Early access to rare-disease medicines
Deputy O’Sullivan seeks progress on the programme-for-government commitment to an early-access scheme for rare-disease treatments. The Health Minister confirms officials are designing a scheme while preserving the NCPE’s independence.
Another Thursday and another question on rare diseases. The Minister might want to answer this. Last Sunday, I was on my way to the Cork-Offaly match and I heard an interview between Paul Cunningham and a member of the National Centre for Pharmacoeconomics, NCPE. To say I was very disappointed with what I heard would be an understatement. I raised it at the health committee yesterday with Department of Health officials and the HSE. The programme for Government is explicit. It contains a provision for an early access scheme. The Minister has said it is something she is going to progress over the lifetime of the Government. The political class has endorsed it, as has the Department of Health, but for some reason somebody on the NCPE thinks they can have a contrarian opinion. The last time I checked that person was a civil servant. He is supposed to serve the State and implement the policies this Government decides are worthy of implementation. If the Minister heard the interview, what is her opinion on it? If she has not, I encourage her to listen to it. Does she think it is appropriate that somebody would express an opinion contrary to what the Government has decided to do?
Comment on this
I thank the Deputy. He is right. Not only is an early access programme a commitment in the programme for Government but my officials are already working on designing it and it will be implemented by the HSE. I also acknowledge the role of the NCPE and the independence that is important to preserve and protect. I appreciate radio interviews are one thing but we will strike a balance between protecting the independence and integrity of scientists and listening to them and ploughing on with Government policy that is well endorsed by this House.