Oireachtas Joint and Select Committees

Wednesday, 15 October 2025

Joint Oireachtas Committee on Health

Treatment of Rare Diseases: Discussion

2:00 am

Professor Michael Barry:

These are recommendations made by the drugs group. The drugs group will consider the economic evidence but also a whole range of other aspects, for example unmet clinical need, and whether there are any alternative treatments available. These are the factors they will consider. The input from patient groups will also be available to the drugs group. That is for the drugs group to decide. It is not for us. We simply give our part of the information. Incidentally, we do not actually put a value on people's lives. We put a value on the benefit of a drug above and beyond what we have available to us. That is what we do. There is a slight difference. I would say the decision is made by the HSE drugs group not just on economic grounds but on a lot of other aspects as well. That is why we get positive recommendations even when the cost-effectiveness threshold is not met, which is a good thing.

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