EuropaColon Expands into Digestive Cancers Europe. Our objective is to save an additional 250,000 Europeans every year

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1 PRESS RELEASE Monday 22nd October 2018 EuropaColon Expands into Digestive Cancers Europe Our objective is to save an additional 250,000 Europeans every year Munich, 22 October 2018 EuropaColon, the European patient organisation representing colorectal cancer patients announced today that it will expand its activities to all digestive cancers: oesophageal, stomach, colon, rectum, pancreas and rare digestive cancers. The new organisation will be called Digestive Cancers Europe and will be based in Brussels. It is formally founded as a Belgian non-profit organisation by Jola Gore-Booth, founder of EuropaColon, Prof. Dr. Eric Van Cutsem, Digestive Oncologist at the University Hospital of Leuven, Belgium and Stefan Gijssels, colon cancer patient and health policy expert. Since its foundation in 2004, EuropaColon has gradually expanded geographically, now representing 40 patient organisations in 30 countries. Jola Gore-Booth, founder of EuropaColon explains: Over the last 14 years we have set up alliances with existing patient organisations or set up new patient advocacy groups to make sure that the voice of the patient is heard in every European country. We cover almost all countries now and it s the right time to also include other digestive cancer patients whose voice was not represented so far. Highly preventable and avoidable number of deaths The number of patients dying from digestive cancers is excessively high. More than 800,000 people in Europe get diagnosed every year with one of the digestive cancer types, and approximately 500,000 patients die every year 1. Colorectal cancer is highly preventable, and when detected early, overall survival rates are approximately 90%. Unfortunately, only 16% of patients get diagnosed at an early stage, which demonstrates the strong importance of population-based screening campaigns. With the best possible screening 380,000 extra lives could be saved annually, and 14 billion euro saved. Priority activities: increase overall survival, and saving 250,000 lives per year by 2028 Through a combination of improvements in the healthcare systems, the organisation s aim is to reduce the number of digestive cancer deaths with 250,000 per year by Digestive Cancers Europe will advocate for the following key initiatives: - prevention: raise awareness among citizens about the importance of lifestyle choices, self-diagnosis through symptom recognition, knowing the family history of cancers and asking to be tested - screening: today only 8 countries in Europe have population-based screening campaigns, despite the demonstrated massive benefits of saving lives and saving money. Some regions in Europe manage to have more than 75% of the population older than 50 years screened. In only 5 EU Member States, more than 50% of the population between 50 and 74 years old has been screened in the last three years. - adoption of the best healthcare systems: some countries achieve very high overall survival rates. If all countries in Europe applied the current approach of the countries with the best outcomes, more than 120,000 patients would survive every year additionally. - adoption of the best medical practices: today, the overall survival rate is highest when patients are treated in the most specialised hospitals and live in countries where new technologies find early adoption. Even in the wealthiest countries, the difference in mortality three months after surgery is 13 times higher in the best hospitals than in the less specialised hospitals. - research: despite the high incidence and mortality of digestive cancers, there is a marked under-investment in basic and applied research compared to other types of cancer. Stefan Gijssels, co-founder of Digestive Cancers Europe comments: From a political perspective, there is no reason not to invest in better healthcare: it saves a huge number of lives, and it saves significant amounts of money in the healthcare system. We will engage with the political world and show them the way forward. It is time to act! 1 European Cancer Information System, 2018

2 Digestive Cancers Europe: Awareness campaign, new website and colorectal heatmap Digestive Cancers Europe announced four key initiatives to mark its launch: Monday 22nd October the preparation for a European awareness campaign for March of next year that will make European citizens aware of the need for screening. Advertising agencies have been selected. - a new website: - a new colorectal cancer patient information portal - a colorectal heatmap, an interactive digital map that gives the colorectal statistics by country in Europe, and that will serve as an information source and reference for patient organisations, policy makers and media. Organising for success Digestive Cancers Europe will set up a number of initiatives to have a stronger representation of the patients voice across the region: - build capacity in all the countries and strengthen the collaboration European and national cancer organisations - increase the skills and competences of the teams at national level - build a true patient community in Europe, linked digitally - the continued effort of the Patient Advisory Committee - the continued effort for the Medical Advisory Board, chaired by Professor Dr. Eric Van Cutsem - the establishment of a Research Advisory Board. Collaboration for success Digestive Cancers Europe will continue to collaborate with all the other stakeholders active in the area of digestive cancers: - medical societies such as the European Society for Medical Oncology (ESMO), United European Gastroenterologists (UEG), - research organisations such as the European Organisation for the Research & Treatment of Cancer (EORTC), Anti- Cancer Fund, - patient organisations such as the European Patient Forum, the Global Colon Cancer Association, - multi-stakeholder and political initiatives, such as the European CanCer Organisation (ECCO), Pancreatic Cancers Europe, Eurordis, MEPs Against Cancer, Professor Eric Van Cutsem, the third co-founder of Digestive Cancers Europe says: There is no reason why so many patients need to suffer from digestive cancers. When we look at the available technology of today, and the best practices that are demonstrated across the continent in the best hospitals, the potential upside in lives saved is huge. We will work with the medical community and other partners to make sure these best practices are applied everywhere. The name EuropaColon will continue to exist for the activities by Digestive Cancers Europe linked to colorectal cancer. For further information Stefan Gijssels, Executive Director, Digestive Cancers Europe: Backgrounders 1. EuropaColon - 14 years of activity for colorectal patients in Europe 2. Digestive cancers - 380,000 avoidable deaths every year 3. Digestive cancer research in Europe: more investments are needed 4. The costs and the savings of treating colorectal cancer 5. Despite political commitment, population-based screening remains the exception

3 Backgrounder 2 Monday 22nd October 2018 Colorectal cancer: 380,000 avoidable deaths Digestive cancers are among the most common cancer types in Europe, with more than 800,000 new cases every year, followed by breast cancer (522,000) and lung cancer (470,000)2. The death toll of digestive cancers remains very high, with more than 500,000 deaths every year, despite the fact that the application of best practices in screening and treatment of colorectal cancer could save around 85% of patients. In breast cancer, mortality is around 140,000 per year, and in lung cancer 390,000. (Europe: 40 countries) Number of new cases per year Number of deaths per year Oesophagus Stomach Colon Rectum Pancreas TOTAL 806, Today only approximately 16% of colorectal patients get detected in Stage I of the disease3, despite the higher chance of survival (90%) and the much lower treatment cost. A Stage IV metastic cancer patient has only 10% survival chances and the treatment costs ten times more. Unfortunately, 22% of patients get diagnosed at this late stage. If all CRC patients were diagnosed in Stage I, between 350,000 to 380,000 additional lives could be saved every year, saving 8 billion euro from the healthcare system in the process. These figures make the case for screening very strong. Despite all this evidence, and despite the formal commitment for screening by all European Member States, only eight European Member States have population-based screening. The case for best practices The overall survival rate 5 years after diagnosis varies significantly in Europe, depending on the quality of the healthcare system4 Overall survival rate (in %) Number of patients Worst country Best Country Potential upside Oesophageal Gastric Colon Rectum Pancreatic TOTAL Considering the high number of patients with digestive cancers, the application of best practices across the region could result in additional lives saved, even without the introduction of any new technologies. And even in some of the best and well-equipped countries, such as Belgium and the Netherlands, the results can vary significantly depending on the hospital the patients are treated in. The best hospitals in Belgium have an overall patient survival rate of 85% for rectum cancer, as compared to 60% or less in the non-specialised hospitals, and the smaller hospitals often do not keep statistics. In the Netherlands the standardised 3-month mortality rates after colon cancer surgery vary between 0,84% in the best hospital to 11,11% in the worst, or 13 times more. It is clear that today s situation is unacceptable, even in the wealthiest countries. 2 European Cancer Information System, In several studies, the percentage of Stage I, varies between 13% (UK) and 16.5% (CH), with Belgium having a score of 16%. 4 CONCORD-3 Study, The Lancet, January 2018

4 Monday 22nd October 2018 Backgrounder 3 Research in Europe: more investments are needed Research investments in Europe for cancer overall are very low compared to the United States. All European Member States and the European Commission together invest approximately 700million euro per year in cancer research5, as opposed to 5.4 billion euro by the US National Institutes of Health. In line with overall pharmaceutical research, the situation for digestive cancers is even worse. Of the 128 drugs in clinical development at the moment, not less than 108 are developed by US-based companies. In a post-brexit Europe, Switzerland, the UK and Norway develop as many drugs for digestive cancers as all EU Member States. Drugs in development against digestive cancers (2018) US 108 European Union 7 Europe Non-EU 7 Asia 2 Israel 2 Canada 2 TOTAL 128 The graph below gives a good idea about the underinvestment in digestive cancers in Europe. Research for colorectal, pancreatic, oesophageal and stomach cancers is situated below the median full line6. The arrows show the difference between 2003 and Research Investments by cancer type (% of cancer research funding/disability Adjusted Life Years by cancer type) 5 Eckhouse S, Sullivan R (2006) A Survey of Public Funding of Cancer Research in the European Union 6 Mursheda Begum, Grant Lewison, Mark Lawler, Richard Sullivan: Mapping the European cancer research landscape: An evidence base for national and Pan-European research and funding, In: European Journal of Cancer, 2018

5 Monday 22nd October 2018 Backgrounder 4 The cost of colorectal cancer: 380,000 lives and 14 billion euro wasted Despite the constant claims that our healthcare system is unsustainable, there are very few studies conducted to determine the actual cost of digestive cancers, and how much money can be saved by treating patients earlier and better. Depending on the scarce sources, the treatment of a stage I colorectal cancer patient could be as little as 3,373 7, or as much as 40,000 on average in stage III and IV8. In the United States, the difference between early stage and late stage is tenfold, ranging between 3,000 $ and 30,000 $9. More cost-effectiveness research needed It is clear that despite the high burden of digestive cancers in Europe, not many studies have been conducted on the health economic aspects of the disease. Digestive Cancers Europe will advocate for more research in this area to make sure policy measures are made with the right figures and evidence. Today, around 16% of colorectal patients are diagnosed in stage I. Better screening could even diagnose many citizens before they reach stage I, and the cost of treatment will be even lower. Stage I Stage II Stage III Stage IV Overall Survival Rate 92% 75% 70% 11% Cost per person 3,800 20,000 40,000 Diagnoses 16% 63% 22% Incidence EU 78, , ,297 Survivors 71, ,763 11,802 Cost for stage 0.30 bln 6.14 bln 4.29 bln Patients with a Stage I diagnosis, have a potential 5-year overall survival rate of 92%, as compared to 11% in Stage IV. In the assumption of a perfect screening system - all patients are detected at Stage I or earlier - 380,000 extra lives would be saved every year in the European Union and 8 billion euro in medical costs would be saved, taking into account that the screening costs still need to be deducted. The overall work-related productivity loss for premature cancer deaths in the European Union is estimated at 6 bln euro for colon cancer10. It is obvious from the above that screening and early intervention are easily justified. 7 Saving lives, averting costs, Cancer Research UK, Corral, J., Castells, X., Molins, E., Chiarello, P., Borras, J. M., & Cots, F. (2016). Long-term costs of colorectal cancer treatment in Spain. BMC Health Services Research, 16, Lifetime and Treatment-Phase Costs Associated With Colorectal Cancer: Evidence from SEER-Medicare Data Lang, Kathleen et al. Clinical Gastroenterology and Hepatology, Volume 7, Issue 2, Ramon Luengo-Fernandez, Jose Leal, Alastair Gray, Richard Sullivan, Economic burden of cancer across the European Union: a population-based cost analysis - Lancet Oncology 2013

6 Monday 22nd October 2018 Backgrounder 5 Despite political commitment, population-based screening remains the exception On 2 December 2003 the Health Ministers of the European Union unanimously adopted a recommendation on cancer screening based on the developments and experience in the Europe Against Cancer programme11. The Recommendation of the Council of the European Union spells out fundamental principles of best practice in early detection of cancer and invites EU Member States to take common action to implement national cancer screening programmes with a populationbased approach and with appropriate quality assurance at all levels, taking into account European quality assurance guidelines for cancer screening, where they exist. The 2003 EU Council recommendations indicated to offer screening with biennial faecal occult blood testing to all subjects aged or, based on national prioritization for a narrower age band. Even if there are some doubts on the value of population-based screening in other cancer types, the importance of screening for colorectal cancer has been demonstrated time and again. Today, in October 2018, only 4 European Member States have population-based screening for colorectal cancer for all people between 50 and 74 years old. Some countries and regions have demonstrated significant results, such as Slovenia and the Basque country. Barriers to screening inlcude the initial cost of screening, the lack of coherence between regional and national health policies, the lack of political prioritisation of digestive cancers. The Netherlands have a participation rate of 75%, but only for the age group above 55 years old. Across the European Union, only 32% of the people in the determined age groups gets invited for a formal screening, and only 14% actually do the examination12, which shows that both the investment and the quality of the screening are very insufficient today: money and lives are wasted. Earlier this year, the American Cancer Society, reduced the age for screening to 45 years old, because of the increasing trend of colorectal cancer at a younger age. 11 COUNCIL RECOMMENDATION of 2 December 2003 on cancer screening: Official Journal of the European Union, European Commission: Cancer Screening in the European Union (2017)