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

I thank the Leas-Cheann Comhairle for the opportunity to raise this issue. Those living with phenylketonuria, PKU, have been engaged in a protracted campaign to get access to the drug, Kuvan. Over the past eight years, access to Kuvan has been assessed and rejected by the National Centre for Pharmacoeconomics, NCPE, on two occasions, namely, in 2009 and 2017. That process is questionable when it comes to orphan drug assessments. A review into all orphan drugs is under way and that should be welcomed by all parties in the House. Even though Kuvan is readily available in most European countries, it is not available for those living with PKU in Ireland. The drug has the potential to transform a person living with PKU. The irony, incredibly, is that the drug is made in Cork and that Ireland has the highest rate of PKU, a genetic condition, in the world. I understand a decision will be made on provision of the drug soon. Hopefully, the Minister of State will have good news and there will be a positive outcome for those living with PKU.

The issue of orphan drugs has been raised a few times since I became a Member. The people requiring them have rare diseases and they cannot access certain drugs. There is clinical evidence but there is also the issue of a price being put on these conditions and on people's lives. The Minister of State will probably agree that is completely unacceptable in society. Hopefully, he will have good news and those living with PKU will get the good news this week to the effect that they can access this drug.

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