Results 2,121-2,140 of 8,649 for speaker:Seán Crowe

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?

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

Seán Crowe: Do we have a timescale for that?

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

Seán Crowe: Perhaps that is something that we might follow up, as a committee. The rare disease plan predated Sláintecare. I welcome the fact that the HSE is working with the Department of Health in developing an updated plan for rare diseases. I also welcome the fact that Dr. Martin made a statement about the involvement of patients and families living with rare diseases within the fundamentals...

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

Seán Crowe: Is Deputy Durkan finished?

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

Seán Crowe: The area of orphan drugs, which was touched on earlier, is one of great anxiety. The technical review committee, TRC, for rare diseases is responsible for the drugs being approved for reimbursement. One of the criticisms that people have is that it meets infrequently. Is that the case? It can deliberate for some time. Are there any plans to reform or review this committee? I suppose...

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

Seán Crowe: Is the Health (Pricing and Supply of Medical Goods) Act 2013 a significant barrier to the approval of treatment for rare diseases given that it does not include provision for a different rule set when assessing orphan drugs?

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

Seán Crowe: What is the HSE's view on participation in clinical trials for rare diseases? The witnesses are predicting that they will improve access to and quality of care in an Irish context. Could they elaborate on that? This question is for me, as well as for the people who are listening at home.

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

Seán Crowe: She might also speak about the possibilities and opportunities in the integration grant. What exactly is happening there?

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

Seán Crowe: Is more attention given to rare diseases among clinicians and those involved in this area? Years ago, it used to be the case that everyone wanted to be involved because it is unusual, and because there are so few of them. Is that the case anymore? Is it just a case that we are discovering rare diseases all the time? I would think that someone who has an expertise in rare diseases would...