HSE Refuses Life-Saving Drug for Rare Disease | Dublin News

Sinn Féin’s Mary Lou McDonald is demanding action from Taoiseach Micheál Martin over the HSE’s refusal to fund a life-changing drug for Friedreich’s ataxia, a rare disease that steals mobility and coordination — with this treatment proven to slow progression by 55%. Already approved in the U.S. and EU, it’s blocked in Ireland due to cost and clinical data concerns, leaving patients desperate as others across Europe provide access. McDonald’s urgent appeal calls for transparency, immediate patient hearings, and fast-tracked HSE meetings — backed by Fianna Fáil’s own 60+ MPs who argue the decision ignores public and political will. The HSE insists the drug’s price exceeds Ireland’s cost-effectiveness thresholds, creating a tense standoff between medical need, financial reality, and the ticking clock for those losing function daily. Listen in comfort:Get a discount on a Soli Pillow: http://solipillow.com/discount/dnn. Advertise on DNN:[email protected] This is an automated, high-level news summary based on public reporting.Report issues to [email protected]. View sources & latest updates:https://sources.thednn.ai/79a823ba6b718ca2