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Dáil
‹ An tOrd Gnó - Order of Business

Risdiplam for SMA patients

Summary

Violet-Anne Wynne called for access to risdiplam for adults with spinal muscular atrophy, saying the age cut-off was arbitrary. The Taoiseach said he would discuss the matter with the Health Minister.

I wish to raise the issue of access to risdiplam for adult spinal muscular atrophy, SMA patients. Risdiplam is a lifesaving drug that stops the progression of SMA. It reduces required hospital time, restores motor neuron function, gives back strength and breath control and gives people back a full life. We approved the equivalent Spinraza two years ago, two years after the rest of the EU, and we are still behind the curve with our arbitrary cut-off for over-18s which is not based on clinical reasoning. There are currently 30 adults in Ireland with SMA who missed the cut-off, five of whom received one of these drugs on compassionate grounds. That leaves 25 without access. Ten to 15 would qualify on the basis of their current health status. Right now, they are taking up resources in ICUs and long-term stay wards. This would be entirely unnecessary if the Government was prepared to support citizens with rare diseases. Is there is any plan to move to a health-based cut-off? Why is the Government restricting lifesaving treatment on arbitrary grounds?

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Simon Harris The Taoiseach Fine Gael

I thank Deputy Wynne for raising this issue, which I will talk to the Minister for Health about. I remember the Spinraza issue, so I want to get myself up to date on this. I will ask the Minister for Health to come back to the Deputy directly on what I know is an important matter.

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