Results 101-120 of 1,348 for speaker:Pádraig Rice
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: I thank Professor Barry. I now invite Ms McGrath to make her opening remarks.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: Ms McGrath might move to a conclusion. I am conscious of time.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: I thank Ms McGrath. Professor Postma will be joining us after 10 o'clock, so I propose we take the first speaker and then the statement from Professor Postma, if that is agreeable. The first slot is for Fianna Fáil.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: Speakers should be brief as we are running out of time.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: I thank Professor Barry very much. We will move next to the Sinn Féin slot and Deputy Clarke.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: The Deputy's time is up.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: I am sorry to interrupt Professor Barry but the time is up for this slot. I would appreciate it if people could please adhere to the time.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: I thank Professor Barry very much. We are joined by an international guest from the Netherlands, Professor Postma, who has joined the meeting online on Teams and can hopefully hear us. If so, I welcome him to the meeting and ask him to provide a brief opening statement for five minutes.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: We seem to have lost Professor Postma due to technical issues. We will move to our next speaker and hopefully Professor Postma can come back.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: I welcome Professor Postma back to the meeting. We lost connection. I hope he can hear us again.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: Would Professor Postma like to conclude his remarks?
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: That is perfect. We will continue with questions. Members may have questions for Professor Postma as well.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: We will continue with questions. I have a number of questions around newborn screening and the heel prick test. I understand there are nine conditions currently screened for newborn babies using the heel prick test and that, in 2023, the Government approved two more, namely, spinal muscular atrophy, SMA, and severe combined immunodeficiency, SCID. Funding was approved in 2024 but it is...
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: Has Ms McGrath been engaged with in relation to the expansion of the screening programme?
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: My understanding is that in other countries far more conditions are covered by this newborn screening and that our screening is quite limited. It would be great to see that expanded, particularly given that the funding is already there.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: What is causing the delay in expanding the screening?
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: I heard about a case of an Irish person who gave birth abroad and had newborn screening done there. That screening picked up a case of SMA, but if the child been born here, that would not have been picked up. The person was then able to get earlier intervention. It is unfortunate we are seeing that.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: Perhaps that is one we can follow up on with the HSE and the Minister. I understand the HSE has approved three treatments for SMA that can halt the condition's progression and significantly improve quality of life. However, an arbitrary age limit of 18 years was imposed at the time of reimbursement. The treatments were made available for those living with SMA and under the age of 18 at...
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Pádraig Rice: Has there been any review of the current age-based restrictions for these treatments?