Spinraza demostrated as incredibly effective in types 2 and 3 SMA
We are asking the SMA community, friends and family to wear in public on the 7th May a plain t-shirt or top with a personal message to NHS England and NICE telling them we will not wait any longer.
NICE has not yet been able to recommend Spinraza, and an urgent Committee meeting has been called.
An Expanded Access Programme of Spinraza starts in Russia today.
NICE emailed us that they are not able to update us yet.
Today France authorised wide reimbursement of Spinraza. Everyone with SMA in the country will now have access to treatment.
So I guess our silence is fairly obvious. We have heard nothing from NICE, not a single word.
AVXS-101 shows amazing effects in treating spinal muscular atrophy.