Imagine being the father of two boys who have Friedreich's ataxia and one of them passing away. I know the Tánaiste is familiar with the case of Craig Coady. I normally do not personalise stories in here but he spoke about this quite openly on Red FM in Cork on Tuesday. He went home that evening and his son asked him if they had got the drug. Imagine telling your son that unfortunately the answer was "Not yet", only for him to turn around and say "Dad, it's okay if we don't get the drug because at least if I die I'll meet Rory". It is extremely upsetting for many people and, as I said, I do not normally personalise things, but this has been referred to a rare diseases technology review committee which is due to meet in the next few weeks. I am pleading for that to be done as expeditiously as possible. I am not asking anybody to comment on the process itself as I know we have to respect it, but is it possible that the review committee can be brought forward and convened as quickly as possible to see this through one way or another because of the mental trauma, anguish and emotion? Many people travelled up on Tuesday. One girl made a ten-hour round trip from Bantry in hope and expectation. Unfortunately, we have created these campaigns because the system is broken. The Tánaiste said that himself back in 2017. It is going to be Groundhog Day. I have hope that with the review the Minister has commenced this will become a relic of the past. I sincerely hope so. In the here and now I am begging for that review committee to be brought forward as urgently as possible.

Sentiment score: -0.05