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The 2nd Central and eastern europe cancer
patients advocacy groups summit
26-27 November 2005
Warsaw, Poland
Doctor Christine Bara – Sophie Bentegeat
21, rue Leblanc – Le Ponant B – 75740 Paris cedex 15
Tél. 01 53 98 54 60 – Fax 01 45 54 18 69
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”
2
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
3
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
4
National Plan for Cancer Control
Which goes from 2003 to 2007
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
5
National Plan for Cancer control
2003-2007
 The cancer plan: one of the three priorities
of the 5-year term.
 Budget : 1.5 billion € for new activities.
6
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
7
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.
8
Our values
• Humanity
• Proximity
• Expertise
• Hope
9
Humanity
Patients are at the heart of cancer control.
They must be respected, given clear information and
listened to attentively, with their families.
10
Expertise
All patients should have access to the latest treatment,
wherever they are treated.
11
Hope
The Institute promotes progress in medicine by
clinical research.
12
Our governing bodies
» Board Committee (27 members)
»
Scientific Committee (18 international members)
»
Patients Committee (15 members)
»
Ethics Committee (3 members)
13
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.
14
Mission statement
Defined according to 3 axes:
 Patients
 Research
 Health workers
15
Mission statement
» Patients :
» Equal access to quality care and innovation
» Patients support and social life
» Better prevention, screening and diagnostics
16
Mission statement
Research :
» Support of international competitive research
» Promotion of epidemiology, social sciences and
technology transfer
» Coordination of the “cancer centers”
17
Mission statement
» 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
18
Patients, our priorities
6 approaches to rapidly decrease mortality :
»
Information
»
Prevention
»
Screening
»
Quality care
»
Changing the perception of cancer
»
Research
19
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.
20
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.
21
Prevention
»
Fighting addictions : tobacco and alcohol
»
»
Changing habits and mentalities: food,
exercise and intense sun exposure
»
Preventing cancer at the work place
22
Prevention
» 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
23
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
24
Screening
» Promoting
National media
screening is necessary »
campaign
:
«
why
»
Breast cancer : we have extended the
screening program to the women aged 50-75
»
Colorectal cancer : screening extended to the 50 -75
years population
»
Cervical cancer
»
Melanoma
national
25
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 :
26
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
27
Quality care
Principles:
» Equal access to treatment
» Coordination of actors
» Quality professional practices
» Openness and provision of information to patients
28
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…)
29
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…)
30
Quality care
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)
31
Quality care
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.
32
Quality care
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.
33
Quality care
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).
34
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.
35
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
36
Research
Promoting the multidisciplinary approaches
• Facilitating the technology transfers
• Supporting and promoting R&D investments in
cancer
• Elaborating new therapeutic strategies
37
Research
Seven interregional cancer centres to structure, drive and
finance the research effort
38
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
39
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
40
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.
41
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).
42
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.
43
Expand research
in human sciences
3 main orientations:
» Study
» Research
» Communicate
44
Expand research
in human sciences
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
45
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.
46
21, rue Leblanc – Le Ponant B – 75740 Paris cedex 15
Tél. 01 53 98 54 60 – Fax 01 45 54 18 69