Along with Deputies Lisa Chambers, Aylward and others, I have raised the issue of the plight of 25 children in this country who suffer from spinal muscular atrophy. We have met them and are aware of the challenging lives they lead. It does not have to be that way. A drug that could improve the lives of those people has been evaluated, but it has not been deemed appropriate to be made available for them in this country even though it is available in many European countries. The Minister of State at the Department of Health, Deputy Jim Daly, is in the House. I specifically asked if the evaluation process could be reviewed or an access programme put in place. These children are still waiting and it is unfair that they have received no response on what is happening. In many other European countries we would not be having this debate because they would now be on that treatment.

This is the fifth or sixth occasion on which Deputy Curran and I have raised this issue. We were told that a decision was imminent and the families would be contacted. However, they are still waiting for an answer as to whether the drug will be approved. Other countries in the European Union already provide this drug. These children are waiting. The drug is effective and it works. The families even say that if in time it is shown not to work for their child, they are happy to give that up; they just want the chance. It is extremely reasonable. The very least the Government can do is to respond and give them a decision.

I acknowledge the persistence of both Deputies and others who have continually raised and focused on this issue. I repeat what I have said every other time about the independent process and the tension that exists. Behind this is a company looking for a significant amount of money from the State to pay for that drug. That is not to take from the plight of the children affected by this. I undertake to obtain an update for both Deputies before the day is out. I think a meeting is due to be held on Tuesday, but I am not certain.