John Curran (Dublin Mid West, Fianna Fail) | Oireachtas source

Sam and Glen are two boys who live in my constituency. Both of them suffer from spinal muscular atrophy. It is heartbreaking to see because their condition is deteriorating and there is a drug, Spinraza, which would assist them. The Taoiseach said earlier that a decision on this had been due and that urgent priority had been given to the matter. These families were living in that hope at Christmas when exactly the same words were spoken about the matter being given urgent priority, an assessment being under way and so forth. Almost six months later, the issue has not been resolved. I have raised this with the Minister before, and the Taoiseach has responded to similar questioning. He specifically said he was acting in accordance with the legislation, namely, the Health (Pricing and Supply of Medical Goods) Act. If this legislation is impeding us in dealing with this matter, we need to amend and change it. It is not tolerable or fair that the only country in Europe in which these children cannot receive this medication is Ireland. We will work with the Minister to change the legislation but these families are holding on week by week, meeting by meeting. As I said, at Christmas there was a real expectation that this would be dealt with, and that has not occurred. I therefore appeal to the Minister, if he must work within the legislation and if the legislation is the obstacle, to change it.

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