NICE have announced they are going to review the MAA Guidance for Spinraza in regards to Type 3 patients.
NICE has confirmed today that they have started reviewing data on the benefits of Spinraza for type 3 patients who can not walk. They expect the make their final recommendations in April 2021.
The full NICE announcement can be read here.
Biogen, patient groups, clinicians, SMA REACH UK, NHSE and NHS Improvements will be involved in the review. The review of the data will look to assess whether new evidence has become available in order to support changing the MAA. As a patient group, we will ensure to community’s voice is heard too.
NICE have also announced that in the interim, they will suspend the criteria for paediatric patients to regain ambulation (ability to walk) within 12 months or treatment is stopped. You can read more on the interim arrangements here; Nusinersen Managed Access Agreement (for treating 5q spinal muscular atrophy)
TreatSMA welcome this news, and we will do all we can to fight for the type 3 community.