UCAN Ireland is proud to have collaborated with Rare Diseases Ireland (RDI)  and IPPOSI to unite patient voices in calling for urgent reform of Ireland’s drug reimbursement system and the establishment of an early access scheme for key EMA-approved medicines.

At the recent IPPOSI Health Innovation Roundtable, UCAN Secretary Martin Sweeney represented our community, contributing to discussions on how Ireland can deliver timely and equitable access to innovation.

Panellists agreed that Ireland urgently needs a formal Early Access Scheme to keep pace with medical innovation.

Dr. Michael McCarthy of University Hospital Galway warned that early access must be linked to an efficient follow-on reimbursement process, so patients are not left stranded once a scheme ends. Evidence gaps were also noted: while common cancers often benefit from strong trial data, rare cancers frequently lack sufficient evidence, leaving patients at a disadvantage.

Equity and patient impact were central concerns. Cathy Gray of the Marie Keating Foundation reminded the panel that “access equals time—and time can mean survival.” Ireland’s two-tier health system creates stark disparities, leaving many patients waiting years for reimbursement decisions. Martin Sweeney reinforced this point, sharing peer experiences that underscored the need for an equitable system that gives every patient an equal chance to live well.

You can read the report from the day here

In addition, Miriam Staunton, UCAN Chair, attended the Dáil AV Room in support of RDI’s call for reform and early access. Cancer and rare disease patients share many of the same challenges when it comes to accessing innovative medicines, and together we are amplifying the patient voice to demand change.

Our Key Ask

We are asking supporters to email the Minister for Health and urge her to:

Direct the Department of Health to establish a time-bound, multi-stakeholder group in January 2026 to review and make recommendations on reforming Ireland’s reimbursement and access pathways. In addition implement an Early Access Scheme to ensure access to critical medicines while reimbursement decisions are pending.

Use our Email template to make your voice heard.

This is a pivotal moment. The new EU HTA regulation offers an opportunity for redesign of the reimbursement process. With Ireland set to assume the EU Presidency in 2026, we must seize the opportunity to ensure patients benefit from innovation without delay. Together, we can make access fair, timely, and patient-centred.