Simon Coveney (Cork South Central, Fine Gael) | Oireachtas source

This is a priority, just like it was a priority to get other rare disease drugs approved to date in 2019. There are families awaiting and needing decisions on reimbursement and the absence of those decisions has been going on for too long. In the case of Spinraza, it has been going on for too many months. We also have to ensure that we have in place a system which makes decisions on the basis of the facts in order to ensure that we get the drugs we need for the families and, in particular, the children who need them. We must also ensure we spend money in a way that guarantees we get value for all the money we spend throughout the healthcare expenditure profile, for rare diseases and other diseases. This is where we are at on this. We want this issue resolved for the families concerned. There needs to be a response from Biogen to the effect that persuades the HSE leadership that its proposal represents value for money and is comparable with the price of the drug in other countries. I will certainly speak to the Minister for Health about this issue. It is the responsibility of the Government to ensure that the figures are accurate but we must also ensure that experts make decisions in technical areas such as this. This is why we have in place the existing structure and systems.

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