There is an urgent need for SMA Europe and its members to understand and demonstrate how fragmented access to SMA treatment and care is.
Our EUPESMA survey¹ showed unequal treatment access across different age groups, SMA types and mobility levels, with the trends between access and either type or mobility severity level lacking in alignment. As access to medicines, treatment and care has differed substantially across multiple patient subgroups at national level, as well as across European countries, SMA Europe members have increasingly requested support to better understand the European situation, access hurdles and identify advocacy and policy shaping initiatives to overcome them, and where access is granted, to ensure continuity into the future.
To that end, we strive to set up a comparative, systematic and ongoing access data collection, including its translation into actionable steps, in order to address access challenges and ensure that no subgroup is left untreated. This initiative, or access atlas, is called OdySMA, which is kindly supported by Biogen, Novartis Gene Therapies and Roche. Its objectives are threefold:
This map represents the access to Zolgensma as of 22nd November 2021
Understanding scientific and clinical developments
Navigating health information and services
Where science meets humanity
Understanding the MFM & the SMAIS in the Context of Outcome Measurements in SMA