Jennifer Carroll MacNeill points to a €4bn medicines bill and a reformed approval system, but opposition deputies warn that strategies are failing patients
Ireland’s minister for health has defended the government’s approach to rare diseases, insisting a system “based on science” is delivering faster access to costly orphan medicines, even as opposition deputies accused the state of administrative neglect and warned that patients are losing function – and, in some cases, their lives – while reimbursement decisions drag on.
Opening statements in the Dáil on Thursday, Jennifer Carroll MacNeill framed the debate around patients rather than process, acknowledging the roughly 300,000 people in Ireland – one in 17 – living with a rare disease. She invoked the “diagnostic odyssey” familiar to many families: the long search for an answer, “which often leads to years of uncertainty in which symptoms progress, but answers do not come”.
At the centre of her argument was the National Rare Disease Strategy 2025-2030, published last August, which she said gives Ireland “a clear national framework for improving diagnosis, treatment and support”. A three-year implementation plan is being finalised, with early priorities including data registries and the expansion of newborn screening, which now covers 11 conditions after the addition in April of severe combined immunodeficiency and spinal muscular atrophy.
