Stephen Donnelly (Wicklow, Fianna Fail) | Oireachtas source

Specifically on evaluation, one of the issues in passing these rare drugs is that they do not meet this magic number of €45,000 per quality-adjusted life year, QALY, or a disability adjusted life year, that rare drugs are not meeting. This is for several reasons, including the lack of comparator therapies to use, because they are very expensive due to the small numbers of people to whom they apply and partly, we are told, because the State does not have a system of payment by performance. Are the officials in favour of a ring-fenced budget that would say that a certain amount of millions of euro was designated for orphan drugs and the €45,000 would be moved to something else and bring in extra issues?

Professor Barry has repeatedly made the point that in the case of orphan drugs, there must be payment by results. One reason it is so unaffordable is because there could be a phenomenal drug that works on one in 20 people suffering from a rare disease, but because one must pay for all 20, it becomes uneconomical for the one person. I have put that directly to the pharmaceutical companies, including some of those making rare drugs, and they have said that they would be very happy to move to a payment by results or outcomes system, however, the IT systems are not in place. They said that it is nothing to do with the pharmaceutical companies but relates to the inability to cope by IT systems in Irish hospitals. They have cited places such as Scotland and England where they have been introduced. Does that sound correct? Have the pharmaceutical companies told the HSE and the Department that they are willing to move to payment by outcomes?