Advocacy for Access to Treatments
Advocacy for Access to Treatments
We have been advocating for access to treatments in the UK since autumn 2016. This continues to be a high priority. It includes advocacy for access to newborn screening for SMA to enable the earliest possible access to disease-modifying treatments.
Advocacy for access to Nusinersen and Risdiplam in 2024
Both treatments have been funded via time limited Managed Access Agreements (MAA) which come to an end in July 2025. When two or more treatments are used for the same condition, NICE reviews them at the same time. They set up a Multiple Technology Appraisal (MTA) and have done this for these two treatments.
SMA UK is taking part in this review advocating strongly for continuing access.
