We're pleased to welcome final guidance from the National Institute for Health and Care Excellence (NICE) recommending aficamten for use on the NHS in England. This represents a new treatment option for people living with obstructive hypertrophic cardiomyopathy (HOCM).
The medicine has received marketing authorisation from the MHRA (Medicines and Healthcare products Regulatory Agency) and is currently expected to become available to eligible patients in late 2026.
This is welcome news for the HOCM community, giving patients more choice in how their condition is treated.
Bringing patient voices to the decision
As part of NICE's appraisal of aficamten, Cardiomyopathy UK submitted evidence on behalf of people living with HOCM.
Our submission drew on feedback from our patient community, highlighting the impact the condition has on people's lives, their experiences of NHS treatment and care, and what having another treatment option could mean for them and their families.
Patient experience is a vital part of the NICE appraisal process, helping decision-makers understand not only the clinical benefits of new treatments but also the realities of living with a condition every day.
What our research found
Our patient survey, conducted to inform this assessment, found that HOCM can have a considerable impact on daily life, with many people experiencing symptoms such as breathlessness, fatigue and a reduced ability to exercise. These symptoms can make everyday activities more difficult and have a significant effect on quality of life.
Through a separate survey, we also heard about some of the difficulties around mavacamten, such as the intensive monitoring required when treatment begins – with several echocardiograms often needed during the early dose adjustment period.
There's a more flexible echocardiography schedule for aficamten than for mavacamten, which could help to address some of the access challenges people currently experience.
For people living with HOCM, this means greater choice and the opportunity for more people to benefit from treatment.
This outcome means greater choice for patients and the opportunity for more people living with HOCM to benefit from treatment, feel better and live well."
Find out more
To find out more about NICE and the MHRA's decisions, you can read the press release on GOV.UK.
If you have HOCM, you're being tested for possible HOCM, or you have questions about what this guidance means for you, our specialists nurses can give general advice and signpost you to further support – call 0800 018 1024 to speak to a member of the team (8.30am-4.30pm, Monday to Friday). For more specific advice, please speak with your specialist clinical team.