HSE and NCPE Urged to Approve Reimbursement of Rare Disease Drug for Irish Patients (rte.ie)

• HSE and NCPE urged to fast-track rare disease drug reimbursement.
• Drug already available in other EU countries; Irish patients face delays.
• Campaign stresses urgency for time-sensitive muscle condition.

"Patient advocates and clinicians are pressing the HSE and NCPE to approve reimbursement of a rare disease drug, citing delays that deny Irish patients life-saving treatment. The drug, targeting a progressive muscle condition, is already available in other EU countries. The campaign emphasises 'time is muscle' to highlight urgency. A decision is pending after prolonged price negotiations."