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

The cost outlined in the report for 100% uptake is relatively tiny in the health budget at €12.7 million over five years or €2.5 million a year. The European PKU society which has strongly supported the PKU Association of Ireland has made the basic point that the EU regulatory agencies approved the drug in 2009 for use in 20 European countries at the time. A range of our European partners, including France, Austria, Germany, Bulgaria and Romania as well as the US have access for parents of children with PKU. Given that there is a genetic aspect to our community, it is extraordinary that Ireland is the one country where this medicine is not available. It is potentially life changing for those 800 individuals and their families. I know the Minister is sympathetic. Many of the advocates for rare diseases have forward their cases to him and I have supported those also. In this instance it should be approved.

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