HIV charities are shocked and angry over a "shameful" NHS statement released on Monday announcing that the drug that prevents HIV infection will not be made widely available on the NHS.
NHS England published a decision on its website on Monday — following an 18-month consideration period — outlining its reasons for not funding Truvada in the majority of cases. The main reason cited was that "NHS England is not responsible for commissioning HIV prevention services". (NHS England does, however, fund other sexual health prevention medication such as the oral contraceptive pill.)
Truvada was approved for use in the USA in 2012, in a prevention regime referred to as PrEP (pre-exposure prophylaxis), which blocks HIV infection in those who take it, but has not been available on the NHS, except for those involved in a study. This study found that it was effective in almost all cases.
The National Aids Trust (NAT) told BuzzFeed News: “NAT shares the anger and distress felt by many thousands of people across the country at NHS England’s decision to abandon its work to provide PrEP, near the very end of the process. In a shocking U-turn, NHS England has pulled the plug on over 18 months of hard work which demonstrated the need, efficacy and cost-effectiveness of PrEP."
The Terence Higgins Trust, Britain's biggest and longest-running HIV charity, said they were in "shock and disbelief" at the news.
"By denying full availability of PrEP we are failing those who are at risk of HIV. Today’s decision by NHS England to depart with due process, and, instead, offer a tokenistic nod to what has the potential to revolutionise HIV prevention in the UK, is shameful."
The NHS England statement outlined what it will provide instead: A fund of £2m over two years to supply the medication for just 500 gay men who are most at risk of infection – a tiny proportion of what charities and campaigners were hoping for in order to dramatically reduce the number of HIV infections per year.
This £2m, said the NHS statement, will be used to set up a "number of early implementer test sites. These will be undertaken in conjunction with Public Health England and will seek to answer the remaining questions around how PrEP could be commissioned in the most cost effective and integrated way to reduce HIV and sexually transmitted infections in those at highest risk."
But the National Aids Trust attacked these measures as muddled and ineffective.
“The decision is not informed by any due process; the amount of money is arbitrary; the claim that more ‘testing’ of PrEP is needed is disingenuous," said NAT. "500 does not remotely cover the number of gay men at high risk of HIV nor meet the needs of heterosexuals at risk. There is no clarity within the Department of Health, the NHS or Public Health England as to who long-term is responsible to commission and fund PrEP."
The Terence Higgins Trust also called for clarity: "PrEP has already been approved in the US, Kenya, Israel, Canada, France. And yet, our own government refuses to take responsibility for PrEP.
"Today’s statement makes it no clearer who is responsible – is it the Department of Health, local authorities, the NHS or Public Health England? We need answers, we need access, and we demand both.”
The NAT warned that NHS England's decision will have "serious consequences" and appealed to senior politicians to intervene.
"Over 5,000 gay men will get HIV over the next two years – very many of whom would not have done so if PrEP had been delivered as proposed... Faced with one of the most exciting prevention options to emerge since the HIV epidemic began, and which offers the prospect of real success in combatting this virus, the NHS has failed miserably to deliver.
The statement concluded: "We call on Ministers to intervene and reverse this deplorable decision – securing a process to provide PrEP on the basis of evidence and need.”
Dr Will Nutland, who runs prepster.info, a PrEP and Truvada information website, and who has campaigned for the NHS to offer the drug, also lambasted NHS bosses for this decision.
"The UK once had a reputation for being a leader in HIV prevention and that reputation now lays in tatters," Nutland told BuzzFeed News. "The proposal to fund PrEP for another 500 men is a stalling tactic to cover up the arguments and confusion about how NHS services and prevention services should be commissioned."
He continued: "NHS England has turned its back on a process that could have significantly contributed to turning the tide of HIV in this country. The decision is ill-conceived, is not based on evidence, and will directly contribute to the on-going sexual ill health of the nation."
NHS England on Monday declined BuzzFeed News' request to interview its chief executive Simon Stevens about the decision.