Half a per cent goes to rare diseases.

I want to begin by welcoming these statements. They are long overdue. I commend the Minister, Deputy Darragh O'Brien, and all the Ministers involved in the negotiations over the last weeks. The figures speak for themselves. In four weeks, diesel prices at the pump rose by approximately 25%. For a sector where fuel already accounts for nearly half of all operating costs, that was not an inconvenience, but an existential threat. We are not talking about large multinationals here with deep reserves and teams of financ…

Going forward, we need to look at the tolling system if we are on about protecting supply chains. I am from Little Island in Cork, which is a large industrial area. We have dozens of haulage companies around the harbour area, coming in and out of Ringaskiddy and the city. Cork is a city that is very heavily reliant on the haulage business. We need to have a look at tolling. In certain countries, there are exemptions for HGVs at certain types of tolls. They look at the weight of the truck and so on. That is somethin…

I know this is a topic the Minister of State is very familiar with, as she has heard me raise it many times within our parliamentary party meetings. This is something she has heard plenty of times from me in the past few years. It is something I am very passionate about. I have more or less dedicated six years of my job as a public representative to pursuing various drugs for rare diseases. I have a feeling I know what will be contained in the answer in front of the Minister of State. It will probably be something …

The NCPE is waiting for a response from the drugs company at the moment but I hope that, in the coming months, we will be in a position where the 200 patients affected will get access to the drug.

I thank the Minister of State for the response. It is predictable, although I do not say that to be dismissive. I know a lot of this and have known it for some time. The point I made in my initial salvo was that we rank 23rd out of 27 EU countries with regard to reimbursement for rare disease drugs. That is a fact. Whether it is Skyclarys or some other drug for some other ailment, the fact of the matter is that Ireland is a laggard among our EU counterparts in terms of reimbursement. I understand that engagement wi…

I have the response from the Minister of State.

I thank the Minister of State for attending. I know this does not involve his own area, so I appreciate him taking this Topical Issue. As the Acting Chair said, I want to speak about childcare. It is probably one of the top three most prevalent issues in my own area of the city in Glanmire. If the Minister of State is not sure where Glanmire is or does not know much about it, it is a strong, growing suburb.

You have, to be fair. It was after the flooding. The Minister of State is familiar with it. In the last 15 or 20 years, there has been unprecedented development of residential housing there. In the current city development plan proposals, further residential zoning is earmarked. Recently, the Minister, Deputy Foley, announced €135 million for State-led early learning and childcare services. It is a very welcome scheme and, in time, will prove to be a landmark announcement if we build upon it. I stand here today to …

It was remiss of me to forget that the Minister of State was in Glanmire when people were in the depths of despair after that flooding incident. I know they were most grateful at that time. They were also grateful to the Taoiseach and the then Minister, Michael McGrath, who was also there at the time. It was remiss of me to forget that, but I know the community in Glanmire certainly will not. In the brief time that I have, I want to make the case again. There will be dozens of these projects across the country. We …

It will not surprise the Tánaiste and Minister for Health that at another session of Questions on Policy or Legislation, I have another question about rare diseases. Like Deputy McCarthy, I am going to keep raising this until I see some action. The programme for Government commits to an early access scheme. It also commits to a review of the reimbursement process, which numerous Deputies have raised here over the past few months. We have had people with Friedreich's ataxia and different types of muscular atrophy an…

I raise an issue relating to rare diseases. The Leas-Cheann Comhairle and I recently attended a meeting with sufferers of Friedreich's ataxia. The Tánaiste will be aware of the quest by people with Duchenne muscular dystrophy to have givinostat approved. I do not expect him to comment on that because it is subject to negotiation at the moment but the same thing is happening with a different cohort of patients. Some have come to this building to attend audiovisual room briefings and so on, all in the hope that they …

Yesterday on Taoiseach's Questions, I raised the significant problem of residential care provision for families in Cork. The Taoiseach knows the difficulties facing families and he has met a number of them. I know his office is inundated with requests for help. Unfortunately, particularly in Cork, it seems we are running from crisis to crisis. It seems that respite or residential care is only available for people in those crisis situations. I know the Taoiseach knows this is not a way to run a disability service. I…

I too want to raise an issue around residential care, following on from Deputy Daly. The Taoiseach and I share a county and city. To be fair, his office was very helpful in the case I worked on with it over the past two weeks where a person required urgent residential intervention. The problem in a Cork context was that this young adult was diagnosed with a mild disability. To call a spade a spade, there are no residential opportunities for anybody with that categorisation in Cork, irrespective of their condition. …

I want to raise the section under quality of water or water bodies. The report outlines that the water body assessment showed that 55.3% of Ireland's rivers were assessed as high or good in comparison to 56.2% a number of years prior. The reason I am raising it is that it is specific to one case in Carrignavar, which is in my constituency. Over the past few months, we have been able to tell people that record funding is going to be given to Irish Water to fix many of the problems that have been historic in nature a…

I have a good chance compared with some in the room. I believe we need to get real here. We spoke about developer-led infrastructure in particular with regard to improving our housing delivery. That seems to be taking a backseat now.

There has been a lot of commentary tonight to which I have been listening. I welcome everybody in the Gallery. Some of the commentary I agree with while some of it I fundamentally disagree with and, in my three minutes, I will try to explain as much as I can. As a teacher, I taught for 15 years in a school. I would have had interaction with our autism spectrum disorder, ASD, hub, which we had in Fermoy where I taught for most of my career. I challenge anybody, including the Minister and Minister of State, to find a…

I have been listening to the debate in the Chamber and upstairs for the past 90 minutes or so and can see that a lot of people are speaking from their own personal experience. I live near the River Glashaboy, in Glanmire, and living in the Cork city area with the River Lee, it is inevitable that our day-to-day lives are affected and shaped by the water around us. I have had to go into people's houses and kitchens, like the Minister of State, that have been affected by flooding, and they are some of the toughest day…

I welcome the pause, but, obviously, a pause is not a permanent solution. It is not a binding decision and everybody in this House is going to be watching with interest what happens over the next few weeks. We in Fianna Fáil have always prided ourselves on being the party of education. The number of SNAs in the country has increased by 45% since I became a TD. That is a good story but in the past week we have somehow upscuttled a lot of that progress and good work. I join Deputy Boyd Barrett in calling for a cessat…

I will leave the Minister of State with three points because I know he will be engaging with the Taoiseach, the Tánaiste and his senior Minister in the next few days. First, the cliff edge that I have spoken to him about regularly cannot be the reality. The review I spoke to him about which happened every year needs to be consistent so we do not face this cliff edge in the future. At this point, the loss of any SNA is not tenable given the climate and context of what has happened and the lack of trust and the anxie…