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loved ones." Those are the words of Emily Felix, a 28-year-old trainee solicitor from Kilkenny who is living with Friedreich's ataxia. It is a rare, progressive and life-limiting neurological condition. It gradually takes away mobility, speech and independence. Emily was diagnosed at 12. Since … 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. Instead, the drug was referred to a rare disease technical

meet with her before she leaves Dublin. People in wheelchairs gathered outside Leinster House on Tuesday. They are people living with Friedreich's ataxia. This is a progressive degenerative neurological disease. They were here at the Dáil because they have been waiting two years for access to Skyclarys … robs people of their ability to stand, walk and swallow. It can rob them of their sight and their speech. When Friedreich's ataxia strikes a person's body, it invades every facet of them. Time just changes for a person. Time moves far more quickly, and time

this through initiatives such as the FTD brothers' campaign raising awareness of dementia and through the courageous efforts of families affected by Friedreich's ataxia who have spoken publicly about the urgent need for medical intervention. In my home county, there are a number of families living with … Friedreich's ataxia. I think particularly of Liam and Kiara Lynch and Theresa Kane and her two young children. For those who are unfamiliar with this disease, it is a rare, inherited neurodegenerative disorder that can cause progressive damage to the nervous system and the heart. There

also here to speak about Friedreich's ataxia. On Monday evening, I met Aoife Quinn from County Galway, who was diagnosed with Friedreich’s ataxia in 2021. She outlined to me her long pathway to getting a diagnosis for this rare disease and how the disease impacted … independence for as long as possible. She is just one of approximately 200 people across the State who are living with Friedreich's ataxia. Access to this treatment would also help those who are newly diagnosed, who may be spared some of the suffering experienced by those before

with the decision of the HSE senior management to approve the reimbursement of Skyclarys for patients over 16 years of age with Friedreich's ataxia following substantive engagement and negotiations with the company. The company did come to the table with a significant new offer in respect … advised that it is working to have reimbursement under the high tech arrangements in place from 1 October. For the treatment of Friedreich's ataxia in adults and adolescents aged 16 years and older, the prescribing will be restricted to designated approved consultants with experience of treating patients

very much a country-by-country experience at the moment. I am conscious, in particular, of those people whose lives are affected Friedreich’s ataxia, a rare genetic neurological condition. I know that many Deputies may raise access to treatment for this condition today, and I want … respond carefully and respectfully. I met many of the families and many of the people suffering from Friedreich's ataxia, privately and in the audiovisual room briefing. I was very glad to have the opportunity to meet those patients, as I have had the opportunity to meet other

timelines - and when these families can expect this medicine. I will raise, as others have, Skyclarys and the treatment of Friedreich's ataxia, a rare neurodegenerative disorder that progresses very quickly, resulting in neurological decline, the loss of bodily function, mobility and independence, and ultimately death. Approximately … people in Ireland have Friedreich's ataxia. I know the Minister met some of them earlier this year. Skyclarys is the only approved treatment for this condition. It was approved by the EMA in February 2024 and is available in many states across

Deputy's question. Omaveloxolone, sold under the brand name Skyclarys, is a medication licensed by the European Medicines Agency to treat Friedreich’s ataxia in patients aged 16 years and over. Friedreich’s ataxia is a rare inherited disease that causes damage to the nervous system. Under

Hoireabhaird from Kildare and Oisín Pollard from Carlow - and their families attended the AV room to raise awareness around the rare disease, Friedreich's Ataxia. These five young people all suffer from Friedreich's Ataxia and they need the Government's help with regard to approving funding

counterparts for access to these medicines. It is often in excess of 800 days. For a person with Duchenne muscular dystrophy or Friedreich's ataxia, those 800 days or so are time they do not have. This summer, we saw Skyclarys approved for Friedreich's ataxia after

have spoken to the Minister for Health about this issue. There is engagement with the company involved in the case of Friedreich’s ataxia. The Department had been awaiting responses, but that engagement is vital to trying to get this resolved for Friedreich's ataxia cases

maximum outcomes from interventions. Deputy Heneghan raised the northside home care workers, which I spoke about earlier. I also spoke about Friedreich's ataxia. I will come back to him about the home care workers; I think I have already outlined to Deputy Quaide and other Deputies … situation with Friedreich's ataxia. Deputy Ward raised waiting times for disabilities. Early intervention is key. That is why we are doing the reforms that we are doing. Not everybody likes it, but we believe it is better to do it the way we are proposing

calls for the availability of treatments for Friedreich's ataxia and Duchenne muscular dystrophy and to recognise the very brave patients and their advocates who have made this case in Leinster House. Skyclarys is the first and only approved treatment for Friedreich's ataxia which around 200 people

Friedreich’s ataxia is a progressive and degenerative disease for which there is no cure. Until recently there was no effective treatment either but now there is. It is called Skyclarys and it is available elsewhere in Europe but not here in Ireland. People with Friedreich’s ataxia

want to speak on behalf of families and patients with Friedreich's ataxia and muscular dystrophy. I want to speak particularly for Eric Fitzgerald, a young man from Ballyhaunis, in County Mayo, who is losing power and muscle and whose lower limbs have weakened significantly. His condition … Eric, the passage of time means the loss of muscle. It is extraordinarily sad. I met a group of young people with Friedreich's ataxia last month. I met a wonderful young woman called Emily Felix. Emily's story is again exceptionally sad. Emily has started recording

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 … overshadowed by fear, knowing that my condition will continue to 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

have raised the issue of Friedreich's ataxia sufferers with the Taoiseach on numerous occasions in this Chamber for well over a year. There is a need to approve the drug Skyclarys for people like Emily Felix, Paudie Coady and Emma O'Shea - the latter of whom … Ireland but, more alarmingly, Skyclarys has been cleared to be rolled by the State 23 days ago. To this day, no Friedreich's ataxia sufferer has been contacted by the HSE or otherwise as to when or how the drug is to be administered. Twenty-three days

They rank amongst the hardest stories I have listened to in my seven years up here. Many people will be familiar with Friedreich's ataxia, which I know the Minister obviously cannot speak about today in any great detail. The heartbreaking stories of those families and individuals such … were successful in that. However, as I said at the start, I think it is dehumanising, whether it is amyloidosis, Friedreich's ataxia or Duchenne muscular dystrophy. It is dehumanising that we put people on that platform. I call it Groundhog Day. As I said to the Minister

Skyclarys was approved for reimbursement on 25 August. It has been a very challenging period for our patients with Friedreich’s ataxia, FA, and their families. If services in Tallaght University Hospital remain unchanged, some FA patients could have to wait until June 2028 to get the Skyclarys

been 23 days since the drug Skyclarys was approved for roll-out to Friedreich's ataxia patients. To date, not one patient has been contacted in regard to how they can receive this life-changing drug. Can we have a debate in the Dáil today to clear that

clear, it is not that all of this is frustrating for those living with Friedreich's ataxia; it is actually terrifying for them. I met Emily three or four weeks ago and I was speaking to her again on Tuesday. Even in that short time span, she told

Imagine being the father of two boys who have Friedreich's ataxia and one of them passing away. I know the Tánaiste is familiar with the case of Craig Coady. I normally do not personalise stories in here but he spoke about this quite openly

approve it based on scientific grounds, there is an extra opportunity for those clinicians who are actively working with patients with Friedreich’s ataxia or the relevant rare disease to have their say, to make their case and give the best explanation of how they think it might

thank Deputy Cullinane for raising this issue. I accept this is a matter of urgency for those with the condition of Friedreich's ataxia. I have met with Craig Coady and with others who have the condition. It is extremely worrying for them to say the least

Yesterday evening, I met a 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

Deputy Pádraig Mac Lochlainn asked the Minister for Health the current waiting time for a Friedreich’s ataxia clinic appointment; and the measures being taken to ensure that people living with Friedreich’s ataxia can access timely specialist review and annual multidisciplinary assessments in line with recognised European

Deputy Pádraig Rice asked the Minister for Health to outline the process that will be used to initiate patients with Friedreich’s Ataxia on a treatment (details supplied); and to confirm if all neurologists currently treating patients with Friedreich’s Ataxia across Ireland will be authorised to prescribe

Robert Troy asked the Minister for Health the position regarding the price negotiations on the approval of Skyclarys for the treatment of Friedreich’s Ataxia; the specific steps that are being taken to ensure the HSE considers the time critical nature of Friedreich’s ataxia during the current

will intervene to ensure that the Health Service Executive urgently prioritises the conclusion of reimbursement negotiations for skyclarys for the treatment of Friedreich’s ataxia, given that it is currently the only available treatment for this progressive and life-limiting rare disease and that Friedreich’s ataxia

Minister for Health when she expects an outcome from the application for pricing and reimbursement of omaveloxolone (Skyclarys) for the treatment of Friedreich’s Ataxia in adults and adolescents aged 16 years and older; if not yet known, the efforts that will be made in the interim … support those diagnosed with Friedreich’s Ataxia who are waiting on the outcome of this process; and if she will make a statement on the matter. [18722/26

Deputy Michael Cahill asked the Minister for Health if she is aware of concerns that some people living with Friedreich’s ataxia may face significant delays in accessing skyclarys (omaveloxolone) despite its reimbursement from 1 October 2026 due to capacity constraints at the combined ataxia clinic at Tallaght … will have commenced treatment; if additional resources will be provided to support treatment initiation and monitoring; the current waiting time for a Friedreich’s ataxia clinic appointment; and the measures being taken. [70235/26

Deputy Pádraig Mac Lochlainn asked the Minister for Health if she is aware of concerns that some people living with Friedreich’s ataxia may face significant delays in accessing skyclarys (omaveloxolone) despite its reimbursement from 1 October 2026 due to capacity constraints at the Combined Ataxia Clinic … will have commenced treatment; whether additional resources will be provided to support treatment initiation and monitoring; the current waiting time for a Friedreich’s ataxia clinic appointment. [70248/26

Deputy Louis O'Hara asked the Minister for Health if she is aware of concerns that some people living with Friedreich’s ataxia may face significant delays in accessing skyclarys (omaveloxolone) despite its reimbursement from 1 October 2026 due to capacity constraints at the combined ataxia clinic … will have commenced treatment; if additional resources will be provided to support treatment initiation and monitoring; the current waiting time for a Friedreich’s ataxia clinic appointment; and the measures being taken to address the delays. [70309/26

Deputy Conor D. McGuinness asked the Minister for Health whether she is aware of concerns that some people living with Friedreich’s ataxia may face significant delays in accessing a drug (details supplied) despite its reimbursement from 1 October 2026 due to capacity constraints at the Combined Ataxia … will have commenced treatment; whether additional resources will be provided to support treatment initiation and monitoring; the current waiting time for a Friedreich’s ataxia clinic appointment; and the measures being taken. [70419/26

Conway-Walsh asked the Minister for Health the specific steps being taken to ensure the HSE recognises the time-critical nature of Friedreich’s Ataxia during the current price negotiations for Skyclarys; how the commitments in the National Rare Disease Strategy 2025–2030 and the 2026 IPHA Framework … Agreement are being applied to this case to prevent further delay for those with a Friedreich’s Ataxia diagnosis; and if she will make a statement on the matter. [18723/26

Deputy Shay Brennan asked the Minister for Health if she is aware of concerns that some people living with Friedreich’s ataxia may face significant delays in accessing skyclarys (omaveloxolone) despite its reimbursement from 1 October 2026 (details supplied); the estimated timeframe within which all eligible patients will … have commenced treatment; if additional resources will be provided to support treatment initiation and monitoring; the current waiting time for a Friedreich’s ataxia clinic appointment; and the measures being taken to address access to timely specialist review and annual multidisciplinary assessments. [70468/26

Deputy Barry Heneghan asked the Minister for Health whether she is aware of delays in accessing a drug (details supplied) for Friedreich’s ataxia due to capacity constraints at the Combined Ataxia Clinic, Tallaght University Hospital; the timeframe for all eligible patients to commence treatment; whether additional resources

Department intends to review the current medicines reimbursement process following concerns raised during the consideration of skyclarys for patients with Friedreich's ataxia; and if lessons have been identified regarding the assessment of treatments for rare diseases. [64548/26

Deputy Michael Cahill asked the Minister for Health the status of the roll out of Skyclarys (omaveloxolone) for patients with Friedreich's ataxia; the reason for delays following re-imbursement approval; when eligible patients can expect to access the treatment; and if she will make a statement

Robert Troy asked the Minister for Health if she will provide an update on the approval of Skyclarys for the treatment of Friedreich's ataxia; the cause for the delay in completing the final administrative arrangements between the HSE and an organisation (details supplied); and when will hospital

Deputy Matt Carthy asked the Minister for Health for an update on the implementation and availability of skyclarys (omaveloxolone) for patients with Friedreich’s ataxia following its approval for reimbursement; the date on which it is expected that the first patients in Ireland to commence treatment; the steps

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 2026; if she will

measures being taken to ensure there are no further avoidable delays in progressing access to skyclarys for patients living with Friedreich’s ataxia; and if she will make a statement on the matter. [48540/26

Smyth asked the Minister for Health if she will provide an update on the reimbursement process for skyclarys for the treatment of Friedreich's Ataxia; the meetings that have taken place to date regarding the application; when a final decision is expected; and if she will make

Natasha Newsome Drennan asked the Minister for Health the engagements she has had with those advocating on behalf of people living with Friedreich's ataxia; and if she will make a statement on the matter. [46678/26

Deputy Pádraig Rice asked the Minister for Health if the consideration of skyclarys for the treatment of Friedreich's ataxia will be prioritised; the date on which the drug will be on the agenda for a meeting of the HSE Drugs Group; and if she will make

Health if her Department has further considered the inclusion of Skyclarys (omaveloxolone) as of June 2026, 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

Minister for Health the steps she will take to ensure that the HSE recognises and responds to the time-critical nature of Friedreich's ataxia during the current price negotiations for Skyclarys; and if she will make a statement on the matter. [44928/26

Minister for Health if she will ensure Skyclarys is covered by the HSE as it is the only drug approved to treat Friedreich's ataxia; and if she will make a statement on the matter. [45121/26

Deputy Marie Sherlock asked the Minister for Health for an update on the reimbursement process for Skyclarys for persons living with Friedreich’s ataxia; and if she will make a statement on the matter. [45289/26