Five reasons NICE’s decision to reject a new long-acting PrEP injection matters to you

There is now an injection people can get twice a year which completely prevents HIV acquisition. This would be incredible news, but the medication, called lenacapavir, risks never becoming available to patients on the NHS as it’s been rejected by the UK’s medicines agency NICE for cost-effectiveness reasons.

We have less than a month to get NICE, Gilead (the medication's manufacturer)  and NHS England to come together to find a solution and change the final decision. Here is why you should care and how you can make a difference.

1. PrEP is highly effective. Everyone should be able to have worry-free sex.

Over 110,000 people are now taking PrEP in the UK. If you’re one of them, you’ll know how transformative it can be, allowing you to have the sex you want without worrying about HIV transmission. It is a tool for taking charge of your health.

But not everyone can take a daily pill. Some find pills hard to swallow. Others cannot risk a partner or family member finding their medication. Or if you’re serving our country abroad or facing a prison sentence, managing the medication can be an impossible logistical challenge.

Twice-yearly injectable PrEP is an incredible answer to many of these challenges.

2. When circumstances change, so should your options.

Any of us could end up in a relationship that becomes toxic, controlling or violent. For someone in this situation, they need to be able to access PrEP in a way which their partner cannot control or discover as easily as a bottle of pills.

Last year, NICE approved 2-monthly injectable PrEP. This was a great first step but increases rather than decreases the number of clinic visits needed to get PrEP compared to tablets.

No one is arguing that the 120,000 people in the UK taking cheaper generic PrEP tablets should be moved onto more expensive patented new PrEP injections. But for those for whom these options are the best way to prevent HIV, they must be made available.

3. Patients deserve choice. Choice tackles inequalities.

The services and medications I find relatively easy to use are not as easy for many others to use.

Think about the young gay guy living with his parents who wants to be able to have sex without worrying about being outed by a bottle of pills.

Or someone who has to travel for work or family reasons to a country like the UAE where bringing any form of HIV medication can cause problems at the border.

Or the woman in a relationship where her sexual health is determined by her partner’s choices, without access to a discreet injection and six months of worry-free sex (about HIV, at least).

Choice, with access for those who need it, is the best weapon against inequalities.

4. Your health and their choice might be two sides of the same coin.

You might not be in any of the groups I’ve mentioned.  But even if this doesn’t affect you directly, it will likely impact a friend, a colleague or someone you are yet to hook up with.

5. No country is (really) an island

We are not isolated from the global HIV epidemic.  The quicker the UK adopts these new technologies, and the greater the volumes in which it does so, the quicker these injectable PrEP options (including a two-monthly injectable that has already been approved by NICE) will be rolled out in countries that need affordable medicines most.

When lenacapavir was trialled with women and girls in South Africa, the results were remarkable. Daily tablets reduced the number of new cases of HIV only by half compared to not taking any PrEP, because the participants found taking daily pills consistently a real challenge. But in those who received injectable PrEP, zero new HIV diagnoses occurred. Not one single new case.

I was at the conference where these findings were published. People in the audience were literally moved to tears.

The Gates Foundation, Clinton Health Access Initiative (CHAI), and Children’s Investment Fund Foundation are doing great work with the pharmaceutical company Gilead to make versions for under $100-a-year of lenacapavir available across low- and middle-income countries. But it won’t cover everyone who needs injectable PrEP.

Britain needs to step up. By buying lenacapavir for people in the UK who need it, we are helping to pay for the research and development required to create these game-changing options, so that not only can our citizens benefit, but the wider world too.

Don’t just agree, act.

NICE make their final decision on 3 November on Lenacapavir. We need them, NHS England and the drug’s manufacturer, Gilead, to come together to find a solution and reverse the interim decision.

And there’s a much better chance of them all doing that if they know that there are a huge number of people passionate about this who are watching to see if they act.

If you care about the health of your community and the world, make your voice heard today by signing our petition.

Together we can take another step towards ending new cases of HIV forever – but we need to act now.

Richard Angell OBE is the Chief Executive of Terrence Higgins Trust.

Twice-yearly injectable PrEP could help end new HIV cases by 2030 – but NICE has recommended against making it available. Tell NICE, NHS England and Gilead to urgently find a solution so no community is left behind.