Medicinal Products
Dail Éireann — 2026-04-29
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Mary Butler (FF), Waterford

I concur with both Deputies. We are speaking about this really important drug and 200 people, their families and their parents want to know what is going to happen and are hanging on our every word. I take all that on board. While I know this has been going on for two years, the HSE did not receive the information from Biogen until July 2025. We are still waiting for the commercial proposal from the company. That remains outstanding. That is the situation at the moment. I am glad Deputy O'Sullivan has engaged with the company to see if we could get some movement on this. We have an agreement in relation to some drugs. We have the Benelux agreement, which allows us to get really good value in procuring drugs. However, it is different for drugs for rare diseases. You need a number of elements to work together. I agree with Deputy O'Sullivan about the overall system, the process and meaningful engagement. I will be speaking to the Minister about this again. The sooner the commercial proposal from the company comes in, the sooner a decision can be made. There is not a Deputy in the House who has not been touched by Aoife's case and those of others who are awaiting this drug.
Did the Deputies get my response? Was it circulated?

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-04-29/debate/main
Retrieved: 2026-09-21T01:01:08+00:00
Sitting date: 2026-04-29