Violet-Anne Wynne (Clare, Independent) | Oireachtas source

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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