Treatment for myasthenia gravis not approved for NHS use in England
4 June 2025
Efgartigimod (Vyvgart), a treatment for myasthenia gravis, has not been recommended for use on the NHS in England. Although doctors can prescribe it privately, this decision means that anyone eligible for the treatment would need to cover the cost themselves.
Over the last couple of years, the National Institute for Health and Care Excellence (NICE) has been accessing whether efgartigimod should be made available on the NHS in England. After four committee meetings and appeals from the manufacturer Argenx, patient organisations including myasthenia charity Myaware and us, as well as leading clinical experts, NICE has confirmed the treatment will not be funded.
A treatment that can make a real difference
Despite acknowledging that efgartigimod can “improve symptoms and people’s ability to carry out their normal activities”, NICE decided that the benefit it offers isn’t currently enough to justify the cost to the NHS.
But for people who have received efgartigimod, the benefits are clear. Some have described regaining the ability to walk daily, dress independently, and take part in family life — things that were previously out of reach. Others have spoken about being able to return to work, study again, or simply feel hope for the future. These experiences highlight the meaningful difference this treatment can make for people living with myasthenia gravis.
“I’m disappointed efgartigimod won’t become available on the NHS. I hope future decisions consider doctors’ input and help patients like me who don’t respond to standard treatments.”
Andy
Living with myasthenia gravis
Private access only
This means that even if someone is eligible for the treatment, they would need to pay for it privately. For many, this simply won’t be possible, and it risks creating a system where only those who can afford to pay out of pocket can access a treatment that could significantly improve their quality of life.
“We’re beyond disappointed with this decision. People living with myasthenia gravis have been let down by a system that continues to put up barriers to accessing treatments that could significantly improve their quality of life. Despite evidence that efgartigimod can improve symptoms, and strong support from clinicians and the patient community, NICE has chosen not to make it available on the NHS. This decision sends a disheartening message to those affected by rare and complex conditions — treatments are within their grasp, but their needs are not being prioritised.”
Andy Fletcher
Our CEO
Access to treatment going forward
Argenx has confirmed that people currently receiving efgartigimod through the Early Access to Medicines Scheme will continue to have access, for as long as their doctor feels it’s needed. However, new patients won’t be able to start the treatment.
We welcome Argenx’s commitment to continuing treatment for those already on it and appreciate their ongoing efforts to find a way forward for everyone who could benefit from efgartigimod.
What this means across the UK
Wales and Northern Ireland typically follow NICE guidance, so the decision is likely to apply there as well. Scotland has a separate medicines assessment process, so this ruling does not apply to people with myasthenia gravis in Scotland. Argenx is currently in discussions with the relevant authorities in Scotland. We’ll continue to work alongside Myaware to ensure the voices of those affected are heard throughout this process.
Next steps
We believe this is an unacceptable outcome for people living with myasthenia gravis. It denies access to a treatment that has the potential to make a real difference to people’s daily lives and reflects broader issues in how treatments for rare and complex conditions are assessed.
We’re looking at how we can best support the myasthenia gravis community following this decision. This includes working with clinicians, partner organisations, and people living with the condition to understand the impact and explore what can be done to help improve access in the future. Our focus is on making sure the needs of those affected continue to be heard — and that we work together to push for fairer access to treatment.
If you have been affected by this news and would like support please do reach out to our helpline, call 0800 652 6352 or email info@musculardystrophyuk.org.
