World Bladder Cancer Patient Forum 2023 – Uniting bladder cancer advocates from around the world

The 3^rd World Bladder Cancer Patient Forum 2023 brought together our community in Madrid, Spain, with participants joining online as well. This year’s Forum was a milestone event for our international community as we brought together bladder cancer patient advocates from around the world. It was a day full of important conversations, sharing ideas whilst learning and empowering each other.

This year, we focused on understanding bladder cancer patients’ supportive and complementary needs. Throughout the day, we saw presentations and hosted knowledgeable discussions with speakers from around the world. Our speakers shared their perspectives from their own experiences and points of view:

• Dena Battle, President and Co-Founder of KCCure shared her journey with the organisation and how the patient community can really help drive positive change in clinical practice and patient care.
• Michelle Colero, Executive Director of Bladder Cancer Canada, presented the Global Bladder Cancer Patient and Carer survey data, focusing on Supportive and complimentary care needs.
• Petros Grivas, Clinical Director of the Genitourinary Cancers Program at the University of Washington Fred Hutch Cancer Center, joined Dr Lydia Makaroff for a conversation about the latest research developments in bladder cancer and what to look forward to in the coming years.
• Lauren Pretorius, CEO of Campaigning for Cancer, shared a project called Fika-Phila aimed at removing travel barriers in South Africa to allow patients to travel to and access their treatment without delay.
• Carl-Henrik Sundin, Founder of the Swedish Bladder Cancer Society, shared his story, detailing the different steps of starting an organisation for patients with bladder cancer – drawing from his very own experience of doing so.

Alongside the presentations, we also hosted a panel discussion moderated by Dr Lydia Makaroff on addressing patients’ needs in practice. We invited five speakers to share their perspectives, drawing from personal and professional experiences.

• Helen Lacy, Bladder cancer patient and advocate, Australia

“It is fundamental that healthcare professionals treat the cancer patient as a person rather than a pathology. Understanding who the person is as an individual is fundamental in order to plan the journey of that patient.”

• Lara Fernandez Rodriguez, Psycho-oncologist at GEPAC, Spain

“There are specific needs in Spain that are not adequately covered by the public healthcare system, particularly in the realm of psychological support. It is vital to provide patients with the utmost support, especially in matters concerning their mental well-being before, during and after treatment.”

• Dr Silke Guenther, Director Global Medical Affairs, Merck, Germany

“Ensuring patients have access to essential resources is fundamental. Collaboration and providing training on how to raise awareness of how to best support cancer patients is key and an area that needs to be improved.”

• Comfort Maluleke, Senior Case Manager at Campaigning For Cancer, South Africa

“Financial support is the cornerstone in bridging the gap for patients to access their treatments. In many countries in the world, the specific care cancer patients require may be out of reach or unaffordable, making this financial support vital.”

• Mélanie Samson, Senior Manager, Capacity Building at UICC, Switzerland

“What needs to change is that we need to further incorporate patients into the decision-making process. It is imperative to institutionalise patient cancer advocacy all around the world.”

The World Bladder Cancer Patient Forum 2023 once again connected our friends and colleagues. It allowed for the sharing of best practice in our community, exchanging patient experiences and challenges while exploring opportunities for improvement together and fostering our close-knit community of bladder cancer patient advocates.

Check the WBCPC YouTube Channel for the recording of the event coming soon. The event report will follow, which aims to capture the essence of the day’s discussions. Stay tuned!