Professor Michael Barry:

I get the Deputy's point. We are aware that none of the drugs for rare diseases will reach the €45,000 per QALY. However, the assessment process is valuable in that it highlights the issues, areas and clinical evidence and the pricing issue. What price would be necessary to get to a better place? Mr. Flanagan uses the results of our assessments to enable a better deal to be secured on these. The fact that it underwent assessment provides the HSE with a lot more information on it rather than simply reimbursing it straight-up.

The new committee speaks to the additional aspect of this such as unmet clinical need and physicians' and patients' viewpoints which is valuable. Drugs for rare diseases are reimbursed, such as Orkambi. There is no way that Orkambi would ever reach €45,000 per QALY yet it is reimbursed nonetheless. The HSE can use the reports to try to improve the offer on the table but the €45,000 per QALY threshold is not an absolute and is not used in that way.