HSE Drugs Group recommends against funding Skyclarys for Friedreich’s ataxia

The HSE Drugs Group has recommended against state funding for Skyclarys, a treatment for Friedreich’s ataxia. The recommendation follows a meeting to consider reimbursement for patients with medical cards or other state schemes.

Friedreich’s ataxia is a progressive, hereditary neuromuscular disease that affects the nervous system and heart. While no cure exists, Skyclarys has been shown to slow disease progression and improve neurological function. The drug has received approval from the European Medicines Agency and the FDA, and is available in several other European countries.

Advocacy group Care Champions described the recommendation as ‘disgraceful,’ noting that approximately 200 people in Ireland are affected by the condition. The HSE stated that its decision-making process considers clinical evidence, patient benefits, and the impact on overall health service resources. A final decision will be made by senior HSE management on August 25.