Oireachtas Joint and Select Committees

Wednesday, 15 October 2025

Joint Oireachtas Committee on Health

Treatment of Rare Diseases: Discussion

2:00 am

Photo of Pádraig RicePádraig Rice (Cork South-Central, Social Democrats)

Apologies have been received from Deputy Cullinane and Senator Costello. I express my sympathy to Senator Costello on the passing of her father. Deputy Buckley will substitute for Deputy Cullinane and Senator Rabbitte will substitute for Senator Costello.

I remind members of the constitutional requirement that members must be physically present within the confines of Leinster House complex in order to participate in public meetings. I will not permit members to participate if they are not adhering to this constitutional requirement. Therefore, a member who attempts to participate from outside the precincts will be asked to leave the meeting. In this regard, I ask members participating via Microsoft Teams that prior to making their contributions to the meeting, they confirm they are on the grounds of the Leinster House complex.

Are the minutes of the meetings of 7 and 8 October agreed? Agreed.

Today, the committee will consider issues relating to the treatment of rare diseases, including access to and refunds for medicines. To commence the committee's consideration of these matters, I welcome from the National Centre for Pharmacoeconomics, Professor Michael Barry and Dr. Lesley Tilson, and from Rare Diseases Ireland, Ms Vicky McGrath. Joining us on Teams a little later will be Professor Postma from the University of Groningen. He will join us at 10 a.m.

The Irish Pharmaceutical Healthcare Association was also invited to participate but its respondents stated that because of other commitments, it is unable to attend. Additionally, written submissions have been received from Muscular Dystrophy Ireland and the Irish Platform for Patients' Organisations, Science and Industry, which were circulated yesterday by the committee secretariat.

Members and witnesses are reminded of the long-standing parliamentary practice to the effect that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, I will direct them to discontinue their remarks. It is imperative that they comply with any such direction.

To commence consideration of the matter, I invite Professor Barry to make opening remarks on the behalf of the National Centre for Pharmacoeconomics.

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