Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein) | Oireachtas source

We are talking about 25 seriously ill children and double that number of adults who would benefit directly from access to Spinraza. I will speak to the BeNeLuxA initiative and the negotiation process available to Ireland for Spinraza.

It would mean that each vial, costing €83,000 each, would cost less than €50,000 as a result of the BeNeLuxA position that gives a significant saving of €33,000 per vial. In year one, six vials would be used and in each subsequent year it would be down to three vials per year in relation to those who would benefit directly from it.

While it is still a considerable sum, Biogen, like many of the other pharma giants, is a significant player in the production of many products, some branded and some biosimilar. We do not appear to have a biosimilar strategy in this State but I am asking the Minister of State to convey to the Minister for Health that from my examination of Biogen's range of products, there is the potential to engage seriously with it on biosimilars for other drugs that are currently costing us significant sums annually in tandem with the negotiation on Spinraza. A saving can be negotiated with Biogen that would eliminate the total cost of the introduction or approval of the reimbursement of Spinraza in this State. That would mean a lot for the children, families and parents in each of these cases.

I appeal to the Minister of State as a mother and a grandmother to impress on the Minister that the answer that I have received here today is not worth the paper it is written on. I have given more information than he has been willing to share in recent times and he has not yet presented in the House to address this issue. I appeal to the Minister of State to impress on him the importance of a decision in the favour and interest of these children.

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