that it proved challenging. We are not scientists, but we all feel for the families. We understand. We have met people with Friedreich's ataxia. They cannot get this drug fast enough. For all drug approvals unfortunately, there are processes which, unfortunately, have to be gone through
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In debates
just 26 years of age and is now confined to a wheelchair. Her family knows all too well the reality of Friedreich's ataxia because Emma's brother died from this disease. Last night when Emma got back to west Cork and learned there would be yet another
Emma O'Shea and others living with Friedreich's ataxia are in the 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
People living with Friedreich's ataxia are once again 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
think all of us have met with families and young people who have Friedreich's ataxia as a condition and who are eagerly awaiting the outcome of the drug approval process, and there is a process. It is science led, primarily. It is not politically led, primarily
month ago, a 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
approach this. My only objective, like most Deputies on this side of the House, is to help those who have Friedreich's ataxia. That is all. I do not try to score political points with other people on issues as serious as this. I have to say that
issue that has rightly got a lot of 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
existing drugs budget in this country. The Leas-Cheann Comhairle and the Minister of 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
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 for this.
I will talk about my own constituency. I have met with a lot of families in Carlow affected by Friedreich's ataxia, particularly Emily and Oisín. As the Deputy said, it is important. The next HSE drugs group is meeting on Tuesday, 14 July
people living with Friedreich's ataxia time is something they simply do not have. Every delay means more mobility lost, more speech lost and more independence taken away. Families such as Emily Felix and her family in Kilkenny, Oisín Pollard and his family in Carlow and many others
will come back to the Deputy on it.
Deputy Cleere's question was on Friedreich’s ataxia. I think I referenced this earlier. I fully appreciate what the Deputy said. I think he mentioned Emily Felix and Oisín Pollard. I have met quite a number of people
strongly welcome this debate on rare diseases. Only last week, I had the privilege of welcoming young adults living with Friedreich's ataxia, FA, to Leinster House. Tragically, they are waiting and watching their conditions deteriorate rapidly, not due to the lack of medical progress
resource shortages, it only sees the patients every 18 months. This has now been pushed from August to October. Friedreich's ataxia places immense strain on the heart. Emily's cardiac check-up is now delayed far beyond clinical recommendations. That is simply not acceptable. We need adequate
have spoken to the Minister about Paudie Coady. He is 16 years old and has been diagnosed with Friedreich's ataxia. His brother passed away from the same condition last year. It is a terminal condition. It is unbelievable that his father, Craig, has buried
strong and diligent work that they have done in relation to these two drugs. Thankfully, givinostat has been approved but people with Friedreich's ataxia are waiting for Skyclarys to be approved.
This inequity is to be found across the entire healthcare sector, including in the areas
while pilots are something, they are by their very nature exclusive. I noted the Minister's comments early on Skyclarys for Friedreich's ataxia. She has to know time is of the essence and every day counts. It is similar for boys with Duchenne muscular dystrophy. I welcome
muscles do not get weaker while waiting for access. I hope access is granted for whoever needs it as soon possible. On Friedreich's ataxia Skyclarys is the only drug that has been shown to slow the disease. It was approved by the EMA and is available
difficult. Cystic fibrosis is very common in Ireland, yet that took ages as well.
I echo the calls for the treatments for Friedreich's ataxia and Duchenne muscular dystrophy, DMD, to be approved as quickly as possible. I spoke on that issue a year ago in the Dáil
that we got regarding givinostat. However, we are still waiting for that good news when it comes to skyclarys in relation to Friedreich's ataxia. This something that the Government and the HSE must prioritise, particularly its corporate pharmaceutical unit because, as other Deputies have said, time
made in an appropriate way, but that cuts very little mustard with someone like Craig Coady, who has lost a child through Friedreich's ataxia, and is now worried about his other child. It cuts very little mustard with a parent of a child who has Duchenne muscular
what compassion requires. That is what Independent Ireland believes should be delivered.
I wish to ask the Minister of State about Friedreich's ataxia and the medication Skyclarys. Where are we in relation to getting patients access to Skyclarys? The brother of Emma O'Shea in west Cork
best treatments, medicines and supports available.
I want to highlight specific conditions which have already been mentioned. Members of the Friedreich's ataxia group are still awaiting approval and access to a drug. There has been some movement on that, which I welcome. I welcome the opportunity
Those parents are not alone in their story. There is a campaign currently under way by parents whose children primarily suffer from Friedreich's ataxia and who urgently require the drug Skyclarys. I understand that matter is at a sensitive stage of negotiations with
In parliamentary questions
Cathal Crowe
Written
negotiations between the Health Service Executive Corporate Pharmaceutical Unit and the manufacturer regarding the reimbursement of omaveloxolone (skyclarys) for the treatment of Friedreich's ataxia; if she will address concerns regarding the omission of this life-altering therapy from the immediate agenda of the HSE Drugs Group ahead
Michael Cahill
Written
Deputy Michael Cahill asked the Minister for Health to make skyclarys available to people living with Friedreich’s ataxia in Ireland (details supplied); and if she will make a statement on the matter. [44828/26
Pat Buckley
Written
Deputy Pat Buckley asked the Minister for Health to provide urgent access to skyclarys for persons living with Friedreich’s ataxia (FA) here. [44859/26
John Paul O'Shea
Written
John Paul O'Shea asked the Minister for Health for an update on the process to have the drug skyclarys eligible for friedreich's ataxia patients in Ireland; and if she will make a statement on the matter. [43153/26
Niall Collins
Written
Deputy Niall Collins asked the Minister for Health if there are plans to approve skyclarys (omaveloxolone) for Friedreich's ataxia; and if she will make a statement on the matter. [43394/26
Colm Burke
Written
Health the up-to-date position in respect of the application for pricing and reimbursement of skyclarys (omaveloxolone) for the treatment of Friedreich’s ataxia in adults and adolescents aged 16 years and older; and if she will make a statement on the matter. [43399/26
Aengus Ó Snodaigh
Written
delay aligns with the "equitable access" promised in the newly launched National Rare Disease Strategy 2025-2030, given that persons in the Friedreich’s ataxia community in Ireland are being left behind waiting for a decision regarding the skyclarys reimbursement, while patients across Europe gain access to skyclarys
Ken O'Flynn
Written
Flynn asked the Minister for Health if the HSE maintains a national registry, prevalence estimate or centrally collated dataset for Friedreich's ataxia patients in the State. [38848/26
Ken O'Flynn
Written
Flynn asked the Minister for Health whether the assessment of omaveloxolone (skyclarys) included analysis of indirect societal costs associated with Friedreich's ataxia, including disability supports, caregiver burden, loss of educational participation, workforce impacts and long-term health service utilisation; and if she will provide details
Ken O'Flynn
Written
Deputy Ken O'Flynn asked the Minister for Health whether the HSE Drugs Group considered the progressive and degenerative nature of Friedreich's ataxia, including irreversible disease progression during reimbursement delays, in its consideration of omaveloxolone (Skyclarys); and if she will make a statement on the matter. [39840/26
Eamon Scanlon
Written
that the HSE urgently prioritises a conclusion to the skyclarys (omaveloxolone) reimbursement negotiations, given that it is the only available treatment for Friedreich’s ataxia, which currently can be classed as having an ‘unmet need’ as outlined in the National Rare Disease Strategy 2025-2030; her views
Niamh Smyth
Written
Health if she will urgently provide an update on the HSE's decision regarding the reimbursement of skyclarys for the treatment of Friedreich's ataxia; the timeline for a final decision; and if she will make a statement on the matter. [37786/26
Ken O'Flynn
Written
exists within the HSE or under her Department’s policy remit for reimbursement applications relating to rare or progressive neurological conditions, including Friedreich’s ataxia; and if she will detail the criteria and governance of any such mechanism. [33751/26
Ken O'Flynn
Written
Health whether her Department or the HSE maintains a national register or consolidated dataset of patients diagnosed with rare neurological conditions, including Friedreich’s ataxia; and if not, whether any plans are in place to establish such a dataset for service planning purposes. [33754/26
Ken O'Flynn
Written
Minister for Health whether a nationally defined clinical pathway, model of care, or designated specialist service exists for patients diagnosed with Friedreich’s ataxia; and if not, how care is currently coordinated across the State. [33755/26
Albert Dolan
Written
Disease Strategy 2025–2030; the measures that are being taken to address delays in cases where EMA-approved treatments, including those for Friedreich’s ataxia, remain unavailable to patients in Ireland; and if she will make a statement on the matter. [31882/26
Ken O'Flynn
Written
Flynn asked the Minister for Health whether any patients in the State currently have access to omaveloxolone, marketed as Skyclarys, for Friedreich’s ataxia through compassionate use, named patient access, hospital-level approval, exceptional funding, or any other interim access mechanism pending a final HSE reimbursement decision
Ken O'Flynn
Written
State known to the HSE or the Department of Health who are clinically eligible for treatment with omaveloxolone, marketed as Skyclarys, for Friedreich’s ataxia; and if this number has informed any budget impact assessment. [32772/26
Ken O'Flynn
Written
asked the Minister for Health whether the Department or HSE has examined the favourable reimbursement opinion issued in France for Skyclarys in Friedreich’s ataxia, and whether such international assessments are considered in Irish rare disease reimbursement decisions. [32776/26
Ken O'Flynn
Written
asked the Minister for Health whether the Department or HSE is aware that Italy’s medicines authority approved reimbursement of Skyclarys for Friedreich’s ataxia in December 2025, and whether this decision has been considered in the Irish process. [32777/26
Louis O'Hara
Written
Health the measures being taken to improve the timeliness of access to orphan drugs in Ireland, particularly in cases such as Friedreich's ataxia, where a treatment has been approved by the EMA but is not yet reimbursed by the HSE; and if she will make a statement
Martin Daly
Written
Daly asked the Minister for Health her views on whether the ongoing delay in concluding reimbursement negotiations for skyclarys for patients with Friedreich’s ataxia is consistent with the commitment to “equitable access” set out in the recently launched National Rare Disease Strategy
Eoghan Kenny
Written
Eoghan Kenny asked the Minister for Health if her Department has considered the inclusion of skyclarys (omaveloxolone) which is a treatment for Friedreich's ataxia in a reimbursement scheme given the cost of the drug and the fact that other European countries provide this scheme to patients
Niamh Smyth
Written
details supplied); if she will provide an update on the HSE's decision regarding the reimbursement of skyclarys for the treatment of Friedreich's ataxia; if she will note that 619 days have elapsed since the application for reimbursement was submitted by the pharmaceutical company; the timeline
Ken O'Flynn
Written
asked the Minister for Health whether an application has been received for the reimbursement of the drug skyclarys for the treatment of Friedreich’s ataxia; if so, the current status of that application; the date on which it was submitted to the National Centre for Pharmacoeconomics
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