PrEP - What went wrong? What should happen?

22 Mar 2016

Rarely has a u-turn, rarely has a breach of trust, been so misleadingly announced. Reading NHS England’s press release, ‘Update on commissioning and provision of PrEP for HIV prevention’ (21 March 2016), you would think the NHS were simply clarifying progress to date and the well understood responsibilities for the commissioning of PrEP. In fact this press release was the announcement of a shocking U-turn as NHS England suddenly abandoned its own process for the approval of PrEP, just before its conclusion, with nothing to replace it bar some loose change found down the back of the sofa.

The deception begins in the very first paragraph:

‘Over the last year, doctors, patient groups, Public Health England (PHE), NHS England and the Department of Health (DH) have worked together to investigate the role that Pre Exposure Prophylaxis could play in preventing HIV in those at highest risk.’

It sounds like a conference or brainstorming session.  In fact it was a formal NHS England process established not one year but 18 months ago to determine whether the NHS should fund the drug used for PrEP – Truvada. The process was being undertaken in accordance with NHS requirements for deciding whether to fund a new drug from the specialised commissioning budget. Everyone involved, including me, were told clearly and repeatedly that whilst the clinic service to provide PrEP would be commissioned within sexual health clinics by local government as part of their public health responsibilities, the drug itself would fall to NHS England to be commissioned. This was in part because of the costs involved which would be hard for local authorities to bear and also because of NHS England’s experience in the procurement of this drug for treatment purposes.  NHS England accepted that if there is a case to commission Truvada for PrEP it is for NHS England to consider that case and come to a view.  The final decision was to be made in June at a formal panel which would consider the results of months of hard work, cost-effectiveness analysis, stakeholder testing and careful consideration by various NHS committees.  And then out of nowhere, the plug was pulled.  But you wouldn’t know any of this from the NHS England release.

The NHS England statement goes on to say that ‘local authorities are the responsible commissioner for HIV prevention services’ and that ‘NHS England is not responsible for commissioning HIV prevention services’.  Again, this is disingenuous.  It is true that the main responsibility for prevention rests with local authorities.  But not the sole responsibility.  NHS England also has a clear role in prevention.  It commissions immunisation and vaccines for example.  There is nothing to prevent the NHS commissioning PrEP should it wish to.  But you would think from the release that it is impossible for NHS England to do anything on prevention itself. 

What went wrong?  The reason given is fears that if PrEP is funded, advocates for other conditions which lose out in the next funding round might take legal action, arguing that the specialised commissioning budget is not there for prevention but for treatment.  That may or may not be the case.  It is extraordinary that such legal concerns were only raised at the eleventh hour, after months of work.  Or was it the prospect of PrEP being agreed, and the costs for the NHS (albeit it’s cost-effective) that at some level prompted this about-face?

Even if we accept that there might have been problems using the specialised commissioning budget, and forgive the mistake of allowing us to work on a false premise for such a long time, the argument that the best commissioning home for PrEP is the NHS remains a powerful one – and the NHS does and should do prevention when it can do so effectively. 

What should be done?  In announcing their misgivings about using the specialised commissioning budget, the NHS should instead have proposed an alternative commissioning process and budget to take on all the work which has to date been done and come to a conclusion on whether to fund PrEP for those who need it on the NHS.  Instead the NHS admits it has no idea who is to be responsible for commissioning the drug for PrEP.  Instead up to £2 million is offered over two years to provide PrEP for an additional 500 gay men at high risk in a number of early implementer test sites in certain areas of the country.  The amount of money is arbitrary.  The number to benefit is arbitrary. The selection of clinics will be arbitrary.  This does hardly anything to meet the level of need.  The decision is not based on any clear assessment of need or due process.  The claim that we need more trials and answers to more questions is simply wrong.  Numerous real world trials have been done and there is plenty of experience from the US and elsewhere on the implementation of PrEP. 

This fiasco will have serious human consequences in the many HIV transmissions which will take place and which would undoubtedly have been prevented if the NHS had not walked away from PrEP.  It epitomises the inability of our health system to value prevention. Perhaps also the failure of our health system to value equally the well-being of gay men.  We cannot allow PrEP to be in limbo for a further two years, provided to just a few on a totally inequitable basis.  We need Ministers to take a lead in providing as a matter of urgency a credible alternative for the commissioning and funding of PrEP for everyone at high risk as soon as possible.

NHS England's press release can be read here.

Find out more about why is PrEP needed? 

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