EuropaColon- Impacting on Colorectal Cancer in Europe

1. EuropaColon- Impacting on Colorectal Cancer in Europe Jola Gore-Booth Founderand CEO ofEuropaColon June 2012 - WCGC

2. Who are EuropaColon? • Founded in 2004 EuropaColon isthe first and only pan European colorectal cancer patient organisation • Our Mission: Preventing deaths from colorectal cancer and improving the quality of life and support for those affected by the disease

3. EuropaColon Vision and Goals

4. The Value of Patient Advocacy PolicyMakers Encourageandsupportappropriatediseasemanagementprogrammestoreducetheincreasingburdenofcancer Physicians Patients/Public

5. Key Activities • Development of a CRC community • Launch of European CRC Awareness Month - March (ECAAM) • Proactive and reactive screening initiatives • Biennual CRC patient conference • Development of educational tool - Inflatable Colon • Political partnerships • White Paper

6. Member Organisations in Europe Associates 9 • Affiliates 11

7. Wherewearetoday Today our groups are active amongst 92% of the total European population: • Our affiliates • Portugal • Spain • Belgium • Hungary • Slovakia • Poland • Slovenia • Bosnia/Herzegovina • Georgia • Serbia • Our associates • Austria • Finland • Greece • France • Macedonia • Cyprus • Netherlands • Romania • UK

8. Colorectal Cancer Awareness Month (ECCAM) March Launched in the European Parliament in 2008 with the aim of educating the general public about prevention and diagnosis

9. Colorectal Cancer Awareness Month (ECCAM) March • All affiliate and associate groups carry out extensive awareness raising activities in March • In Portugal and Slovakia these activities led to a marked increase in awareness and knowledge about the disease (national survey results) • Across Europe the groups have carried out focused and strategic political lobbying putting political pressure on governments at national levels

10. Analysis from 2007 • In Europe there were approximately 136 million individuals who are suitable for CRC screening (aged 50 to 74 years) • It was estimated that 12 million European citizen participated in CRC screening • this left 124 million European citizens who are within the age criteria not being screened for CRC or over 90%! 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): 5907-591

11. The Inflatable Colon (IC) EuropaColon has developed a unique stand alone educational tool - the INFLATABLE COLON

12. The Inflatable Colon • The IC is a 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 been sold/hired across Europe and even as far afield as the UAE, Japan and Indonesia

13. The Inflatable Colon in France • Have acknowleged the need to increase awareness NOW • Europacolon´s Inflatable Colon toured through more than 50 cities

14. Awareness Campaigns CAN Increase Compliance • Pilot project Slovakia: • Awareness roadshow for 18 months • Before: 18% of people aware of CRC screening • Afterwards: 85% of people aware of CRC screening • 50.000 people applied for a FOBT • Success forced government to introduce population based screening • Example Scotland: • Government funded awareness campaign • 3 letter concept to invite people • Participation of 70% could be achieved

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

16. Involvement Of All Stakeholders • EuropaColon has held 2 pilot screening workshops – Greece and Portugal with key government health officials; citizens; clinicians; MP’s; health insurance companies and the media. • These resulted in not only a consensus amongst clinicians that Formal Population Screening with FOBT should be rolled out immediately but also a commitment from the Health Ministers to support the roll out. HOWEVER AUSTERITY HAS CAUSED THESE PROGRAMMES TO BE PUT ON HOLD!!!!

17. 1st Colorectal Cancer Patient Conference(CCPC) 2011 • Established the first ever Colorectal Cancer • Patient Conference in partnership with the • World Congress of GI Cancers in Barcelona Colorectal Cancer Patient Conference 2011 Speaker: Dr. Lawrence Von Karsa (IARC) Colorectal Cancer Patients Conference 2011 - 150 delegates from 25 countries - over 40 different NGOs/ patient groups

18. Political achievements Developed extensive political programme to extend formal population screening and encourage the improvement of standards and equity of care throughout Europe: • Ran pilot programmes in Portugal and Greece to address the challenges and find the solutions amongst all stakeholders including Health Ministries for launchng Formal Population Screening • Intensive lobbying by EuropaColon - Poland resulted in innovative treatments in CRC being reinstated within 3 weeks of having been removed form the official prescribing list (Avastin®, Erbitux®)

19. Challenges of Treatment of CRC in Europe • Uneducated/Disempowered patients • Limited access to clear responsible information • Fear of discussing treatment options with clinicians and seeking 2nd opinions • Difficult for clinicians to access treatment options, especially if treatment is rationed • Governments, if rationing healthcare, see medicines as an easy option • Developing science with many unanswered questions

20. Value of new therapies • Personalised treatments • Stratifying patients using biomarkers • Clinicians are more able to identify the right patient to directly benefit from the treatment • Removes “trial and error” treatment and patients not being over treated • Less financial burden on health systems • THE RIGHT TREATMENT FOR THE RIGHT PATIENT AT THE RIGHT TIME

21. Political achievements 2 • HTA Education workshops for the affiliates and associates – Train the trainers programme • Citizens of Europe have been introduced and informed on their patients rights • White Paper Established EuropaColons’ position in Brussels as the voice of CRC

22. The Role of the Specialist Nurse • EuropaColon believes that all newly diagnosed patients should have access to a clinical nurse specialist (CNS) for support, advice and guidance • Recent pilot study (UK) to assess the feasibility of follow up programme led my CNS for CRC patients. • Key outcomes: • Adherence to agreed follow protocol • Quality of life • Patient and clinician satisfaction • Cost savings

23. Key achievements to date • Voice of CRC in Europe across many stakeholders • Committed and loyal affiliate network across Europe • Gaining momentum in achieving a pan European CRC educated citizens/patient community • Contributed towards the decrease in CRC death rates A lotmore still hastobedone! Fundingisourbiggestchallenge

24. Global Colon Cancer Alliance Founded 2011 by Jola Gore-Booth, EuropaColon and Andrew Spiegel, Colon Cancer Alliance, US Regional organisations in Asia/Pacific and Middle East, 2014 Regional organisations in South America, 2012/2013 Founded 2004 Founded 1999

25. Thank you for your attentionwww.europacolon.comjola@europacolon.com