Gino Kenny (Dublin Mid West, People Before Profit Alliance) | Oireachtas source

Like all Deputies in this House, we received an email from an impassioned mother whose six year old daughter Maria lives with PKU. I had not heard of PKU until I read the email. Ireland has the highest rate of PKU in the world. As Deputy Deering said, the drug Kuvan has been approved by over 20 countries in Europe. This drug has been proven to be medically beneficial for those living with the condition. Sadly, Kuvan has been rejected twice by the NCPE in the past eight years. This has had a devastating effect on the PKU community. My question is fundamental to many things that happen in this House, to orphan drugs and to people who have rare conditions, not because of their choosing but because of circumstances. The NCPE has said twice that the drug is not to be approved. Obviously, the reason it has not been approved is because the NCPE thinks it is not cost-effective. Will the Minister override its decision and tell the manufacturer of this company to sit down and agree a price? It has been done previously with the cystic fibrosis community regarding the drug Orkambi, so I am asking the Minister to override the NCPE's decision because this drug can greatly benefit those suffering from PKU.

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