A Kilkenny TD has called on senior politicians to intervene after claiming the HSE continues to delay funding for a life-changing rare disease drug.
Deputy Natasha Newsome Drennan raised the case of young Kilkenny resident Emily Felix in the Dáil, who lives with the rare genetic disorder Friedreich’s Ataxia.
While the treatment drug Skyclarys is already available to patients across the European Union, the HSE has yet to make a reimbursement decision for Irish citizens.
Deputy Newsome Drennan says she has asked Micheál Martin to step in directly and arrange an urgent meeting between patients and the Minister for Health, noting; “The Minister for Health won’t even meet these families, they get generic replies, they feel helpless, even though the Taoiseach admitted the situation is urgent and serious but offered no timeline, no action, no binding decision, talking to the Minister again is just not good enough, time is precious for young adults like Emily and Oisin”.
