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European Cancer Patient Coalition

ECPC

Anticipating and participating in the legislative and policy changes taking place at EU level (EU Parliament and European Commission); Raising awareness about initiatives affecting cancer patients; Providing decision makers with a first-hand patient experience.

Lobbying Activity

Response to Cancer Screening Recommendation

22 Feb 2022

• European Cancer Coalition (ECPC) is the largest European cancer patient association representing more than 450 cancer patient organisations in Europe and beyond. • ECPC welcomes the European Commission’s ambition to achieve 90% coverage on cancer screening and early detection and the opportunity to respond to the review of the Cancer Screening Recommendation. • Timely screening means detecting cancer as early as possible so patients have the best chance for a successful recovery. • The implementation of screening programmes is rather uneven and low across Europe, so measures to ensure better clinical prognosis, lower mortality rates and reduce the costs of treatment are key in the long term. • To improve screening programmes at national level, investments in staff, technologies and diagnostic capacities, including relevant primary care services, mobile units, tests, imaging, laboratories should be as well prioritised. • To ensure that the proposed target will be attained, the European Commission is best positioned to take the lead and coordinate the efforts of the Member States and all relevant stakeholders. In this sense, European Commission should establish a multifunctional EU platform that lists both the guidelines of standards according to which screening programmes are audited and the audited screening programmes, and where Member States and stakeholders can share knowledge and good practice and can report on their progress. • There is a need for coordinated action across Member States to prioritise access and allocate adequate funds to cancer screening in their national cancer plans. • At the same time, Commission must work closely with Member States, regional health authorities and communities and patient organisations to overcome the barriers and inequalities to access screening and treatment especially in areas where screening rates are low; there is also a need to ensure synergy among all European initiatives addressing inequalities. • Such collaboration will empower more diagnostic investigation at the primary healthcare and more investment in implementing specific tools to improve early diagnosis. • Considering the high impact of late diagnosis and misdiagnosis on lung cancer patients, ECPC suggests that the EU Cancer Screening Recommendation should be extended to lung cancer. • Improving health literacy among the EU citizens is an important pillar in achieving the goal of the Recommendation. Member States need to invest in national campaigns that involve both patient organisations and healthcare professionals to better communicate the benefits of screening to patients. • Investments in other promising innovative approaches, such as artificial intelligence and machine learning, should also be considered to improve early detection of cancers.
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Meeting with Margaritis Schinas (Vice-President) and

8 Apr 2021 · Health Union

Response to Evaluation of patient rights in cross-border healthcare

11 Feb 2021

ECPC welcomes the evaluation roadmap for the Cross-Border Healthcare Directive and takes this opportunity to raise some important points that need in-depth consideration: - The current Directive does not include the specificities of rare cancers and, as a consequence, cancer patients face many challenges in terms of access to specialised treatment centres. European Reference Networks (ERNs) play an important role for these patients, but there is a clear need to strengthen and further exploit their potential in the interest of European patients. The European Commission should support Member States (MS) to implement the EU Joint Action on Rare Cancers (JARC) recommendations for the Rare Cancer Agenda 2030 at national level. - Currently, the large potential of this Directive to improve and facilitate patients’ access to cross-border healthcare and notably to ensure the best quality of care for all patients is not fully exploited. Yet, for this Directive to be properly implemented, it is crucial that patients, health care professionals and other stakeholders are well informed about the Directive in all its aspects. - In a considerable number of MS, patients are still facing numerous obstacles when dealing with their national health systems. Moreover, administrative burdens are a source of delay to reimbursement which widens the fragmentation of access to treatment. Consequently, coordination among MS is essential. At the same time, patients should be reimbursed for the anticipated costs when receiving healthcare in another MS. Ideally cancer patients should not need to anticipate their costs. Only doing so, inequalities will be reduced in Europe. - Patients still encounter practical and legal difficulties when using medical prescriptions across MS. Therefore, the European Commission should support MS and their respective health authorities to address the legal and practical issues that are hindering the mutual recognition of medical prescriptions across the EU. At the same time, the Commission should take measures to ensure that prescriptions issued by ERN-linked centres of expertise are accepted for reimbursement in all MS. - Patients are not adequately informed of their cross-border healthcare rights (less than 20 % of citizens feel well informed). To ensure the efficiency of cross-border healthcare, patients, caregivers, healthcare professionals and other relevant stakeholders should be well informed about their rights and the rules governing the access to cross-border healthcare. - The reimbursement procedures in many MS are complex, particularly with regard to prescriptions, orphan drugs, pharmaceutically compounded medicinal products and follow-up therapy and procedures. Such procedures need improving and simplifying. - MS need further support to transpose the directive correctly in order to ensure high-quality and accessible cross-border healthcare for patients, in full compliance with the implementation deadlines laid down in the legislation. There is room for improvement with regard to ensuring access to prescribed medicines and continuity of treatment for patients. At the same time, the scope of the directive could be expanded to include vaccination programmes. - Guidelines should be developed to enable the comparison between the treatment a patient can receive abroad with that available in their own country. - Funding allocated to ERNs is exceedingly limited. Especially at a time of a pandemic, when cancer patients may suffer from difficulties to access normal health services, networking is vital. Networking always requires additional resources. The EU and the MS should allocate ERNs with proper regular funding. - The great disparities between MS regarding high medicine prices need to be addressed.
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Response to A European Health Data Space

2 Feb 2021

The European Cancer Patient Coalition (ECPC) welcomes the initiative of the European Commission of setting up the European Health Data Space (EHDS) as a tool to strengthen cooperation, improve cancer research and ensure more equality for patients. Seeing the impact that the COVID-19 pandemic has had on the screening, diagnosis, treatment, and follow-up of cancer patients, ECPC would like to stress the importance of putting cancer patients and survivors at the core of the digital momentum. Cancer care would benefit from the enabling of the cross-border sharing of real-world health data. To enhance the positive impact that the EHDS could have on patients and cancer care, we would like to highlight the following aspects: • The protection of patients’ data is key. Therefore, there is a need to adapt the General Data Protection Regulation (GDPR) when this applies to patients’ involvement in research studies, particularly in concern to long term research. All health-related data collected in the European Health Data Space should be limited to research purposes and must not be used by third parties to negatively impact an individual patient personal and professional life (i.e., rehabilitation at work or denial to get access to financial instruments). • The need for consistent data to improve long-term policies and access to rehabilitation treatments for cancer survivors is highly important. In this regards, the EHDS could serve as a valuable resource for research and coordination among all EU Member States. EHDS should have the role to coordinate and harmonise the various clinical databases with the existent National Cancer Registries. It should, as well, become a relevant tool in providing a long term follow up of research outcomes, on an annual basis, something that is currently almost non-existent. • The establishment of the EHDS should be oriented to developing appropriate infrastructure and databases to promote multidisciplinary research programs that define the challenging societal stigmas associated with cancer. At the same time, the EHDS infrastructure should enable the amalgamation of complex data sets in a structured manner based on research methodology. • The EHDS should offer a framework that is patient-centred and oriented towards multidisciplinary survivorship research, allowing the assessment of the wellbeing and quality of life of cancer patients and survivors and providing up to date information on their current needs. • We support the proposal to build accountability in the system and create a legal and governance framework to ensure that health information is shared in full compliance with the EU data protection rules and that the use of AI and machine learning are regulated. Making proper use of such technologies will empower cancer patients and cancer survivors during their journey.
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Response to Consumer Credit Agreement – review of EU rules

1 Sept 2020

The European Cancer Patient Coalition (ECPC) represents the patients of its 450 members across 46 different countries afflicted by all types of cancer. ECPC works for a Europe where all cancer patients have access to the best health care available and the greatest conditions to improve their quality of life during and after the fight against cancer. Being diagnosed with cancer means also be prepared to face financial distress, directly or indirectly caused by the cancer disease. The financial burden might be related to the costs of treatments, the loss of income due to absence from work, and the difficulties in access to financial instruments. A specific aspect of the issue concerns cancer survivors. In 2018 more than 12 million cancer survivors have been estimated in Europe. Having a history of cancer could be a major hurdle for access to financial credit services. This condition could affect the economic capacities of cancer survivors and their psychological wellbeing, posing a social stigma, and feeling of subsequent condemnation after beating cancer. It is necessary to adapt the legislation ensuring cancer survivors can be back to a productive life, particularly, children and young adults. At present, France, Belgium, and Luxembourg adopted legal measures in this field. The three initiatives ensure the same ‘Right to be forgotten” for cancer survivors, with some national specifications. Recently, the Netherlands announced an ongoing regulation process on 'clean slate policy', including the right to be forgotten. The provisions implemented by France, Belgium, and Luxembourg state that in the context of insurance or loans, the period beyond which no medical information relating to cancer can be taken into account may not exceed 10 years after the end of treatment. The laws include a list of exceptions for cancers with a better prognosis having shorter delays to ensure the right to be forgotten. France and Luxembourg also provide a shorter term of 5 years for cancers occurring before the age of 18. About this, France announced that from September 1st, 2020 the provision will be extended for cancer patients until 21 years old. According to article 114 and 169 TFUE, the consumers’ protection and the promotion of their interests is an EU Priority in the internal market, considering any new development based on scientific facts. In the aim to combat social exclusion and discrimination, the review of the consumer credit agreement should support an inclusive approach to vulnerable groups of consumers, such as cancer patients and survivors. This strategy should represent an instrument to promote social justice and protection, strengthening the fundamental values of equality and solidarity among EU Citizens. The EU Beating Cancer Plan and the Interim report on the Cancer Mission recognised the importance of such a measure to counteract discrimination and ensure equality, promoting the best possible quality of life for cancer survivors. The same values reflect Art.10 TFUE, Art.2 TUE, and art. 21 CFR. The new directive should reflect those values, highlight the need for common and transparent standards of creditworthiness assessment. The standards should also ensure the highest level of protection and transparency in the treatment of sensitive data, such as health information on customers. To conclude, further recommendations should include also: - Dissemination among the EU Member States of the existing best practices implemented at national levels, in particular for vulnerable consumers such as cancer survivors (The Right to be forgotten in France, Belgium, Luxembourg, and the Netherlands). - Avoid disparities among EU national consumer policies, more specifically in the field of access to credit instruments for vulnerable consumers, such as cancer survivors. - Strengthen protection measures against unfair clauses and creditworthiness assessment practices applied to vulnerable consumers, such as cancer survivors.
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Response to A New Consumer Agenda

5 Aug 2020

The European Cancer Patient Coalition (ECPC) represents the patients of its 450 members across 46 different countries afflicted by all types of cancer. ECPC works for a Europe where all cancer patients have access to the best health care available and the greatest conditions to improve their quality of life during and after the fight against cancer. Being diagnosed with cancer means also be prepared to face financial distress, directly or indirectly caused by the cancer disease. The financial burden can be related to the costs of treatments, the loss of income due to absence from work and the difficulties in access to financial instruments. A specific aspect of the issue concerns cancer survivors. In 2018 more than 12 million cancer survivors have been estimated in Europe, about one-third of them are in the range of age to participate in socio-economic life. Having a history of cancer could be a major hurdle for access to financial credit services. This condition could affect the economic capacities of cancer survivors and their psychological wellbeing, posing a social stigma and feeling of subsequent condemnation after beating cancer. It is necessary to adapt the legislation ensuring cancer survivors can be back to a productive life, in particular, children (more than 80% of them) and young adults. As of the end of 2019, France, Belgium and Luxembourg have taken legal measures in this field. The three initiatives ensure the same ‘Right to be forgotten” for cancer survivors, with some national specifications. The provisions state that in the context of insurance or loan contracts, the period beyond which no medical information relating to cancer can be taken into account by insurance companies may not exceed 10 years after the end of treatment. France and Luxembourg also provide a shorter term of 5 years for cancers occurring before the age of 18. The laws include a list of exceptions for cancers with an excellent prognosis having shorter delays to access the Right to be forgotten. According to article 114 and 169 TFUE, the consumers’ protection and the promotion of their interests is an EU Priority in the internal market, considering any new development based on scientific facts. The new EU Consumer agenda should support an inclusive approach to vulnerable groups of consumers, such as cancer patients and cancer survivors, promoting social justice and strengthening the fundamental values of equality and solidarity among EU Citizens. An EU Action is needed, to provide a coordinated regulatory framework to strengthen EU Cooperation and support Member states in ensuring effective mechanisms to avoid discrimination in the access to financial services and combat social exclusion. The new EU Consumer policy agenda should improve effective enforcement of Consumers’ rights, ensuring transparency, access to information and remedy against discrimination for vulnerable consumers, including cancer survivors. In particular, the new EU Consumers’ strategy should promote a joint action among stakeholders to implement transparency and take into account any new development based on scientific facts in the practice of creditworthiness assessments. These measures should allow equal and inclusive access to financial instruments to all EU citizens. Further recommendations include also: - Dissemination among the EU Member States of the existing best practices implemented at national levels, in particular for vulnerable consumers such as cancer survivors (The Right to be forgotten). - Avoid disparities between EU national consumer policies, more specifically in the field of access to credit instruments for vulnerable consumers, such as cancer survivors (Revision of the Directive 2008/48/EC). - Strengthen protection measures against unfair clauses and creditworthiness assessment practices applied to vulnerable consumers, such as cancer survivors (Revision of the Directive 2008/48/EC).
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Meeting with Stella Kyriakides (Commissioner)

25 May 2020 · VC meeting: EU's Cancer Plan, funding related to cancer and the challenges cancer patients face during COVID-19

Response to Europe’s Beating Cancer Plan

28 Feb 2020

The European Cancer Patient Coalition (ECPC) represents the patients of its 450 members across 46 different countries afflicted by all types of cancer. [i,ii,iii] ECPC welcomes an approach that is inclusive of the entire cancer care pathway and recommends prioritizing the following actions in each respective domain: Primary prevention as the most cost-effective measure: - Set standards and explore incentives to achieve equal levels of vaccination coverage for HPV and hepatitis B for both genders. - Introduce more extensive legislation to counter carcinogenic exposure in the workplace, that includes non-melanoma skin cancer caused by solar UVR. [iv] Secondary prevention or early detection with its significant effect on improving outcomes: - Establish sustainability and guidelines for lung and prostate cancer screening. - Research for early detection of pancreatic cancer and neglected cancers. - Provide structural support to ensure the most effective screening rates for existing screening programmes. Equal access to innovative treatments to reduce the cancer burden: - Encourage and support the collaboration of Member States in the provision of comprehensive and multidisciplinary care by Comprehensive Cancer Care Networks (CCCNs). [v] CCCNs ensure cost-effective structuring of cancer control with interconnected cancer centres, more equitable improvements in outcomes and translational research, linking research with clinical practice. [vi,vii] - Provide seed funding from the ESF (European Social Funds) and ERDF (European Development Funds) for the establishment and operation of CCCNs in underserved and cross-border regions, both to improve health outcomes and provide a proof of concept for wider implementation. - Investigate the potential for the existing cross-border healthcare directive [viii] and related legislation [ix] to provide a legal framework for more effective rare cancer patient coverage [x] through CCCNs modelled on the (ERNs) European Reference Networks [xi], especially in cross-border and interregional care. [xii] - Provide recommendations for Member States in order to implement ERNs into national healthcare systems and ensure their long-term sustainability, based on the JARC recommendations. [xiii] - Promote the use of teleconsultation and eHealth to ensure equal rare cancer patient coverage in rural and underserved areas. - Support the approval of the HTA regulation, [xiv] in order to speed-up reimbursement decisions on innovative treatments. Survivorship, ensuring general well-being following a cancer diagnosis: - Implement the policy recommendations on survivorship care from the Joint Action on Cancer Control (CanCon). [xv] - Support equal access to quality survivorship care through the development of a new multidisciplinary integrative model that includes cancer rehabilitation (sexual, psychological, cognitive, nutritional as well as physical). [xvi] - Ensure cancer survivors and carers are able to return to work, access flexible work arrangements and enjoy the right to be forgotten, in line with the rights set forth in the European Pillar of Social Rights. - Address survivorship with multidisciplinary integrated care offered through CCCNs and the implementation of cross-sectorial alliances and multi-sector solutions. [xvii] - To reduce social disparities, promote best-practices of co-financing and highlight existing social programmes that best address the needs of cancer patients, survivors, and their carers. [xviii] - Promote research on cancer related complications and comorbidities, and commission a survey by Eurostat on Survivorship in order to better understand the follow-up needs of those affected by cancer (e.g. personalised follow-up, late effect management and tertiary prevention).
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Meeting with Stella Kyriakides (Commissioner) and

5 Feb 2020 · Discussion on Cancer and Europe's Beating Cancer Plan

Meeting with Stella Kyriakides (Commissioner) and

20 Jan 2020 · Discussion on cancer

Meeting with Vytenis Andriukaitis (Commissioner) and

15 May 2018 · HTA

Response to REACH Regulation - Annex XIV

14 Oct 2016

The European Cancer Patient Coalition (ECPC) is the largest European patients' umbrella organization in the area of cancer diseases, and is based in Brussels. ECPC was set up in 2003, and 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. ECPC is concerned about the draft regulation to add 4-(1,1,3,3-Tetramethylbutyl) phenol, ethoxylated (Triton X-100) to Annex XIV of REACH. Triton X-100 is a liquid detergent that is used when working with tissues, cells, proteins, and DNA. It has been used in cancer research laboratories for many decades. It is specified in WHO and EMA guidelines and cannot be easily substituted. If Triton X-100 were added to Annex XIV of REACH, there is a serious risk of significant disruptions to laboratory cancer research. Even if a substitute were to be found, the changes to scientific research protocols would be time-consuming and costly. There is also the risk that important scientific research might move outside the European Union in order to ensure sustainability. ECPC considers that the potential unwarranted consequences on scientific research due to Triton-X-100 restriction disproportionately outweighs the limited benefits. We urge the EU Commission to give full consideration to the potential consequence of including Triton X-100 on Annex XIV, and allow an exemption of Triton-X-100 for scientific laboratory research.
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Meeting with Vytenis Andriukaitis (Commissioner) and

2 Feb 2015 · EU ACTION ON CANCER, GUIDELINES, JOINT ACTIONS, PRICING OF CANCER DRUGS AND INEQUALITIES, CROSS -BORDER HEALTH CARE DIRECTIVE