Help us keep the pressure on for access to treatments for SMA adults!

Dear friends

Can you please help us keep the pressure on until adults with spinal muscular atrophy (SMA) get equal access to the treatments they need? We urge you to contact your local TDs and senators, expressing the need for their continued support until this injustice is rectified. Time matters. Every week that passes without action is a week in which individuals continue to experience serious progression of this condition.

You can simply click here to use the letter template and select your constituency.

Campaign update

Thanks to emails from constituents like you all over Ireland, a wide range of TDs and senators, alongside Department of Health officials and industry representatives, attended a compelling briefing organised by Muscular Dystrophy Ireland and SMA Ireland in the Audio-Visual Room at Leinster House on 27 May. They heard directly from experts and those affected by the current age-based exclusion from life-changing SMA treatments. 

Many representatives have since raised Parliamentary Questions or pledged to follow up with the Minister for Health or the HSE. These actions are deeply appreciated; however, our work is not yet done. At present, approximately 20 adults are still excluded from access to approved SMA treatments solely because they were over 18 at the time of the original HSE approval. This is not only unjust – it is out of step with the principle of equal access to care.

Please join us in asking your local TDs and senators to keep this matter on the political agenda until all individuals with SMA are treated equally under the healthcare system.

Click here to use the letter template and select your constituency.

You can find out more about the campaign here www.mdi.ie/smatreatmentsforall.

Thank you for taking the time to take part in this campaign!