Today we the SMA Community are protesting against health policies that threaten to deprive our children and ourselves of Spinraza, the only effective treatment for SMA.
On Friday 7th September TreatSMA and the community will stand alongside each other and hold a protest against the proposed decision to not recommend the life-saving drug Spinraza for treating children and adults.
Biogen has informed us that the Nusinersen Expanded Access Programme will close for new patients on 1 November 2018, even as those currently in the programme will continue without changes.
Leading UK physicians and SMA advocacy groups have sent a strongly worded letter to Sir David Haslam, Chair of the National Institute of Health and Care Excellence (NICE), objecting to the proposed negative recommendation on nusinersen therapy.
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In the draft guidance issued today, the National Institute of Health and Care Excellence (NICE) decided NOT to recommend the use of nusinersen (Spinraza®) as an NHS treatment for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.