Irish HSE faces decision on €280k-a-year Friedreich’s ataxia drug

Pressure is mounting on Ireland’s Health Service Executive (HSE) as senior management prepares to decide whether to reimburse Skyclarys, a drug used to treat Friedreich’s ataxia. The medication, which can slow the progression of this rare, degenerative neuromuscular disease, costs approximately €280,000 per patient annually.

Taoiseach Micheál Martin recently met with affected families to discuss the urgency of accessing the treatment. During these meetings, patients and their families made emotional pleas for government intervention, highlighting the devastating impact of the condition on mobility and independence. While Skyclarys is approved for use in several other EU countries, the HSE Drugs Group has previously recommended against reimbursement, citing concerns over clinical effectiveness and high costs.

In response to the looming decision, opposition politicians have called for the Minister for Health to intervene. Meanwhile, Biogen, the manufacturer of the drug, stated it is working closely with the HSE to facilitate access to treatment as quickly as possible.