There is someone the Tánaiste knows very well in the Public Gallery. She is the unstoppable and heroic Cara Darmody. Cara has just completed her third 50-hour protest outside the Dáil, calling for real action for children and young people waiting for an assessment of need. It is high time that the Government did the right thing, as Cara has asked for. In fact, the Tánaiste might take the opportunity to meet with her before she leaves Dublin. People in wheelchairs gathered outside Leinster House on Tuesday. They are people living with Friedreich's ataxia. This is a progressive degenerative neurological disease. They were here at the Dáil because they have been waiting two years for access to Skyclarys, a drug that can slow down the relentless progression of their condition. Their hopes were very high that the HSE drugs committee would finally approve Skyclarys, but those hopes were to be dashed. The committee decided against approving the drug. Instead, it referred it to a rare disease review group. In other words, one committee passing the buck to another committee. That means more delay and more time wasting - time that these people simply do not have because this condition does not slow down. It does not pause. It does not stop for the summer holidays or recess, it just gets worse. It robs people of their ability to stand, walk and swallow. It can rob them of their sight and their speech. When Friedreich's ataxia strikes a person's body, it invades every facet of them. Time just changes for a person. Time moves far more quickly, and time is running out from many of these people. This cruel condition moves relentlessly, ravaging their bodies and their lives, yet the system stands still, putting up obstacle after obstacle, forcing them to wait and wait as time slips by. This drug was approved by the EU Commission back in 2024. Two years on, it is available in France, Germany, Portugal, Italy, Spain and Czechia. It is available in Britain, Canada and the United States of America, but not here. The people who gathered on Tuesday outside Leinster House see people in other countries getting help while they are left to deteriorate. Emily Felix is one of these people. She is now 28. She has been living with Friedreich's ataxia since she was 12. She says the system is telling her that her life is not worth saving. Craig Coady from Cork lost 13-year old Rory to this condition last September. Now he watches as Paudie, his other son, aged 16, deteriorates with the same disease. He says Paudie does not have weeks to wait. He says, "I can't lose him [too]. He is all I have left." That is what is at stake here. This is urgent. Caithfidh an Rialtas an rud ceart a dhéanamh dóibh siúd a bhfuil Friedreich's ataxia orthu. Ní tráth moille é. Of course medications have to be properly assessed, but it has been going on for two years. Decisions have to be taken and time is running out. The Tánaiste can fix this. He can bring the pace and urgency that is necessary. The Taoiseach says he will not bring that. Right now, today, people living with Friedreich's ataxia are watching this exchange. They want the Tánaiste to intervene. They do not have weeks or months. They are now counting on him to do something to make this right. What is the Tánaiste going to do?
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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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Will the Tánaiste intervene?
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When they will know?
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In the meantime, these people are deteriorating in real time.
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I know what it is made up of.
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I am aware of that.
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