Friedreich's ataxia campaigners welcome funding reversal on Skyclarys but warn others face the same fight
Patients with Friedreich’s ataxia have accused Ireland’s health service of forcing them to fight in public for a life-altering medicine, after officials abruptly reversed a refusal to fund the drug Skyclarys.
The Health Service Executive’s senior management team approved reimbursement of the treatment on Tuesday, 25 August, weeks after its own drugs group twice declined to recommend it on cost grounds.
About 200 people in Ireland have the rare, progressive condition, a rare, inherited genetic disorder that causes progressive damage to the nervous system and leads to a loss of muscle coordination.
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