Standards of Care
22 June 2022
The 2017 International Standards of Care, though still valuable, need updating. Work has started internationally looking at some of the key areas.
SMA Europe’s OdySMA project is looking at access to medicines across Europe and is working hard to shed light on access hurdles, identifying advocacy and policy-shaping initiatives to overcome them. We are talking to UK clinicians to see if we can support, and be part of any initiative to work on, care standards for the UK. It’s very early days and the journey will be a long one, but we will keep you posted whenever we have any updates to report.
A Personal View
Portia Thorman reflects on the changes in the landscape of SMA since her son had his first dose of Spinraza 5 years ago. She thinks about how treatments have effected changes in care and maintenance, how her role as Advocacy Lead at SMA UK has changed her perceptions, and what the next steps might be in updating the standards of care for SMA.