February 23, 2024

‘Life changing’ drug must be made available to families in Kilkenny: local TD

KILKENNY families of children who suffer from Spinal Muscular Atrophy (SMA) – a life-threatening and debilitating disease – have urged the health authorities to make a new “life-changing” drug available to them.

Local Fianna Fáil TD Bobby Aylward said parents in Kilkenny and across Ireland “have been waiting long enough” for a decision on whether or not the drug, called Spinraza, will be made available.

Deputy Aylward said in the Dáil yesterday: “There are parents in Kilkenny who consistently make representations to me on this issue. It is heart-breaking for them to know that there is a drug available, which could greatly improve their child’s life, but that due to its cost they cannot access it.

“The feeling of helplessness that they have felt, as this issue has been dragged out over months, is immeasurable. This process has been pushed down the road with many families suffering as a result.”

A Health Services Executive (HSE) management team is meeting next Thursday, February 14, when it is hoped a final decision will be made.

Spinraza is a medication used in treating spinal muscular atrophy, a rare neuromuscular disorder that causes progressive muscle weakness and loss of movement due to muscle wasting.

Deputy Aylward added: “There is significant evidence from countries across the world, and from clinical trials, that Spinraza is changing children’s lives significantly, slowing down muscle wastage and, in many cases, allowing muscle strengthening to occur which allows them to live a much more active, healthy life.”


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