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NICE does not recommend NHS use of efgartigimod for treating generalised myasthenia gravis

24 January 2025

The National Institute for Health and Care Excellence (NICE) has decided that efgartigimod (also known as Vyvgart) should not be recommended for NHS use in England.

After four committee meetings discussing efgartigimod as a treatment for generalised myasthenia gravis, NICE has released their final draft guidance. This guidance states efgartigimod should not be recommended for use on the NHS in England.

While the draft final guidance acknowledges that ‘clinical trial evidence suggests that efgartigimod plus standard treatment improves symptoms and people’s ability to carry out their normal activities compared with standard treatment alone’, it wasn’t clear that efgartigimod was cost-effective enough to be recommended for NHS use. The guidance says there are too many gaps or uncertainties in the evidence to show that the treatment is good value for money.

We’re incredibly disappointed with this outcome, especially as NICE recognises that efgartigimod can be beneficial. It’s frustrating to see that the uncertainties around the cost-effectiveness could not be resolved. We know this will also come as a massive disappointment for people affected by myasthenia gravis.  

Next steps

This guidance means that people not currently receiving efgartigimod through the NHS in England will not be able to access it.

NICE and the manufacturer of efgartigimod (Argenx) have said people already being treated with efgartigimod (through the Early Access to Medicines Scheme) should be able to continue to access it until their doctor considers it’s no longer necessary. However, new patients cannot join the scheme and receive efgartigimod.  

Our involvement in the process

Throughout the assessment of efgartigimod we worked with the myasthenia gravis community and the charity MyAware to make sure the experiences and views of people affected by the condition were heard.

We also provided data to try to fill some of the evidence gaps. A key area where NICE felt there was a gap was around the impact myasthenia gravis has on carers. Working together, we gathered evidence to showcase this impact. We are pleased to see that NICE acknowledged the impact on carers when calculating the cost-effectiveness of efgartigimod in the final draft guidance.

While this wasn’t the outcome that we wanted, we will continue to do all that we can to campaign for access to this and other treatments for myasthenia gravis. We will keep you informed of any updates and next steps.

If you’ve been affected by this announcement and would like to speak to someone, call our helpline on 0800 652 6352, Monday to Friday, 10am-2pm, or email: info@musculardystrophyuk.org 

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