Rare Diseases & the Road to Reform: Ireland's Drug Reimbursement System Under the Microscope

In this episode of Fianna Fáil: In Our Own Words, host Pádraig O'Sullivan TD sits down with Dr Fiona Kiernan, Health Economist and CEO of Zoom Health Economic and Policy Advisory, to explore one of the most pressing yet under-discussed areas of Ireland's healthcare system — access to treatments for rare diseases. Drawing on her 17 years as a clinician, including five years as a consultant in ICU at Beaumont Hospital, and her subsequent career in health economics, Dr Kiernan offers a unique dual perspective on the challenges patients face when trying to access innovative and life-changing treatments. Topics discussed include: Why rare diseases act as a "canary in the coal mine" for pricing and reimbursement policy How Ireland's current drug reimbursement system was designed for a different era of medicine, and why it struggles to keep pace with modern innovations like gene therapy The stark reality that Irish patients can wait up to 644 days for drug approval, leaving Ireland near the bottom of EU league tables for reimbursement times The growing two-tier divide between public and private patients in accessing high-cost treatments How European neighbours like Germany approach reimbursement differently, and what lessons Ireland can take The Programme for Government commitment to introduce an early access scheme, and what meaningful reform could look like Feel free to let me know if you'd like the tone adjusted — more formal, more conversational — or if you'd like a shorter version for social media.