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

The Minister of State's response rehashes much of what the Minister, Deputy Harris, put in his letter to me just a few short weeks ago. There is absolutely no question as to the clinical effectiveness of Spinraza. This is a proven medicine and one that has been granted market authorisation by the European Medicines Agency. It is outrageous that we are going through a process that is independent of an exercise that happened to have commenced before we became members of the BeNeLuxA initiative, and that we are not actively and proactively pursuing access to that arrangement. In the reply the Minister of State has just put on the record of the House there is no answer to my question as to whether Ireland can be added to the BeNeLuxA agreement for Spinraza, and if not, why not? Is the door closed to us for some reason?

What are the terms and conditions of our becoming a member of the BeNeLuxA initiative? Were we not to be a beneficiary state, lining ourselves up with those countries for more affordable access to expensive medication? That is why we joined in the first place, and this is an ideal test of the effectiveness of the decision and the arrangement in place.

Despite the talk of decisions to be notified and processes that are under way, this all comes down to pounds and pence or euro and cent. Children's lives are ticking away as we speak. The Minister of State is quite right. He has met one of those families, as he indicates. He has seen, as I have seen, the huge worry and the strain in the eyes of all those parents. Those beautiful children deserve a better response than the "We will see" answer that the Minister of State offered again today. I urge him to use his position at the Cabinet table, special member of same that he is, to press for this immediately.

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