Oireachtas Joint and Select Committees

Wednesday, 15 October 2025

Joint Oireachtas Committee on Health

Treatment of Rare Diseases: Discussion

2:00 am

Photo of Colm BurkeColm Burke (Cork North-Central, Fine Gael)
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Going back to the 2018 report, I was very involved in the drafting of that report. There was a draft report done first. I was involved in redrafting it and making sure we set out a clear programme of action. However, nothing has happened on that. I am concerned that we are here talking seven years later. Will the same conversation be held in seven years' time? I am concerned about the delays that have occurred in progressing and expediting the processing and manufacture of medication. The other issue arising now is that, where something is approved by the NCPE, there is not a buy-in by the HSE. The medical insurers are now saying to patients with private health insurance that they are able to access a drug, but a public patient is not able to get it. There is even a difference among insurance companies, where one will cover the cost of a drug and another will not. We are creating huge division in the country as a result.