HSE approves Skyclarys reimbursement for Friedreich’s Ataxia patients

The Health Service Executive (HSE) Senior Management Team has approved the reimbursement of Skyclarys for patients in Ireland living with Friedreich’s Ataxia. The decision follows intensive discussions with the US biotechnology company Biogen, which provided a substantially improved financial offer to the HSE.

Earlier this month, the HSE Drugs Group had recommended against reimbursement due to concerns regarding cost-effectiveness and clinical evidence. The drug, which costs approximately €288,000 per patient annually, is not a cure but has the potential to slow the progression of the neurodegenerative disorder by up to 55 per cent.

Friedreich’s Ataxia is a rare, inherited condition affecting the nervous system, often leading to severe coordination and movement issues. Approximately 200 people in Ireland are affected by the disorder. Taoiseach Micheál Martin expressed support for the decision, while Tánaiste Simon Harris noted the importance of a robust statutory process for accessing innovative medicines.