EAU Patient Day session on bladder cancer
The World Bladder Cancer Patient Coalition co-developed the Bladder cancer session at the Patient Day of the European Association of Urology Congress 2022. The session was chaired by the WBCPC President, Dr Lydia Makaroff and Dr Eammon Rogers, Chair of the EAU Patient Information Office.
We were delighted to welcome patient advocates and our bladder cancer patient group community to the session. The EAU Patient Day Bladder Cancer session took place in-person for the first time. It brought together speakers from the WBCPC member organisations in Europe, showcasing examples of patient-led information resource development, building-up of patient groups and actively working to promote better care and better access to innovation for bladder cancer patients.
Evidence-based approaches to patient support
Alex Filicevas – Executive Director, World Bladder Cancer Patient Coalition
Alex Filicevas, Executive Director of WBCPC, opened the bladder cancer session by sharing critical early data from the WBCPC “Global bladder cancer patient survey”. The early insights show that bladder cancer patient information needs are not fully met at diagnosis but also during and after the active treatment phase. Unfortunately, bladder cancer patients are not signposted enough towards patient groups and peer support that might be available to them, and that’s an area where collaboration between patient groups and urologists is essential.
Helping patients find the hospital that is right for them
Alessandro Boni, Associazione PaLiNuro
Alessandro Boni showcased the success story of the URO-H Advisor, a platform that WBCPC member organisation Associazione PaLiNUro developed in Italy. This platform was created to guide people in choosing the most competent, effective and humane hospital for treating bladder cancer. Its ambition is to make patients feel more in control of their bladder cancer by providing patients with a resource listing all the necessary information to make the right choice for them.
Building community at a national level
Liesbeth De Boer-Oosterhuis, Leven met blaas-of nierkanker
Liesbeth De Boer-Oosterhuis followed up by going over the success story of the newest WBCPC member organisation Living with bladder and kidney cancer creation. She shared that the Netherlands have a solid framework to support patient organisations with funding to ensure each organisation can support its patients as best it can. Additionally, the organisation works with a much larger Dutch cancer umbrella organisation to provide the necessary knowledge that bladder cancer patients need. Through government funding and by collaborating with a much larger organisation, living with bladder cancer, which volunteers currently run, can better support its members – people affected and living with bladder cancer.
Liesbeth also highlighted that it is vital for patient organisations to exist and represent patients to create an environment where we talk with patients and not just talk about patients without their presence.
Advocating for equitable access to treatment
Lori Funk-Cirefice, Cancer Vessie France – Les Zuros
Lori Funk-Cirefice closed this session by emphasising the importance of patient organisations’ understanding of the regulatory field when it comes to access to therapeutic innovations. When Lori began her journey at Cancer Vessie France – Les Zuros, especially when it comes to medicine assessments, she had to develop a comprehensive understanding of what Health Technology Assessment (HTA) is and how patients can contribute to HTAs. Due to the complicated nature of this topic, Lori benefited from various training resources, which are becoming increasingly available through regulatory and HTA bodies and patient communities such as EUPATI or WECAN. These comprehensive resources allow patient advocates to build knowledge and confidence in HTA processes, which leads to meaningful contributions and, subsequently better chance for access to valuable therapies and care.
Lastly, Lori stated the importance of patient organisations working together with the pharmaceutical industry and the national healthcare system to anticipate drug shortages and create contingency plans for patient.
Best Patient Poster Award goes to bladder cancer patient
The Patient Day also featured Patient Poster Presentations with the top 3 winners, Mrs. Sarah Collen, Ms Saran Green and Ms Melanie Costin, awarded for their patient posters. Amongst them, WBCPC member organisation in the United Kingdom, Fight Bladder Cancer, represented by Melanie Costin, presented a poster titled Solutions for supporting deprived populations of patients and carers, which was awarded alongside two others. Congratulations to the winners and special bladder cancer patient organisations striving to provide support and information to people affected by the disease.