We at myaware are extremely disappointed to hear that new medicines for myasthenia gravis are repeatedly receiving negative guidance for use on the NHS. Clearly, there is a problem with how medications for rare diseases are assessed by NICE, and this needs to improve if we want to open access to novel therapeutics to our most vulnerable in the patient community. 

Myaware are openly engaging with NICE on this issue and are looking to appeal once more. We will continue to do all we can to represent the patient voice and push for equity of access in line with our international peers. We are also engaging with our colleagues on a multi-charity level.

These medicines are currently being marketed towards our refractory patients, those who do not respond to standard therapy and have limited options to control their symptoms. It is incredibly disheartening that this portion of our community are being denied access to medicines that can greatly improve their quality of life and for some are their only option to control their myasthenia.

As a community, we urge all who are able to engage with their local MP. To enable this, we have created fileable template letters similar to our last Call to Action. Our colleagues at MDUK are also engaging with this campaign are will be encouraging their members to get involved.

It is so important that we do not take these assessments quietly, but instead make sure decision makers across the country know the impact this evolving issue is having on all myasthenia patients.

Download our template letter for patients

Download our template letter for carers and loved ones