Welcome for delivery of hope for Mayo families affected by Friedreich’s Ataxia

Minister of State Alan Dillon has welcomed the HSE’s decision to approve reimbursement of Skyclarys for patients with Friedreich’s Ataxia, saying it will bring relief to many families across Mayo and the west who have been deeply affected by this devastating condition.

Minister Dillon has been actively engaging with Minister for Health Jennifer Carroll MacNeill and senior HSE officials to press for progress, noting that today’s announcement reflects the value of that continued engagement and the shared determination to support affected families.

The HSE’s senior management team approved reimbursement following a substantially improved financial offer from Biogen.

While acknowledging the drug’s limited efficacy, high cost, and clinical uncertainties, the SMT recognised the significant unmet need faced by patients with this progressive, life‑limiting disease and the absence of alternative treatments.

Minister Dillon said: “This is an important and very welcome step forward. I am delighted for the many families in Mayo and across the West who have been waiting anxiously for progress.

"Their courage, persistence, and advocacy have been extraordinary. Today’s decision will give hope where it is urgently needed.”

He added: “I want to acknowledge the commitment of Minister Carroll MacNeill and senior HSE officials throughout this process.

"Their determination to finding a solution has been evident, and I want to acknowledge the constructive approach taken by all involved.”

Engagements between the HSE and Biogen are now underway to finalise the administrative arrangements required to implement reimbursement. Both parties have committed to concluding these details quickly.