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Page last checked: 30th November 2022
Last updated: 4th May 2021


Our Advocacy and Access Diary

February 2020: SMA UK conducted a first survey via the SMA REACH clinical network for parent(s) / guardian(s) of any child / young person age 19 years and under who has SMA Type 3 and had been accepted for nusinersen treatment. We wanted to give parents and children the opportunity to report on outcomes they were seeing with treatment and find out what impact the stopping criteria, that applied to children who lost their walking ability after 28th July 2018, was having on parents and children.

We conducted follow-up surveys with respondents every 3 months, collated results and made these available to these children’s clinicians, NICE, NHS England and Biogen. We continued to do this and to advocate for the removal of the stopping criteria. We were able to submit the reports from two families affected by the stopping criteria as part of our submission to the NICE evidence review.