Strengthening the Campaign for Colorectal Cancer

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1 Strengthening the Campaign for Colorectal Cancer Health is a key priority for the European Commission. Over the years EU Institutions have increasingly sought to support and co-ordinate Member States efforts to improve cancer prevention, screening, diagnosis, treatment and care and research. Increasingly these supporting activities bring countries together to share and learn from each other to deliver high quality and cost effective care to their local population. Prevention is proven to be the most effective and also the most cost effective way of tackling poor health. It is widely believed that cancer can be prevented by modifying behaviour, such as smoking or addressing risk factors such as obesity and maintaining a healthy diet. Other interventions such as daily physical activity and keeping alcohol consumption under control are all likely to help keep the citizens of Europe healthy. Cancer is the second most common cause of death in the EU. Every year about 3.2 million people are diagnosed with cancer in the EU; 29% of deaths for men and 23% for women were from cancer. Colorectal cancer is the second most common cause of death from cancer. EuropaColon fully supports the EU aim to reduce cancer incidence by 15% by Initiatives by the Commission have included cancer prevention and early diagnosis plus improvements in care and treatment of people diagnosed with cancer. Europacolon welcomes this focus as feedback, from our Affiliate and Associate partners, suggests substantial inequalities in cancer control or care among Member States. It is of great concern that cancer death rates vary so dramatically across the EU, in some countries being twice as high as in others. These inequalities are also noticed between men and women with colorectal cancer. Delivery of health is the responsibility of the Member States, however, the EU complements local work by making suggestions on screening; offering advice to improve public health or preventing human illness and diseases or removing sources of danger to people s health. Increasingly Member States co-operate on health issues, exchange experience and learn from each other as they are all facing the same challenges. The importance of public health was first emphasised in the Lisbon strategy later replaced by the Europe 2020 strategy, stating the overall aim of the EU in health and providing a framework for action in the future. The new working title for EU social and health activity is Healthy Life Years working on the principle that healthy citizens are more likely to keep the economy active. Needless to say prevention and early detection are key elements in this strategy. Cancer Policy News Patient Advocate Groups Protest Against Anachronistic Dutch Medicines Act at 2013 European Cancer Congress Patient advocates from across Europe attending the European Cancer Congress on 27 Sep to 1 Oct 2013 in Amsterdam, represented by 70 patient advocates signed a petition during the

2 Congress, strongly objecting to the regulation which forbids patient advocates to enter the Exhibition Hall. Read more Reducing Inequalities in the EU Health is a devolved national issue and therefore at a European level it is purely advisory. Member States can amend, veto or ignore recommendations and Directives fromeuropeif they feel this does not suit their national interest. However the issue of inequality within the EU is a concern not only to many MEPs but also to all non for profit organisations representing the interests of their patient population ineurope. EuropaColon and many others continue to highlight this at EU level but also within nation states. In 2009 the EU launch a debate on the future of health care across the EU which is ongoing and will take some time to reach conclusions and achieve noticeable outcomes for the whole region. The introduction to the debate acknowledges the large gaps in health between and within Member States, accepting that gaps may be growing and possibly made worse by the economic climate. The EU acknowledges that between EU Member States a 5-fold difference exists in deaths of babies under one year of age, a 14.2 year gap in life expectancy at birth for men and an 8.3 year gap for women. Large disparities in health are also found between regions, rural and urban areas and neighbourhoods. In an EU report in 2010, it was recognised that health inequalities start in early life and persist into later generations. This can include inequalities in access to education, employment and health care. The reasons for these inequalities are unjust and can be avoided. Increasingly social problems are being seen as linked to health problems requiring an integrated approach. It seems that a move towards a more integrated approach involving social and health considerations could be adopted in the future. But as always this requires political will and often it is easier to ignore such ideas rather than bring about change. EuropaColon welcomes the frank approach taken in publications from the Commission but feels that more should be done at national level to make sure that these gaps and inequalities are reduced. This supportive approach acknowledges the important role that patients could play in the deliver of health in Member States but this seldom filters through to individual States. As an organisation working in Europe we acknowledge our responsibility to work with our partners to deliver high quality information and support to patients and will campaign to reduce inequalities and provide access to the best treatment and care for all patients. Recommendations:

3 EuropaColon welcomes the proactive approach adopted by the Commission with regards to health inequalities but urges Member States to follow a more integrated approach to health and social care. Information is the key to understanding and managing any health issue and we believe all citizens should have access to accurate and relevant information for their condition. We believe every citizen has a right to the highest standard of health and social care. EuropaColon supports the European Patients Forum call that ALL patients have a fundamental and legitimate right to access information about their health, medical conditions and the availability of treatments including knowledge of the best available management of their disease. Health Literacy Health literacy has been defined by Prof. Kickbusch of the World Health Organisation, as the ability to make sound health decisions in the context of everyday life at home, in the community, at the work- place, the healthcare system, the market place and the political arena. The EU Health Strategy is titled Together for Health implying a need for engagement at all levels in the delivery of health, access to treatment and care. This starts with the politicians and health officials and works through doctors and nurses down to the patient. EuropaColon will support these recommendations when possible with all the relevant partners. Together for Health is a complex and challenging concept that has an impact on most aspects of ones life as a patient and is central to the health strategy of the EU. These wide ranging themes will be developed over the coming years and attract additional traction over the years as more research on health and health outcomes becomes available. The ongoing and greater empowerment of patients will support this development as they engage more and more within their local health community. This initiative places personal health responsibility firmly at the foot of every citizen; need to understand their condition through information about their diagnosis and the impact it will have on their lives; be expected to manage the day to day impact of the condition and develop healthy and proactive relations with their healthcare providers. By doing so they will become empowered and able to fully grasp and manage their condition without repeated involvement of a healthcare professional. EuropaColon is in favour of moves to improve health literacy and believe we can all get more out of life if we become empowered as patients and take responsibility for our own health. Disempowered patients can be offered less effective treatment and car. Importantly they might fail to acquire the necessary skills to help manage the progression of their illness or disease, depending on others to support them. Recommendations:

4 EuropaColon calls on all citizens to take responsibility for their own health pre- and post diagnosis. Understanding our human rights as a patient to empower us and lead to changes in the way our own healthcare is delivered. Every patient should understand their own illness and interact in a knowledgeable way with their healthcare professionals. Policy Statement on Multidisiplinary Cancer Care Find EPAAC's (European Partnership for Action Against Cancer) policy statement here The origin of the document is the EPAAC website Improving outcomes in cancer We hosted in November 2015 our third meeting on Improving Outcomes in Cancer in the Parliament in Vilnius, Lithuania. Topics covered advances, issues and challenges in cancer care that should be taken note of by Health Ministries, Members of Parliament, Healthcare Professionals and Patient Advocates. The meeting was presided over by the Chair of the Health Affairs Committee of the Lithuanian Parliament, Mrs Dangutė Mikutienė MP. Our partner organisation for this meeting was POLA, the Oncology Patient Association in Lithuania who actively helped set the agenda and recruited appropriate speakers for the event. The agenda and report for the meeting are available on the EuropaColon website. The full report can be viewed here - Lithuania 2015 Below are the presentations available in PDF format: Annalisa Trama Jacqueline Hall Giedre Smailyte Luzia Travado Marleen M. Kaatee Gediminas Zizys Vytautas Basys Aldona Kerpyte 2014 Meeting: EuropaColon with our partners AECC, SEOM and EuropaColon Espana hosted a meeting in the conference hall of the Spanish Ministry of Health in September Over 100 people heard presentations from some of the leading clinical figures in Spain and Europe. Spanish Meeting (English Agenda) The Conference Improving Outcomes in Cancer - was designed to complement discussions in anticipation of a review of the Spanish Cancer Plan. The meeting covered topics such as obesity the new killer disease, Big data and the benefit of centralised information sources to benefit management and assist in delivering better care, the trend towards personalised medicine in treatment, better use of medicines management, good practice in CRC screening and inequalities of access to treatment.

5 The full report and presentations are available to view in the documents library. Written Declaration on the Fight Against Colorectal Cancer In December 2010 the EU Parliament adopted a declaration to support the fight against colorectal cancer, signed by a majority of Members of the European Parliament. This Declaration if acted upon has the potential to save many lives. Colorectal cancer is the second cause of cancer deaths in the EU; second only to lung cancer in men and breast cancer in women. Many of these deaths occur needlessly, as they could be prevented through screening and early detection. This is a "call for action" from the European Parliament to increase pressure on the Commission and the Member States to take action in this important health area. The declaration will act as a platform to assist EuropaColon in making contact with MEPs to support our work across Europe in order to save lives and give citizens of Europe access to the most up to date treatment and care. EuropaColon will be working to bring the benefits of screening and early diagnosis to the attention of governments, ministries an citizens, to raise awareness of the savings, in terms of lives and cost to the economy, achieved from early diagnosis through formal population screening and effective treatment and care. The written declaration can be downloaded - Here EuropaColon White Paper Our White Paper aims to establish the boundaries for the treatment and care of colorectal cancer patients across Europe. As far as we know this is the first White Paper specifically for Colorectal Cancer and reflects the state of colorectal cancer treatment and care in Europe. All too often in these days of financial stringency health features lower down a government s priority list than road infrastructure and consequently citizens are left to endure less appropriate standards of care. We hope this White Paper can establish the standards that should be adopted across Europe. Read the full White Paper by clicking here. A summary can be found by clicking here. European Innovation Partnership on Healthy and Active Ageing In October 2010, an initiative entitled Innovation Union was presented as part of the Europe2020 strategy. The ageing of society has important socio-economic implications, putting pressure on health and social systems. Prevention of ill health in old age can play a major part in successfully addressing these challenges. The Active and Healthy Ageing Innovation Partnership (AHAIP) was officially launched in early 2011 and aims to

6 Improve the health and quality of life of older people, enabling them to live active and independent lives as long as possible; contribute to the sustainability and efficiency of health and social care systems; Foster competitiveness and business opportunities. Two Units within the Commission are charged with an overall objective to increase Healthy Life Years by 2 years by The Partnership published a Strategic Implementation Plan, addressing three main pillars of activity: Prevention, screening and early diagnosis Care and cure Independent living For each of these, three key priorities have been agreed, to which practical actions are being linked, the key priorities are: First pillar: Health literacy, patient empowerment, ethics and adherence Personal health management Prevention, early diagnosis and functional decline Second pillar: Guidelines for care, workforce issues, multi-morbidity, poly-pharmacy, frailty, collaborative care Multi-morbidity Capacity building and replicating successful integrated care systems Third pillar: Supporting people with cognitive impairments Enhancing deployment and take up of interoperable independent living solutions Supporting social inclusion of older people This work will continue to evolve with the first actions complemented by new actions in line with priorities such as health literacy, patient empowerment, personalised health management, prevention and early diagnosis of functional and cognitive decline, and extending active and independent living through open and personalised solutions. The Commission will work closely with national governments and a wide range of stakeholders to keep the Strategic Implementation Plan moving forward. EuropaColon believes that every citizen of Europe should have access to formal population screening, information on how to prevent cancer and lead a healthy lifestyle, and suitable treatment and care if they are diagnosed with cancer. We will be campaigning and working with other stakeholders to deliver these beliefs both within the EIP and also on our own to make sure that as we age we can be assured of good and effective treatment and care so that we can continue to live as healthy lives as possible for as long as possible and in so doing continue to contribute socially and economically to the

7 future of Europe. Back to top Active Healthy Ageing People are living longer than ever before and it is expected that the number of people aged 65+ in Europewill almost double over the next 50 years to 151 million in This is a huge challenge for both economies and for families. The EU is looking at ways to improve the quality of life of older people. With this increase in numbers, health services across Europe will be under a lot more pressure in future. As a result there are plans to change the way care is delivered, moving away from hospital-based care to more home-based services that will bring social and health care together. This is expected to save money and be more focused on the person. This will mean in future we will each be expected to take more care of ourselves; more information about health will attempt to prevent disease. People will be looking at new models of care that bring health, social, community and self-care closer together. Another area of interest to politicians is living and working conditions. It is felt these need to be looked at to help older people to remain active and healthy for much longer. EuropaColon is particularly interested in the emphasis on prevention, screening and early diagnosis. We believe screening is one of the most effective ways to identify, treat and manage symptoms of colorectal cancer. This is an important area of work for us and we will be working closely with our partners to ensure that effective screening is in place in all countries where we are working. The Economist Intelligence Unit, sponsored by Abbott, recently published a new report looking at ways to extend healthy life years. The report can be downloaded: digitalresearch.eiu.com EuropaColon will work closely with EU policy makers to emphasise the importance of screening and early detection as a means to save lives and prevent cancer. We will work with other stakeholders to provide data and examples on how screening and early detection can improve the lives of people as they age while also to reducing pressure on local economies.