Simon Harris (Wicklow, Fine Gael) | Oireachtas source

I agree with pretty much everything the Deputy has said. While the PKU Association of Ireland is absolutely campaigning, as would any of us, for their loved ones to have access to this drug, it is also making the broader point about the need to review the equality in the assessment process for rare diseases. I assure the House that process is under way with a new working group of the NCPE.

As I did in my original answer, I assure people, who are wondering about the availability of Kuvan, that this process has not ended. The HSE has informed me that commercial negotiations are ongoing and it is also considering information it has received from patient groups, presumably including the PKU Association of Ireland.

When it comes to drug negotiations pressure is rightly put on me and on the HSE. It is important in a negotiation that companies also negotiate in the interests of patients in terms of a fair price for this country.

As the Deputy probably knows better than I do, PKU is an extraordinarily challenging condition. We have recently expanded the list of products available to PKU patients through our pharmacy and we need to do more in that regard. I will keep the Deputy informed on the process.

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