1. ESMO Patient Coalition Forum Prostate Cancer: Bridging the GAP in Europe Europa Uomo: Coalition of independent patient led prostate cancer groups. Louis Denis Brussels, 26.11.07

2. Prostate Cancer: The common problem Our diversity in identity and culture which we like to keep in the face of: rising incidence (age) outcome variations across Europe optimal prevention and treatment holistic patient-centered care requires collaboration with all stakeholders in a social health care system. Europa Uomo, 2007

3. The Rudy Giulani Statement Radio ad against universal health care. “My chances of surviving prostate cancer in the USA is 82% vs. 44% in the UK under socialized medicine” A scare tale that is false (the UK survival is 74.4%) a statistical illusion to be deleted with the five year survival concept. P. Krugman, IHTA, 2007

4. Prostate Cancer: Specific problems Increasing burden to civil society and patients numbers. Uncertainty in optimal medical prevention and treatment. Outcome variations in Europe today. Advocacy in holistic patient-centered care. Europa Uomo, 2007

5. Incidence PCA & Bra in 2004-2006 Europe Men PCaWomen Bra Inc.MortalityInc.Mortality 2004 202,168,2275,188,4 2006 301,567,8319,9 85,3 Europa 25 * thousands, IARC

6. Background of this Tsunami 1.Microscopic cancer can be found from age 30 and is present in 50% of all men at age 50. 2.These cancers are indolent (sleeping) but grow slowly. Detection is possible from volume 0.2 to 0.5 cc (28 to 29 doublings) over 20 years. We can detect up to 30% of cancer. 3.However the PCa incidence is only 10% with a mortality of 3% after 15 years. OCA, 2007

7. Conclusions on Incidence 1.Prostate cancer is a chronic disease in senior adults (peak inc, mort > 70 y.). 2.In PSA-screened cancers we find 53% of these small cancers (ERSPC). 3.Overdetection is a fact but overtreatment a mistake (PRIAS). OCA, 2007

8. Uncertainty in Prevention/Treatment 1.Total PSA aspecific & variable 2.Biopsies and pathology difficult. 3.Choice primary treatment (Active Surveillance) 4.Hormonal treatment (Watchful Waiting) OCA, 2007

9. The Physician before Uncertainty Cause:Limitations in medical and/or personal knowledge Reaction:Retracts in personal discipline/ show of self-assurance Solution:Reflect – Respect Others – Communication J. Groopman, How Doctors Think, 2007

10. The lost patient Tsunami information (Professionals, media, friends ) The medical labyrinth EBM Guidelines Nomograms Loss of personality Outcome results Statistics PANIC OCA, 2007

11. The Europa Uomo Strategy 1 Partnership with professional organisations: 1.Request for update on all aspects of prostate cancer European Association of Urology (EAU) European Society of Medical Oncology (ESMO) European Cancer Organisation (ECCO) 2.Support multiprofessional treatment 3.Open communication & collaboration Europa Uomo, 2007

12. Example EAU – EU Collaboration Key topics Prostate Awareness day 2007 1.BPH symptoms not related to cancer. 2.Early detection with PSA but rather PSA kinetics as tools to identify risk. 3.These cancers do not always need treatment (Active Surveillance) 4.Hormonal therapy impacts quality of life but side-effects can be reduced. EAU, 2007

13. Aims Europa Uomo on optimal Prevention/Treatment 1.Develop individualized treatment based on state of the art principles and personalized patient care. 2.Help reduce overtreatment of prostate cancer. Europa Uomo, 2007

14. Outcome variations in Europe today Need for appropriate, validated and understandable information/communication Appropriate = useful Validated = objective Understandable = direct Europa Uomo, 2007

15. GAP TRUTH versus REALITY OCA, 2007 ‘The growing gap’ Real care Knowledge Rich Transparency Decision-sharing Treatment Poor Olympic Proposals Neglect Prevention

16. Europa Uomo Strategy 2 Collaboration with European School of Oncology (ESO) on: Information Communication Education Website Cancerworld.org online

17. Advocacy in holistic Patient Care Europa Uomo Strategy 3 1.Personal physician “trust” Privacy, Confidentiality, Dignity Onco-psychology, social support 2.Collaboration Europa Donna We go for an unisono advocacy under the European Cancer Patient Coalition (ECPC). Europa Uomo, 2007

18. Europa Uomo Glosing the Gap Strategy 1.Partnership with professional organisations (EAU, ESMO, ECCO). 2.Collaboration on information, communication, education (ESO & Cancerworld). 3.Unisono advocacy (ECPC, Europa Donna). Thank you for caring. 22.11.07