Tommy Broughan (Dublin Bay North, Independent) | Oireachtas source

I welcome the comments on the quality-of-life criteria for all rare diseases. The National Centre for Pharmacoeconomics report seems to make it clear that on clinical grounds there is a positive approach. As the Minister has said, it seems to come down to the economics and the difficulty of measuring costings for a very small cohort.

Like the Minister, I am very familiar with this disease and with the needs of families with experience of PKU - my family is one of those concerned. From listening to the PKU Association of Ireland and the various families involved, the Minister will know of the ongoing struggle of trying to live on a low-protein diet. It is a very small cohort. One in 4,500 babies is born with PKU in Ireland with about 20 referrals to the National Centre for Inherited Metabolic Disorders at Temple Street every year. Most Deputies will have received very valuable information from the PKU Association of Ireland.

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