioning of PrEP? We are pleased with assurances that the data will be published in a timely fashion that will enable the community to inform its campaigns and future service provision. Will there continue to be funding to share vital public health and HIV reduction messages? Many of those who would benefit from PrEP have never heard it.
"Everyone involved in this remarkable campaign can each say, hand on heart, 'We did not do it alone but it would not have happened without us'." Will the report of the HIV Commission – independent of but founded by us, NAT and EJAF – be embraced by the government or left on a shelf, ignored in favour of Covid, cancer and obesity? That choice is ours. THT – and the friends and partners we work with – will not give up until PrEP is available to everyone who can benefit and until England is on course to be the first nation in the world to end domestic HIV transmission, by 2030. Please continue to support our work – the relay is not run yet. October 2020 is a time to recognise how far we have come – uncapped PrEP across England finally – but my team and colleagues have our eye on a bigger prize. Come and join us on the next leg of this epic journey.
PrEP timeline, 2015-2020 September 2015: The results of the UK-based PROUD study are published in The Lancet showing overwhelmingly that PrEP is highly effective at preventing HIV among gay and bi men. Since then, we know it works for anyone regardless of gender, ethnicity or sexuality. October 2015: iwantPrEPnow and PrEPster launch. iwantPrEPnow is set up by Greg Owen and Alex Craddock to help more people access the powerful tool for stopping HIV. This site provides information about how to take PrEP and how to access it. PrEPster is set up by activists with a mission is to educate and agitate for PrEP in England and beyond. March 2016: NHS England claims it’s not responsible for HIV prevention – despite PrEP’s cost-effectiveness and huge potential to stop HIV infections. August 2016: NHS England is taken to the high court by NAT with sector backing to challenge the claim that because PrEP was a preventative tool it wasn’t responsible for providing it. NHS England lost the case and a subsequent appeal in November 2016. December 2016: NHS England promises a large-scale PrEP trial to take place across the country, looking at the demand for PrEP and how long people stay on it in a real-world setting. October 2017: The PrEP Impact Trial finally launches but only goes live in a select number of clinics, mostly in London and the south east, including Brighton. Of the initial 10,000 places, 2,000 are ringfenced for groups other than gay and bi men to access. The trial website is launched to
