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

This is the second time in a relatively short period in which the Minister has not been present to answer a Deputy's questions. I protested strongly on the previous occasion, when the Minister of State, Deputy Finian McGrath, presented, and I now see the Minister of State, Deputy Catherine Byrne, will be replying. I respect the Minister of State greatly but this is simply not an acceptable practice. I had understood that there is an obligation on the primary Minister to present and answer a Deputy's Topical Issue when selected. I very much regret what is happening. It is most unacceptable. I am sure the Minister of State will convey my comments to the Minister, Deputy Harris.

I recently wrote to the Minister about Spinraza, or nusinersen, seeking a one-to-one meeting with him. Not only has he not been in attendance on the two occasions on which I sought to address this very important matter, he has also written to me declining my request to meet him to address it. That is most strange. Here I am again seeking to establish exactly matters things stand with respect to the need to approve the drug Spinraza - or nusinersen, to give it its formal name - for HSE reimbursement. This is absolutely a must and it should be done without further delay. I understand there have been direct talks with the manufacturing pharmaceutical giant, Biogen, which makes Spinraza. I also understand that Ireland has been offered the same arrangement as was negotiated by the BeNeLuxA group of states, namely, Belgium, Netherlands, Luxembourg and Austria. We have now joined the BeNeLuxA initiative.

It is my view, which I would have put directly to the Minister, that any negotiation such as that specific to Spinraza with Biogen in this instance, or in any other comparable negotiation, should seek to widen the scope of engagement to take into account all possible areas for address, including what other benefits could be secured in our collective interest as a people. I speak of exploring what other financial savings could be achieved by examining other product lines manufactured by Biogen. It would include biosimilars relating to other branded drugs that we currently have access to in this jurisdiction. The focus is on Spinraza but significant gains could be made by widening the scope of the engagement with Biogen. There is the potential for real and substantial savings to be made not only with the initial cost of Spinraza and the significant reduction that the BeNeLuxA negotiation has made available to us but also through other savings that could be made by replacing branded products that are currently available and that are prescribed by general practitioners. They could be replaced with biosimilars currently produced by Biogen.

I apologise as I had not realised the time allocation had elapsed. I am making the point that it is within the gift of the Minister, the Department and the HSE to ensure this exercise can bring a financial reward that could see us reach a position where there would be no additional cost to the public purse because of an imaginative and thoughtful approach to the project.

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