Marc MacSharry (Sligo-Leitrim, Fianna Fail) | Oireachtas source

In anticipation of the Taoiseach once again delegating this answer to Deputy Harris, I suggest that Deputy Harris might yet throw his hat in the ring. He seems to be doing a large amount in terms of leadership.

Other Members have welcomed the long-awaited decision on Orkambi. Page 64 of the programme for Government deals with this matter and the Government's use of European initiatives for breakthrough drugs such as Orkambi and others. I will not get back into the quite intemperate contributions from all Members of the House in their frustration over the considerable period they were waiting for this decision to come. We welcome it now and we commend all involved in bringing it about, such as Jillian McNulty, Cystic Fibrosis Ireland, the company itself and others.

However, there is a major problem with the process here. We must look to the European example, such as the early access programme in Germany and France where these breakthrough drugs can be made available immediately while the health technology assessments, HTAs, are being carried out and while the matter is being considered. In comparison, our process is very obscure and lengthy. It goes to the National Centre for Pharmacoeconomics, NCPE, which seems to take about a year. It then goes to a drugs committee in the HSE which has a complete budgetary focus. Nobody knows who is on that committee. At present, there are 31 drugs lost between the National Centre for Pharmacoeconomics and the drugs committee. People's only recourse is Joe Duffy's radio show-----

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