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Joint Oireachtas Committee on Health: Vaginal Mesh Implants: Discussion (29 Jun 2022)

Seán Crowe: I really appreciate Dr. O'Sullivan giving her time this morning. I thank her for eating into her on-call time. We really appreciate her taking part. We will start the speaking rota again. Is Deputy Durkan speaking for Fine Gael?

Emergency Budget: Motion (Resumed) [Private Members] (28 Jun 2022)

Seán Crowe: We are calling on the Government to introduce an emergency budget to deal with the rising cost of living. None of us should have to make a speech outlining the challenges facing families. We see the evidence of that every day. Many of the people to whom I speak say they are at their wit's end and do not know how they will pay the next bill. They are dreading the postman coming up the...

Written Answers — Department of Foreign Affairs and Trade: Passport Services (28 Jun 2022)

Seán Crowe: 384. To ask the Minister for Foreign Affairs and Trade if the list of professionals who may witness a passport application has changed; and the reason that an individual using the same day renewal service in the Cork Passport Office would have been refused on the grounds of a school teacher being the witness for the purpose of the application. [33761/22]

Written Answers — Department of Education and Skills: Special Educational Needs (22 Jun 2022)

Seán Crowe: 130. To ask the Minister for Education and Skills if children diagnosed with Koolen De Vries syndrome are eligible for the Summer Education Programme. [33154/22]

Joint Oireachtas Committee on Health: Business of Joint Committee (22 Jun 2022)

Seán Crowe: Apologies have been received from Senator Black and Deputy Shortall. I have one piece of housekeeping before I introduce the witnesses. Members have been circulated with a draft copy of the minutes of the meetings of 9 February, 27 February, 4 May, 11 May, 12 May, 16 May and 18 May. Are these agreed? Agreed.

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: Today the committee will meet representatives from the Open VLD group from Belgium and the HSE to discuss improving the lives of those affected by rare diseases and their families, and the issue of genetic testing of newborn babies for rare diseases. In the first session, we have the OPEN VLD group. I welcome Dr. Maggie De Block, MP and former Belgian Minister of Social Affairs and Public...

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: We will not have the usual block of speakers so Deputy Colm Burke will lead off the questions.

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: I thought in her earlier contribution Dr. De Block was speaking against the idea of an EU approach and gave the example of the coronavirus and the delays with that. Part of the challenge with the coronavirus was it was a worldwide pandemic and we had wealthy countries pushing themselves forward while poorer countries had to stay behind. On this issue, I can understand that if you buy in...

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: -----so there is probably an argument for an EU-wide negotiation. However, Dr. De Block was saying that might delay things even further. She is saying the approach at the moment is the smaller countries coming together and using that bloc to try to negotiate. Would she be opposed to an EU approach to some of these rare diseases? The other question is whether there is a pattern in...

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: I appreciate that. One of the frustrating things for families in Ireland is we have many pharmaceutical families producing the drugs. We are talking about cents to produce the drugs but they charge an absolute fortune to the people of Ireland when they try to access those drugs. I am conscious we are running out of time but before Dr. De Block goes, is the screening programme for rare...

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: Again, the Italians are probably the model we all look towards. I think we do something like nine tests here. I am sure that is one of the questions we are going to put to the next group of people we have before us. I really appreciate Dr. De Block giving us her time this morning.

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: Okay. We really appreciate Dr. De Block's help and support for the committee's work and I wish her well.

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: We will suspend and come back in with our witnesses from the HSE.

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: Witnesses from the HSE are with us to discuss improving the lives of those affected by rare diseases and their families, and the issue of genetic testing of newborn babies for rare diseases. I welcome Mr. Liam Woods, national director of acute operations in the HSE, Dr. Ciara Martin, consultant paediatrician, emergency medicine, and national clinical adviser and group lead, children and...

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: I am conscious that some members did not get to speak in the first session and that we have limited time. I ask members to keep within the eight-minute slot. If there is additional time, I will bring members back in.

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: Mr. Woods wishes to bring in Mr. Flanagan to answer the Deputy's question.

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: I think the committee has already done so.

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: I return to the issues of screening and testing. I asked about the heel prick test for newborns. I think the former Belgian health minister told us there were 13 tests in Belgium, whereas we have nine. However, everyone seems to suggest it is the Italian model we need to follow. It does 40 tests. Has the possibility of expanding it out to that level been considered? It would give a...

Joint Oireachtas Committee on Health: Rare Diseases: Discussion (Resumed) (22 Jun 2022)

Seán Crowe: Is it the national screening committee which would make that recommendation?

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