NICE Announces Guidance on Nusinersen will be Published on 26th June

15 May 2019

NICE have now announced that their guidance on access to nusinersen will be published on 26th June - see announcement here. This means that until then Biogen will fund currently untreated infants with SMA Type 1 via a “bridging solution”. Access will be subject to the programme start criteria – including, most importantly, patients must not be permanently ventilated and there must be full consultation between the family and the treating clinician. All patients already on the EAP will continue to have access to treatment. 

After June 26th, those with SMA Types 2 and 3 will start to get access. This will be subject to the Managed Access Agreement (MAA) starting criteria which we understand will be included in the published guidance and as soon as services are able to cope with the patient load. We imagine this will depend on individual hospital resources and capacity. Clinicians will be doing all they can to make this happen but we are aware this is a huge additional workload and there will be a need for further understanding and patience during this time. We will keep you posted as soon as we hear more.