HSE to consider covering cost of Friedreich's Ataxia drug

The HSE Drugs Group has advised against covering the cost of Skyclarys, a drug for Friedreich's Ataxia, until further review. Initially disapproving of the drug, the group has reconsidered a report from the Rare Diseases Technology Review Group that favors its introduction. The HSE's final decision on the matter is set for a meeting of senior management on August 25th.

Around 200 individuals in Ireland live with this rare neurological disease and have been advocating for Skyclarys, which is the first treatment available for the condition. Campaigners expressed their disappointment and vowed to continue their fight for the drug. The HSE's recommendation was based on a review of data and submissions from Friedreich's Ataxia patients, their doctors, and advocacy groups, taking into account the drug's cost and the impact on the HSE's resources.

The National Centre for Pharmaeconomics had previously recommended against the HSE providing the drug due to its lack of cost-effectiveness, with an estimated annual cost of €280,000 per patient and a five-year budget impact of around €130 million. Biogen, the drug's manufacturer, continues to engage with the HSE. In a recent development, the High Court granted permission to Emily Felix, a woman with Friedreich's Ataxia, to challenge the HSE's delay in granting her access to the drug.