Please invite your MP to the 25th February Parliamentary ‘drop in’ about access to nusinersen (Spinraza) for England, Wales and Northern Ireland

14 February 2019

We are reaching a critical stage in the NICE appraisal process for nusinersen. NICE will be holding its third committee meeting to discuss access on Wednesday 6th March.

Muscular Dystrophy UK and SMA UK have jointly arranged this event, being held on 25th February, which will be hosted by Mary Glindon MP. Parents and adults representing the SMA Community will be telling MPs about their experiences of living with SMA, and will be joined by clinicians to talk about the importance of access to nusinersen. They will be outlining the actions MPs can take to show their support and raise the matter further. As space is tight we regret that have had to limit who will be there from the SMA Community. 

It has been an extremely frustrating and lengthy process so far. Since the last NICE committee meeting back in October 2018 there have been no meaningful updates on the appraisal process. We have just been told that discussions are ongoing between NICE, NHS England and the pharmaceutical company, Biogen.

We know that time is of the essence and we need as many MPs as possible to raise their voices in support of the SMA Community.

Please contact your MP using this letter to ask them to attend the event and add any details you wish to about your / your child’s SMA / any previous correspondence you have had. You can find your MP’s contact details on the Parliament website.