Bobby Aylward (Carlow-Kilkenny, Fianna Fail) | Oireachtas source

It is with regret, disappointment and sadness that I must again raise the issue of Spinraza. Twenty-five children have been identified as suffering from spinal muscular atrophy, SMA. We fought a hard fight here and four months ago the HSE approved the provision of Spinraza for those children. When I went back to Kilkenny, I informed a family there that the drug was approved by the HSE following lobbying by this House and I saw the delight on the faces of the parents and grandparents. Four months on, not one thing has been done for the children. Twenty-five children are waiting for Spinraza to improve their quality of life, yet nothing has been done. What is wrong with the system? What is wrong with the HSE? The drug has been approved and was due to be handed out. That was the expectation of 25 families in this country but they have been left high and dry. They are waiting for an improvement in the quality of life of their children. Something must be done about this immediately.

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