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Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: I am fully up to speed with that. What is the next step?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: The committee rejected it last Thursday.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: That is huge. Has it been communicated to the families that Spinraza was rejected on Thursday?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: Yes.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: Our guests are aware of the ruling in Britain last week. Did they take that into account? Was the HSE getting the same deal as the NHS is getting in Britain?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: Except Estonia.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: I am shocked by this.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: I understand that. Is the same price being offered to this State as was offered to the NHS when it made its decision?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: When can parents expect a decision on this?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: Will it be in early June?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: Mr. Reid knows why I am asking.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: Time is of the essence, particularly for the two children in County Mayo. Obviously, I am concerned about all of the children involved but I see the two children in Mayo and the way in which they are shutting down. We are all parents.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: Spinraza is part of the BeNeLuxA agreement and arrangement. Is that correct?

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: It would be wholly unacceptable if it was deemed to be cost-effective in Britain and was not deemed cost-effective here. I need the right decision to be made as quickly as possible. I will ask about the valproate response project and the rapid assessment report. I was disappointed that the Minister, or a representative of his, was not at the recent conference with the HSE and the...

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: I ask the Minister to keep an open mind on the matter but I would like a decision to be made on it as soon as possible. Imagine the anxiety of mothers and parents who knowingly took Epilim and the impact it had. The causation and links have been clearly established in the British Medical Journaland in other published writings and documents. The impact that Epilim had on babies is beyond doubt.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: Yes.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: I have many more questions to ask.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: We need to get to the bottom of these issues because they are really important. I am also concerned about the number of misdiagnoses I am coming across. Let us take the example of a woman who is diagnosed with depression and finds out, after months of treatment, that she has stage 4 cancer. I come across this almost daily. It is apart from the CervicalCheck scandal that continues. As late...

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: Maybe if we can be clear on how we capture the data to measure it.

Joint Oireachtas Committee on Health: Quarterly Update on Health Issues: Discussion (22 May 2019)

Rose Conway Walsh: I do not want to concentrate only on screening but the difficulty is when they go back and say they have symptoms and this is ignored and ignored and then they find out they have cancer. The difficulty in misdiagnosis to which I refer is the number of people who are turned away from hospitals; these are people who present and are told to go home, and they present again because of symptoms...

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