I echo the comments by colleagues on access to drugs, expansion of the heel prick test and the implementation plan for rare diseases. It is one thing having a plan but having it implemented is something different. The surprising thing about rare diseases is that despite their name, they are collectively quite common, affecting at least one in 17 people in Ireland, equating to approximately 300,000 people the length and breadth of this country. This figure is likely to be an underestimation, with the true prevalence…

As a consequence of the technical way in which the Bill is dealt with, I cannot speak later on my amendment. I take this opportunity to address it. We have just had a debate on rare diseases. Last Thursday, we had the Second Stage debate on this Bill, which was very timely. The provisions before us have huge implications for the development of orphan drugs, not just in this country but across Europe and globally. It is hoped that having a unified patent system in Europe will ensure more investment goes into the dev…

Leaving everything to the Electoral Commission is not the right way to proceed. We might be having a post mortem here in two weeks and we may very well regret taking the approach in question. It could be too late regarding the referendum under discussion. I will make my point again and not press it thereafter. It relates to handing people three, four or five ballot papers at the beginning of June, one of which will be for a referendum. When people ask what the referendum is about and are directed to a notice in the…

Tairgim leasú Uimh. 1: Chun an méid seo a leanas a chur isteach i ndiaidh “Fiafraítear díot, sa reifreann seo, an bhféadfaidh Éire an Comhaontú maidir le Cúirt Aontaithe um Paitinní a dhaingniú”: “, chun bunú córais paitinne cuíchóirithe a éascú, rud a fhágfaidh gur fusa aireagáin a chosaint ar fud na 24 thír rannpháirteacha de chuid an Aontais Eorpaigh”. I move amendment No. 1: To insert the following after "You are being asked, in this referendum, if Ireland may ratify the Agreement on a Unified Patent Court": ",…

On 18 January, I raised my concerns regarding inconsistencies in a review of nine cases of haemorrhage where newborn babies suffered bleeding between their skills and scalps during birth in University Hospital Galway in 2022. I sought immediate publication of the report and a transparent review of incidents of this type. When she responded, the Minister of State, Deputy Butler, said she would bring my concerns back to the Minister, Deputy Donnelly, and ask him to respond in writing. I am still awaiting that respons…

I welcome the opportunity to speak on the patent referendum legislation before us. I listened to the Leas-Cheann Comhairle's comment when she came into the House initially and she is quite correct in that. I have a young man, Dara O'Sullivan, in the Public Gallery and I was trying to explain to him what a patent actually is. It is important that we do not take these issues for granted and that we make an effort to explain to people what we are talking about here. The reality is that a patent confers upon the holder…

Next Thursday, 29 February, is international Rare Disease Day. It happens once every four years. Sadly, in Ireland we have one of the highest rates of rare disease in Europe. One in 17 of our population has a rare disease. The west and north-west of the country have the highest incidence of rare diseases in Ireland. Can I get a commitment from the Government that we will have a debate on rare disease and the Government's commitment to deliver a national rare disease strategy?

Sorry, but this is repeatedly happening in the House. Under Standing Orders, the party that moves the Private Members' motion has the last ten minutes of the debate. That is sacrosanct and is protected. We have ten minutes, whatever way the time is divided up. That is what is in the Standing Orders.

I have already provided advice, both privately and publicly, on a number of occasions.

Every week we hear the disheartening news of local, long-established businesses closing their doors for good. This loss is not just a blow to our economy, but to the fabric of our communities in urban and rural areas. Our businesses are the lifeblood of local communities, and the heart of these communities. It seems the Government has yet to grasp the full extent of the crisis engulfing the hospitality sector and, by extension, the wider small business community. The recent wage increases and the hike in VAT on foo…

Last week, I attended the launch of the I Am Number 17 campaign, a determined initiative by 17 change-makers who shared their stories thereby shedding light on the realities faced by patients with rare diseases in Ireland. They are committed to enhancing our understanding of rare diseases and demonstrating that such conditions are more common than any of us believe. Rare diseases include cystic fibrosis, Duchenne muscular dystrophy and Huntington's disease, alongside most cancers, especially those affecting childre…

Last year, the Minister for Health allocated €2.7 million to kickstart the national strategy for genomics and genetic medicine, aiming to bolster our health services capacity in genomics. However, progress has been stymied by recruitment shortfalls. At the last count, only ten of the 18 roles have been recruited under last year's allocation. The eight outstanding roles will not be appointed and have been merged into five roles planned for recruitment in 2024. Therefore, by the end of 2024, there will be 15 new hire…

Quite a number of Members in the House served with John Bruton. Our colleagues Richard, John's brother, Brendan Howlin, who has just spoken, and Michael Lowry, who is unavoidably abroad at the moment, have a unique insight into John because they served with him in Cabinet when he was Taoiseach. I served on John's last Front Bench and what springs to mind for me when I think of John Bruton is a phrase we use in rural Ireland, which is that he was the salt of the earth. I say that for a number of reasons. First, for …

I wonder how you lost track of that.

I thank the Ceann Comhairle for giving me the opportunity to raise this issue. I thank the office of the Minister of State, Deputy Chambers, for responding to me to say he cannot be here because he is in a committee. However, I am not at all happy that none of the other two Ministers of State in the Department of communications could come into the House to respond to this matter. We are facing the potential closure of the post office on The Square in Roscommon town, following the decision by An Post to tender the s…

The difficulty is that Roscommon town will be the only county town in Ireland without an An Post-owned post office if this measure goes ahead. Disappointingly, the type of support that is needed for An Post to develop its own post office network with new services has not been forthcoming to date from the Government, despite a Cabinet commitment to deliver that. This is at least in part resulting in the threat to the status of this post office in Roscommon town and, in fact, the transition of the ownership of all of…

I thank the Minister of State for his response. I will take up his suggestion on the food poverty pilot. I ask that when the report comes to him he circulates it to the committee. I can give him an assurance that the committee will look into it and would like to develop it. It is something the committee is committed to. I thank the Leas-Chathaoirleach of the committee, Deputy Ó Cathasaigh, for acting as rapporteur on this important issue and drafting this report. I thank the witnesses, those who made submissions, t…

Last year, the Saolta University Health Care Group undertook an external review of nine cases of haemorrhage where newborn babies suffered bleeding between their skulls and their scalps during their birth in 2022 in University Hospital Galway. Despite having had the report since last October, it remains unpublished. This is worrying because the Saolta group has been inconsistent in how it carries out external reviews of maternity problems in its hospitals. More alarming is the direct contradiction between the inter…

I am persisting with the issue of recognition of long Covid and Covid as a prescribed illness. I fully accept that, under the terms of our occupation illness scheme, if this recognition is provided, it will lead to just a handful of claims, if any, coming forward. Its recognition will, however, have significant implications for medical assessments for illness benefit, invalidity pension and disability allowance, and the entitlement to disablement benefit.

The difficulty is there are quite a number of contradictions here. If we look to other EU countries, every other EU country has recognised Covid as an occupational illness except Ireland and Greece. The Department of Health and the HSE have recognised long Covid for anyone who was infected up to 15 November 2021, which is a full year and three months after the threshold the Minister of State has just spoken of. At the moment, there are 143 healthcare staff who have been in receipt of payments for in excess of 28 mo…