WBCPC calls attention to patient lived experiences as EU discusses future cancer funding

WBCPC took part in a special meeting of the European Parliament Intergroup on Cancer and Rare Diseases on the eve of World Cancer Day. Members of the European Parliament, patient organisations, healthcare professionals, and civil society representatives joined the discussion as negotiations begin on the next Multiannual Financial Framework for 2028 to 2034.

Participants discussed how the EU can sustain the momentum created by Europe’s Beating Cancer Plan and the EU Mission on Cancer. Speakers stressed that continued political commitment and adequate funding remain essential. Without them, recent progress in cancer prevention, care, research, and survivorship could weaken, with direct consequences for people affected by cancer across Europe.

Cancer continues to pose a major public health challenge in the EU. Each year, 2.7 million people receive a cancer diagnosis and 1.3 million die from the disease. More than 30 million Europeans live with a rare disease, including over 5 million people affected by a rare cancer. Participants highlighted that underinvestment in health affects not only patients and families, but also Europe’s workforce, resilience, and long term competitiveness.

Putting lived experience at the centre of EU policy

During the meeting, Alex Filicevas, Executive Director of the World Bladder Cancer Patient Coalition and Chair of WECAN, addressed Members of the European Parliament. He focused on how EU policy decisions shape real experiences for people living with cancer.

He opened his intervention with the story of a woman diagnosed with bladder cancer after early symptoms were treated as something minor. When doctors later confirmed the diagnosis, the cancer had reached a more advanced stage. She required radical surgery that had a significant impact on her quality of life. He explained that many patients across Europe share similar experiences, and that outcomes often depend more on where someone lives than on their individual needs.

Alex Filicevas highlighted how tools such as the European Cancer Inequalities Registry help expose inequalities in cancer care. Patient organisations can use this data to connect lived experience with evidence and to support informed advocacy with governments and health systems.

EU investment that supports better care

Alex Filicevas also underlined the practical impact of EU4Health funding. He highlighted BCLEAR, the first EU funded project of its kind in bladder cancer. The project focuses on health literacy and shared decision making. It helps patients understand their disease, know when to act, and feel more confident discussing treatment options with healthcare teams.

He also referred to the EU Mission on Cancer and the new ways of working it has created. Initiatives such as ECHoS help translate EU cancer policy into action by connecting policy, practice, and people, from prevention and screening through to treatment and survivorship.

The meeting concluded with the launch of a joint declaration from the European Parliament Intergroup on Cancer and Rare Diseases. The declaration calls for stronger and clearer commitments to health, cancer, and rare diseases in the next EU budget. WBCPC welcomes this call and remains committed to ensuring that patient perspectives continue to shape EU level decision making.

To help inform the European Parliament’s upcoming report on Europe’s Beating Cancer Plan, stakeholders are invited to contribute their experiences and evidence via a survey hosted by the Intergroup on Cancer and Rare Diseases, open until 15 February 2026.