Deputy Matt Carthy - To discuss the EU pact on migration and asylum.
Deputy Natasha Newsome Drennan - To discuss access to treatment for Friedreich's ataxia under the HSE reimbursement scheme.
Deputy Ged Nash - To discuss the recent fish kill on the River Glyde, County Louth.
Deputy Pádraig
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In debates
have discussed this with the Minister for Health. We want all those living with Friedreich's ataxia to have access to Skyclarys as fast as we possibly can. The company made its commercial proposal
line. I have discussed this. I had an official with me yesterday when I met one individual who is living with Friedreich's ataxia and with his parent. The commercial proposal came
behalf of Emma O'Shea from Bantry who was first diagnosed at ten years of age, and others who are living with Friedreich's ataxia, a cruel and relentlessly progressive disease where every single month lost means a permanent loss of mobility and quality of life. Skyclarys
north Cork. As the Taoiseach knows, the Cody family has already suffered the devastating loss of Paudie's younger brother, Rory, to Friedreich's ataxia. Paudie, who is 16, is living with the same cruel condition and his health is deteriorating. I welcome the compassion the Taoiseach showed
into a Government-created loophole.
On my way to the Chamber, I met Emily Felix who is looking for the drug for Friedreich's ataxia. I know the HSE is meeting tomorrow. I would love for that to be examined
bring forward consideration of Skyclarys by the HSE's drugs group. We have about 200 families who are living with Friedreich's ataxia. I am very conscious of this as is the Minister. For the record of the House, I laid out earlier the information I was provided
Deputy Matt Carthy - To discuss the EU pact on migration and asylum.
Deputy Natasha Newsome Drennan - To discuss access to treatment for Friedreich's ataxia under the HSE reimbursement scheme.
The matters raised by Deputies Shane Moynihan, Michael Murphy, Paul Donnelly, Rory Hearne and Gary Gannon, and Conor
know that the Taoiseach is familiar with those who suffer from Friedreich's ataxia, as it has been raised with him in recent weeks. It is now nearly 700 days and the HSE has still not made a decision on the reimbursement for the drug Skyclarys. Other
that body of work now.
If the Taoiseach had watched the programme, he would have seen Emily Felix and other people with Friedreich’s ataxia. Craig Coady from Cork, whose child suffers from the same condition, has lost a child already and his wife is seriously
Gallagher that the pharmaceutical companies need to come to the table as well. I answered a similar question here last week about Friedreich's Ataxia. It is important now that the negotiations are under way and that we get a positive result
raise with the Minister the case of Oisín Pollard. At nine years of age, Oisín was diagnosed with Friedreich's ataxia. For the past 18 years, he has battled on. For most of those 18 years, he was told there was no treatment. Now, for the first time
know a lot of people, as has Deputy Aird, over the past few months like Emily Felix, who suffers from Friedreich's ataxia, and Craig Coady, the parent of two boys who also have that terrible and debilitating disease, one of whom passed away, unfortunately
dedicated to new drugs, specifically drugs for rare diseases.
When I submitted this question, I specifically wanted to talk about Friedreich's ataxia and the drug Skyclarys, which is currently under consideration by the National Centre for Pharmacoeconomics, NCPE, and the drugs group. It is a degenerative disease
parties involved should be delivering this vital medication to the people who need it. Aoife and all of those who suffer from Friedreich’s ataxia want an opportunity to have as good a quality of life as possible. This medication is critical for them. As we speak, people
long-term hospitalisation. She has Huntington's disease. They buried their 13-year-old son Rory, who died as a result of Friedreich's ataxia. Their second son Paudie, who is 15 years old, is dying of the same disease. Skyclarys is not a perfect medicine
constituency a family have already buried one child due to Friedreich's ataxia and their second child is now in a wheelchair due to the same disease, which is advancing. A treatment called SkyClarys is clinically approved and has been shown to slow the progress and the State
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 and dystrophy. The list goes on. Dr. Rónán Collins was before the health committee and I asked
thank the Deputy for raising this again. I was very pleased to have the opportunity to meet many of the people with Friedreich's ataxia whom he brought to the Dáil. I want to highlight to Deputies that, importantly, our drugs budget has increased significantly this year, being
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
serious issue affecting a young woman from my constituency. Emma O’Shea is just 26 years old and is living with Friedreich's ataxia. This is a cruel, fast-moving disease and every month that passes Emma loses more of her independence. There is a treatment called Skyclarys
In parliamentary questions
Ken O'Flynn
Written
decisions for orphan or rare disease medicines over the past five years; the specific timelines applicable in the case of treatments for Friedreich’s ataxia; and whether any delays have arisen in the assessment process for this category of medicines. [29079/26
Ken O'Flynn
Written
Health whether any interim access schemes, compassionate use programmes, or early access pathways are currently available in the State for patients with Friedreich’s ataxia; and whether consideration is being given to enabling access to skyclarys pending a full reimbursement decision. [29080/26
Ken O'Flynn
Written
Deputy Ken O'Flynn asked the Minister for Health the estimated number of patients diagnosed with Friedreich’s ataxia in the State; the number currently under active neurological care; and whether a national clinical pathway or specialised service model exists for this condition. [29082/26
James Geoghegan
Written
Deputy James Geoghegan asked the Minister for Health if the drug skyclarys (omaveloxolone) used for the treatment of Friedreich's ataxia will be made available under licence in Ireland; and if she will make a statement on the matter. [28209/26
Emer Currie
Written
Deputy Emer Currie asked the Minister for Health the latest update on the accessibility of skyclarys for the treatment of Friedreich’s ataxia; the timeline as to when the HSE senior leadership team will make a decision; and if she will make a statement on the matter. [27367/26
Denise Mitchell
Written
asked the Minister for Health if consideration will be given to adding the drug skyclarys which is used in the treatment of Friedreich's ataxia to the drugs payment scheme; and if she will make a statement on the matter. [25182/26
Edward Timmins
Written
Minister for Health the steps that can be taken to bring Ireland in line with other European countries for the treatment of Friedreich’s ataxia (details supplied); and if she will make a statement on the matter. [25231/26
Tom Brabazon
Written
Deputy Tom Brabazon asked the Minister for Health if the HSE will fund the skyclarys drug for those suffering from Friedreich's ataxia. [26084/26
Holly Cairns
Written
treatment Omaveloxolone sold under the brand name Skyclarys will be reviewed given it is the only pharmaceutical treatment available for treating Friedreich's Ataxia; and if she will make a statement on the matter. [26180/26
Pat Buckley
Written
ensure that the HSE urgently prioritizes a conclusion to the skyclarys 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. [26466/26
Robert O'Donoghue
Written
intervene to ensure that the HSE urgently concludes reimbursement negotiations for skyclarys given that it is currently the only available treatment for Friedreich’s ataxia and that the condition may be considered an unmet need under the National Rare Disease Strategy 2025–2030; and if she will make
Jen Cummins
Written
Cummins asked the Minister for Health the specific steps are being taken to ensure the HSE recognises 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. [22549/26
Jen Cummins
Written
decision timeline is being applied to the case to prevent further delay in addressing the need of people with Friedreich’s ataxia. [22550/26
Michael Collins
Written
intervene to ensure the HSE prioritises a conclusion to the reimbursement negotiations for skyclarys, given it is the only available treatment for Friedreich’s ataxia and the unmet clinical need recognised in the national rare disease strategy 2025–2030; and if she will make a statement
Paul Murphy
Written
Paul Murphy asked the Minister for Health the specific steps being taken to ensure the HSE considers the time-critical nature of Friedreich’s ataxia during the current price negotiations for skyclarys; and the way in which the commitments in the National Rare Disease Strategy
Jennifer Whitmore
Written
Deputy Jennifer Whitmore asked the Minister for Health whether she will consider funding the medication skyclarys for people living with Friedreich’s ataxia; and if she will make a statement on the matter. [22147/26
Naoise Ó Muirí
Written
ensure that the HSE prioritises the conclusion of reimbursement negotiations for skyclarys, given that it is currently the only available treatment for Friedreich’s ataxia and is identified as addressing an unmet need under the National Rare Disease Strategy 2025–2030; and if she will make a statement
John Clendennen
Written
John Clendennen asked the Minister for Health for an update on the accessibility of Omaveloxolone (brand name Skyclarys) for the treatment of Friedreich’s ataxia; and if she will make a statement on the matter. [21312/26
Pádraig Mac Lochlainn
Written
Minister for Health the current status of the assessment, pricing negotiations and potential reimbursement approval for Skyclarys (omaveloxolone) for the treatment of Friedreich's Ataxia (FA) in Ireland; when patients can expect a decision on access to this medicine; and if she will make a statement
Micheál Carrigy
Written
Deputy Micheál Carrigy asked the Minister for Health the steps being taken to ensure the HSE considers the "time-critical" nature of Friedreich's Ataxia during the current price negotiations for Skyclarys; the way in which the commitments in the National Rare Disease Strategy
Seán Canney
Written
Deputy Seán Canney asked the Minister for Health when the drug Skyclarys will be reimbursed for patients with Friedreich’s Ataxia (details supplied); and if she will make a statement on the matter. [18731/26
Albert Dolan
Written
asked the Minister for Health the status of the HSE and Department of Health assessment of Omaveloxolone (Skyclarys) for the treatment of Friedreich’s Ataxia; the timeline for completing the reimbursement process; the engagement that has taken place with patient representatives and clinical experts; and if she will
Albert Dolan
Written
Albert Dolan asked the Minister for Health the specific steps the HSE is taking to ensure that the time-critical nature of Friedreich’s Ataxia is fully recognised and reflected in the ongoing price negotiations for the reimbursement of Skyclarys; and if she will make a statement
Albert Dolan
Written
access to approved therapies for rare disease patients, are being applied to the current reimbursement process for Skyclarys for the treatment of Friedreich’s Ataxia; and if she will make a statement on the matter. [18746/26
Louis O'Hara
Written
Deputy Louis O'Hara asked the Minister for Health if the drug Skyclarys (omaveloxolone), used for the treatment of Friedreich’s ataxia, will be made available under licence in Ireland; and if she will make a statement on the matter. [18769/26
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