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going to regain any of the abilities we've lost, but Skyclarys will give us time. Time when you're dealing with our progressive relentless disease is everything. We all deserve time with our loved ones." Those are the words of Emily Felix, a 28-year-old trainee … future, but the disease continues to progress. Yesterday, as the Taoiseach knows, the HSE drugs group met to consider reimbursement of Skyclarys, the first approved treatment that can slow the progression of Friedreich's ataxia. Patients hoped for a positive decision. This process has been ongoing for years

This is a progressive degenerative neurological disease. They were here at the Dáil because they have been waiting two years for access to Skyclarys, a drug that can slow down the relentless progression of their condition. Their hopes were very high that the HSE drugs committee would finally … approve Skyclarys, but those hopes were to be dashed. The committee decided against approving the drug. Instead, it referred it to a rare disease review group. In other words, one committee passing the buck to another committee. That means more delay and more time wasting - time that these

want to read an excerpt from an email I got today in relation to Skyclarys for people with Friedreich's ataxia: At 19 years old, I should be excited about my future. I should be looking forward to building a career, travelling, making memories with friends and planning … deteriorate while a treatment exists that could slow the decline. The Friedreich's ataxia community in Ireland has been fighting for reimbursement of Skyclarys for a long time. We have shared our stories, met with politicians, engaged with decision makers and done everything asked of us. The postponement

group of individuals who have Friedreich’s ataxia and their families here in Leinster House. They are calling for urgent access to Skyclarys, the life-changing drug for those living with this rare, degenerative neurological condition. I offered them my full support and that of the Labour Party … communication with the group. I ask that this be addressed. Clearly, the most substantive issue is the delay in providing approval for reimbursements. Skyclarys is already being reimbursed in other EU countries. We need to work with other EU member states to reduce costs in line with

ourselves at what cost. Unfortunately, in this case it is at the cost of lives. I made a comment about the Skyclarys campaign. I know the Minister of State has to be careful what she says because it is due before the drugs group. I again make … from the United States and a few other countries internationally. When are we going to step up to the plate with drugs like Skyclarys for Friedreich's ataxia patients? I know the Minister of State has constituents of her own and it is close to her heart

Deputy said, it is important. The next HSE drugs group is meeting on Tuesday, 14 July and that will be discussed. Skyclarys is on the agenda for that meeting. It is important because I have met with so many families in Carlow-Kilkenny and with constituents who need … important that we know we have the date for it. The meeting is on Tuesday, 14 July with the drugs group and Skyclarys is on the agenda for that group meeting. I will bring all of the Deputy's important issues and concerns on timing to the Minister

health technology assessment was published in December 2025. That is public and was not that strong in terms of its assessment of Skyclarys at the time. There was a clear recommendation from that. That was then moved on to the HSE drugs group. I accept there are issues

matter has been raised twice already this morning, but it is hugely important. I will make a personal appeal to the Taoiseach regarding Skyclarys and the further delay that has now arisen. Yesterday, Emma O'Shea came to Leinster House from west Cork with her mother, father

Public Gallery and outside the gates of Leinster House for a peaceful protest. Can we have a debate on the current status of Skyclarys reimbursement and will these sufferers have positive news

outside the gates of the Dáil. They are, as the Taoiseach knows, waiting and waiting for confirmation that they will have access to Skyclarys, a drug that has the potential to be life-transforming for them. In the absence of it, however, far too many of them

industry, as well as patient advocates. There will be an important meeting of the HSE drugs group next Tuesday, which will discuss Skyclarys, and recommend it, hopefully, for approval for reimbursement. I do not expect the Minister to intervene or comment on that specific case, and we have

current age limits for school bus drivers and school buses used for school transport. Deputy Pádraig O'Sullivan - To discuss the reimbursement of SkyClarys. The matters raised by Deputies Connolly, O'Sullivan, O'Donoghue, Ó Súilleabháin, McGuinness and Newsome Drennan, and Neville have been selected for discussion

group of people living with Friedreich's ataxia, along with their families, were present in the Dáil as the urgently needed drug Skyclarys was being discussed on Leaders' Questions. It is important to acknowledge the hurt the Taoiseach caused that day when he gave incorrect reasons

coverage over the last few months is the disease called Friedreich's ataxia. There is a drug out there called Skyclarys. Citizens of a number of European countries are able to access that medicine. We have come here and families have come here and spoken about

speaking today on behalf of families living with Friedrich's ataxia who are running out of time while waiting for access to Skyclarys, the only approved treatment for this cruel disease. For these patients, every week that passes means more mobility loss, more independence gone and more heartbreak

State will know that we are working with Friedreich’s ataxia patients who are undergoing a similar process regarding reimbursement of the drug Skyclarys, which, I understand, will be deal with by the drugs group shortly. Still, here we are again. How many more patients' groups or cohorts

Deputy Niamh Smyth asked the Minister for Health if she will provide an update on the HSE's consideration of Skyclarys for the treatment of Friedreich's ataxia; the reason the drug was not included on the agenda of the HSE Drugs Group meeting of 14 July

Deputy Eoin Ó Broin asked the Minister for Health if she will confirm that Skyclarys will be on the agenda for the upcoming HSE Drugs Group meeting in July; and if she will make a statement on the matter. [52634/26

Deputy Ryan O'Meara asked the Minister for Health for an update on the pricing and reimbursement application for omaveloxolone (skyclarys); if the commercial proposal has yet been received from the company; and if she will make a statement on the matter. [51756/26

Deputy John McGuinness asked the Minister for Health if she will provide an update on the approval of the drug skyclarys in the reimbursement scheme; if all of the information and costings have been submitted by the supplier; and the indicative date for approval. [50630/26