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Without access to unique life-saving treatment, a small number of people living with HIV will die unnecessarily: our health service must respond.
The success of advances in HIV treatment is one of the most remarkable stories of medicine over recent decades. Nearly everyone in the UK living with HIV can now access effective anti-retroviral therapy (ART), and 98% of people on treatment have undetectable viral loads meaning they can’t pass HIV on.
However, for a very small number of people, standard ART treatments will not work. This can be a result of taking earlier medications that were less effective and had more side effects than current treatments. Young people who acquired HIV though vertical transmission can face particular challenges with drug resistance. This means that for some people treatment options are limited and life-expectancy is shortened as they are at a higher risk of developing an AIDS-related illness and death. But there is a solution.
Thanks to the amazing advances in treatment, a new medicine has been developed called lenacapavir which can be injected twice a year under the skin and, in combination with other drugs, may offer these people a successful treatment option. A programme that allowed access to this treatment was opened by Gilead Sciences (the company that developed lenacapavir) and 29 people have been able to receive life-saving medicine.
The programme closed for new patients in April 2025, and since then the focus moved to devolved National Health Services to negotiate a price with the manufacturer to ensure access to lenacapavir for any new patients who need it. In Scotland, lenacapavir has been approved for treatment, which is fantastic. But for NHS England, access hasn’t yet been secured, and no new people have been able to receive lenacapavir as treatment since April 2025. We are talking small numbers here – it’s estimated to only be about 10 people per year who will need this form of HIV treatment.
These are people we know – HIV clinicians are seeing people right now who they know need lenacapavir, and some of whom may die in the coming months unless access is provided.
That’s why we are coming together with a unified voice to say clearly that access to lenacapavir must now be secured urgently for those who need it.
The UK has committed to the goal of ending new HIV transmissions by 2030 – part of which is also to end AIDS-related deaths. To make good on that ambition, the goal has to be real for everyone, not just for some – and not just for those for whom it is easy. The medicine and treatment is there to stop AIDS-related illnesses progressing for this small number of people – it just requires our healthcare system to guarantee the access and truly realise the 2030 ambition for all.
We know that decision-making often needs to go through a detailed and accountable process. But when the issue at hand is on accessibility to life-saving treatment, we urge that all efforts are made to expedite timelines and discussions. The lack of availability of lenacapavir will also mean that more people are admitted to hospital when they are very sick – costing money unnecessarily and taking up bed space that is so urgently needed. We have waited almost a year for lenacapavir to be available – and every day that now passes risks someone’s health and hastens their likely death.
The medicine is there. Clinicians are ready to administer treatment. The patients who could benefit from this are known.
It’s time to get lenacapavir approved by NHS England and out to people who need it.
Robbie Currie, CEO, National AIDS Trust
Tristan Barber, Chair, BHIVA
Garry Brough, Chair, UK-CAB
Everyone is welcome to ACT UP’s protest planning meeting – 2nd February 6-8pm at The Outside Project LGBTQIA+ Centre Unit 1, 52 Lant St, London SE1 1R.
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