Manus Boyle (Fine Gael)

I thank the witnesses for coming in today. To be honest, this is totally new to me and makes hard listening. My fellow Senator who is not here today, Senator Teresa Costello, drew my attention to the situation with givinostat. On one of the first days I came here, Senator Costello had people in the audiovisual room where I met two lovely young fellas from Donegal from my own area. I learned that one brother gets givinostat across the Border while the other brother does not. I cannot understand the reason givinostat, which is something that was applied and went through all the mechanisms in England and cross-Border, cannot be fast-tracked here to help the other brother. Perhaps I look at things differently because I look at this from a personal point of view. That mother and father stores medication in their fridge for one of their boys but not for the other. To me, that situation is totally wrong. If a medication was approved in England a few years ago then why can we not fast-track it through here?

Givinostat has been mentioned a couple of times. When will givinostat be made available here? When can I say to the Langan family in Donegal that their second son can get givinostat? Will it be a month, two months or when? The current situation is soul destroying for families. I have met the family and understand how they feel. The child is getting worse. If I had the money myself I would buy the medication. People must consider the fact that families are personally affected by this situation. It has been proved that givinostat works for one of the siblings, so why is there a delay in rolling out provision? I seek a definitive answer as to when givinostat will be made available in Ireland.