Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein) | Oireachtas source

I note that neither the Minister nor the Minister of State who often outlines the position on nusinersen, or Spinraza, is here. I ask that the Taoiseach update the House today, given - and, I hope, accepting - that families are going through a very prolonged torment regarding this matter. I ask that he do so not only for the 25 children, but also for the 50 adult survivors across the State, who should have the opportunity to explore the application and relevance of this drug to their condition, namely, spinal muscular atrophy. Not all of them will benefit but a great number likely will, and they are entitled to that chance. I appeal to the Taoiseach to let us know what was the HSE leadership team's decision last Thursday and what will happen next.

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