Breaking News: A 28-year-old woman from Co Kilkenny has launched High Court proceedings over delays in a decision on access to a drug used to treat Friedreich’s ataxia, a rare progressive neuromuscular condition. The case raises wider questions for Ireland News readers about how quickly life-altering medicines are assessed, funded and made available through the public health system.
Emily Felix, who was diagnosed with Friedreich’s ataxia at the age of 12, is seeking court orders aimed at compelling the Health Service Executive to make a final decision on the approval, reimbursement and funding of omaveloxolone, marketed as Skyclarys. The drug is designed to slow the progression of the disease rather than cure it, but her legal team argues that any delay matters because deterioration caused by the condition cannot be reversed.
What happened in this Breaking News Ireland case?
The High Court on Tuesday granted permission for Ms Felix to bring a judicial review against the HSE and the Minister for Health. The application was made before Judge Cian Ferriter, who allowed the challenge to proceed. The matter is expected to return to court in September.
At the centre of the dispute is the HSE’s ongoing consideration of a reimbursement application for Skyclarys. Public access to many new medicines in Ireland depends on HSE approval under reimbursement schemes, which can determine whether patients can obtain treatment without bearing the full private cost.
According to the case presented to the court, the reimbursement application has been with the HSE since August 2024. Ms Felix is asking the court to direct the HSE to make a determination and is also seeking an interim access arrangement while the decision remains pending.
- Who is involved: Emily Felix, the HSE and the Minister for Health
- Where: High Court, Dublin
- Issue: Delayed decision on funding and access to omaveloxolone (Skyclarys)
- Condition: Friedreich’s ataxia, a rare inherited progressive disease
- Next date: The case is due to be mentioned again in September
Why the case matters for Health News Ireland
This is not only a personal legal battle. It also speaks to a wider issue in Latest Irish News: how Ireland evaluates and funds high-cost medicines for rare diseases. For patients with degenerative conditions, time can be medically significant. A delay of months can have practical consequences if the illness continues to progress while funding decisions remain unresolved.
In court filings, Ms Felix said she is fighting for her survival. She is now fully reliant on a wheelchair for mobility and requires help with nearly all aspects of daily life. Her legal team says she has experienced significant worsening in her speech, fatigue, swallowing and mobility in recent years.
That context is central to the case. Friedreich’s ataxia is progressive, meaning symptoms worsen over time, and the lost function cannot simply be restored later. Her argument is that a treatment that slows progression is most useful when it can be started before further irreversible decline.
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What is Friedreich’s ataxia and what is Skyclarys?
Friedreich’s ataxia is a rare inherited condition that affects the nervous system and movement. It can lead to problems with balance, coordination, speech, muscle control and everyday functioning. Because it is a progressive disorder, patients often face increasing disability over time.
Skyclarys, the brand name for omaveloxolone, has been authorised at EU level for eligible patients aged 16 and over. It is not described as a cure. Instead, the medicine is intended to slow disease progression, which is why access timing is such an important point in this Irish News case.
The court was told that the medicine received European Commission market authorisation in February 2024 and is available in a number of other EU member states. That fact is likely to remain part of the public debate around whether patients in Ireland are waiting too long for access to innovative medicines that are already in use elsewhere.
How the HSE drug approval process works
For many readers following HSE News and Public Services Ireland, the legal dispute highlights a system that can be difficult to understand. In simple terms, a pharmaceutical company can apply to have a medicine considered for reimbursement in Ireland. That process typically involves pricing discussions and an assessment of cost-effectiveness.
In this case, Biogen made its pricing and reimbursement application to the HSE in August 2024. The National Centre for Pharmacoeconomics, which evaluates whether new medicines represent value for money for the health service, later recommended in December 2025 that omaveloxolone should not be reimbursed.
After that, Biogen continued engagement with the HSE’s Corporate Pharmaceutical Unit and submitted a commercial proposal in May 2026. The application remains under consideration.
That sequence matters because it shows the case is not about whether the medicine exists or has EU authorisation. The dispute concerns the pace and outcome of the Irish reimbursement and funding process.
Key stages in the timeline
- Age 12: Emily Felix is diagnosed with Friedreich’s ataxia
- February 2024: European Commission grants market authorisation for Skyclarys
- August 2024: Biogen submits pricing and reimbursement application to the HSE
- December 2025: NCPE recommends the drug not be reimbursed
- May 2026: Biogen submits a commercial proposal to the HSE
- July 2026: High Court grants leave for judicial review proceedings
- September 2026: Case due back before the court
Why this is one of today’s important Ireland Headlines
Stories like this resonate beyond the courtroom because they touch on fairness, access and the practical realities of living with a rare disease in Ireland. Patients and families often follow News Today and Ireland Headlines looking for updates on healthcare access, particularly when a treatment exists but public funding is still undecided.
The case may also draw attention from advocacy groups focused on rare diseases, disability rights and medicine reimbursement. While the court has not ruled on the substance of the challenge, the fact that the judicial review has been permitted means the issues raised are now set for fuller legal examination.
For the HSE and the State, the proceedings may become a closely watched test of how decision-making timelines are scrutinised when a patient argues that delay itself can cause lasting harm.
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What happens next?
The immediate next step is a further court mention in September. At that stage, the procedural timetable may become clearer, including when full legal arguments will be heard.
Several outcomes are possible, though none has been decided:
- The HSE could make its decision on the reimbursement application before the case is fully argued
- The court could consider whether any order should issue directing a decision
- The request for interim access may become a key issue if the underlying decision remains outstanding
For Ms Felix and others affected by Friedreich’s ataxia, the central question is whether access to treatment can be secured quickly enough to make a meaningful difference.
FAQ: What readers want to know
What happened?
A Kilkenny woman with Friedreich’s ataxia has brought High Court proceedings over alleged delay in an HSE decision on access to the drug Skyclarys.
Is the drug approved in Europe?
Yes. Omaveloxolone, sold as Skyclarys, received European Commission market authorisation in 2024 for eligible patients.
Has Ireland approved reimbursement?
No final reimbursement decision has been made public. The application remains under HSE consideration.
Why is the timing important?
Friedreich’s ataxia is progressive and irreversible. The patient argues that delay reduces the practical benefit of a drug designed to slow decline.
Conclusion
This Breaking News case from Kilkenny is about more than one court application. It highlights the real-world impact of delays in public access to rare disease treatments and may shape wider debate in Health News Ireland and Irish Courts coverage. With the matter due back before the High Court in September, patients, campaigners and policymakers will be watching closely to see whether the State’s decision-making process can move fast enough when time itself is part of the medical emergency.
