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What is the Likely Timeline for any Decisions about Access to Nuisnersen in England?

28 February 2018

From what we understand, NICE’s decision about whether it will recommend nusinersen for funding by the NHS is expected to be published on 21st November 2018.

Any referral from NICE to NHS England to investigate setting up an interim Managed Access Agreement (MAA) won’t be made until, at the earliest, after NICE’s first committee meeting (27th June) to consider all the evidence and submissions it has received.

At this stage it is impossible to say which Types of SMA and what ages might be included in such an agreement.

The work to investigate and set up an MAA is led by NHS England’s commercial and clinical teams. It involves discussions with SMA clinicians, patient groups and Biogen. This can take between 6 months – 2 years to finalise. 

As there has been a lot of groundwork done already with the setting up of the SMA Type 1 Expanded Access Programme and with Centres already delivering the treatment, it would be reasonable to hope that an MAA for nusinersen could be achieved within six months from the time NHS England started its work.

Time is key and it is crucial that nusinersen is not subjected to any delays during the NICE assessment process. Please help us push for the MAA to be implemented as soon as possible by writing to your MP and asking for their support. Find out more about how to do this here.