NICE Publishes Final Guidance Following Its Appraisal Of Nusinersen

24 July 2019

As there have been no appeals, access to the treatment will be as outlined in the Managed Access Agreement (MAA) released on 3rd July. You can see the final documents NICE has released here or you may wish to go straight to their 'Information For The Public' tab.

You may also find our summary of some key aspects of the Managed Access Agreement helpful. You can read this here.

NHS England is now working with clinicians, Biogen, and patient groups on the detail of rolling out the agreement. We expect more information to be released in the next few weeks.

No one has forgotten the people who don't have access - in particular children with SMA Type 3 who have been non-ambulant for more than 12 months, and adults who have SMA Type 3 and are non-ambulant. We will be working to further raise the profile of those affected by this via the MAA mechanisms available to us. This includes clinicians working on producing and publishing evidence based on their real-world experience of delivering nusinersen. Vitally, the onus is on Biogen to collate global evidence that will convince the MAA oversight committee to widen access. We will continue to do all we can to maintain pressure on them to do so, being active advocates as signatories to this MAA.