Today NICE held a closed-door meeting dedicated to discussing challenges with nusinersen appraisal. Clinical experts as well as TreatSMA, SMA Support UK and MD UK were invited to present their views.
The meeting gave everyone a possibility to share experience and present own view on access to SMA therapy in England and Wales. The participants discussed the best possible way forward given the challenges related, among others, to the existing clinical data and the Spinraza price.
As you would expect, we were present there (as were SMA Support UK and MD UK) and continued pushing for wide access to treatment, just like we have been doing since beginning.
We are grateful to NICE for this much-needed initiative and for making sure that the SMA Community is well represented during such important discussions.
Another news – we are now able to share our formal response to the NICE draft guidance – you can read the TreatSMA submission by clicking the button below.