Real stories. Real solutions. A shared commitment to change.

The UCAN Drug Access Team had a very positive initial meeting with Minister Jennifer Carroll MacNeill TD at the Department of Health this week. We presented two urgent priorities that align with the Programme for Government and offer real potential to improve cancer care in Ireland:

  • A national Early Access Programme for breakthrough treatments
  • Reform of the drug reimbursement system

We shared personal stories that highlight how delays, inequities, and systemic barriers are failing patients, stories of time lost, hope deferred, and unnecessary suffering. Crucially we also came with ideas for solutions in both areas and offered to work with the Minister to help deliver these.

Early Access: A Fairer Path to Innovation

Before 2019, all Irish patients faced long delays in accessing new cancer drugs. Today,  public patients remain disadvantaged, as private insurers now offer access to most drugs upon EMA approval. This has created a two-tier system, especially harmful in areas of high unmet need.

UCAN has reviewed successful models across Europe and engaged with stakeholders from industry and clinical sectors. A recent industry proposal offers a strong foundation, outlining:

  • Application process
  • Eligibility criteria
  • Funding mechanisms
  • Estimated costs
  • Integration into standard reimbursement

However, it lacks the voices of patients and payers, voices that must be central. With 29 of 35 European countries already operating similar schemes, Ireland can move quickly. This initiative could be ringfenced from broader reimbursement reviews and supported by horizon scanning provide the opportunity real-world data collection in Ireland.

This is about more than policy—it’s about survival, quality of life, and hope. Patients should not be forced to fundraise or travel abroad for access. The burden must shift from individuals to the system.

 Reimbursement Reform: From Adversarial to Accountable

Ireland’s drug reimbursement system remains slow, opaque, and unnecessarily adversarial. Patients continue to face long delays and are often subjected to public commentary that adds distress to an already difficult journey.

At 644days on average for oncology medications to get reimbursed and with only 25% of the latest medicines the issue requires immediate attention.

To address this, UCAN is calling for the establishment of an independent oversight committee to review the entire reimbursement pathway, from EMA approval to patient access. This committee should be:

  • Time-bound, with a clear 12-month mandate
  • Led by a senior, credible chair
  • Inclusive of all key stakeholders: patients, payers, clinicians, HTA experts, and industry representatives

The new Health Technology Assessment regulation (HTAR) presents a timely opportunity to rethink and redesign this process. With the right leadership and collaboration, we can move from delay and division to transparency, efficiency, and trust.

Next Steps: Collaboration for Systemic Change

While these two priorities are our starting point, UCAN is committed to addressing broader systemic issues—from access to innovative therapies like cellular treatments and radioligand therapy (RLT), screening programs as well as  long-term funding and capacity planning.

We look forward to working with Minister Carroll MacNeill, the Department of Health, HSE, and other key stakeholders to co-create solutions. UCAN has demonstrated credibility, collaboration, and a data-driven approach. Ongoing close engagement will drive progress and accountability.

A Shared Vision for a New Era

We have a unique opportunity to deliver a step change in cancer care. UCAN is here to ensure that change is shaped by the voices of those who live it.

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