Important Milestone for Risdiplam Access for Adults with SMA in Ireland

MDI is delighted to share an important update in our campaign for equal access to treatments for adults living with spinal muscular atrophy (SMA). 

Risdiplam (also known as Evrysdi) received a positive recommendation for reimbursement from the HSE Drugs Group for adults aged 18 years and older with a clinical diagnosis of SMA Type 2 or Type 3, or with one to four SMN2 copies.  

Following a review by the HSE Senior Leadership Team, a Managed Access Protocol (MAP) has now been commissioned. The MAP will outline the specific medical criteria that individuals must meet to be eligible for treatment. 

This is a significant achievement following the joint campaign efforts of MDI and SMA Ireland. 

We want to sincerely thank everyone who supported our campaign, especially adults living with SMA who had the courage to share their stories and experiences. Their voices helped highlight the unequal access to treatment for adults with SMA in Ireland and, importantly, brought attention to the real-life impact this inequality has had on individuals and their families. 

We are also incredibly grateful to everyone who got behind the campaign in so many different ways - by sharing our posts on social media, writing to your TDs and senators, helping to raise awareness, and supporting our wider campaign efforts.

We would also like to acknowledge the invaluable support of the clinicians and healthcare professionals, public representatives, and organisations across the neurological, rare disease and disability communities, both nationally and internationally, who supported and endorsed our campaign. Your support helped strengthen the collective call for equal access to treatment for adults living with SMA in Ireland. 

Finally, we want to sincerely thank SMA Ireland, whose close collaboration with MDI, determination and continued advocacy have been central to our joint campaign and to achieving this important milestone. 

MDI will continue to follow developments closely and keep our community updated on the next steps. 

If you have questions about what this update may mean for you, we encourage you to speak with your treating clinician.