Stephen Donnelly (Wicklow, Fianna Fail) | Oireachtas source

I turn now to the process. Professor Barry made a point, on which I fully agree with him, that the State should pay on an outcomes basis for orphan drugs. If there is a drug, be it Spinraza or something else, which works on, say, one in five people, and if it is not cost effective to provide ongoing treatments for all five, we can identify and pay for the one for whom it works while stopping the treatment for those for whom it does not work, although that is not always easy and it can be politically and administratively difficult but it must be done. I have put Professor Barry's point to several of the bigger pharmaceutical companies which provide some of these fantastic drugs and they were positive.

They said they want to do it as well and they gave me examples of other countries in which they are doing this. The impression I got was that pharmacoeconomics here is not up for it. I am not suggesting that is what I was told, rather it is what I had assumed. However, what they said is that the problem in Ireland is that we do not have the necessary IT systems in place to track the patients and, therefore, be able to do this. Is that the witnesses's understanding? Is the barrier to the payment by outcomes, which hopefully would allow for more of these wonderful drugs, that we do not have in place the IT systems to do it?