Billy Kelleher (Cork North Central, Fianna Fail) | Oireachtas source

I welcome the witnesses. I wish to make a few brief points on two issues that are very much to the fore at present. First, there is the new drug called Respreeza, which was developed by CSL Behring, and the reimbursement of same. There has been an extension to the compassionate programme. I hope that I have misread the situation because it is hard to believe that the HSE will not facilitate transfusions in that particular area. Perhaps the matter is for another forum. I would like to know why, in view of the fact that the compassionate programme has been extended by the company, that the HSE, at the very least, would not assist the patients with transfusions on the Respreeza side.

Second, Translarna is a medicine that has been referenced by previous speakers. We seem to have fallen way behind in assessing medicines and drugs and in how we handle the reimbursement process. The rare diseases national plan 2014 was launched by the Minister in July 2017 and it is a generic policy framework for rare diseases. The scope of the plan is broad as there are 8,000 rare diseases that affect millions of people. The document goes on.