World health organisation WHO, maintains a Model Lists of Essential Medicines which serve as a guide for the development and updating of national and institutional essential medicine lists to support the procurement and supply of medicines in the public sector, medicines reimbursement schemes, medicine donations, and local medicine production. A special committee meets every two years to update this list with medicines that are recognised as essential.

This year Risdiplam will be considered for the list and a detailed proposal has been submitted (full proposal can be read here https://cdn.who.int/media/docs/default-source/essential-medicines/2023-eml-expert-committee/applications-for-addition-of-new-medicines/a40_risdiplam.pdf?sfvrsn=16d9d918_2).

TreatSMA with 20 other patient organisations across the world co-signed a letter in full support of adding Risdiplam to the list of essential medicines. (Full letter is available here: https://cdn.who.int/media/docs/default-source/essential-medicines/2023-eml-expert-committee/public-comments/a40_risdiplam_sma-assocs.pdf?sfvrsn=69ffde63_1)

It is amazing to see how in landscape in treatment for SMA has changed and continues to evolve! We hope that the outcome of the next committee meeting held on 24-28th of April will be positive for people with SMA globally.