Latest NICE update on Spinraza

Published Date
Jonathan Kingsley

Almost eight weeks since the third NICE committee meeting NICE has released a statement that the discussions between NHS England and Biogen will be discussed at another committee meeting next week on Wednesday 8 May.


NICE’s statement reads:

Following the meeting on 6 March 2019, the appraisal committee asked NHS England and Biogen to enter into commercial discussions to see whether a managed access arrangement could be agreed for nusinersen consistent with NICE’s framework for determining cost effectiveness. The outcome of these discussions and the consequences for guidance development for this topic will be considered by the committee on Wednesday 8 May. Given the nature of the discussion, this will be held in private.

We understand that the ongoing delays to the appraisal process for Spinraza are extremely frustrating for families, and we will continue to work with SMA UK and Treat SMA to press NICE, NHS England and Biogen to reach a solution.

Rob Burley, Director of Campaigns, Care and Support at Muscular Dystrophy UK, said:

Families are crying out for Spinraza, and continued delays are causing them anguish. Twenty-four European countries, including Scotland, now provide this life-changing treatment, but England, Wales and Northern Ireland are lagging behind.

We will be writing to NICE, NHS England and Biogen to make it clear that urgent action is needed and that all parties need to show flexibility so that a positive decision can be reached.

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