European cancer patients call for more access to innovation in oncology

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 makes 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.

Click here to download the white paper document

Watch ECPC Director, Lydia Makaroff, introducing the White Paper on VJOncology channel


The White Paper promotes seven priority recommendations for European Action by EU institutions and Member States:
  1. Patients should be routinely involved decision making processes with regulators, academia and industry in the development of innovative cancer treatments;
  2. There should be a centralised, relative effectiveness assessment that is valid in all EU Member States and takes into account patient-reported outcomes;
  3. 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;
  4.  Member States should invest in innovative radiotherapy equipment and workforce training to help overcome inequalities in access to radiation oncology;
  5.  The focus of development of innovative surgical techniques should be to improve long-term survival and the quality of life;
  6. 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.
  7. 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.


Download the White Paper on the Value of Innovation in Oncology

Download the Executive Summary in Polish