Celebrating progress: Reflecting on five years of global advocacy for bladder cancer

At the World Bladder Cancer Patient Forum 2024, a fireside chat style conversation featuring Dr Lydia Makaroff, outgoing President of the World Bladder Cancer Patient Coalition (WBCPC), and Alex Filicevas, Executive Director of WBCPC, provided an opportunity to reflect on the Coalition’s achievements over its first five years. The discussion highlighted the progress made in bladder cancer patient advocacy, awareness, and support, while also considering the road ahead.

The coalition, founded in 2019 with three founding members has grown to include 15 organisations across 12 countries today. By fostering collaboration between established groups and supporting the formation of new ones, the coalition has expanded its reach, creating a more inclusive and representative network globally. This growth has enabled patient advocates to contribute more effectively to national and international health policy discussions.

One of the World Bladder Cancer Patient Coalition’s significant achievements is the Global Bladder Cancer Patient and Carer Survey, which gathered insights from over 1,200 respondents worldwide. The findings have been published in the European Urology and presented at several scientific conferences including EAU, SIU and World Cancer Congress, providing a valuable evidence base to support advocacy efforts. These data have been used by member organisations to inform national policy initiatives and bringing stakeholders together to advocate for improvement of bladder cancer patient care in their communities.

Bladder Cancer Awareness Month (BCAM) has also become a cornerstone of the global community efforts. An exciting step has been the introduction of the Unsure Icon, a symbol emphasising the uncertainty surrounding symptoms such as blood in the urine and the importance of seeking timely medical advice. This initiative has united organisations globally and supported grassroots awareness campaigns, and in particularly in low- and middle-income countries, through dedicated BCAM grants. The number of applications for these grants has increased significantly, from seven in 2022 to over 100 in 2024, demonstrating growing interest and impact with 4 grants awarded in 2024.

Reflecting on the broader contributions of WBCPC, Alex Filicevas noted:

The fireside chat also explored the Coalition’s evolving role in the global patient advocacy landscape. Balancing the diverse needs of organisations in different countries remains a key challenge. The coalition aims to strengthen its capacity-building efforts, ensuring that all member organisation can actively participate in advocacy and awareness initiatives tailored to their local contexts whilst also helping each other.

The partnerships with healthcare professionals and organisations were highlighted as essential to WBCPC success. Collaborative projects, such as improving access to diagnostics, promoting shared decision-making in treatment, and advocating for patient voice in Health Technology Assessment processes across the world, were identified as areas for continued focus.

Lydia Makaroff shared her reflections, saying, “It has been a privilege to work with such a dedicated and resourceful community. From evidence-based advocacy to establishing new member organisations, we have made meaningful progress together.”

The fireside chat offered a thoughtful overview of the WBCPC journey, providing inspiration for the work still to come for everyone in the community. The session reaffirmed the  joint commitment to ensuring that no bladder cancer patient or carer is left unsupported, no matter where they live.

Watch the full recording of the session, Celebrating Progress: Reflecting on Five Years of Global Advocacy for Bladder Cancer, on the WBCPC YouTube Channel.