Campaigners Make Final Appeal to HSE Over Skyclarys Drug Access

Campaigners and politicians are making a final plea to Ireland's Health Service Executive (HSE) to approve the drug Skyclarys for individuals suffering from Friedreich's Ataxia. This rare, progressive neuromuscular condition affects approximately 200 people in Ireland. The HSE's senior management team is set to make a final decision on August 25, following a recommendation from the HSE Drugs Group earlier this month against covering the treatment. Jessie Abbey, 31, who has Friedreich's Ataxia, spoke at a public meeting in Dublin, urging the HSE to approve the drug. "I want to live. I have everything to live for. I want to see my little girl grow up," she said, expressing the emotional toll of publicly advocating for her health. Abbey described her deteriorating condition, noting, "Three years ago, I could walk, I'm now in a wheelchair, what's the next three years going to look like?" Shanice O'Reilly, another individual with the condition, also appealed to the HSE, stating, "They need to give us a chance." She noted positive experiences of people taking the drug in America. Isabella Travers, diagnosed at 12 and now a full-time wheelchair user, questioned the HSE's valuation of lives, saying, "It's so hard, I don't understand how they don't think that our lives are worth the money." Several opposition parties, along with members of Fianna Fáil and Fine Gael, support the drug's approval. The HSE cited an assessment from the National Centre for Pharmacoeconomics, which found limitations in the clinical efficacy data for Skyclarys. The assessment also concluded that the drug's current price of around €280,000 per patient annually, with a five-year impact of €130 million, is substantially above typical cost-effective levels in Ireland.

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I want to live. I have everything to live for. I want to see my little girl grow up.