Results 21-40 of 1,175 for speaker:Tom Clonan
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: I thank the witnesses. I have a young man at home who has a rare disease, and unfortunately for him I do not think there is any treatment available for him at the moment. We live the life of the family witnessing a person’s quality of life deteriorating, with life-limiting and life-altering implications for him. For how long has Professor Barry been in his post?
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: Twenty-seven years. Looking at Professor Barry's senior management team and review group, I imagine they are a veritable treasure trove of Trinity voters. They are mostly Trinity graduates.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: Professor Barry can vote for me in the new constituency that is being established. I have not seen the details of everyone in the team, but the vast majority are pharmacists and statisticians. Professor Barry will have to forgive me because I was at the meeting of the disability committee and may have missed something. Apart from the experts from a natural sciences background, which is a...
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: Yes or no?
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: Have families a formal mechanism for feeding into the assessment?
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: Does the National Centre for Pharmacoeconomics deal directly with patients?
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: Do patients get to feed directly into the assessment process?
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: We have a similar concern in the disability sector because, usually, service providers or representative groups are not disabled persons’ organisations. The centre does not deal directly with people with the qualitative experience in question.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: Something struck me from what I heard, and I apologise again as I was at the disability matters committee meeting. I suppose it goes with the title “pharmacoeconomic review”, but Professor Barry talked about a cost–benefit analysis. Does he believe that is an ethical way to assess the funding, approval or otherwise of drugs?
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: That is Professor Barry’s subjective view.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: But it is his subjective view.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: Is it informed by any formal ethical framework? If it is, I would be very interested in hearing which one.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: What experts from the human sciences does Professor Barry have on his review boards and assessment panels who can speak to the qualitative and ethically grounded aspects of the centre’s decision-making?
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: Those are all quantitative measures.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: I understand that. The witnesses mentioned several times in their presentation-----
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: -----what the data tells them, but how are they informed about the human dimension? I would put it to them that having a deterministic, mechanical assessment process, as they have set out, is inherently unethical by definition.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: It is, by definition, unethical.
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: On the basis of the outcomes and international comparators, we seem to be behind our peers in other parts of the EU. I have serious concerns that the NCPE does not have an ethicist and does not have enough interface with the human sciences and expertise in this area. That is something the centre ought to consider. Its decision-making process, if it entails a simple cost–benefit...
- Joint Oireachtas Committee on Health: Treatment of Rare Diseases: Discussion (15 Oct 2025)
Tom Clonan: As an ethical defence, that is highly relativistic. It is actually quite a controversial ethical defence to put forward.