Keith Swanick (Fianna Fail) | Oireachtas source

This is nothing personal but I am disappointed with the Minister of State's answer, which is pretty generic. What will the rare disease committee review? The information is exactly the same as that already received by the NCPE. The dossier is exactly the same, as are the patients and the medical evidence. That is not an adequate answer for people such as Grace and her parents. I have put four or five questions to the Minister of State and have listed them on a piece of paper that I will give to him because I sought specific answers to them. Why is this process being delayed? Why have the families heard nothing? When will a decision be made? Will the families be engaged with in this process because currently there is no engagement. I remind the Minister of State that a petition has been signed by more than 40,000 people. This may be an orphan drug, used in rare conditions by a small number of people in this country, but there is a far greater movement of people behind them who understand that price should never be an issue when it comes to children's lives.

Why has the process has been delayed? Why are the families hearing nothing about it and will they be engaged with? I remind the Minister of State that this drug is being reimbursed in countries such as Romania, Slovenia, Slovakia, Cyprus, Lithuania and Croatia. It is time we showed some respect to this cohort of patients and reimburse this drug as a priority.