EuropaColon Uniting citizens in the fight against colorectal cancer. Zorana Maravic Director of Group Development May, 2013

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1 EuropaColon Uniting citizens in the fight against colorectal cancer Zorana Maravic Director of Group Development May, 2013

2 Colorectal cancer in Europe today >450,000 new diagnoses every year 2nd most common cause of cancer deaths Affects men and women equally Most common GI cancer Colorectal cancer Survival rates correspond to disease stage at diagnosis Most patients aged over 50 years Almost 250,000 deaths every year Incidence increasing in younger people GI, gastrointestinal World Health Organization. GLOBOCAN 2008 database (version 1.2). Available from: globocan.iarc.fr. Accessed May 2013; World CIA Factbook. Available from: Accessed October 2012; National Cancer Intelligence Unit (NCIN) Colorectal Survival by Stage. Available from: Accessed October Gatta G et al. Gut 2000;47:533 8.

3 Colorectal cancer in the Baltic region Country (Globocan 2008) Incidence Mortality Estonia Latvia Lithuania Country Incidence Mortality Estonia (2008) Latvia (2012) Latvia (2012) Screening 7% GLOBOCAN 2008 database (version 1.2). Available from: globocan.iarc.fr. Accessed May 2013; Estonian Cancer Registry; Latvia Cancer Statistics 2012

4 Main challenges today 1. Screening 2. Access to best treatment and care 3. Citizens are not aware of their rights Do citizens want to take responsibility for their lives?

5 EuropaColon Founded in 2004 First and only European umbrella organisation dedicated to colorectal cancer with the aim to unite: Patients Carers Healthcare professionals Politicians The media and populations of Europe...in the fight against the disease

6 EuropaColon - Mission statement To prevent deaths from colorectal cancer, improve the quality of life and provide support for those affected by the disease.

7 EuropaColon - Vision and Goals Reducing Colorectal Cancer mortality in Europe To reduce the number of European citizens affected by CRC To identify CRC at an early stage To ensure access to best treatment and care for all European patients To support novel and innovative CRC research

8 Key achievments to date 1. Development of CRC Community 2. Launch of European CRC Awareness Month - March (ECAAM) 6th year Development of educational tool - Inflatable Colon 4. Screening initiatives 5. Biannual CRC Patient Conference 6. Political partnerships - White Paper/CRC Health Check Barometer

9 1. EuropaColon CRC Community Affiliates 10 Associates 12

10 1. EuropaColon CRC Community - Our reach Today our groups are active amongst 92% of the total European population: Our Affiliates Portugal Spain Belgium Hungary Slovakia Poland Latvia Slovenia Bosnia and Herzegovina Serbia Our Associates - Finland Greece Netherlands Macedonia Cyprus Romania France UK Czech Republic Austria Germany Hungary

11 1. EuropaColon CRC Community The next 2 years In development are: Germany (contract about to be signed) Italy Sweden Turkey Malta Georgia Estonia Lithuania Russia Ukraine

12 1. EuropaColon CRC Community How the Affiliate groups are structured Board of Trustees with Chairperson (made up of patients, carers and family members) National CEO / Director National Medical Director National Membership National Multidisciplinary Medical Advisory Board

13 2. European Colorectal Cancer Awareness Month (ECCAM) March Launched at the European Parliament in 2008 with the aim of raising the profile of the disease amongst all stakeholders. Left to right: Professor Eric Van Cutsem (University of Leuven, Belgium), medical director, EuropaColon; Robert Sturdy, MEP; Jola Gore-Booth, EuropaColon founder and director; Dr Keith B. Spencer, nonexecutive director, EuropaColon.

14 2. European Colorectal Cancer Awareness Month (ECCAM) March - Slovakia SLOVAKIA launches National Billboard CRC Awareness Campaign - ECCAM 2013 Test your own risk of colorectal cancer supported by the Clinical Lead of proposed national screening programme and Patrik Herman (award winning TV celebrity). The campaign focuses on education citizens to understand and action identifying genetic prediposition to CRC.

15 2. European Colorectal Cancer Awareness Month (ECCAM) March - Macedonia Macedonia launch CRC Screening Awareness Campaign ECCAM 2013 Don t make excuses - simple cartoon campaign raises awareness of the importance of screening and attracts the eye of the media in Macedonia. The Campaign is supported by Ministry of Health who are providing free FOBT test kits for every high risk citizen throughout This is a run up to a National Screening Programme!!!!!!

16 2. European Colorectal Cancer Awareness Month (ECCAM) March - Serbia Serbia launch CRC Screening Awareness Campaign ECCAM 2013 Don t make excuses campaign supported by the Ministry of Health with the aim to raise the awareness of the importance of screening. In 2013, Serbian Ministry of Health has started with the implementation of the screening providing free FOBT test kits for citizens that are in the age group.

17 3. The Inflatable Colon (IC) 2.4 m high walk through inflatable replica of the human colon that allows visitors to learn about the various stages of colorectal cancer and other diseases of the large intestine Exceptional educational tool for all ages and social economic backgrounds, and is available to buy or hire The IC has toured across Europe even as far afield as the UAE and Japan and Indonesia

18 3. The Inflatable Colon France Have acknowleged the need to increase awareness NOW Europacolon s Inflatable Colon toured through more than 50 cities

19 4. The screening black hole!!! Approximately 136 million individuals are suitable for CRC screening (aged 50 to 74 years) Estimation is that 12 million European citizens participated in CRC screening What about 124 million European citizens who are within the age criteria but not being screened? Ref: Zavoral M, Suchanek S, Zavada F, Dusek L, Muzik J, Seifert B, Fric P. Colorectal cancer screening in Europe. World J Gastroenterol 2009; 15(47):

20 4. Screening Lack of Harmonisation Different tests Guaic FOBT ifobt Colonoscopy Flexible sigmoidoscopy Capsule/pill cam Vitual colonoscopy Blood test Types of Screening Formal Population Opportunistic Invitation from government Invitation from family doctors Pilots

21 5. CCPC 5 th and 6 th July 2013, Barcelona Your life, your responsibility

22 5. Colorectal Cancer Patient Conference 2011 Let me congratulate you for this excellent meeting. Prof Eric van Cutsem, Medical Director EuropaColon Congratulations for putting together such an impressive event I felt so privileged to be a part of it and to hear so many incredibly intelligent and inspiring people. Jill Miners, CRC survivor I would like to thank you for giving me the opportunity to participate at this historical meeting. Perfect organisation and inspirational presentations. Dr Luc Colement,Gastroenterologis I really wish to congratulate for the enormous progress in your work well done.' Dr Alberto Costa, Director, European School of Oncology 'Thank you for the honor and privilege in taking part in what was one of the most interesting and worthwhile conferences I have ever attended. Peter Elwood, Honorary Professor of Epidemiology, Cardiff University School of Medicine

23 6. Lobbying Achievements Prevention and control workshops resulted in an agreement for introduction for formal population screening programme in Portugal and Greece White Paper focused on prevention and early detection - launched in the EU Parliament in November 2012 CRC Health Check Barometer 2013 showing lack of Formal Population Screening Programmes across Europe launched in the EU Parliament in February 2013 Over the last 8 years EuropaColon and its Affiliates and Associates have lobbied successfully for changes with access to best treatments and care EuropaColon has been acknowledged as the voice of CRC patients in Europe

24 Zorana Maravic Director of Group Development EuropaColon Thank you