Nicole Ryan (Sinn Fein)

It has been quite interesting listening to the debate this morning. I do not think anybody chooses to have a rare disease. When we hear people come in like the SMA group who are baring their souls in the AV room, who are crying, they are looking for something that will improve the quality of their life. It is not going to save their lives. The officials are here saying the case was not made for adults, therefore they did not do it for adults. What people who are living with these rare diseases are hearing is a question about whether their lives are worth value for money. How do we put a value on somebody's life? It is really infuriating to hear this. People are hearing a question about whether their life is even worth it. They are wondering how much their life is worth that they cannot get this medicine for themselves.

In Professor Barry's opening statement, he said that 70% of the orphan drugs reviewed this year were recommended for reimbursement despite failing the €45,000 QALY threshold. What factors are being used to justify those positive recommendations?