Cathal Crowe (Clare, Fianna Fail) | Oireachtas source

It is devastating. I know Mr. Flanagan is doing his best. I spoke to one dad whose son has this and misses out by a number of months. That boy watched his cousin die during Covid from cystic fibrosis complications. It is a life and death matter. I do not wish to overstate that.

The date, 1 January, is the cut-off date for kids qualifying for age categories in the GAA. That is the age cut-off most kids home in on. Most 11- and 12-year-olds think about whether they are playing under-13s or under-14s hurling next year. I do not wish to trivialise it but weeks and days are qualifying or disqualifying these kids for a life-saving drug. It is so important to state and restate that.

I turn to the economics of it. This is not directed at the witnesses, but the HSE and all Government institutions operate as silos, in a way. This will be examined through an economic lens but other arms of the public health service would see this in a different light. I had cause yesterday to be in the Children's Ark ward of University Hospital Limerick, where children are currently hospitalised due to CF complications. The economics determine a drug becoming publicly available in the Irish market with Government backing and funding, but on the other end of that spectrum are kids on drips and laid up in hospital beds when they should be enjoying the last week or two of the school year.

I thank the witnesses for what they are doing. I know they cannot go into further detail. We will hopefully come back to it as a committee.