Medicinal Products
Dail Éireann — 2026-05-13
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Mary Butler (FF), Waterford

I thank the two Deputies. It is important we understand that negotiations are under way. There is a system and process in place and simply saying that does not cut it from a political perspective is not at all logical.
There are children all over Ireland who need this drug. The Minister recognises that. There is a process in place. Italfarmaco, the pharmaceutical company, came with a proposal last Friday and the confidential commercial negotiations are under way. Today is Wednesday. The reason there was a delay between January and now is that the NCPE did not received the full HTA from the company until 15 January. It took four months. I do not know why these delays have happened but there are children who need this drug and I agree with the Deputies that it should not be the situation that a child living in Donegal does not have access and a child living five miles down the road does. We understand that but it could not be clearer. The application relating to the commercial negotiations was received last Friday and it is currently getting the best attention. I will speak to the Minister again later today about this. She knows the two Deputies are raising it. She was not in a position to be here today.
The HSE cannot comment on the possible outcomes of the ongoing process, as the Deputies will understand, because of the confidential nature of it. I understand what they said about compassion but I also agree with Deputy Gallagher that the pharmaceutical companies need to come to the table as well. I answered a similar question here last week about Friedreich's Ataxia. It is important now that the negotiations are under way and that we get a positive result.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/dail/2026-05-13/debate/main
Retrieved: 2026-09-14T01:01:03+00:00
Sitting date: 2026-05-13