On Monday, we sent in our Patient Group submission to the Scottish Medicines Consortium (SMC) as part of their assessment of spinal muscular atrophy (SMA) treatment Spinraza. We would like to thank all the individuals and families who sent us patient testimonies as part of the submission.
Spinraza has been developed by pharmaceutical company Biogen and is the first and only treatment for people with SMA. It was approved by the European Medicines Agency in June 2017. Over the forthcoming months the SMC will be considering the case for approving the treatment for SMA Types 1, 2 and 3 in Scotland. Muscular Dystrophy UK will continue to work with SMA Support UK and the SMA Trust to make sure that the voices of people affected by SMA are heard as part of this process.
Meanwhile in England we are waiting for more detail about the possible Managed Access Agreement for Spinraza. Muscular Dystrophy UK is working with other SMA charities in urging NICE, NHS England and Biogen to implement the scheme as quickly as possible so that more people are able to benefit from the treatment. We are also calling for a review of NICE’s current appraisal structures to prevent avoidable delays for future treatments.
For more information please contact our campaigns team: campaigns@musculardystrophyuk.org