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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 Sl√°intecare. 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...

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

Seán Crowe: I am conscious that Deputy Burke wants to come in. I will follow on from what we have been talking about. I am conscious that in the cases of rare diseases, if a family has a child who is dying, they will try anything. We come across campaigns on gofundme.comand so on. Some treatments are selling hope to people. I am not saying that this happens a lot, but we hear of the charlatans who...

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

Seán Crowe: I apologise for keeping Deputy Burke waiting.

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

Seán Crowe: This may seem like a silly question, but what signifies that a disease is a rare disease? For example, I presume the coronavirus, when it started off, at one stage would have been seen as a rare disease but it became a pandemic. Would long Covid, for instance, fit in with the category of rare disease, even though the figures per head of population would suggest its prevalence is quite high?

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

Seán Crowe: One of the criticisms from some of the groups concerns the lack of expertise. It probably touches on what Deputy Burke said about there possibly being expertise in Ireland on some issues. What is the process for beefing that up? For instance, we regularly meet with people from various groups outside Leinster House. People with Lyme disease, which is a disease that is quite common in...

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

Seán Crowe: Yes.

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

Seán Crowe: The first session of this meeting was about the time lapse for access to reimbursement for the cost of medicines. One of the measures introduced by the former Minister was a sustainable multi-annual budget. Would that be helpful in the Irish situation?

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

Seán Crowe: I am teasing it out for the committee in order for it to make a recommendation

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

Seán Crowe: Would a five- or ten-year plan make sense for a multi-annual budget? Are we talking about a budget over the lifetime of a Government?

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

Seán Crowe: One of the exciting things is that there are so many new drugs coming onto the market. Oncologists are talking about life-changing drugs that are coming onto the market. That is the positive message. It goes back to finding a faster way of introducing the drugs to the market. That was one of the reasons for our meeting today. I appreciate the witnesses coming in. The engagement was...

Joint Oireachtas Committee on Health: Sláintecare Implementation: Discussion (15 Jun 2022)

Seán Crowe: Today the committee will meet with the HSE and the Department of Health to discuss the implementation of Sl√°intecare. I welcome Mr. Paul Reid, CEO; Ms Anne O'Connor, chief operations officer; Mr. Liam Woods, national director of acute operations; Ms Yvonne O'Neill, national director of community operations, HSE; Ms Breda Crehan-Roche, chief officer of Community Healthcare West; and Mr....

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