Ireland to fund drug for rare neuromuscular disease
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Fianna Fáil representatives announced that Ireland’s Health Service Executive (HSE) will begin reimbursing the cost of Skyclarys, a drug for Friedreich’s ataxia, starting on 1 October.
The HSE initially rejected funding for the treatment due to its high cost of €288,000 per patient annually. However, after negotiations, Biogen, the drug’s manufacturer, offered a significantly improved financial arrangement.
Pádraig O’Sullivan, Teresa Costello, and Anne Rabbitte of Fianna Fáil welcomed the news, acknowledging the long wait for those affected by Friedreich’s ataxia, a neuromuscular disease. They emphasised the importance of turning the August approval into actual access to treatment for patients and their families. Independent TD and Minister of State Seán Canney also expressed support, noting the HSE is working to finalise administrative details to ensure a smooth reimbursement process.
The Department of Health stated that the matter is under the purview of the HSE.
