An tOrd Gnó - Order of Business
Dail Éireann — 2026-09-16
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Michael Collins (II), Cork South-West

I have raised the issue of Friedreich's ataxia sufferers with the Taoiseach on numerous occasions in this Chamber for well over a year. There is a need to approve the drug Skyclarys for people like Emily Felix, Paudie Coady and Emma O'Shea - the latter of whom the Taoiseach visited when he was in west Cork. She has asked me to convey her thanks to the Taoiseach for doing this. The huge fight these sufferers have had to go through to have the drug Skyclarys approved by the State leaves many unanswered questions on how the rare drugs review group works in Ireland but, more alarmingly, Skyclarys has been cleared to be rolled by the State 23 days ago. To this day, no Friedreich's ataxia sufferer has been contacted by the HSE or otherwise as to when or how the drug is to be administered. Twenty-three days of these people's lives is like five years. In God's earthly name, is it not time to bring this suffering at an end? Will the HSE announce immediately a clear timeline for all 199 patients to be contacted with timelines for the roll-out of a life-changing drug for them? Can the Taoiseach tell us today when this will happen?

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-09-16/debate/main
Retrieved: 2026-09-28T05:50:48+00:00
Sitting date: 2026-09-16