Letter Written By Clinicians Highlights Frustrations Around Spinraza Access

04 March 2019

An open letter calling for NICE to approve Spinraza has been signed by thirty clinicians involved in the care of both children and adults who have SMA.

The letter, which has been published in The Guardian ahead of NICE’s third committee meeting this Wed 6th March, highlights the clinicians’ frustrations at Spinraza not being made available on the NHS in England, Wales and Northern Ireland.

Doug Henderson, Managing Director of SMA UK, writes:

“We want access in England, Wales and Northern Ireland - NICE is key to this. We want NICE to recommend nusinersen for all with SMA Type 1, 2 or 3 as a matter of urgency. We also want to see a future alignment of the NICE appraisal system with the new Scottish ‘ultra-orphan pathway’ which is so much better suited to medicines for rare conditions.”

Read the letter in The Guardian