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Biogen Announces EAP for Nusinersen Will Not Extend More Widely Than SMA Type 1

13 April 2017

Biogen have set out their reasoning for this decision here.

We understand many families will be bitterly disappointed by the news that Biogen’s Expanded Access Programme will not be extended more widely than for eligible individuals with infant-onset SMA (most likely to develop SMA Type 1). 

We continue to hope that the European Medicines Agency (EMA) will soon announce a positive licensing decision for nusinersen. This would allow the treatment to be assessed by NICE (the National Insitute for Health and Care Excellence) for potential provision by the NHS. 

We understand that access to nusinersen continues to cause intense frustration and anxiety. We will continue to do all we can to make the authorities that control access fully aware of the urgent needs of all families with children affected by SMA who want this treatment.