The HSE Drugs Group has deferred a decision on the public reimbursement of Skyclarys, a treatment for the degenerative condition Friedreich’s ataxia, leaving families in Ireland in an extended period of uncertainty. Following a meeting on Tuesday, the group requested further research and indicated it would review the case again in three to four weeks. The delay impacts patients like 16-year-old Padraig ‘Paudie’ Coady, whose family states he requires urgent access to the medication as his mobility continues to decline.
Did You Know? Friedreich’s ataxia is a rare condition affecting approximately 200 people in Ireland, characterized by a progressive deterioration of the nervous system that impacts motor functions and daily living.
Stakes for the Coady Family
For the Coady family of Buttevant, the delay carries significant emotional and physical weight. Paudie’s father, Craig Coady, stated on the Neil Prendeville Show on RedFM that he is “heartbroken” and “disgusted” by the system, noting that he lost his younger son, 13-year-old Rory, to the same condition in September 2025. According to his father, Paudie now relies on a wheelchair, can walk for only 20 minutes at a time, and has lost the ability to write.
The family’s situation is further complicated by the health of mother Della, who is in the advanced stages of Huntington’s disease. Craig Coady expressed frustration with the current limbo, questioning if the family must look outside Ireland to secure the treatment for his son. A GoFundMe page has been established to assist the family during this period.
Medical Context and Drug Access
Skyclarys is currently not reimbursed by the HSE in Ireland, despite carrying an annual cost of €280,000. While no cure exists for Friedreich’s ataxia, the European Medicines Agency (EMA) has identified the drug as effective in reducing physical impairment. Clinical outcomes include improvements in the ability to perform daily tasks such as eating, bathing, and dressing. The drug has been shown to slow the progression of the disease by as much as 50%.
Political Response and Future Outlook
Local political representatives have called for an expedited process following the latest decision. Cork TD Padraig O’Sullivan described the current administrative process as “deeply unfair and inhumane.” He has requested that the HSE Senior Management Team meet to reach a final decision as soon as the specialist’s opinion is received.
Thomas Gould TD, who has raised the case in the Dail, echoed these concerns, stating that patients cannot be left waiting for months or years for medication. As the HSE prepares for a follow-up review in the coming weeks, the outcome remains conditional on the findings of the requested research. If the HSE Drugs Group finds the additional evidence sufficient, approval could provide a pathway to funding; however, the timeline for potential reimbursement remains subject to the group’s final determination.
Frequently Asked Questions
What is the purpose of the drug Skyclarys?
Skyclarys is used to treat Friedreich’s ataxia, a degenerative disease. It has been found to reduce physical impairment and can slow the progression of the disease by up to 50%.
Why has the HSE not yet approved the drug?
The HSE Drugs Group met on Tuesday but declined to make a decision, opting instead to seek further research. The agency has not yet agreed to reimburse the €280,000-per-year cost of the treatment.
When will the next review occur?
The HSE Drugs Group is expected to review the case again in three to four weeks.
How can the healthcare system better balance administrative oversight with the urgent needs of patients facing rare, degenerative diseases?
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