In response to our queries Biogen has now sent us their take on the draft NICE guidance. Please read their Community Update below.
In the draft guidance issued today, the National Institute of Health and Care Excellence (NICE) decided NOT to recommend the use of nusinersen (Spinraza®) as an NHS treatment for spinal muscular atrophy in England and Wales.
Uruguay has approved Spinraza as a treatment for SMA.
It's August and its SMA Awareness Month. Please take time to view and share our video. Lets TreatSMA in all its forms, and lets get more treatments as soon as we can to help all.
The European label of Spinraza will soon list a new potential side effect: hydrocephalus. We don’t yet know whether this severe condition, which was experienced by only five patients treated with Spinraza, is at all linked to nusinersen, the active ingredient of Spinraza. In response to the Community’s queries Biogen has provided the following update:
The health authorities in Belgium and the Netherlands have announced that Spinraza treatment will be made available in both countries this summer.