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HSE approves Skyclarys reimbursement for patients

Updated 4 times since CLSTR started tracking revisions of this situation.

What changed

2026-08-24 15:34 UTC → 2026-08-25 13:41 UTC · added removed

Irish HSE approves Skyclarys funding dispute reimbursement for patients

The HSE Drugs Group has had previously recommended against state funding for Skyclarys, a treatment for Friedreich’s ataxia, following a review citing high costs of reimbursement for patients under state schemes. approximately €280,000 per patient annually. While the drug is approved by the European Medicines Agency to slow disease progression, advocacy group Care Champions described the recommendation as ‘disgraceful,’ noting the condition affects roughly 200 people in Ireland. Following this recommendation, Irish groups and politicians have urged the HSE to reconsider. Representatives from Fianna Fáil expressed concern, with TD John McGuinness noting that backbench TDs signed a letter reconsider, arguing that cost should not be the overriding factor when lives are at stake. The National Centre for Pharmacoeconomics cited On August 25, the high cost HSE Senior Management Team approved the reimbursement of approximately €280,000 per patient annually, stating a “significant price reduction” is necessary. Senator Robbie Gallagher has called Skyclarys for government leaders to meet patients in Ireland living with campaign groups before Friedreich’s Ataxia. The decision followed intensive discussions with the HSE senior leadership team makes manufacturer, Biogen, which provided a final decision, scheduled for August 25. In response “substantially improved financial offer” to the funding impasse, families and advocates held HSE. Although the treatment is not a march in Dublin cure, it has the potential to demand access. Critics, including Aontú councillor Peter O’Donoghue, have called for government intervention, emphasizing that slow the high annual cost makes progression of the treatment inaccessible neurodegenerative disorder by up to those without state support. As 55 per cent. The condition affects approximately 200 people in Ireland, often leading to severe coordination and movement issues. Following the decision deadline approaches, approval, Taoiseach Micheál Martin met with affected families to discuss the urgency of accessing the treatment. During these meetings, patients and their families made emotional pleas expressed support for government intervention, highlighting the devastating impact of the condition on mobility and independence. Meanwhile, the drug’s manufacturer, Biogen, stated it is working closely with decision, while Tánaiste Simon Harris noted the HSE to facilitate access to treatment as quickly as possible. importance of a robust statutory process for accessing innovative medicines.

Versions

  1. 2026-08-25 13:41 UTC HSE approves Skyclarys reimbursement for patients
  2. 2026-08-24 15:34 UTC Irish HSE Skyclarys funding dispute
  3. 2026-08-23 12:53 UTC Irish HSE Skyclarys funding dispute
  4. 2026-08-19 14:16 UTC Irish HSE Skyclarys funding dispute
  5. 2026-08-14 12:06 UTC Irish HSE Skyclarys funding dispute

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