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Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: The stakeholders who have been in touch with us are calling for a clinical reassessment framework allowing adults with SMA to access therapy based on specialist clinical assessment and not chronological age. What is Professor Barry's view of that kind of proposal? From whom would direction be needed to act on that?

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: I have one quick question for Professor Postma. In the Netherlands, 27 conditions are screened for in newborns, compared with Ireland, which does just nine. Has any research been done into the cost-benefit analysis of expanding newborns screening?

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: The Senator's time is up.

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: The time is up. I wish Professor Barry well with his final time in post. I suggest we take a quick comfort break and resume in five minutes. Is that agreed? Agreed.

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: We will now continue our consideration of rare diseases. Our next slot is for Fianna Fáil. I call Deputy O’Sullivan.

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: We might tease that out in further questioning later. Next is Senator Nicole Ryan of Sinn Féin.

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: The next slot is for Fine Gael with Deputy Roche. We will then go back at the top of the list, with Senator Rabbitte followed by Deputy Buckley and Senator Boyle.

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: Just a brief answer.

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: Just a brief answer to the question, please.

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: We move to the next slot, which is a Sinn Féin one. Deputy Cullinane has been substituted by Deputy Buckley.

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: We will take a response from each of the witnesses.

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: We might just get a response from Ms McGrath. There are only 30 seconds left in this slot.

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: The next slot belongs to Fine Gael and I call Senator Boyle.

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: Next to speak is Senator Maria Byrne.

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: That is all the questions from our members and substitute attendees. Deputy Aird has also joined us and he has just one question to ask.

Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)

Pádraig Rice: That brings us to towards the end of our considerations on this. I will offer my own reflections on it. As Deputy Buckley said, at one end we have patients who are really desperate, really want access to medicines and really need them, and on the other end we have those who want to make a lot of money off it, with a lot of political pressure on both sides and a difficult process in the...

Written Answers — Department of Foreign Affairs and Trade: Departmental Correspondence (15 Oct 2025)

Pádraig Rice: 12. To ask the Minister for Foreign Affairs and Trade further to Parliamentary Question No. 95 of 17 September 2025, for an update on the evacuation process for an individual (details supplied); to outline the progress made in obtaining alternative travel documentation; and if he will make a statement on the matter. [55962/25]

Written Answers — Department of Health: Health Strategies (15 Oct 2025)

Pádraig Rice: 349. To ask the Minister for Health if there are plans to develop a national strategy to reduce sudden unexpected death in epilepsy and epilepsy-related deaths; and if she will make a statement on the matter. [55949/25]

Written Answers — Department of Health: Medicinal Products (15 Oct 2025)

Pádraig Rice: 350. To ask the Minister for Health the position in relation to a drug (details supplied); if it will be available through the HSE; and if she will make a statement on the matter. [55951/25]

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