Irish politicians urge HSE to fund Friedreich's Ataxia drug

Irish politicians are calling for the Health Service Executive (HSE) to reimburse the drug Skyclarys for patients with Friedreich's Ataxia. The rare genetic condition affects approximately 200 people in Ireland, causing progressive damage to the spinal cord, brain, and peripheral nerves. While Skyclarys has been approved by the European Medicines Agency to slow disease progression, the National Centre for Pharmacoeconomics has not recommended reimbursement due to its high cost of approximately €280,000 per patient annually, stating a “significant price reduction” is required.

Fianna Fáil representatives, including TD John McGuinness and Senator Robbie Gallagher, have expressed shock and concern over the decision. McGuinness noted that backbench TDs have signed a letter urging reimbursement, arguing that cost should not be the overriding factor when lives are at stake. Senator Gallagher has called on the Taoiseach, Tánaiste, and Health Minister to meet with the Friedreich's Ataxia campaign group before a final decision is made by the HSE senior leadership team on August 25th. Gallagher pointed out that 11 other EU countries already reimburse the drug.