European cancer patients call for more access to innovation in oncology

New White Paper on the Value of Innovation in Oncology

• Healthcare reform proposals from the European Cancer Patient Coalition would improve access to innovative oncology care pathways, technologies, and treatments
• We make 40 policy recommendations for greater emphasis on patient-centred and personalised cancer treatment, based on global evidence and best practice
• We defined 10 areas for improving access to innovative medicines:

Amsterdam, Netherlands, January 28, 2017:  At the European Cancer Congress 2017 in Amsterdam, the European Cancer Patient Coalition launched a new white paper on the Value of Innovation in Oncology. It make recommendations for sustainable and equitable access to innovative cancer treatments and care pathways. Each year, over 3 million Europeans are diagnosed with cancer, and over 1 million Europeans die from the disease. With a growing and ageing population, action is urgently needed to address this major global health and societal concern. The White Paper was developed to help policy-makers understand how they can improve access to innovative cancer care and treatment.

The White Paper promotes seven priority recommendations for European Action by EU institutions and Member States:

Patients should be routinely involved decision making processes with regulators, academia and industry in the development of innovative cancer treatments.

There should be a centralised, relative effectiveness assessment that is valid in all EU Member States and takes into account patient-reported outcomes.

There should be a stronger enforcement of the existing access framework for Member States,, i.e. to take the decision of setting a price and reimbursement of a medicine within 180-days from the EMA authorisation and to communicate transparently the criteria.

Member States should invest in innovative radiotherapy equipment and workforce training to help overcome inequalities in access to radiation oncology.

The focus of development of innovative surgical techniques should be to improve long-term survival and the quality of life;

Innovative eHealth and mHealth tools should be used in parallel with innovative care pathways, to increase patient-centricity by design and by default, and should be subject to solid, visible and transparent assessment and governance by an EU-level monitoring body.

The performance of standardised cancer patient pathways should be carefully monitored, and strategies to ensure that the pathways are should be included into national cancer plans.

“European cancer patients should have timely and affordable access to the best treatment and care available, throughout their life. We wrote this report based on our experience, to guide policy makers and the cancer community with real-world recommendations for improving patients’ involvement in decision-making related to innovation in cancer care and treatment in Europe” said the President of the European Cancer Patient Coalition, Prof Francesco De Lorenzo, who is also a cancer survivor. “There is no meaningful innovation without the involvement of patients throughout the development of new health technologies.”

The white paper was developed over a one-year period, in collaboration with Interel Public Affairs, oncology experts, and the patient organisations that form the membership of the European Cancer Patient Coalition. It includes over 30 evidence-based policy recommendations spanning six healthcare areas – innovative medicines, diagnostics, radio-oncology, surgery, mHealth and care pathways

“In 17 countries of the European Union, cancer has now overtaken cardiovascular disease as the leading cause for premature death. All countries in the European Union have a responsibility to provide adequate responses to the growing impact of cancer” said Prof Mark Lawler, Chair in Translational Cancer Genomics, Queen’s University Belfast and Vice President for Research and Innovation, European Cancer Concord. “Europeans with cancer live a paradox: personalised health interventions have the potential to improve cancer outcomes,  but they are not available to all the people who would benefit. This imbalance creates more inequalities. The recommendations in the European Cancer Patient Coalition White Paper are a first step toward appropriate policy change in Europe, to help more people with cancer gain access to innovative care and treatment.”.

Prof Michel Coleman, Professor of Epidemiology and Vital Statistics, London School of Hygiene and Tropical Medicine and leader of the CONCORD study for the global surveillance of cancer survival, commented on the need to step up the political debate on cancer: “Communicable diseases are responsible for about 1% of all deaths in Europe, while the proportion of deaths due to cancer is about 28%. Yet, the European Union enjoys the services of, the European Centre for Disease Prevention and Control which focuses only on communicable disease. Why don’t we have a European agency for the prevention and control of chronic diseases, including cancer? Europe still struggles to develop a common approach to fighting cancer.

This is particularly evident in relation to innovation in oncology - patients would benefit greatly from the improvement and harmonisation of policies concerning eHealth, electronic patient records, and health technology assessment. The White Paper contains recommendations and actionable solutions for European and national policymakers. It is now up to policymakers to show the necessary political will to implement change in cancer care.

“These recommendations are offered as a first step toward appropriate policy change in Europe that will help more people with cancer access innovative care and treatment” concluded Prof Coleman: “If adopted, these new policy proposals would not only lower the social and economic burden of cancer but would also reduce inequality and improve the health outcomes of people with cancer

The European Cancer Patient Coalition gratefully acknowledges the support of Bristol Myers-Squibb, Eli Lilly & company, MSD, Novartis, and Roche in producing this white paper. The scope and the content of the white paper is the sole responsibility of the European Cancer Patient Coalition

For more information, see www.ecpc.org/innovation or contact:

Francesco Florindi

Head of EU Affairs

Tel: +32 (0) 489 64 48 57

francesco.florindi@ecpc.org

ENDS

NOTES TO EDITORS:

About Cancer

Cancer is a group of diseases that involves increased cell growth, with the potential to spread to other parts of the body, and it s one of the largest global public health concerns. Each year in Europe, there are an estimated 3.45 million new cases of cancer and 1.75 million deaths from cancer. Of the 17.9 million people living with cancer in the European Union, nearly one quarter (24%) have a rare cancer, equivalent to over 4.3 million people. The most common cancers are breast cancer, colorectal cancer, prostate cancer, and lung cancer. Approximately 28% of all deaths are caused by cancer in the WHO European Region. The most common causes of death from cancer are lung cancer, colorectal cancer, breast cancer, stomach cancer, and pancreatic cancer.

About the European Cancer Patient Coalition

The European Cancer Patient Coalition is an umbrella organisation of over 400 cancer patient organisations in 46 countries. The Coalition works for a Europe of equality, where all European cancer patients have timely and affordable access to the best treatment and care available, throughout their life. The European Cancer Patient Coalition believes that cancer patients are the most important partners in the fight against cancer and against all the cancer-related issues affecting our society. Policy makers, researchers, doctors and industry should recognise cancer patients as co-creators of their own health.