Response from NICE to the SMA Community re: NICE's Communications About Access to Nusinersen
We have received this reply in response to the letter sent by SMA UK, MDUK and TreatSMA on 14th June 2019.
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NICE / NHS England announce changes to the nusinersen Managed Access Agreement
The MAA for nusinersen (Spinraza) will now include paediatric patients who have recently (in the previous 12 months) lost the ability to walk independently. It also commits to considering any significant evidence being made available by Biogen in relation to all with SMA Type 3 who are non-ambulant, that may impact on the eligibility criteria of the MAA. These are just two changes following many confidential discussions which we have been unable to report on until now.
Read full storyGuide to the 2017 International Standards Of Care For SMA Launched Today
The SoC is now available via the TREAT-NMD website. It describes what assessments and interventions families and adults should expect to find in any neuromuscular centre anywhere.
Read full storyYour Views on the Possible Provision of Zolgensma by NHS England, for Infants who have SMA Type 1
Patient groups would like to find out what you think about this new treatment so that we can include your views in our submissions to the National Institute for Health and Care Excellence (NICE). Our survey closes on 21st July 2019.
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