Emily Felix - Friedreich’s Ataxia advocate - 12/078/26

Emily Felix is a trainee solicitor from Gowran, Co Kilkenny who has Friedreich’s Ataxia (a rare neurological degenerative disease). She has been left bitterly disappointed by the HSE Drugs Group’s recommendation on Skyclarys. Many in several European countries can avail of the costly treatment for the rare, inherited genetic disorder and there had been hopes that the Irish State would follow suit in funding it for those in need of it here. However, a meeting yesterday concluded that the price of the drug is substantially higher than what’s considered cost-effective. Their decision will now go before senior management at the health body for a final ruling on the 25th of August.