1. 21, rue Leblanc – Le Ponant B – 75740 Paris cedex 15 Tél. 01 53 98 54 60 – Fax 01 45 54 18 69 The 2 nd Central and eastern europe cancer patients advocacy groups summit 26-27 November 2005 Warsaw, Poland Doctor Christine Bara – Sophie Bentegeat

2. 2 Cancer, a global issue “Cancer kills and it kills fast. On average, cancer patients die within five years. For the selection of country (rather similar to France). 5 year survival rate : 55,1 % Any cancers (except skin). it is also killing on a major scale, with some 150,000 French lives lost to the disease every year, and the figure could double in the next two decades”

3. 3 Epidemiology in France 280.000 new patients per year Second cause of death (150,000 deaths per year) 25.000 deaths more than 20 years ago Top 6 include : Breast, Colo-rectal, Lung, Prostate, Bladder and Stomach

4. 4 Main weaknesses Premature cancer mortality Insufficiant prevention Unequal access to quality cares and innovative treatments Difficult rehabilitation Research efforts to be improved Isolated cancer task forces

5. 5 President Jacques Chirac has declared cancer as a national priority. Two main objectives :  Quantitative : Decreasing cancer mortality by 20%  Qualitative : Equal access to the same healthcare National Plan for Cancer Control Which goes from 2003 to 2007

6. 6  The cancer plan: one of the three priorities of the 5-year term.  Budget : 1.5 billion € for new activities. National Plan for Cancer control 2003-2007

7. 7 National Cancer Institute History February 2000 : At the World summit on Cancer : President Chirac signs the «Charte de Paris » March 2002 : The National plan for cancer control is launched (70 measures) May 2005 : The French National Cancer Institute (INCa) is founded

8. 8 Why a National Cancer Institute ? »A fact : the need to coordinate all forces in cancer control. »We have 4 objectives : »Combat the 2nd cause of mortality in France. »Integrate knowledge about the disease in a coherent, global scheme. »Ensure equality of care for all patients. »Ensure patients’ rights during and after the disease.

9. 9 Our values Humanity Proximity Expertise Hope

10. 10 Humanity Patients are at the heart of cancer control. They must be respected, given clear information and listened to attentively, with their families.

11. 11 Expertise All patients should have access to the latest treatment, wherever they are treated.

12. 12 Hope The Institute promotes progress in medicine by clinical research.

13. 13 Our governing bodies » Board Committee (27 members) » Scientific Committee (18 international members) » Patients Committee (15 members) » Ethics Committee (3 members)

14. 14 4 challenges »In public health: (to avoid 400 deaths per day), the second cause of mortality in France. »In medicine: treat, cure and guarantee equality of care and access to the latest treatment. »In science: better understand the disease in order to overcome it. »In society: improve the quality of life of patients and their carers.

15. 15 Mission statement Defined according to 3 axes:  Patients  Research  Health workers

16. 16 »Patients : » Equal access to quality care and innovation » Patients support and social life » Better prevention, screening and diagnostics Mission statement

17. 17 Research : » Support of international competitive research » Promotion of epidemiology, social sciences and technology transfer » Coordination of the “cancer centers” Mission statement

18. 18 »Health workers : » Promotion of multidisciplinary approaches for patient care » Organization of the public and private sectors in a cancer network » Keeping the healthcare professionals and their environment up to date Mission statement

19. 19 Patients, our priorities 6 approaches to rapidly decrease mortality : »Information »Prevention »Screening »Quality care »Changing the perception of cancer »Research

20. 20 Information »To develop centers for scientific surveillance and information diffusion To make available Newsletters for patients and their families. There is an information portal on cancer : www.e-cancer.fr »Office for questions of public interest.

21. 21 Information Continue on-going activities : » Kiosks in towns, providing information on cancer : 5 operational, about 15 are to be installed; » Information meeting points in health establishments : 10 operational, 10 more projected »We have a Cancer Info service: 0810 810 821.

22. 22 Prevention » Fighting addictions : tobacco and alcohol » Changing habits and mentalities: food, » exercise and intense sun exposure » Preventing cancer at the work place

23. 23 » Strengthen the national nutrition and health plan: »Bank of scientific expertise in nutrition counselling »Campaign to promote fruit and vegetable consumption by young people » Reduce occupational and environmental cancers: »Systematic monitoring of the prevalence and time trends of cancers Prevention

24. 24 Prevention For example, an awareness campaign about cancer risks associated with exposure to the sun, especially in childhood Launch of the 2005 campaign: June 2005

25. 25 Screening » Promoting National media campaign : « why screening is necessary » » Breast cancer : we have extended the national screening program to the women aged 50-75 » Colorectal cancer : screening extended to the 50 -75 years population » Cervical cancer » Melanoma

26. 26 Organized breast cancer screening »Breast cancer: - 42 000 new cases in 2000 (60% increase in 20 years), - 12 000 deaths. »Organized screening has been conducted throughout the country since 1st January 2004. »8.2 million women covered: all women aged 50-74 years can have a free mammogram every 2 years. »90% of screening is assured by independent radiologists :

27. 27 Organized breast cancer screening » Increase of the participation rate  32.7% in 2003  nearly 40% in 2004 Numerous activities have begun, including: campaigns and actions by associations Nevertheless, the objective of participation of 80% of women is still far off. Need to maintain and strengthen mobilization

28. 28 Principles: » Equal access to treatment » Coordination of actors » Quality professional practices »Openness and provision of information to patients Quality care

29. 29 Quality care Patient First » Stimulating relationships within the cancer network (home, hospital, doctors and communities) » Developing clinical practice guidelines » Equal access to state of the art equipment and innovative treatments » Improving communication between Doctors and patients (medical record available…)

30. 30 Quality care : patient support Developing supportive care (pain, nutrition, psychological and social support …) Giving priority to home care and improving the quality of life globally Maintaining a proper hospital environment for the children (presence of parents, teachers…)

31. 31 What will change for health establishments (circular of 22 February 2005) »Implementation of the main measures of the cancer plan (announcing, networks, coordination, quality. »Requirement for authorization to treat patients with cancer on the basis of the quality criteria defined by the National Cancer Institute »Organization of access to novel treatments and clinical research (regional oncology centres) Quality care

32. 32 1. Guarantee universal access to quality treatment Drow up and disseminate guidelines. Set up oncology coordination centers. Develop oncology networks. Develop support treatment (psycho-oncology, pain treatment, nutrition, re-education, palliative care). Increase the numbers of scanners, MRI, PET (75 authorized). Develop two specific population approaches : geriatric patients and paediatric ones. Quality care

33. 33 2. Promote innovative diagnostic and therapeutic measures. »Support the development of oncogenetics. »Set up interregional observatories for the prescription of new drugs. »Accelerate the dissemination of new treatments; e.g. provide support (3 million €) for stereotaxic radiotherapy. »Support hospital tumour libraries. Quality care

34. 34 3. Provide standardized high-quality knowledge to all actors in prevention and treatment »Provide medical training for better overall management of cancer cases. »Promote new distribution of competences, (from medics to nurses). Quality care

35. 35 Change the perception of cancer For a better integration of patients in hospitals »Facilitate the involvement of volunteers within hospitals : signed agreements between associations and establishments. »Encourage the formation of patients’ committees within hospitals. »Give patients access to information and possibilities for preserving fertility.

36. 36 Change the perception of cancer Maintain the social link Improve home help Facilitate home hospitalization Adapt grants for family help Improve reimbursement for external mammary prostheses and wigs Facilitate access and return to work Facilitate access to insurance and bank loans Set up psychosocial studies: effects on families, psychosocial and economic difficulties, living conditions

37. 37 Research Promoting the multidisciplinary approaches Facilitating the technology transfers Supporting and promoting R&D investments in cancer Elaborating new therapeutic strategies

38. 38 Research Seven interregional cancer centres to structure, drive and finance the research effort

39. 39 Stimulate basic research The National Cancer Institute works in partnership with existing structures (e.g. the National Institute for Scientific and Medical Research and the National Centre for Scientific Research). Several types of call for tenders: »projects presented by regional cancer centers »thematic projects »independent projects (three to five teams not yet included in the regional cancer centres) »a programme for 20 post-doctoral posts for 2005 »a programme for 10 thesis posts for 2005

40. 40 Develop clinical research »Hospital programs for clinical research 2005 »Call for large national projects »Strengthen hospital capacity (70 posts created by the Association for Cancer Research in 2004) »Research groups by cancer site »Data treatment centers »Several support groups: »coordination with the pharmaceutical industry »coordination with patients’ committees »legal expertise »committee to evaluate research protocols »team of experts in biostatistics and computer systems

41. 41 Develop clinical research Hospital programs for clinical research 2005 »Cancer themes administered by the National Cancer Institute »Budget: 15 million € over 3 years »215 projects received »Projects examined by the National Committee for Clinical Research in Oncology (14 members) »Each project evaluated by three different experts.

42. 42 Promote a culture of innovation Streamline exchanges between protagonists of innovation »Stimulate collaboration with actors in the private sector. »Promote agreements for cooperative research and development. »Encourage small, innovative businesses (grants for innovation).

43. 43 Organize research in the social sciences »Establishment of the Cancer Observatory, which will have a threefold epidemiological approach: classical, social and spatial. »Its objectives: identify combinations of risk factors in order to address their determinants, link information on populations and areas of risk, study the evolution of cancer. »Its tools:the Geographic Information System on cancer in France.

44. 44 Expand research in human sciences 3 main orientations: » Study » Research » Communicate

45. 45 Our priorities: »the doctor-patient relationship »the quality of life of patients »their care »their social and professional integration »the costs and advantages of chemotherapy at home Expand research in human sciences

46. 46 Conclusion The National Cancer Institute must rapidly give people the right to hope. To fight against cancer, we must end the parcelling out, the compartmentalization, the spread and the individualization of financing for research and programmes. The road map is definitive. It’s up to us to implement it.

47. 21, rue Leblanc – Le Ponant B – 75740 Paris cedex 15 Tél. 01 53 98 54 60 – Fax 01 45 54 18 69