Nothing About Us
Without Us!
Brussels, The Square
Conference Book
ECPC Cancer Summit
Making the Cancer Partnership work
Acknowledgements
The ECPC Cancer Summit arises from the project
“ECPC Cancer Summit: Making the Cancer Partnership work” which has received funding from the European Union, in the framework of the Public Health Programme.
The following additional sponsors are supporting the ECPC Cancer Summit with an unrestricted grant:
Bristol-Myers Squibb, Eli Lilly, Novartis, Pfizer, Roche and Sanofi Pasteur MSD
The funding enables ECPC e.g. to provide travel bursaries to patient groups from across
Europe to attend the ECPC Cancer Summit.
Dear Participants, Cancer causes great suffering. Cancer destroys lives and families across the continent.
I have met cancer patients on various occasions and I am inspired by their courage and determination in fighting this terrible disease.
It is through our unwavering commitment and determination that we can help them in their long and painful fight against the disease. Each of us can make a meaningful contribution. Each of us has a role to
- play:
- health
- professionals,
- policy
- makers,
administrations, civil society and industry.
This is what the European Partnership for Action against Cancer is about. The Partnership provides us the right framework to work together.
Our action does not end here. For many cancer patients, the treatment they need can be better provided - or is only available - across borders in another European country. The new legislation on cross border healthcare, once adopted, would enable patients to access safe and good quality healthcare all over Europe, and to be reimbursed for it.
The new law would also enable enhanced cooperation at the European level on European reference networks for example for rare cancers, so that patients could access the best possible expertise and treatment for their case.
I am committed to supporting action against cancer and would like to thank the European Cancer Patient Coalition for bringing us together to discuss how to make our partnership for action against cancer work.
John Dalli, Commissioner for Health and Consumer Policy
- 2 -
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK
Dear Delegates, I’d like to welcome you to our ECPC Cancer Summit at the Square. This magnificent building and its gardens has been restored and updated into a fantastic venue for this our fifth annual meeting. When you join us for our reception and dinner later you will be able to see some stupendous views over the city from the top floor.
This year our conference theme is “Making the Cancer Partnership Work” which is much more policy focused than the more workshop oriented approach we have had over the last four years in our Masterclass series of conferences.
Why is this? Two reasons. Firstly its a tribute to you and the way member groups have grown in capacity and capability over the last few years. You are more organized, sophisticated and knowledgeable than ever. When you represent your memberships you can add real weight to their voices and enable them to be heard locally and nationally.
Secondly the EU Cancer Partnership will be officially launched next Spring after being announced in September last year. This EU 27 wide initiative has a core objective of the sharing of cancer healthcare resources more effectively and efficiently. The aim is to avoid duplication and ensure coordinated delivery of services across the entire spectrum of institutions and professions involved in research and the provision of care.
The slogan “from bench to bedside” neatly sums up the range of focus and the programme carries a clear deliverable of reducing the number of new cancer cases by 15% by 2010.
Patient organizations have a key role to play here both locally, regionally, nationally and at the pan european level. We have made sure we have representation in several key areas of the programme so that we can safeguard patients interests and give a voice to your concerns.
We have dramatically increased the size of our Brussels office to ensure we have the resources to allow us to fulfill our representative commitments. We also intend to continue to build up our Forum Against Cancer Europe group of MEPs who now number over seventy so that we can ensure your interests are heard in the European Parliament in addition to the Commission.
You will be hearing from both MEPs and Commission staff over the next two days and I can assure you they will listen carefully to your informed, expert comments about cancer issues passed on to you by your memberships.
Finally let me thank the Commission for the very generous grant they have made to us to enable us to host this year’s event and a special thank you to Commissioner Dalli, his service and also to DG Research for the warm support that they have responded to the concerns of the cancer patient community.
Tom Hudson, ECPC President
- 3 -
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK
Dear Friends, Many of you know what it means to face the diagnosis of cancer. You know what it means to fight it. But you should not have to be alone in your battle. The European Partnership for Action Against Cancer is a unique effort at European level to combat cancer by bringing together a broad range of warriors committed to saving lives and helping those who suffer. Health professionals, health authorities, civil society organisations, policy makers, experts and many others are ready to commit and work together to achieve the goal of saving half a million lives by 2020. The experience of cancer patients and survivors is important in this joint effort.
There are still significant differences in new cancer cases and deaths from cancer across Europe. I am convinced that by working together at European level, we can make a positive difference in this respect. This comprehensive approach to tackling cancer includes several key areas, namely health promotion and cancer prevention, early diagnosis and screening, healthcare, research and health information and data. The European Partnership will enable the exchange of knowledge and best practices, as well as cooperation and the implementation of actions in all of these areas.
I hope that the Cancer Patient Summit will contribute to making the partnership work. The role of each of you can be significant in achieving this, not only at European level, but also in your countries, regions, cities. Together, we can achieve more.
Paola Testori-Coggi, Director-General for Health and Consumers
- 4 -
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK
Dear Delegates,
The 2010 ECPC Cancer Summit ‘Making the Cancer Partnership Work’ focus is on keeping the “patient at the centre” and with this aim will bring together as equal partners patient organisations, clinicians, researchers, MEP’s, commissioners and, in particular, the Commissioner for Health John Dalli. The aim of the summit is to create a platform for ongoing discussions between all relevant stakeholders in addition to the dissemination of information about the plans for action coming out of the European Cancer Partnership.
I am especially proud that this year ECPC gives special attention to the ever growing problem of rare and less common cancers. At last the challenges surrounding access to appropriate and effective care and therapy with rare and less common cancers will be in the spotlight. This, it must be said, is a rarity in itself. Owing to smaller patient populations, we are often the poor relation when it comes to our voice being heard. However the increasing understanding of how the cancer cell develops we will eventually see that even the commonest of cancers will be divided and subdivided into smaller patient populations.
While prevention and screening initiatives are welcomed and supported by ECPC, we are mindful that we also need to take an increasingly different approach when talking about the rare cancers which inhabit an area where such initiatives are not relevant and are of little help. Rather we need not only to discuss the ways in which we can improve access to appropriate and effective treatment and care but also how we can encourage a real commitment to collaborative research programmes by investing in European Networks of Reference. These provide a strong platform for translational research, in other words, research that is transformed from theory and lab based work into effective cancer therapy that saves lives. An approach often named as ‘from bench to bedside’.
ECPC’s Rare Cancer Action Group regards as essential actions on collaborative research programmes, centres of expertise and cross border health care and ongoing medical education of health care professionals, especially in the primary care area when timely and correct diagnosis is of crucial importance to the survival of patients with rarer cancers. We particularly support the acceptance by professional and regulatory bodies that patients, through their representatives in the rare cancer community, are involved in the design of clinical trials which have as a feature greater flexibility and a more rational understanding of ‘risk’ in the context of the reduced options available for effective treatment for such patients.
All EU citizens deserve access to the best care. Something which member states should have at the heart of their healthcare policy as a right rather than as an aspiration. The Cancer Partnership should go some way towards remedying obstacles and barriers that unnecessarily prevent this being realised. As such it is to be welcomed.
Kristina Andrekute, Chair ECPC Rare Cancer Action Group
- 5 -
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK
TABLE OF CONTENTS
About ECPC …………………………………………………………………………………... 7 ECPC Board …………………………………………………………………………………... 14 ECPC Team ………………………………………………………………………...……….… 15 ECPC Members in Action ……………………………………………………………………16 ECPC Membership ……………………………………………………………………………18 The European Partnership for ‘Action Against Cancer’ ……………………………… 24 About the Forum Against Cancer Europe (FACE) …………………………………….. 31 ECPC Cancer Manifesto ……………………………………………………………………. 39 ECPC Cancer Summit Conference Programme ……………………………………….. 40 Questionnaire ……………………………………………………………………………… 44 Plenary: MAKING THE CANCER PARTNERSHIP WORK …………………………….. 47 Session 1: INVESTING IN PRIMARY AND SECONDARY PREVENTION ………….. 60 Keynote: COMMISSION’S COMMITMENT TO ACTION AGAINST CANCER ……… 70
Session 2: PARTNERSHIPS CROSSING BORDERS – Striking a Balance between policy for excellence and a policy for cohesion
…………………………… 73
Plenary: SHARING BEST PRACTICE IN HEALTH PARTNERSHIPS ……………….. 79 Session 3: IMPORTANCE OF CANCER RESEARCH ………………………………… 92 Session 4: UNMET NEEDS, INEQUALITIES AND INFORMATION …………………. 107 Closing Session: FINAL CONCLUSIONS ……………………………………………… 112
- 6 -
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK
Introduction
Established in 2003, The European Cancer Patient Coalition is the voice of the European cancer patient community, uniquely representing the interests of all cancer patient groups from the major to the rarer cancers. It has been established to represent the views of cancer patients in the European healthcare debate and to provide a forum for European cancer patients to exchange information and share best practice experiences.
We derive our mandate to speak with "one voice" for all cancer patients from our membership and our democratic structure. With its motto "Nothing about us without us!", ECPC represents over 300 patient organisations in 41 countries, including the 27 EU member states.
ECPC’s EU Health Policy Work
One of ECPC's key priorities is to make cancer a priority for action on the European health policy agenda. With its policy activities, ECPC aims to effect change in legislative or regulatory policies to help optimise cancer prevention, detection, treatment and care throughout Europe. The policies also need to ensure that gaps within and between Member States are identified and eradicated, and that best practice is shared.
By speaking with a united voice for all cancer patients, with cancer affecting one third of the EU population, ECPC managed to give a new impetus to tackling cancer more forcefully and collaboratively by the EU and its 27 Member States. Combined efforts between patient groups, members of the European Parliament, the Commission, the EMEA, EU Member States, industry and the oncology community made the fight against cancer once again a political priority for action.
Through our Brussels office, ECPC will continue influencing the European health policy agenda by working closely with e.g. the Members of the European Parliament, the EU Commission (DG Sanco, DG Research, DG Internal Market, DG Enterprise), the Health Policy Forum (HPF), the European Medicines Agency and the EU Committee of Experts on Rare Diseases.
In 2009, ECPC has worked with all stakeholders to make cancer a political priority: for example, in the "European Partnership on Action against Cancer", with the "MEPs Against Cancer", in the European Parliament Elections, the EMEA "Patient & Consumer Working Party", the European Health Policy Forum, the Rare Disease Task Force, or EU research projects like "European Guidelines for Colorectal Cancer Screening" or "RARECARE".
ECPC six Guiding Strategic Goals
••
Making cancer a priority for action on the European health policy agenda Effecting change in legislative or regulatory policies to help optimise cancer prevention, detection, treatment and care throughout Europe.
•
Ensuring that all cancer patients in the EU have access to timely and appropriate information about prevention, screening, early intervention, on-going clinical trials and best quality treatment and care.
- 7 -
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK
•
Empowering cancer patients to take an active role in shaping European and national policy that impacts on cancer prevention, treatment and care
••
Ensuring that best cancer practice is shared across the EU and gaps within and between Member States are eradicated.
Fostering co-operation between the cancer patients’ organisations within Europe and to develop a common policy
The Coalition has achieved a lot in its first five years after foundation and, with 270 member organisations in 41 countries (including all EU27), has grown to an influential organisation.
Having employed its first full-time director and anticipating changes in the Brussels office, it must now reconsider its strategy, decide on its five year plan and how it can best meet its future goals.
ECPC Objectives 2011-12 1. Influence EU policy that has an impact on the prevention, detection and treatment of cancer
•
Rationale: Cancer patients have a right to have a seat at every table where EU health policy that impacts on cancer patients is being decided. Patients need to become equal stakeholders.
•
Priorities:
o Be an important and trusted point of reference for EU institutions on the patients' perspective of cancer.
o Bring key cancer issues to the attention of the Commission and the EU Parliament, e.g. through MEPs Against Cancer (MAC) and in consultations.
o Be represented on all most relevant EU committees that influence cancer policy from health to research and regulatory issues (e.g. DG Sanco Rare Cancer Task Force, Health Policy Forum; EMEA Committees e.g. PCWP, EMEA Management Board).
2. Outreach: Support ECPC members in their capacity building efforts
•
Rationale: The stronger ECPC and its members are, the more able ECPC will be to influence EU and national health policy.
•
Priorities:
o Increase membership across the EU, representing all cancer types from the common to the rare cancers. Members should include key influential cancer patient groups on a national and EU level, as well as young organisations in need of support.
o Support capacity building efforts of ECPC member organisations through the provision of Masterclasses, advocacy tools, policy information, toolkits etc.
o Creating/supporting national advisors, to promote implementation of cancer plans and cancer advocacy at a national level.
3. Build ECPC’s capacity through strategic partnerships
•
Rationale: Strategic partnerships are vital to achieve ECPC's strategic goals since a unified voice is more powerful and of mutual benefit. Duplication of efforts weakens the strength of all groups involved in the fight against cancer.
•
- 8 -
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK
•
Priorities:
o Build strong partnerships, alliances and embark on joint initiatives with other key
European cancer stakeholders (e.g. other patient advocacy groups and professional societies).
o Extend existing partnerships and create new alliances.
4. Build internal capacity through an effective ECPC organisation
•
Rationale: A strong ECPC organisation with solid funding will allow ECPC to increase the scope of its activities, communicate more widely, and operate effectively.
•
Priorities:
o Increase ECPC's overall funding base. Identify new funding streams. o Extend our policy office in Brussels. o Ensure effective ECPC Secretariat. o Expand the number of cancer patient advocates who can represent ECPC in different initiatives through the provision of a training and mentorship programmes.
o Secure a highly motivated and active ECPC board with representatives from common and rare cancer groups.
ECPC Summary of activities for 2010
European Medicines Agency (EMA) - ECPC has been a valued member of EMA's Patient & Consumer Working Party (PCWP) for years, represented by ECPC's Vice President Heide Preuss. Recently, it was confirmed that ECPC complies with all stringent criteria and its membership was renewed. Furthermore, The EMA nominated Albert van der Zeijden (Netherlands) and Greetje Goossens (Belgium) as observers in the meetings of the EMA Pharmacovigilance Committee. The Committee has a 3 day meeting every month. The EMA Secretariat introduced the new package leaflet template which has recently been released for public consultation. ECPC will comment until 24 May 2010. In June, Heide will also participate in a conference where an assessment of the effectiveness and efficiency of the European authorization system for medicines will be discussed. See also http://ecpc-online.org/ema
Eurocan Platform - Currently, the EU sets up a key new research platform coordinating "Personalized Medicine and Translational Cancer Research" across Europe, funded by the EU Commission. This will be one of the most influental cancer research project in the EU, led by the Karolinska Institute with 28 formal project partners. ECPC will be the only patient partner in the project, and we will be member of the project's Steering Group and Communication Workpackage.
EUnetHTA - Especially in the case of cancer therapies, there are controversial discussions around the costs and value of new treatments. More and more countries are introducing "Health Technology Assessments" ("HTA", e.g. by NICE in the UK), deciding upon whether a technology becomes available to patients or not. It is important that patient groups are involved when these methodologies are discussed and used. Unfortunately, there is yet no standard methodology to process of HTAs in the various EU Member States today. The EUnetHTA Joint Action, initiated and funded by the EU Commission, is a formal collaboration between EU Member States and the Commission, aiming at collaboration on HTA across Europe. ECPC has now been invited to become a member of the EUnetHTA's Stakeholder Forum. By participating, ECPC will make sure that the cancer patient community contributes constructively. See http://www.eunethta.net/
- 9 -
ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK
Youth - The ECPC Youth Platform, in connection with the ECPC membership will allow young people an active platform to collaborate, share and access knowledge and resources, access documents, professional knowledge so as to enable a systems to exist that enable "Cancer Education and Awareness for All Young People" to be a reality.
The EU "Youth in Action Programme" aims to achieve the following general objectives:
• promote young people’s active citizenship in health and their European citizenship with young people from different Member States in particular in health;
• develop solidarity and promote tolerance among young people, in particular in order to foster social cohesion between patients and non-patients;
• foster mutual understanding between young people in different countries of cancer; • contribute to developing the quality of support systems for youth activities and the capabilities of civil society organisations in the youth field in the area of health;
The platform will contribute to the ECPC objective by promoting a healthier ways of life and reduce major diseases and injuries in the Young age. It will tackle the question of 'How can young citizens tackle health issues in a cross-sectoral way in practice?'
FACE - Forum Against Cancer Europe – please see FACE section on page 31f
Rare Cancers - Some ECPC members suggested that ECPC should support its members representing rare cancers, coordinating activities across diseases. Special challenges of rare cancers are e.g. the lack of local medical expertise, late diagnoses and poor referral rates, not enough interest in research, not enough clinical trials, or the lack of funding and public attention for rare cancers. Therefore, in March 2010, ECPC has launched its "ECPC Rare Cancers Action Group" for those members representing rare cancers. Even though the group is still in an early phase, first priorities have been discussed. ECPC's membership, Board and staff are now committed to take forward a number of joint initiatives and partnerships. The group is also in the process of launching a Declaration on rare cancers at the EU level to highlight the particular concerns of cancer patients. The ECPC Rare Cancer Ation Group is led by Kristina Andrekute from the ECPC member organisation "Lithuanian Rare Cancer Patients Association".
