6 March 2019 - A drug appraisal committee of Britain’s NICE met in Manchester, England, for the third and final time March 6 to decide whether to recommend Spinraza (nusinersen) for the treatment of spinal muscular atrophy.
Several hundred demonstrators organised by the nonprofit group TreatSMA staged a protest on the steps of NICE’s headquarters before the meeting.
The meeting follows a draft recommendation issued last September against adding Spinraza to the subsidised public health system of England and Wales because of its “extremely high cost.” At that time, the committee had concluded that, based on its list price, Spinraza’s annual cost-effectiveness ranged between £400,000 and £600,000 (about $524,000 to $786,000) per QALY gained, making it too expensive for it to be considered a cost-effective use of resources by the National Health Service.