Results 4,761-4,780 of 11,187 for speaker:Colm Burke

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

Colm Burke: I thank Dr. De Block for giving her time this morning because I know she is very busy. I was looking at the figures and time periods for the BeNeLuxA agreement and there seems to be much variation in even within BeNeLuxA countries around the availability of drugs. For example, in the Netherlands, its average period is 213 days, whereas the period in Belgium is 440 days and in Ireland it is...

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

Colm Burke: If countries looked at the system in the Netherlands or Germany, where the period is 120 days, would we get a better result and drugs available at an earlier date than with current processes?

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

Colm Burke: I want to come back in on the issue of the price negotiation with the Benelux countries. Germany is able to make drugs available within 120 days, although I know it is a different process. Obviously, Germany is a bigger country with more patients with a rare disease. In Ireland there may be as few as 20 people who need a particular treatment whereas in Germany there might be 2,000 such...

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

Colm Burke: I thank our guests for making themselves available and for the presentation. I just want to go back to the national rare diseases plan. My understanding is that there is not any one person in the Department of Health who is in charge of national rare diseases at present. Is this causing its own problems for the HSE in regard to progressing the review of the national rare diseases plan?

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

Colm Burke: However, there is no timeframe.

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

Colm Burke: Would it not be helpful from the HSE’s point of view to now engage with the Department, first about trying to have a specific person who the HSE could engage with on a regular basis, and second, that there is a clear timeframe put in place about the review of the national plan.

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

Colm Burke: I wish to just touch on two other issues. One is the cystic fibrosis drug available for children. I think there are about 35 children in the country who require this particular medication and it is not being made available. What is the timeframe for coming to a decision on that particular drug? Second, a steering group for the development of a national genetics and genomics strategy was...

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

Colm Burke: My understanding is there are 35 families in the country. They are writing to us and lobbying us very much on this drug being made available and it is not being made available. I ask that it be reviewed at the earliest possible date.

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

Colm Burke: I appreciate that.

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

Colm Burke: I thank the Chair. Mr. Woods referred to the genomics issue stating that the committee is set up and so on. I understand we have one specialist in that area per 700,000 of population in the Republic whereas in Northern Ireland it is one per 285,000. This has a significant benefit for the health sector. If we are at that stage here, how long before we could get to a ratio of one to 285,000...

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

Colm Burke: Would the witnesses accept that if we are trying to get a drug approved or we want to make it available, there has to be some connectivity between the medical people here and the medical people in those Benelux countries so that there is co-operation?

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

Colm Burke: It is also about cross-border healthcare in the sense this is a small country and we will not necessarily have all of the expertise here. If we working on pricing with five other countries, could we also be working with them on the provision of expertise?

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

Colm Burke: Going back to the genomics issue whereby there is one expert per 285,000 people in Northern Ireland, has there been engagement with Northern Ireland on sharing expertise so that expertise is available that might not otherwise be, and is there is a quid pro quofor Northern Ireland? has there been any engagement on working together with those in that area in Northern Ireland?

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

Colm Burke: There is an advantage. For instance, we already have people coming from Northern Ireland to Dublin for particular medical treatments. Likewise, we have people from the South going to Northern Ireland for treatment. In this area, could there be more co-operation and, as a result, there would be a benefit for the entire island?

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

Colm Burke: I am asking Mr. Woods if there is not a problem if someone has not been specifically designated to be in charge of the review of this national rare diseases plan. Is this then causing frustration within the HSE?

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

Colm Burke: It might be helpful for the committee if we could get a breakdown of the number over the past five years – Mr. Woods referred to the approximately 29 new orphan drugs approved in 2021 – of new drugs that were brought into the equation in respect of reimbursement and the cost over that time. I understand there were negotiations with the pharmaceutical industry on reducing the...

Written Answers — Department of Culture, Heritage and the Gaeltacht: Tourism Policy (21 Jun 2022)

Colm Burke: 17. To ask the Minister for Culture, Heritage and the Gaeltacht the status of a successor to the Tourism Action Plan 2019-2021; and if she will make a statement on the matter. [32485/22]

Written Answers — Department of Culture, Heritage and the Gaeltacht: Artists' Remuneration (21 Jun 2022)

Colm Burke: 24. To ask the Minister for Culture, Heritage and the Gaeltacht if she will report on the basic income for the arts pilot scheme; the details of the operation of the scheme; the geographical spread of the pilot scheme in order that all counties will benefit; and if she will make a statement on the matter. [32484/22]