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Digestive Cancers Europe

DiCE

Our mission is to reduce the incidence and mortality of all digestive cancers in Europe, and improving the quality of life of all patients with cancers of the digestive tract : oesophageal, stomach, colon, rectum, pancreas and rare cancers.

Lobbying Activity

Meeting with Aurelijus Veryga (Member of the European Parliament)

23 Apr 2025 · Improving survival and quality of life for digestive cancer patients through advocacy and equal access to care

Meeting with András Tivadar Kulja (Member of the European Parliament)

17 Mar 2025 · Digestive cancer

Response to Health technology assessment - Joint clinical assessments of medicinal products

2 Apr 2024

Digestive Cancers Europe (DiCE) is a European umbrella organisation with close to 40 national members, representing patients with digestive cancers. DiCE would like to suggest the following improvements to the DRAFT text: 1. Embedding patient involvement into entire JCAs is essential to its success. To that end, JCA sub-group needs to consult patients or POs in the preparatory phases not only seek their opinion on the draft reports. 2. Both individual patients and patient organisations (POs) should be recognised as strategic stakeholders. Hence, we would suggest adding POs in the text of the Implementing Regulation on the same level as individual patient representatives. 3. Broadening the scope of PI of Article 6. As it currently stands, it can exclude substantial parts of society, leading to the creation of inequalities in PI and risk becoming highly unrepresentative. 4. To ensure full inclusiveness in the process remuneration should be offered for the time spent and financial as well as technical support provided. For instance, to navigate the HTA IT Platform. Moreover, language should not be a barrier to active participation. 5. Introduction of a balancing act between PI and CoI definition.
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Meeting with Cristian-Silviu Buşoi (Member of the European Parliament) and Cancer Patients Europe and Lung Cancer Europe

5 Dec 2023 · speaker at the fifth annual European Cancer Forum entitled ‘Patients, Policies, Plans: is Europe on track to beat cancer?’

Response to Vaccine-Preventable Cancers

3 Feb 2023

Digestive Cancers Europe (DiCE) is a European umbrella organisation with close to 40 national members, representing patients with digestive cancer. To mitigate the rising incidence of liver cancer across Europe, DiCE finds it vital that preventative and curative measures for viral Hepatitis B (HBV) and Hepatitis C (HCV) are adhered to, as recommended in the Action Plan for the Health Sector Response to Viral Hepatitis in the WHO European Region. This includes: 1) Mass HBV immunisation for all newborns and high-risk groups across Europe. 2) Control of HCV infection transmission through raising awareness, improving screening, and offering treatment to infected individuals. 3) Development of an effective vaccine against HCV. 4) Widespread and equitable access to therapies for HBV and HCV infections. In support of these recommendations, we would like to highlight that Hepatitis B is classified as a class I carcinogen; chronic HBV infection carries a 10 - 25% lifetime risk of developing HCC (Flores et al., 2022). Chronic HBV infections partly underlie the increasing prevalence of liver cancer in Europe (ECDC, 2022, Campbell et al., 2021). This especially applies to countries that implemented the preventive anti-HBV vaccine relatively late. The World Health Organisation reports that hepatitis B vaccination has dramatically reduced infection rates among children in Europe in the past decades highlighting its efficacy (WHO HBV, 2017).
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Response to A European Health Data Space

28 Jul 2022

Digestive Cancers Europe (DiCE) applauds the European Commission for the proposal on European Health Data Space. DiCE believes that health data can improve health systems and advance research, especially in area of cancers such as digestive, where better diagnostic tools and treatment are urgently needed. In relation to EHDS we would like to share the following reflections. 1. Patient centeredness EHDS will only fulfil its potential if citizens and patients are included in its design and implementation. For this reason, DiCE would recommend including patients’ perspective and ensuring that infrastructure is built with end users (patients) in mind. This should be achieved by inclusion of patients’ representatives in the governance of the EHDS Board and national digital health authorities as well as health data access bodies. Patients’ participation should be ensured at each level from the design stage to implementation and roll-out, their expertise can improve outcomes for all parties concerned. Patients’ participation should be accompanied with necessary support (i.e., technical language being made more accessible) and reimbursement for their time. 2. Policy and data cohesion DiCE would also like to draw attention for the need for better coherence among all currently existing tools and initiatives at both European and national level. Policy coherence and simplification needs to be established with for instance (but not only) Regulation (EU) 2016/679, Directive (EU) 2011/24 including EC Delegated Decision (EU) 2014/286 and EC Implementing Decision (EU) 2019/1269. In addition to policy cohesion, a standardised European health data format is a crucial prerequisite. 3. Making health data accessible for all Patients should be fully informed and in control of data usage (especially secondary usage). But to truly achieve this, patients need to understand often technical vocabulary associated with data protection legislation. With this in mind, we would suggest an education campaign across Europe to empower citizens. That would allow them to be fully informed of their rights and potential consequences of sharing and exchanging health data. 4. Protecting misuse of health data In terms of secondary use of data all caution must be taken to ensure that commercial entities can not use health data for purpose other than advancement of public good (health). We would like to point out that complete data anonymisation is not possible. It is our concern that technological safeguards, despite good intentions of the regulator, might not protect against misuse of patients’ data. To that end, we would suggest a more granular approach in the definition of what entities can obtain data permits. The common European purposes for re-use, as defined in Article 34, are too broad and need better safeguards. For instance, one could distinguish between types of commercial entities. This would allow patients to choose only health related entities to use their data, if they wish so. While other patients might want to share their health data more broadly. To build trust in the EHDS a system of fines needs to be established that would be sufficient enough to secure compliance. Given the sensitivities of health data, the fines should be at least at the same level as in GDPR, if not higher. As a concluding remark, we would like to point out that generally patients are willing to share their data for purposes of medicine advancement and to help other patients and their families avoid suffering and pain they experienced. However, if they can not control and monitor who uses data especially from private entities, they are less inclined to share it. We would strongly recommend, that in order to ensure that regional inequalities do not hinder the success of EHDS, a substantial funding is secured for national implementation. It would allow to address potential obstacles such as health literacy, access to digital means, and digital skills.
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Response to Cancer Screening Recommendation

21 Feb 2022

Digestive Cancers Europe (DiCE) notes that the Beating Cancer Plan aims at updating the 2003 guidance (Council Recommendation) on cancer screening based on the latest scientific advice. Digestive Cancers Europe (DiCE) is the European umbrella organisation of a large group of national Members representing patients with digestive cancer – colorectal, gastric, liver, oesophageal, pancreatic, and rare cancers. Our mission is to contribute to early diagnosis and decreased mortality from digestive cancers and to increase overall survival and quality of life. The total medical and non-medical cost of colorectal cancer has increased from 13.1 billion € in 2009 to over 19 billion € today. Colorectal cancer continues to be a significant burden on healthcare systems, primarily because costs increase with disease progression. On average, the difference in cost between early-stage and late-stage is probably tenfold, between 4,000€ and 40,000€. Early detection has been demonstrated to be cost-saving to the healthcare system. It is essential to ensure the sustainability of the screening efforts that health economic data are captured systematically to evaluate the cost-savings generated by the investment. We support the goal of the European Commission to update the recommendations and we stress that 80,000 more lives could be saved per year if Member States (MS) could increase diagnosis in stage I currently at 14% to the best practice of 48%; we appreciate the Commission’s push to increase the efforts of MS on screening by agreeing to develop a new EU Cancer Screening Scheme to ensure that 90% of the target population is offered breast, cervical and colorectal cancer screening by 2025. We urge the European Commission to encourage Member States to invest in the best technology to ensure high participation rates. We further encourage all national institutions to make sure that all citizens experience a minimal wait time between a positive test and high-quality colonoscopy. Member States should invest in sufficient capacity to manage colonoscopies and colorectal cancer surgeries. Integrated databases will allow for timely invitations and follow-up. These targets require a continuous commitment to invest in infrastructure, systems design, and human resources. We further encourage the European Institutions to: • Monitor and follow up EU Member States Colorectal Cancer Screening results It is vital for the European Institutions to keep monitoring and offering guidance to Member States. In the future, we ask the Institutions to incorporate a section on designing resilient screening programs equipped to maintain service provision during pandemics or similar disruptive events, within their guidance. • Ensure that all EU Colorectal Cancer Screening Agencies take an active role in a common platform to exchange best practices through the development of working groups and exchange activities The Beating Cancer Plan has launched several initiatives to bring stakeholders together. With the aim of sharing best practices consistently throughout the next years. We ask the European Commission to strongly and closely involve Colorectal Cancer Screening programme leaders and to facilitate the exchange of best practices through the use of a common platform. Finally, we urge the European Commission to involve all stakeholders and encourage participation by providing support, insights and expertise based on each stakeholder’s unique competencies and capabilities. Patient-focused groups and organisations can contribute in designing and developing screening programs to ensure high uptake, with services that can be maintained during challenging times (such as pandemics). We ask the EC to encourage the use of a multidisciplinary approach, critical to run a successful screening programme, including patient’s perspective, psycho-social aspects, information systems, good monitoring and feedback.
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Response to Evaluation and revision of the general pharmaceutical legislation

27 Apr 2021

Digestive Cancers Europe (DiCE), the European umbrella organisation representing patients with digestive cancer, welcomes the opportunity to provide feedback to the evaluation roadmap to the EU general pharmaceuticals legislation. We welcome the EC’s intentions to improve access to affordable medicines and enhance the existing provisions on access to biosimilar medicines. Biosimilars are biological medicines that have essentially the same active substance and indication as the originator biologic (reference product). Biosimilars match their originators in terms of quality, safety and efficacy. Alongside tackling biosimilar competition and their market entry, we believe it is crucial to underline the benefits stemming from the use of biosimilars: delivery of cost savings at equal quality of care and a possible increase in patient access to previously expensive biological medicines. Given the advantages biosimilars offer to patients and society, patient organisations play an important role in reenforcing a positive message on their use. Biosimilars contribute to the sustainability of healthcare systems by generating cost savings that can be further reinvested in healthcare. To maximise the potential of biosimilars, transparency practices must be promoted regarding the savings from biosimilar use and savings allocation. Savings arising from the use of biosimilars often depend on procurement mechanisms, at several levels in healthcare systems (national, regional, hospital). In this regard, the recent initiatives of the EC expert group (i.e. draft opinion and hearing on ‘Public procurement in healthcare systems’) are welcomed, but specific and tailored attention is required to guide procurement practices for off-patent biologicals and biosimilars. Savings can be invested in many ways to improve the hospital services and patient care. Via gainsharing programs, savings derived from biosimilar introduction and use should (in part) stream back to hospitals; these savings can be used to improve patient care in a given healthcare setting. The adoption of biosimilars into clinical practice largely depends on biosimilar acceptance by HCPs. It is crucial that HCPs gain trust in prescribing biosimilars; HCPs need to understand the concept of biosimilarity and the benefits biosimilars bring to healthcare systems. For this, HCPs should be offered Europe-wide support to learn about biosimilar benefits and about effective communication strategies when explaining biosimilars to patients. Although EMA is offering information for HCPs and patients on biosimilars, more organised educational activities and materials should become available at a MS level such as a dedicated, easily accessible European information and education platform on biosimilars. We urge the EC to: • work with all relevant stakeholders, including patient organisations, to unlock the full potential of biosimilars, through guiding MS on how to use non-legislative measures to improve access to biological treatments • develop guidance to support procurement practices for off-patent biologicals and biosimilars • support the tangible and transparent reinvestment of biosimilar-related savings • facilitate arrangements such as gainsharing programs that allow savings from biosimilar competition to stream back to hospitals and be used to improve patient care in a given healthcare setting • identify countries and hospitals where biosimilar savings are best allocated to address patients’ needs and build a ‘best practice network’ across Europe for others to learn from • support and promote relevant educational and communication activities amongst HCPs by setting up a dedicated Europe-wide online resource centre We continuously support the uptake and knowledge enhancement about biosimilars: we have organised several initiatives on the use of biosimilars, including the creation of the Position Paper on the Use of Biosimilars in Colorectal Cancer.
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Meeting with Margaritis Schinas (Vice-President) and

8 Apr 2021 · Health Union

Meeting with Stella Kyriakides (Commissioner)

18 Sept 2020 · Virtual meeting about Europe’s Beating Cancer Plan and digestive cancers

Response to Europe’s Beating Cancer Plan

2 Mar 2020

CHANGING THE CONTEXT FOR DIGESTIVE CANCER PATIENTS IN EUROPE Context In Europe, more than 800,000 citizens are diagnosed with digestive cancers every year (oesophagus, stomach, colon, rectum, pancreas and rare digestive cancers), and around 500,000 of them die, despite the fact that many of these deaths are avoidable: preventable and amenable. Prevention Even if lifestyle aspects are a major risk factor in several digestive cancers (alcohol consumption, smoking, unbalanced nutrition, lack of physical activity, obesity), secondary prevention such as population-based colorectal cancer screening proves to be much more effective and efficient. Some countries such as the Netherlands and Slovenia have managed to reduce the incidence of colorectal cancer because of well organised screening programmes. In the Netherlands, they moved early detection in Stage I from 15% to 48% of the patient population. At this stage, patients have a 90% chance of survival compared to only 10% in Stage IV. If every country in Europe achieved the same results, 130,000 patients would not die every year. Furthermore, good screening programmes have demonstrated to save money in the healthcare system. Early treatment is ten times less expensive than late treatment. Treatment and Access to Treatment Cancer treatment should be organised in Comprehensive Cancer Care Networks (CCCNs). Statistics are clear that mortality one month after surgery in non-specialised centres is ten to twenty times higher than in specialised centres, even within the wealthiest countries. Quality of Life is equally better after treatment in specialised centres. We welcome the decision by the Belgian government to limit oesophageal and pancreatic cancer treatment to selected and accredited hospitals. We welcome the approach of the European Commission’s Innovative Partnership for Action Against Cancer (iPAAC) to set standards for the accreditation of Comprehensive Cancer Care Networks, as iPAAC is currently preparing to set up pilots in colorectal cancer and pancreatic cancer. If all colorectal cancer patients were treated in hospitals were the current best practices are applied, 120,000 patients would not die every year. We furthermore urge industry and governments to have faster decision-making on the availabiltiy of necessary pharmaceutical treatment, both for originators and biosimilars. Effectiveness and systems efficiencies Patient organisations offer the collective intelligence of all patients who have been treated along the patient journey. No other stakeholder has the same experience or perspective on where healthcare can become more effective and efficient. Today, many patients have suboptimal treatment and a lot of money is being wasted because of suboptimal patient pathways. Patient organisations should be involved – and not only consulted - in every decision that affects the entire patient population. Patient organisations should be funded with public money to be able provide the necessary expert opinion to the healthcare system at European, national and regional level. Their role should be recognised and enhanced. Healthcare systems are inefficient today. There is no clear link between investments (inputs) and results (outcomes). Despite all the work of the cancer registries, not one single EU Member State has data that allow for a clear identification of which investments lead to what outcomes. More – and real-time - data on outcomes are needed.
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