Myaware have been engaging with NICE throughout the appraisal process for the new treatment Efgartigimod. Efgartigimod is an add-on therapy to standard treatment for generalised myasthenia gravis in adults who test positive for anti-acetylcholine antibodies.

Following the committee meeting held on the 10th of August, NICE released initial guidance that Efgartigimod is not recommended to be made available for new patients. This is disappointing news considering the strong patient testimony that has come through from those who have received treatment. Myaware had also put forward a significant amount of anecdotal data provided by members regarding their experience of myasthenia gravis and the impact it had on their carers and family.

In order to keep our members informed, myaware have met with the company behind Efgartigimod, Argenx, and been reassured they are coordinating with NICE to have this decision reversed. During the committee meeting, it was shown that NICE had reservations regarding the cost-effectiveness and target patient population of Efgartigimod. We hope that, following discussions with Argenx, these concerns will be resolved. Myaware will also be submitting their own comments to NICE following this decision.

Regardless of the guidance published, those who have began treatment with Efgartigimod can continue without change to the funding arrangements. They will continue treatment until they and their NHS clinician decide it is no longer necessary.

If you are affected by this news in any way, please contact our Research and Partnerships Officer Charlotte Campbell so that we can share these views in future discussions with NICE and Argenx.

click here to read about Efgartigimod and how it works.

Read the full guidance published by NICE.