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 England, both treatments have been funded via time limited Managed Access Agreements (MAA). The National Institute of Health and Care Excellence (NICE) is reviewing whether funding should continue.
SMA UK is taking part in this review advocating strongly for continuing access.
