Oireachtas Joint and Select Committees
Wednesday, 15 October 2025
Joint Oireachtas Committee on Health
Treatment of Rare Diseases: Discussion
2:00 am
Colm Burke (Cork North-Central, Fine Gael)
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I thank the witnesses for coming here this morning. I thank them for their work over the past years. I go back to the 2018 report. I think I am the only member of the health committee who is still here. I think Ms McGrath was there in 2018 when that report was drafted. Clear proposals were set out in that report about trying to expedite the process. There has been very little change in those seven years with regard to dealing with the issues. It has led to a whole lot of frustration. We had a presentation here last week about the drug being made available for the first 180 days. The pharmaceutical company carries the cost of that and negotiations try to deal with issues after that. We have not been innovative in dealing with cases where there is clear evidence. All these drugs are already approved by the European Medicines Agency. Why has there not been change in those seven years even though there is a report here from a committee which was carefully researched, with many presentations on it?