Ceisteanna ó Cheannairí - Leaders' Questions
Dail Éireann — 2026-07-16
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Mary Lou McDonald (SF), Dublin Central

So we are clear, it is not that all of this is frustrating for those living with Friedreich's ataxia; it is actually terrifying for them. I met Emily three or four weeks ago and I was speaking to her again on Tuesday. Even in that short time span, she told me that her swallow and speech had disimproved. We are on the clock here. Time is of the essence. Of course the science is important. We have to lead with clinicians and science, but it has been two years since this was cleared by the European Commission. This therefore is a process not so much guided by science as stalled and delayed by bureaucracy and indecision. I am appealing to the Tánaiste. I never take Leaders' Questions on a Thursday. I never have. I am standing before him for one sole reason. I am terrified for these people. I do not think it is acceptable that we would rise for our summer recess and leave terrified people. In Emily's case she is 28. In another case, Oisín is 27. Paudie is 16. They are terrified. They want their clinicians to have access to this drug.
It can levitate their deterioration in some cases by as much as 50%. I am appealing to the Tánaiste. I am actually begging him to intervene and to do it now. I ask him not to stall or not to delay because these young people, others and their families are now relying on you, Simon Harris, to do the right thing.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-07-16/debate/main
Retrieved: 2026-08-27T06:52:17+00:00
Sitting date: 2026-07-16