Medicinal Products
Seanad Éireann — 2026-03-25
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Mary Butler (FF), Waterford

I thank the Senator. I agree wholeheartedly with every word he has said. In the context of rare diseases, we do have a real and active focus on improving how we support people living with these diseases. Since the launch of the National Rare Disease Strategy 2025-2030, an implementation oversight group has been launched. It met in February to begin work planning for 11 recommendations. As implementation of the strategy progresses, it is intended that patient representation, which is important, will be a key feature and will be embedded in all structures. Two new framework agreements have also been reached with the Irish Pharmaceutical Healthcare Association and Medicines for Ireland on the pricing and supply of medicines, which the Senator spoke about earlier. The agreements provide a commitment and a structured process towards achieving a 180-day timeline for completing health technology assessments and reimbursement decisions, accelerating patient access to new treatments. The Minister, Deputy Carroll MacNeill, with whom I work closely, is very keen on having a dedicated timeline that we can manage. This has gone on, as can be seen from the answer I read out, for almost two years. Aoife and others do not have that length of time. As the Senator said, every day is a change.
In addition, the State and the pharmaceutical sector have agreed to develop a further strategic partnership on the development of a sandboxed early access programme for rare diseases proof of concept, having regard to the commitments within the programme for Government. I acknowledge Senator Teresa Costello, who is raising issues about another orphan drug. I am glad to see the Minister's focus on this issue. She has a dedicated focus. I will bring everything the Senator has said back to our team.

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Record URI: https://data.oireachtas.ie/akn/ie/debateRecord/seanad/2026-03-25/debate/main
Retrieved: 2026-08-14T04:54:46+00:00
Sitting date: 2026-03-25