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

The Minister is very familiar with the rare genetic disease phenylketonuria where patients have difficulty processing the amino acid phenylalanine and therefore must live on very restricted, low-protein diet. We have had the report of the NCPE, which the HSE was considering. We have had two recommendations against sapropterin dihydrochloride, Kuvan, in the past nine years. A meeting was scheduled with the relevant drug company before Storm Ophelia occurred. Has a meeting happened and has information from the meeting been forwarded to the HSE drugs group? When will we get approval for the drug?

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