Oireachtas Joint and Select Committees

Wednesday, 26 May 2021

Joint Oireachtas Committee on Health

Rare Diseases: Discussion

Photo of Colm BurkeColm Burke (Cork North Central, Fine Gael) | Oireachtas source

I thank our guests very much for their presentations. An issue that I have had a concern about for a great number of years and which is still ongoing is the time it takes to assess orphan drugs. While the EMA is in place, it is still taking us on average more than 1,000 days before we are signing off on it here. My understanding is a report was commissioned and made available back in January 2020. It was prepared by Mazars, cost €86,000, but does not appear to have been made public and taken on board. Are the witnesses aware of the up-to-date position on this report and what are they are hearing from the Department on it? The report was about the entire HSE reimbursement system. What is the status of the report and has the Department given an indication on when it intends to deal with it at this stage?

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