NHS England Decision on PrEP: A Bitter Pill for Women to Swallow

What role should preventative medicine play in our health system? As the NHS is fragmented and funding for healthcare is cut, are we prioritising funding for treatment, over prevention? Or, is effective, and cost-effective prevention still worth prioritising?

What role should preventative medicine play in our health system? As the NHS is fragmented and funding for healthcare is cut, are we prioritising funding for treatment, over prevention? Or, is effective, and cost-effective prevention still worth prioritising?

In terms of prevention of HIV the introduction of pre-exposure prophylaxis (PrEP) could be a game-changer. PrEP is a daily pill which if taken properly greatly reduces the chances of acquiring HIV. This effective form of prevention has the potential to significantly reduce HIV transmission and therefore to greatly reduce costs for HIV treatment, care and support.

Yet recently NHS England announced a shock decision - that it would not fund PrEP. This was completely unexpected - consultation and previous statements had suggested that if PrEP was cost-effective it would be funded. In its statement on the U-turn, NHS England cites a lack of clarity over who is responsible for commissioning, and proposes a few test sites to offer PrEP to 500 gay men over two years. The decision seems to be based solely on funding, and who is responsible for it, wherein local authorities have responded that they are not responsible for commissioning. The decision has been criticised by MPs, charities, and the British HIV Association.

Much of the coverage and reaction to this decision has focussed on the impact on gay men who might benefit from PrEP. Gay men are disproportionately affected by HIV, accounting for 40% of new HIV diagnoses in the UK. This burden is recognised in the NHS decision to continue making PrEP available to participants in the PROUD study (almost all gay men) and to fund further trials with gay men, though this will not meet the needs of all gay men who might benefit.

Nevertheless anyone can acquire HIV. In 2014, 6151 people in the UK were diagnosed with HIV including 1540 women representing 25% of new HIV diagnoses. Women, men, and trans persons of all sexualities can and do get HIV. And PrEP is known to work for them too. So why are they excluded completely from access to PrEP in the UK on the NHS?

Sophia Forum is the only organisation in the UK that focuses solely on women living with and affected by HIV. We see a sustained and repeated pattern - women living with and at risk of acquiring HIV are invisible, marginalised and often ignored. It is enormously challenging for women at risk of acquiring HIV to speak up, and articulate their needs and demands including in national debates on new prevention methods. A recent workshop (Women PrEPare) with women living with HIV led by Positively UK showed that women want and need more information on all forms of HIV prevention as well as opportunities for active and meaningful engagement.

For trans women, the lack of visibility is compounded by a systematic failure to collect and disaggregate data in the UK - which means we don't know the number of trans women living with HIV, or at risk of acquiring it and in need of prevention. But, community-led and delivered services such as CliniQ are increasingly building the case - and deserve to be consulted in decisions such as this. Global data suggests that trans women are 49 times more likely to acquire HIV. Yet in the UK they are to be excluded from access to a new type of effective HIV prevention.

Many recent comments following the NHS U-turn have asked - 'why not just use condoms'? Condoms remain a useful tool in HIV prevention but are not preferred by all people at risk for HIV transmission. Women are often not in a strong position to negotiate their use by male partners. PrEP would be an ideal addition as a choice - for those unable to use condoms, including women who want to become pregnant. PrEP is exciting because it is individually controlled - putting HIV prevention decisions into the hands of those at risk.

So is prevention worth prioritising? We know that preventing HIV reduces greater long term costs and spares the social impact of an HIV diagnosis (sadly there's "no pill to prevent HIV stigma"). Prevention supports better health in the long term, which is better for individuals, and for the NHS.

Sophia Forum proposes the following Prevention Principles, to uphold effective and equitable prevention for all:

  • No individual means of prevention should be considered in isolation, but as part of a comprehensive package of prevention
  • Preference should be given to education/ programmes/ interventions that are: evidence-based; least burdensome; accessible to all; equitable to all; monitored for impact with data disaggregated by gender, sex, age and other factors.
  • Any decision-making on access, availability and programmes should have meaningful involvement of all communities that might benefit (including women).

NHS England's PrEP decision fails on all these principles.

Everybody has a right to the best available standard of healthcare, including access to prevention. No one should be excluded from this because of who they are. PrEP should be available to everyone who is at significant risk of acquiring HIV. That is the right decision - on health grounds, economic grounds and for equality. Women and men of all sexual and gender identities have an equal right of access to the prevention and care they need to maintain their health. The NHS decision is wrong, and must be overturned.


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