Myaware has been engaging with NICE during the appraisal process of developing guidance for Ravulizumab treatment on the NHS. Ravulizumab is a new treatment developed by Alexion for generalised myasthenia gravis (gMG).

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On the 13th September, myaware attended the committee meeting to discuss Ravulizumab and the external assessment group report. Within this report the committee acknowledged the impact of gMG on patients and carers, and that there is evidence from clinical trials that suggest Ravulizumab in combination with standard treatment improves the symptoms of gMG. Despite this, concerns were raised regarding the target patient population for Ravulizumab treatment when being used as an add-on therapy for generalised myasthenia gravis. There was also uncertainty regarding the economic model used by Alexion and whether the cost effectiveness of Ravulizumab shows enough benefit to be an acceptable use of NHS resources.

With this draft guidance, NICE will hear from the company and patient groups to receive feedback on their response before a final decision is made. As myaware have said with the previous NICE appraisal for Efgartigimod, this isn’t a final decision, and it is very common that medications are initially not recommended by NICE at this early stage. There will be a second committee meeting where comments from Alexion and patient groups can be considered.

To help with this, myaware have put together a short survey to let members get their views across regarding the guidance published by NICE for both recent appraisals. Any feedback is greatly appreciated and will be shared with the committee in the hopes this decision will be overturned. We strongly support the right of those living with myasthenia to have access to new treatments to give them the best possible quality of life and want to ensure that NICE are aware of this need for directed therapeutics.

Read the full draft guidance for Ravulizumab from NICE.

Read about Ravulizumab and how it works on our website.