Oireachtas Joint and Select Committees

Wednesday, 12 July 2017

Joint Oireachtas Committee on Health

Funding of Orphan Drugs: Discussion

9:00 am

Professor Gerry McElvaney:

How long is a piece of string? We were asking for a long time. Our patients are on a one month by one month timeline. We were asking a very simple question, namely, when will we know and we did not get a single answer to that but we have got it today. If we accomplish nothing else today, at least we have accomplished that.

I will turn to Deputy Durkan's question about short-circuiting the route. The drugs have been approved by the EMA and the US Food and Drug Administration, FDA. Why are we seeking to approve them again? That does not make any sense whatsoever. Our role should be to find out if we can get a good price for drugs that work. That is the only question. The way to get a good price is to go in with a European group and use our strength in numbers. We should not go in as a country of 4.5 million, but as a big bloc of 500 million and tell them this is what we need. It is almost intuitive that that is what we should do but we are not doing it. I do not think we got the answers on that today. We got a lot of obfuscation but no real answers to the questions. To summarise, we should not be reinventing the wheel. The drugs have been shown to act well. The next question is whether they are worth the price and if we can get the price down. That is where we should focus.

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