Sixteen-year-old Paudie Coady from Cork is living with Friedrich's ataxia, a rare and degenerative neurological condition. Last year, his younger brother, Rory, died from the same disease. Paudie's mother is also living with advanced Huntington's disease. Paudie's father, Craig, has said that he is in a race against time to secure access to Skyclarys, the first treatment shown to slow progression of this devastating illness. He has rightly stated that if there is a price tag on every child in this country, it is a sorry country to be in. The National Centre for Pharmacoeconomics said in December that it would not recommend that the HSE provided it because it was poor value for money and it was unsure, based on the available clinical evidence, of the meaningful improvements it could have. Families facing rare diseases cannot afford bureaucratic delays while conditions continue to progress. Will the Government commit to expediting the decision-making process on Skyclarys? Can the Minister give a clear timeline on when patients like Paudie will finally have access to this life-changing treatment?

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