Friedreich's ataxia campaigners to protest in Dublin over drug reimbursement

Campaigners for those living with Friedreich's ataxia (FA) are set to protest in Dublin this Sunday, August 23, to demand that the Health Service Executive (HSE) reimburse the drug Skyclarys. The demonstration will take place at the Garden of Remembrance at 12pm, ahead of an HSE Senior Leadership Team meeting scheduled for August 25 to decide on the drug's reimbursement.

Skyclarys is the first and only approved treatment for FA, a progressive neuromuscular condition that causes nerve damage and mobility loss. While the drug has been approved by the European Medicines Agency, the HSE Drugs Group previously decided against covering it. Critics, including Aontú councillor Peter O’Donoghue, have called on the government to intervene, noting that the annual cost of €280,000 per patient makes it inaccessible to individuals without state funding.

Approximately 200 people in Ireland are estimated to be living with FA. Advocates argue that providing access to the treatment would slow disease progression and improve the quality of life for patients and future generations.