New research released today has revealed two thirds (65%) of people who want to access highly effective HIV prevention drug PrEP (pre-exposure prophylaxis) are unable to do so. This comes as the latest data from the UK Health Security Agency shows seven people are still being newly diagnosed with HIV every day in England.

Campaigners celebrated the prevention drug becoming available on the NHS in England two years ago as a significant milestone in achieving the Government’s target to end new HIV cases by 2030. But this new research from a coalition of concerned organisations found that significant access barriers are denying people opportunities to protect themselves against HIV, risking progress towards the 2030 goal.

The research was conducted by National AIDS Trust, Terrence Higgins Trust, PrEPster, Sophia Forum and One Voice Network. Data from 1,120 people in England struggling to access PrEP found the most common waiting time for a PrEP appointment at a sexual health clinic was 12 weeks (35%) – with more than half of those seeking appointments waiting more than 12 weeks to be seen (57%). People trying to access PrEP for the first time faced the biggest hurdles (68% reported access issues).

One respondent even reported acquiring HIV after being denied PrEP from his local sexual health clinic, which underlines how unacceptable it is that people are being forced to wait for weeks to gain this protection against HIV.

The report shows serious concerns about the capacity and resourcing of services. The most common challenge reported was trying to book an appointment online (40%), followed by difficulties getting through to clinics by phone (30%). Meanwhile, 23% said they were turned away due to a lack of available appointments.

Some reported changing their sexual behaviour while on a waiting list, including 59 people who abstained from sex altogether. But the charities have warned that reliance on abstinence is not a sustainable sexual health approach and that this could indicate high levels of anxiety that may be alleviated through access to PrEP. A significant number of respondents reported mental health issues relating to trying to access PrEP (48%).

The data was also collected prior to the UK’s current monkeypox outbreak. Already stretched sexual health services are now having to carry out extensive testing and vaccination programmes, without the necessary additional funding, putting further pressure on PrEP services.

The coalition of organisations is now calling on the Government to urgently improve access to PrEP and to cut waiting times. This means properly resourcing sexual health services to deliver PrEP, as well as expanding where it is available – including community pharmacies and GPs.

The organisations are also calling for a dedicated PrEP Action plan as promised in the Government’s HIV Action Plan published on World AIDS Day in 2021.

Deborah Gold, Chief Executive of National AIDS Trust, said: “It’s devastating to uncover that someone was diagnosed with HIV while waiting for PrEP when this was completely preventable. PrEP should be easy to give to anyone who needs it. Clinics are under immense strain due to COVID-19 and are now having to deal with the country’s monkeypox response without additional funding and support. That means services face massive backlogs. It’s the Government’s responsibility to fix this – and without action, we cannot meet the national objective of ending HIV transmissions by 2030.” “Sexual health clinics must be resourced to meet the existing high demand for PrEP but they also shouldn’t be left to go it alone –access and reach could be dramatically improved if it were available through other health services, such as community pharmacies.”

Florence Eshalomi MP, Co-chair of the All Party Parliamentary Group on HIV and AIDS, said: “My constituency in Lambeth has the highest prevalence of HIV in the country and it’s unacceptable that PrEP isn’t having the impact it should in protecting those who need it against HIV. This powerful report shows we need action from the Government to remove the significant barriers to PrEP access for those who are clamouring for it – never mind the crucial work necessary to promote the huge benefits to the people and communities who still don’t know nearly enough about PrEP.”