Dara Calleary (Mayo, Fianna Fail) | Oireachtas source

The issue was raised with the Taoiseach by Deputies Lisa Chambers and John Curran on Tuesday. Deputy Lisa Chambers just hosted a meeting to which every Member of the House was invited, and there are several hundred people outside the front gate of Leinster House, so the matter should be on the Tánaiste's radar. I do not have to give him notice of questions I ask. He says he wants the best drugs available on the market. We want that too, and that is why we supported the initiative. Why, however, are we the only country in the initiative where this drug is not being made available? Why do children living in Belgium, the Netherlands, Luxembourg, Austria or at least 20 other countries have the future that is being denied to these 25 Irish children? It just does not make any sense. Biogen has submitted a new proposal to the HSE, which, as I said, is delaying a proper analysis. There is no time for delay. Families see the life-changing possibilities of this drug. They are being denied these possibilities by a bureaucracy that does not understand what it is like, a bureaucracy that should go out to the front gate, talk to these children, talk to Grace, Cillian and Sam, see how strong they are and how determined they are to live their lives and put the bureaucracy aside and put these children first.

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