Martin wants quick decision on Friedreich's Ataxia drug
Taoiseach Micheál Martin urged expedited access to Skyclarys, the first treatment for Friedreich's Ataxia, after patients and politicians criticized delays in Ireland's HSE Drugs Group review. The drug is already approved in other European countries, but families like Craig Coady’s and Emily Felix’s face worsening symptoms due to bureaucratic delays, with the HSE citing objective criteria for reimbursement decisions.
Ireland’s Taoiseach Micheál Martin called for an urgent decision on Skyclarys, the first drug approved to treat Friedreich’s Ataxia, after patients and politicians expressed frustration over delays. During a Dáil debate, Sinn Féin leader Mary Lou McDonald criticized the lack of progress, noting the drug was not scheduled for the HSE Drugs Group meeting the following day. McDonald highlighted protests by patients outside Leinster House and in the public gallery, emphasizing that every delay worsens their condition. She urged the government to prioritize access, stating, 'Further delay is intolerable and cruel because there is no pause in this disease.'" "Martin acknowledged the urgency, saying he wanted the drug approved 'as fast as we possibly can' and criticized bureaucratic delays, though he confirmed it would not be decided at the upcoming meeting. Instead, the government aims to address it at the July HSE Drugs Group session. Independent TD Michael Collins also pressed for action, describing Friedreich’s Ataxia as a 'relentlessly progressive disease' and accusing the system of leaving Irish patients behind while the drug is available elsewhere in Europe." "The emotional weight of the issue was underscored by Craig Coady, whose 13-year-old son Rory died eight months earlier from the disease. Coady, whose other son Paudie is also affected, met Martin and described him as 'emotional and sympathetic.' Coady previously stated, 'I lost a son. I don’t want to lose my second son.' Patient Emily Felix, a 28-year-old trainee solicitor from Kilkenny, echoed the urgency, saying her condition is rapidly deteriorating—her swallowing, speech, and mobility are worsening daily. She told reporters, 'For them, it’s only an administrative delay, for me that will be permanent loss that I can never regain.'" "The HSE defended its process, stating decisions on drug reimbursement are based on 'objective, scientific, and economic grounds,' including cost-effectiveness, clinical trials, and resource availability. The agency confirmed Skyclarys remains under review, while Biogen, the drug’s manufacturer, noted it has submitted a revised proposal and is working collaboratively with health authorities. The company highlighted its success in securing access to the drug in 10 countries, including nine in Europe, as part of its commitment to sustainable rare disease treatment solutions.
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