ECPC wants to contribute to raise awareness about bladder cancer. The White Paper launched in April 2016 is an appeal to policy makers, the scientific and medical community to reduce the burden of bladder cancer on patients.
Rationale of the initiative
The idea of this initiative came from ECPC member organization PaLiNUro from Italy that contacted us in 2015 signaling that “while information and patient support is far advanced in many solid tumours, it is still lacking for bladder cancer”. They also suggested ECPC that “a strategy aimed at joining efforts under a common platform would bring advances in the field”. It was PaLiNUro making a research identifying the active patient groups in Europe and it was still PaLiNUro that put us in touch with Andrew Winterbottom, Founder and Director of Fight Bladder Cancer UK that became the coordinator of ECPC activities devoted to bladder cancer. ECPC will always react to such proposals coming from our member organisations especially as this falls within ECPC's strategic goal to provide underrepresented cancer patients across Europe with reference information regarding their condition and to potentiate the capacity of larger national ECPC member to provide support.
EU involvement on bladder cancer
The EU has been quite ambitious in supporting EU Member States in the development of cancer screening programmes supplemented with guidelines for breast, cervical and colorectal cancer. However, not all cancers have been treated equally, and bladder cancer is actually the 5th most common cancer in the western world and the 2nd most frequent malignancy of the urinary tract after prostate cancer. Despite a prevalence for both sexes of 13, 07 % in the EU27 with figures from 2012 (IARC), bladder cancer is highly overlooked by decision-makers and the pharmaceutical industry, despite its high prevalence. Moreover, it results in serious morbidity and mortality. Bladder cancer is also a very heterogeneous disease rending research efforts to characterize it very complex and current research funding is insufficient. Health remains a national competence but European coordination in the fight against cancer has shown its added value and much more can be achieved through coordinated activities.
The paper below aims to raise the profile of the disease in Europe by describing the various treatment, prevention and diagnosis solutions and guidelines, tackling the disease’s challenges and threats and delineating novel opportunities, in the hope to raise awareness, better educate policymakers and fine-tune bladder cancer policies in the interest of current and future patients and the society in general.
ECPC Paper on Bladder Cancer can be read by clicking here.
The pdf is interactive, feel free to click on menu to the left to navigate through the paper.
Launch of the paper on the 20 of April 2016
Click on each presentation to download it
Click here for all the pictures of the Bladder event.
ECPC Expert Group on Bladder Cancer that worked on the White Paper is composed of:
Bladder cancer experts (in alphabetical order):
- Dr Joaquim Bellmunt, Cancer Institute - Hospital Universitari Dexeus Quiron Group with the direction of the Bladder Cancer Center at DFCI and Dana-Farber/Brigham and Women's Cancer Center, Harvard University, Boston, USA. Cooperates with the Oncology Department at the Hospital del Mar and the European Association for Research and Treatment of Cancer (EORTC);
- Dr Petros Grivas, Hematology and Oncology, Cleveland Clinic Main Campus;
- Dr Andrea Necchi, medical oncologist at the Fondazione IRCCS Istituto Nazionale dei Tumori in Milan;
- Tom Powles, Lead for solid tumor research at Barts Cancer Institute (BCI); Lead for the genitourinary (GU) cancer group at BCI, United Kingdom.
Urologists (in alphabetical order)
- Colin P Dinney, Urology, Cancer Center Support Grant (CCSG) Programs, University of Texas, United States;
- Neal Fleshner, Head of Division of Urology, Princess Margaret Hospital, University Health Network; Chair of Urology, Department of Surgery, University of Toronto ;
- Dr Nuria Malatts, scientist, Centro Nacional de Investigaciones Oncológicas; Member of the Scientific Board of the European Society of Urological Research (ESUR) and the European Association of Urology Research Foundation;
- Seth Paul Lerner, Urology, Baylor College of Medicine, Houston, United States; Beth and Dave Swalm Chair in Urologic Oncology, Director of Urologic Oncology; Director of the Multidisciplinary Bladder Cancer Program; Faculty Group Practice Medical Director;
- Dr Luis Martinez-Piñeiro Lorenzo, Urology, Chairman, Urology Unit, Hospital Infanta Sofia, Madrid, Spain ;
- Alexandra Masson- Lecomte, Urology, Henri Mondor de Crétei, France ;
- Bas Van Rhijn, Urology, Netherlands Cancer Institute, The Netherlands;
- Prof Dr Morgan Roupret, Chirurgien, Hôpital Pitié-Salpétrière, Université Paris 6 ;Professor, Faculté de Médecine Pierre et Marie Curie, University Paris 6, France ;
- Prof Shahrokh Shariat, Professor and Chairman, Department of Urology Comprehensive Cancer Center, Medical University Vienna, General Hospital, Austria;
- Prof Dr Arnulf Stenzl, Klinik und Poliklinik für Urologie, Universitätsklinik Tübingen, Germany.
Patient organisations dealing with bladder cancer in Europe:
UK Fight Bladder Cancer
Andrew Winterbottom Founder and Director www.fightbladdercancer.co.uk
Action Bladder Cancer UK
The initiative was funded by a grant from IPSEN and ROCHE. However, the content was not influenced by its funders, with ECPC maintaining full editorial control.