My response to the NHS PrEP consultation

On 2 July 2016, Act Up London staged a ‘queue to nowhere’ demonstration outside the 56 Dean Street sexual health clinic to highlight the fact that PrEP isn’t yet available on the NHS for those who need it. Photo by Jasn, licensed CC BY-NC.

NHS England is consulting on the provision of Pre-Exposure Prophylaxis (PrEP) for HIV; the consultation ends next Friday (23 September 2016).

The team at United for PrEP, a collection of HIV/AIDS charities and service organisations, put together a response guide to help people reply to the consultation. My answers below are heavily based on their guide; you can provide your own response using their online form.

5: Has all the relevant evidence been taken into account?

Yes.

The evidence on how PrEP is an effective intervention has been summarised well.

I strongly support the provision of PrEP by the NHS and believe that it should be made available, on demand, to members of high-risk communities, as a cost-effective and exciting new technique for stemming the spread of HIV.

As such, the evidence suggests it will save the NHS money by preventing many people getting — and infecting others with — what is still, despite advances in treatment, a very serious condition that is expensive for the NHS to treat.

6: Does the impact assessment fairly reflect the likely activity, budget and service impact?

Truvada, a combination of tenofovir DF and emtricitabine used as a preventative against HIV infection or as a part of HIV treatment. Photo by Jeffrey Beall, licensed CC BY-SA.

No.

The impact assessment is helpful, especially with its overall conclusion that PrEP will be cost-effective and will save the NHS money in the longer term. This conclusion, however, is weakly stated.

Many of the assumptions in the impact assessment are very conservative and risk understating the potential benefits of PrEP. In particular:

  • Cost calculations cannot yet include Gilead’s “best and final price” for Truvada, even if we ignore that the combination of tenofovir DF and emtricitabine goes off patent within the next 18 months, substantially reducing that expense further.
  • Everything we have seen from the implementation of PrEP in the USA, as well as the evidence of the PROUD and IPERGAY studies, suggests that the IA underestimates the HIV transmission rates among potential PrEP users; PrEP’s effectiveness has been shown to be substantially higher than some of the models’ estimates here.
  • The impact assessment unnecessarily understates the significant price-drop that will result from the patent expiry of Truvada.

I am not alone in thinking that the NHS will save more money, more quickly than the estimates in the impact assessment.

7: Does the proposed policy accurately described the groups for whom PrEP should be routinely commissioned?

No.

As well as making PrEP available to queer and trans men, trans women and negative partners of unsuppressed patients, the policy should be flexible enough to allow heterosexuals at high risk of HIV without knowing the status of their partner or partners, given that most transmission now occurs from people unaware of their status.

8: Please provide any comments that you may have about the potential impact on equality and health inequalities which might arise as a result of the proposed changes that have been described?

Queer men and ethnic minorities are disproportionately affected by HIV in the UK; the introduction of PrEP can reduce transmission rates and, thus, reduce the health inequalities involved.

I know several people who import generic Truvada in order to self-dose PrEP, but this is a cost not available to many in the prime risk groups. If this cost impact were to be maintained in the longer term, then wealthier queer men may benefit, but the health inequalities would persist, so I believe it is important for PrEP to be made available on the NHS, without charge.

9: Are there any changes or additions you think need to made to this document, and why?

As well a my earlier comments, NHS England needs to assess the benefits of PrEP over a lifetime, rather than in the relatively short timeframe of 5 years.

Chart of new HIV diagnoses, deaths and prevalence in San Francisco, 2006–15. Chart taken from SF Dept of Public Health’s 2015 HIV Epidemiology annual report.

In addition, it is important to understand additional benefits:

Red ribbons, a photo by DocChewbacca, licensed CC BY-NC-SA.

That’s the end of my submission to the consultation; the Q&A format doesn’t lend itself to a nice signoff for an article, so I’ll just leave you with this message:

Go reply to the consultation yourself; the response guide makes it pretty easy and you can borrow any of my words too!

Thank you for caring.

The graph showing HIV diagnoses, deaths and prevalence in San Francisco is taken from the Department of Public Health’s 2015 HIV Epidemiology annual report without permission, ostensibly for the purpose of research under section 29(1) of the Copyright, Designs and Patents Act 1988; it is the author’s belief that this constitutes fair use by way of comment and scholarship in the meanings of 17 USC §107.

This article is dedicated to the public domain under the terms of the Creative Commons Zero licence. Please translate, copy, excerpt, share, disseminate and otherwise spread it far and wide. You don’t need to ask me, you don’t need to tell me. Just do it!

 by the author.

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🇪🇺🏳️‍🌈🏴󠁧󠁢󠁷󠁬󠁳󠁿♿⧖ Mainly-gay, mainly-Welsh political geek; proud social justice warrior+trans ally. @WikiLGBT, @OpenRightsGroup, ex- @mySociety. he/him

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Owen Blacker

Owen Blacker

🇪🇺🏳️‍🌈🏴󠁧󠁢󠁷󠁬󠁳󠁿♿⧖ Mainly-gay, mainly-Welsh political geek; proud social justice warrior+trans ally. @WikiLGBT, @OpenRightsGroup, ex- @mySociety. he/him