1 ECPC PAPER ON BLADDER CANCER FRANCESCO DE LORENZO Brussels, 20 April 2016

2 ECPC: "Nothing about us, without us" Representing 397 cancer patient groups in 46 countries All cancers are represented– common and rare cancers Run and governed by patients Promoting timely access to appropriate prevention, screening, early diagnosis, treatment and care for all cancer patients Reducing disparity and inequity across the EU Encouraging the advance of cancer research & innovation Increasing cancer patients' influence over European health and research policy

3 European Cancer Patient Coalition’s Activities

4 Successful ECPC awareness campaigns: models to follow for Bladder Cancer A policy action framework for policymakers A guide to immuno-oncology for patients translated in 20 European languages

5 GUIDE FOR PATIENTS ON IMMUNO-ONCOLOGY Launched at the European Parliament in 2014; First EU cancer patients’ initiative on immuno-oncology; ECPC member organisations proof-read, translated and disseminated the Guide within 6 months in 20 different languages. ECPC is thankful to: NFKEstonian cancer societyMagyar Rakellenes Liga AIMaCBAPDDzivibas koks POLALet’s Win HealthPulmonale FABCDOBSGEPAC Pembe HanimSVE za NJUGreek patients’ org. Czech Rep. Patients’ org.France Lymphome EspoirSwedish patient orgs Dansk Myelomatase Forening Icelandic Cancer Society

6 MAKE SENSE CAMPAIGN – facts and figures ECPC White Paper launched in the European Parliament in 2013; Conference in the European Parliament in 2014; Debate in ENVI Committee in 2015; 15 countries involved in the campaign in 2015, 3 other countries are expected to join in 2016; Over 12,000 patients were screened during the “free screening day” held last September (2015), as part of the activities of the Make Sense Campaign, in 15 different EU countries; Great media coverage: the campaign generated over 784 media articles in different national outlets (in 15 countries) and trade media

7 ECPC PAPER ON BLADDER CANCER Result of six months of work by ECPC Expert Group on Bladder Cancer. ECPC gives voice to a community of patients under- represented. Raise awareness of bladder cancer risk factors and early symptoms among clinicians and high risk groups Early diagnosis is key to improve survival rates in bladder cancer. When diagnosed at its earliest stage, more than 8 in 10 people with bladder cancer will survive their disease for five years or more compared with around 1 in 10 people when the disease is diagnosed at the latest stage.

8 BLADDER CANCER THE MOST EXPENSIVE CANCER, THE MOST NEGLECTED ONE In Italy the annual cost is 7 % of total cancer healthcare expenditure. In the UK, treatment of bladder cancer costs 286 million euro a year, 5% of the entire cancer health expenditure in Still in the UK the research funding for bladder cancer is five times lower than research funding for prostate cancer.

9 INEQUALITIES OF REIMBURSEMENT Reimbursement for cystoscopy in the UK is approximately 12 times higher than cystoscopy reimbursement in France.

10 Patient access to novel cancer treatment In the figure cancer treatments introduced between 2009 and Patient access to new cancer therapies varies according to regulations, local health system priorities, and budgetary constraints. Examining cancer treatments introduced between 2009 and 2013, the US offers the broadest access, while countries such as Spain have less than 50% of these new drugs accessible for patients

11 POLICY ASKS Increase awareness of bladder cancer risk factors among high risk groups; Creation and extension of multidisciplinary Bladder Cancer Units involving urologists, medical oncologists, pathologists, radiologists, psycho-oncologists, physiotherapists and palliative care experts; Stricter regulation to reduce exposure to carcinogenic chemicals among workers; More funding should be dedicated to bladder cancer research; Ensure clinical trial funding; Fight disparities related to the reimbursement of care for bladder cancer patients; Promote the development of European Rehabilitation and follow up Guidelines.

12 NEXT STEPS AFTER THE LAUNCH OF ECPC BLADDER PAPER Dissemination of key messages in different countries: ITALY SPAIN GREECE POLAND ROMANIA ECPC to translate these documents into national languages. National organisations to decide on the type of activity at national level: press conference, event, on-line campaign, etc. Timeline: documents to be translated in June, implementation activities to take place as of September.

13 Thank for your attention Nothing About Us Without European Cancer Patient Coalition ECPCtv