Oireachtas Joint and Select Committees

Wednesday, 21 November 2018

Joint Oireachtas Committee on Health

Evaluating Orphan Drugs: Discussion (Resumed)

9:00 am

Ms Vicky McGrath:

The general view is that would be a desirable avenue to take. The systems are not currently in place, and we have some hope that they will become available but it has been a very slow process. We need to ramp up investment in the area to ensure that it can happen in the next two to five years, or else we will always lag behind and will never be in a position to identify that one patient who is getting good outcomes, and we will always struggle to reimburse.

A ring-fenced fund is a good idea in theory and it is something that we would like to see in the short to medium term. However, we do not want the ring-fencing to be a limit or barrier where we have a discrete pot of money and we end up arguing among ourselves over which patients we will spend the pot on. There are other areas where the health service can be streamlined so that funds could be taken from one pot and put into another so that it does not become the case that there is only one bloc of money available.

The Deputy spoke of a cost-benefit, the QALY and so on. Mr. Watt has alluded to re-jigging the entire heath technology assessment, HTA, system. We must take account of the burden borne by people in general and by society generally. It is not only the Department of Health budget or the Government, but it is about all the work we do and how better can we invest our money and time into other areas if these therapies were being made available.