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

The Minister of State and I go back a long way but this is an appalling answer; it really and truly is. I know he is delivering it for the Minister for Health and that it is not his role, but this is absolutely shocking. These parents had the realistic expectation that within a number of months of having the drug approved, their children would be in receipt of it. This is a degenerative condition. Each child today is in a poorer condition than they were last summer. This drug should have been administered by now. The Minister of State set out the two scenarios for the two types and he indicated for category 1 that it required access to a day ward. Surely to God in this country, in this day and age, we can have access to a day ward to administer this drug to these children.

Even the more complex cases should have been dealt with by now. I note that the Minister of State has made a strong point of saying that three children were treated on 7 November. I wonder if we had not brought to the floor of this House back in October that no child to October had received the treatment, would any children be receiving it now. We are not satisfied with this answer.

The Minister of State can tell the Minister that Members of this House and colleagues will continue to raise this issue until we get a straight answer. What we want to know, without talking about the complexity of the case because this was all known back in June, is when will all of those children receive their initial doses of this drug, Spinraza. Are there other issues going on behind the scenes that we are not aware of? Is the budget in place or is the Department trying to defer it until next year? Honest to God, the families and the children, in particular, are aware that their condition is deteriorating. We have to do better for their expectations and hopes. I hope that the Minister of State's supplementary answer is more positive, detailed and specific because we will bring this issue back to the House.

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