My response to the NHS PrEP consultation
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?
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?
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?
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.
In addition, it is important to understand additional benefits:
- Queer men and transwomen are disproportionately affected by mental health issues — some of which contribute to problems around the use of other HIV prevention methods. In particular, the trauma of the AIDS crisis means that many queer men and transwomen have a sense of anxiety around sex. The introduction of PrEP has been seen to cause a reduction in mental health consequences of the AIDS crisis in other countries, where men and transwomen have spoken eloquently about the sense of control that taking PrEP has given them, allowing a more-normal relationship with sex.
- The significant fall in the number of people acquiring HIV — as we have seen in the 2015 HIV Epidemiology annual report from the San Francisco Department of Public Health, for example — will itself cause a reduction in the negative physical and mental health outcomes of HIV diagnoses.
- The introduction of PrEP itself will cause a greater number of individuals with significant sexual health needs to engage with sexual health services, increasing the likelihood of reaching these people with other messaging around sexual health and related issues (such as safer injecting messaging about chemsex, for example).
- The introduction of innovative treatment, prevention and health-promotion techniques generally simulates further innovation.
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:
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.
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