Update re Nusinersen MAA

20 June 2019

We are so sorry to hear of the continued heightened distress in the SMA Community caused by NICE's / NHS England’s decisions and communications to date.

We are doing all we can to obtain a reply to the letter sent by clinicians and the patient groups on 14th June. This was sent following consultation, advice and a joint decision that this step was the most promising way to obtain a change to the MAA.

We have been advised by NICE that when they consider further communication about the MAA, they will also consider the patient groups’ comments in their letter (dated 14th June).

We respect the decision of each person and organisation as to what further action is right for them to take at this time, knowing that not one person believes that the position the Community finds itself in is acceptable or just. 

We understand an appeal has been submitted - you can read NICE's guide to the technology appraisal and highly specialised technologies appeal process for further information about how an appeal is considered.

We will publish further updates as soon as we have them. In the meantime, if anyone in the Community would find it helpful to talk any of the above through, please feel able to contact us at the office.