I start by wishing Argentina well tonight against England in the World Cup semi-final. I will support anybody who is playing England until England is not occupying Ireland. I wish Argentina well tonight.

Yesterday, I met 21-year-old Jodie Donovan, who, at the age of 14, noticed that her mobility was not like that of her friends. It took doctors five years to diagnose that Jodie has Friedreich's ataxia. It is a devastating diagnosis. Despite this, Jodie has a lovely, bright, warm personality, and despite all the challenges, she is a happy and resilient young person. It is truly amazing in light of what she is going through. Across the floor, there have been calls for Jodie and others with Friedreich's ataxia to get the medication that will significantly slow its progress and give them some hope. This should not be about politics. It should be about people such as Jodie. Those people got the news last night that the medication they need, namely, Skyclarys, was again further delayed by the HSE. This is devastating for all those with Friedreich's ataxia. The Government needs to make the right call and ensure that they get the medication they need. The HSE needs to stop stalling. Time is precious and the decision has been pushed out for another four weeks. People with Friedreich's ataxia do not have that time. They desperately need a better quality of life.

As I said, they are unbelievably positive despite the challenges they face.

I also raise the issue of the South Bank and Whitebank roads off the Seán Moore Road in Ringsend. Some 65 buses, along with cars, arrive when there are concerts in the Aviva stadium. They park at one end of the Seán Moore Road. The Aviva stadium management previously agreed to ensure sufficient Portaloos would be in place for those arriving. Apparently, some 3,500 people can arrive into that area through buses and cars.

Deke’s Diner, located at the Seán Moore roundabout, can only do so much with the limited toilet facilities it has. He does what he can to support people, but he is being overwhelmed. Aviva management and Dublin City Council need to ensure that previously agreed arrangements are in place. It is unacceptable and the amount of public urination causes poor health standards. This is because the Aviva management is not doing what it agreed to do. It is important that Dublin City Council holds it to account and that the Aviva management steps up to its responsibilities in this regard.

I wish to speak about Skyclarys. Yesterday’s decision was disappointing. Any issue around health should also not be politicised. It is not helpful to patients. Clear and honest information needs to be relayed to patients. I had to speak to one politician who said that strings could be pulled for patients. These already upset people are being used. I have no time for it. There is no space for that in this Chamber.

Yesterday’s decision was disappointing. It is not an outright “No” to Skyclarys. Instead, the HSE has referred it on for further consideration. It means the process is still alive. I am calling on the HSE to set out a clear and urgent timeline for the reimbursement of Skyclarys. People need to know the timeline. Families have already endured an extraordinarily long process. The health technology assessment began in September 2024. The National Centre for Pharmacoeconomics, NCPE, completed its review in December 2025 and commercial negotiations have taken place. Yesterday, instead of reaching a final decision, another stage was added. If it is about pricing, our pricing is in line with other EU countries. We cannot expect to get special treatment in Ireland and undercut everyone else.

Every week matters to a person living with Friedreich’s ataxia. It is a progressive, degenerative disease. Time lost cannot be recovered. Mobility, independence and quality of life continue to decline while this process continues. I appreciate that the HSE has a job of work to do in this regard, and I know the decision yesterday was not a “No”, but it is another wait for people who do not have time. After two years of assessment, review and negotiations, patients need certainty.

The bigger picture is that the process is not working. Decisions should never take this long. Last month, it was Givinostat and this month, it is Skyclarys. It will be something else next month. The process needs to change. I call on the Minister to come into this House because we need a discussion about the reimbursement process, orphan drugs, rare diseases and early access programmes.