OpenLobby.EU
Explore

Cancer Patients Europe

CPE

Cancer Patients Europe is a patient-led organization representing cancer survivors and patients.

Lobbying Activity

Cancer Patients Europe seeks dedicated health funding in EU budget

12 Nov 2025
Topic — The consultation addresses the EU's post-2027 long-term budget focusing on competitiveness funding.
Message — The organization calls for a dedicated health budget to prevent medical priorities from being overshadowed. They urge the EU to maintain predictable funding for the Beating Cancer Plan. They also request support for civil society and European Reference Networks for rare diseases.123
Why — Securing dedicated funds would guarantee long-term investment and stability for patient-centred initiatives.45
Impact — Patients and civil society lose influence and representation if health funding is de-prioritized.67
Read full response

Cancer Patients Europe Urges EU to Address Health-Driven Poverty

24 Oct 2025
Topic — The consultation seeks views on the proposed EU Anti-Poverty Strategy and its goals.
Message — CPE calls for health to be a core pillar of the strategy. They want income protections for patients and guaranteed access to credit.12
Why — These measures would prevent the financial descent often caused by serious illness.34
Impact — Financial institutions and insurers lose the ability to use patient health data.5
Read full response

Cancer Patients Europe urges faster approvals for life-saving devices

6 Oct 2025
Topic — A review of EU regulations governing medical devices and in vitro diagnostics.
Message — The group calls for cutting administrative red tape and duplicative steps to speed up device approvals. They also demand that patient organizations be formally included in regulatory governance and shortage planning.12
Why — Patients would secure more reliable access to essential cancer treatments and diagnostic tools across Europe.3
Read full response

Cancer Patients Europe urges heart health plan follow cancer blueprint

15 Sept 2025
Topic — The European Commission is seeking feedback on a comprehensive plan for cardiovascular health.
Message — CPE stresses that the new plan must not compromise Europe’s Beating Cancer Plan. They recommend using the cancer strategy as a blueprint for cardiovascular prevention and care. The plan should adopt an integrated approach addressing shared risks like tobacco and alcohol.123
Why — This safeguards the continued political commitment and resources for cancer patient care.4
Impact — Tobacco and alcohol producers face stricter regulations and ambitious new consumption targets.5
Read full response

Cancer Patients Europe urges EU to restore health NGO funding

4 Sept 2025
Topic — A consultation on a framework to strengthen engagement and support for civil society.
Message — The group urges the Commission to restore operating grants to ensure financial stability for health organizations. They argue the strategy must include predictable funding because active participation in policy is not cost-neutral.12
Why — Reliable funding would protect their independence and long-term capacity to influence health policy.3
Impact — Patients lose their voice in shaping regulations that directly affect their healthcare outcomes.4
Read full response

Meeting with Dirk Van Den Steen (Acting Head of Unit Health and Food Safety)

29 Jul 2025 · Exchange about possible collaboration around the health aspects of the Semester Process, especially on cancer; expected discussion on the proposed Multiannual Financial Framework

Response to Critical Medicines Act

4 Jul 2025

Cancer Patients Europe (CPE) welcomes the European Commissions proposal for a Critical Medicines Act (CMA) as a vital step toward preventing medicine shortages, especially for patients facing life-threatening conditions such as cancer. A resilient medicine supply chain must be anchored in public health priorities. The CMA presents a critical opportunity to advance equity, solidarity, and universal access to essential medicines across all EU Member States, beyond only industrial or economic competitiveness considerations. Public health impact must be the primary criterion for strategic designation, and economic potential must never outweigh patient needs. This Regulation should go beyond managing supply disruptions and ensure continuity, quality, safety, and accessibility to medicines, regardless of geography or socioeconomic status. Public Health-Centered Approach: Equity and Access The CMA must address persistent regional disparities in access to critical medicines, particularly for rare and complex cancers. It must deliver on the principle that "where you live should not determine if you live" by ensuring timely, safe, and continuous access for people living with cancer, rare diseases, and other vulnerable populations. Affordability, transparency, and quality must be ensured throughout the supply chain. Additionally, public procurement mechanisms must not reinforce inequalities across Europe by favouring larger or wealthier Member States. Patient Involvement Patients and patient organisations must be recognised as essential stakeholders in the CMAs implementation and governance structures. As stated in Art. 4 of the European Commissions proposal, supply security is a strategic Union objective that must place patients at its centre. We call for meaningful and systematic patient inclusion in setting prioritisation and resilience indicators (Art. 19 and 21), shaping procurement strategies (Art. 21, 22 and 23), and developing vulnerability assessment criteria. Patient experience should inform Strategic Project planning and evaluation. Patient expertise must also guide the review of the Union List of Critical Medicines and vulnerability assessments. This inclusive approach ensures procurement strategies are not only technically sound, but socially and ethically grounded. Supply Chain Resilience and Solidarity To build resilient health systems across Europe, the CMA must avoid nationalistic stockpiling and reinforce EU-level coordination with solidarity-based rules. We support the development of a European list of Critical Vulnerable Medicines as recommended by the Critical Medicines Alliance. Contingency stock strategies must be transparent, proportionate, and reflect real patient needs. Cross-border cooperation and shared EU-level stockpiles should be promoted during crises and disruptions. Strengthening resilience must not come at the expense of quality, environmental protection, or equitable access to medicines. Conclusion The CMA is a historic opportunity to address longstanding inequalities in Europes medicine supply. CPE urges the European Commission to ensure the Act delivers on the principles of equitable access to medicines and enhanced solidarity in the delivery of healthcare. These priorities are essential to protecting patients lives and dignity. As stated throughout this response, Where you live should not determine if you live. This must not remain a sloganit must become law in action.
Read full response

Response to Health technology assessment - Joint clinical assessments of medical devices and in vitro diagnostic medical devices

23 Jun 2025

Cancer Patients Europe (https://cancerpatientseurope.org/) welcomes the draft Implementing Regulation establishing procedural rules for Joint Clinical Assessments (JCAs) of medical devices under Regulation 2021/2282. As a patient-led organisation representing the voice of people affected by cancer across Europe, we believe that JCAs must not only assess technologies efficiently, but also ensure that patients are meaningfully, systematically, and transparently involved at all stages of the process. We are concerned by the overall lack of clarity regarding how patient input will be used and reflected throughout the JCA procedure. The Implementing Act remains vague on when and how patients will contribute to defining the scope, reviewing evidence, or shaping conclusions. Without transparent mechanisms to integrate patient input, participation risks becoming tokenistic. Article 12, for example, should clarify how patient perspectives inform scoping decisionsnot just allow for them to be heard. We strongly recommend the inclusion of Plain Language Summaries (PLS) at the outset of every JCA. These summaries are essential to help patients understand the device being assessed and to contribute meaningfullywithout needing specialist knowledge in health technology assessment or clinical evidence. They should be clear, timely, and accessible in all EU languages. We also call for improvements to the process of identifying appropriate patient contributors. Article 8 outlines the selection of individual experts, including patients. Those asked to identify patients, especially patient organisations in the HTA Stakeholder Network, must have access to critical information, such as the medical condition, therapeutic area, and type of device under assessment (Art. 8(1)(ac)). Without this, identifying the right patient voice is impossible. Moreover, patient organisations should not be optional contributors. Article 10 currently states that they may be consulted. This must be changed to shall. Patient organisations must be involved at every appropriate step, not only when and if convenient. Their contribution should be embedded structurally and systematically in the JCA process, not left to discretion. This includes participation in defining the scope and reviewing draft reports, ensuring that the broader patient perspective is reflected beyond the views of individual patients. The timeline for identifying and preparing patient contributors must also be extended. The current procedures risk excluding patients who require more time to understand the process or who come from underrepresented groups. Inclusive patient engagement takes time and planningand the procedure should reflect that. We also urge that transparent feedback mechanisms be established. When patients are selected (or not), and when input is used (or not), those involved must receive clear explanations. This is key to maintaining trust and motivation. Cancer Patients Europe stands ready to support the implementation of a truly patient-centred JCA process, one that reflects real-world needs, experiences, and priorities of patients across the EU.
Read full response

Cancer Patients Europe urges patient-centered focus for Biotech Act

11 Jun 2025
Topic — The Biotech Act aims to streamline the transition of biotechnology to the EU market.
Message — The organization demands that the Act focuses on patient needs and underserved communities. They advocate for equitable access to innovations and affordable cost structures across all regions. Furthermore, patient groups should be formal partners in policy governance and early-stage research.123
Why — This would ensure cancer patients receive more affordable, targeted, and effective treatments.4
Impact — Commercial developers may face pressure from requirements for measurable public returns on investment.5
Read full response

Cancer Patients Europe demands central role in medicine supply law

26 Feb 2025
Topic — The EU is proposing a Critical Medicines Act to address pharmaceutical supply chain vulnerabilities.
Message — CPE calls for patient organisations to be meaningfully involved in policy design and implementation. They also advocate for public manufacturing and repurposing off-patent drugs to resolve shortages.12
Why — Patients would secure more reliable access to life-saving treatments regardless of their location.3
Impact — Private drug suppliers may face competition from new public and not-for-profit manufacturing initiatives.45
Read full response

Meeting with Vytenis Povilas Andriukaitis (Member of the European Parliament) and Specialised Nutrition Europe

6 Feb 2025 · EU Health Policy

Meeting with Vytenis Povilas Andriukaitis (Member of the European Parliament)

30 Jan 2025 · EU Policy

Meeting with Vytenis Povilas Andriukaitis (Member of the European Parliament) and Bioenergy Europe

29 Jan 2025 · Exchange of views

Meeting with Nicolás González Casares (Member of the European Parliament)

5 Dec 2024 · Health

Response to Health technology assessment – Joint scientific consultations on medical devices and in vitro diagnostic medical devic

26 Nov 2024

Cancer Patients Europe (https://cancerpatientseurope.org/) welcomes the fifth Implementing Act (IA) relating to Joint Scientific Consultations (JSC) medical devices & in vitro diagnostic medical devices pursuant to Regulation 2021/2282 as it clarifies the who, how and when relevant stakeholders, including patients and patient organisations, shall be involved in JSC. Key concerns remain however about the limited involvement of patient organisations, late-stage patient participation, and insufficient mechanisms to ensure their input is meaningfully integrated. Greater efforts are needed to involve patients early, support their participation in JSC trough dedicated resources and ensure their contributions impact decision-making. We welcome the lists outlined in Art. 6 regarding the sources for identifying patient experts to take part in JSC. However, we recommend that all expert sources be considered from the outset, as the sequential approach introduced in Art. 6 (2, 3) could introduce delays and hinder patient access to innovative medical devices. To streamline this process, we suggest merging subsections 2 and 3 of Art. 6 into a single, comprehensive subsection that provides a complete list of sources for identifying patient experts. Moreover, while such lists offer a broad selection of potential expert sources, they may overlook patients with lower health literacy or from underprivileged backgrounds, as they assume familiarity with European or national processes. An open call for volunteers, organised by patient organisations with support from the HTA Coordination Group, could help broaden patient involvement. Additionally, while we appreciate the inclusion of patient organisations in JSC under Art. 12 (1), we note that their involvement is only optional, and that individual patients remain the primary voice in the process. We firmly believe that patient input in JSC should not rely solely on the opinion of individual patient experts, as it cannot fully represent the broader patient community. To ensure a more representative perspective, we recommend amending Art. 12 to align with Art. 6, thereby reinforcing the role of patient organisations in the JSC. Patient organisations should systematically be involved in JSC as they can express collectively information about the side effects or benefits of a specific medical device and in vitro diagnostic medical device and are a better suited to provide expertise across multiple Member States as outlined in Art. 6 (5). Their involvement is crucial especially where effective patient participation is not always possible such as for paediatric patients, the elderly, rare diseases or in cases of language barriers. Patient involvement in JSC is planned during the meeting with the Health Technology Developer (HTD) as outlined in Art. 13. However, this excludes engagement at earlier stages, such as the development of the briefing package (Art. 8) or identification key issues (Art. 10), where patient input could be most valuable. Additionally, while Art. 11 outlines the provision of the briefing package, it lacks details on how patients will be supported throughout their involvement. For patient input to be meaningful, they require timely, clear, and accessible information about the technology under assessment. The IA should include a Summary of Information for Patients (SIP) of the technology, providing essential details to support contributions from patient experts and organisations as part of the briefing package in Art.11. Furthermore, we recommend adding a subsection to Art. 6 that outlines a comprehensive induction for patients selected to participate in JSC, along with ongoing support from dedicated staff. Finally, following their participation in a JSC, patients should be provided clear, concise and understandable feedback on how their input has been used and what could be done in future stages of their involvement to ensure continuous improvement in the assessment process.
Read full response

Meeting with Elena Nevado Del Campo (Member of the European Parliament)

20 Nov 2024 · CPE Priorities

Meeting with Marta Temido (Member of the European Parliament)

20 Nov 2024 · health policy

Meeting with Vytenis Povilas Andriukaitis (Member of the European Parliament) and AstraZeneca PLC and

20 Nov 2024 · EU health policy

Meeting with Vlad Vasile-Voiculescu (Member of the European Parliament)

18 Nov 2024 · Introductory Meeting

Response to Health technology assessment – Joint scientific consultations on medicinal products for human use

29 Oct 2024

Cancer Patients Europe (https://cancerpatientseurope.org/) welcomes the fourth Implementing Act (IA) relating to Joint Scientific Consultations (JSC) on medicines and pursuant to Regulation 2021/2282 as it clarifies the who, how and when relevant stakeholders, including patients and patient organisations, shall be involved in JSC. Key concerns remain however about the limited involvement of patient organisations, late-stage patient participation, and insufficient mechanisms to ensure their input is meaningfully integrated. Greater efforts are needed to involve patients early and ensure their contributions impact decision-making. We welcome the IA's emphasis on collaborating with the European Medicines Agency (EMA) to avoid duplication of efforts. By facilitating parallel consultations, the regulation helps align regulatory and clinical assessments, which is critical for minimizing delays in bringing innovative therapies to patients. While maintaining the distinct roles and scopes of regulatory and HTA processes, synergies between the two should be leveraged to prevent any unnecessary delays in patient access. We also welcome the list outlined in Art. 5 (2) regarding the sources for identifying patient experts to take part in JSC. However, while this list offers a broad selection of potential expert sources, it may overlook patients with lower health literacy or from underprivileged backgrounds, as it assumes their familiarity with European or national processes. An open call for volunteers, organised by patient organisations with support from the HTA Coordination Group, could help broaden patient involvement and ensure the most appropriate input in JSC. While we appreciate the inclusion of patient organisations in JSC under Art. 11 (1), we note that their involvement is only optional, and that individual patients remain the primary voice in the process. We firmly believe that patient input in JSC should not rely solely on the opinion of individual patient experts, as it cannot fully represent the broader patient community. To ensure a more representative perspective, we recommend amending Art. 11 to align with Art. 5, thereby reinforcing the role of patient organisations in the JSC. Patient organisations should systematically be involved in JSC as they can express collectively information about the side effects or benefits of a specific medicinal product and are better suited to provide expertise across multiple Member States as outlined in Art. 5 (5). Their involvement is crucial especially where effective patient participation is not always possible such as for paediatric patients, the elderly, rare diseases or in cases of language barriers. Patient involvement in JSC is planned during the meeting with the Health Technology Developer (HTD) as outlined in Art. 12. However, this excludes earlier stages, such as the development of the briefing package (Art. 7) or identification key issues (Art. 9), where patient input could be most valuable. Additionally, while Art. 10 outlines the provision of the briefing package, it lacks details on how patients will be supported throughout their involvement. For patient input to be meaningful, they require timely, clear, and accessible information about the technology under assessment. The draft regulation should include a plain language summary (SIP) of the technology, providing essential details to support contributions from patient experts and organisations. This summary should be part of the briefing package outlined in Art. 10. Patient organisations should also be invited to participate in the meeting with the HTD as specified in Art. 12 (1), to ensure a more collective and representative voice. Finally, following their participation in a JSC, patients should be provided clear, concise and understandable feedback on how their input has been used and what could be done in future stages of their involvement to ensure continuous improvement in the assessment process.
Read full response

Meeting with Andrea Wechsler (Member of the European Parliament)

15 Oct 2024 · EU Environmental Policy

Meeting with Nikos Papandreou (Member of the European Parliament)

1 Oct 2024 · Cancer Patients Europe activities information meeting

Meeting with Matjaž Nemec (Member of the European Parliament)

1 Oct 2024 · Priorities for the new Parliamentary term

Meeting with Miriam Lexmann (Member of the European Parliament)

23 Jul 2024 · Support to the interest group on cancer

Response to Health technology assessment – Cooperation with the European Medicines Agency

22 Jul 2024

Cancer Patients Europe, CPE (www.cancerpatientseurope.org) welcomes the third Implementing Act (IA) relating to the cooperation by exchange of information with the European Medicines Agency (EMA) and pursuant to Regulation (EU) 2021/2282 as it clarifies the rules for cooperation with the EMA such as the identification of experts, including patients, to be involved in HTA. However, additional clarifications are necessary to ensure the sustainable engagement of patients in HTA. Art. 5 (1) of the draft IA stipulates that On request and where that information is available, the European Medicines Agency shall provide the HTA secretariat with information on potentially suitable individual experts for its consideration to be proposed to the relevant subgroup as a patient, clinical expert or other relevant expert in a joint clinical assessment or joint scientific consultation. While we support the recognition of the EMAs capacity to identify experts to participate in HTA, clarifications are necessary to understand how such recommendations will be considered by the HTA Secretariat and subgroups. Moreover, we call for the addition of patient organisations and carers to the list of experts to be recommended by the EMA as they represent the collective voice of patients and play an essential role where effective patient participation is not always possible. The limitation to individual experts in the draft IA is missing out on the opportunity to foster dialogue among the patient community. The avoidance of duplication is a key element within the EU HTA Regulation (EU HTA-R). E.g., article 31 of the EU-HTA-R on Evaluation and Reporting suggests non-duplication of the request of information, data, analyses and other evidence . in terms of reducing the administrative burden.. We are concerned that as it stands, this IA will lead to the duplication of efforts between EMA and the HTA Secretariat which would lead to delays and limitations in access to potential life-changing medicines for patients. The EMA has established procedures for the identification of experts to provide expertise in its activities. We suggest that the HTA secretariat should use and adapt such procedures to identify relevant experts and, specifically, patient experts for joint clinical assessments and joint scientific consultations. Moreover, we believe that the draft IA should reflect the envisioned alignment with the EMA in article 31 of the EU-HTA-R on the non-duplication of the request of information with regards to the Declaration of Interest (DOI) employed in the respective legal frameworks. While this alignment was not addressed in the IA on Managing Conflict of Interest, we propose that as part of the exchange of information covered in Art. 5, DOI statements provided by patients to the EMA should be accepted within the EU-HTA framework whether the specific patient has no new activities to declare. Finally, it is critical that patient information is guarded carefully, and is only shared if necessary and with the prior written consent of the patient. We call for appropriate procedures to safeguard the confidentiality of patient information shared within the EMA, the HTA Secretariat and the Member State Coordination group on HTA and its subgroups.
Read full response

Response to Health technology assessment – Procedural rules for the assessment and management of conflicts of interest in joint wo

22 Jun 2024

Cancer Patients Europe (CPE) welcomes the second Implementing Act relating to the procedural rules for assessing and managing Conflict of Interest (CoI) and pursuant to Regulation (EU) 2021/2282 as it clarifies the conditions for the participation of stakeholders, including patients, in the HTA process. However, while these rules should provide clarity on the conditions to participate in HTA, their application would prevent appropriate patient participation. While we recognize the mandate that the HTA-R gives to the Commission to define what constitutes a CoI, we are concerned by the narrow definition that has been adopted as reflected by the very strict list of exclusions and limitations listed in ANNEX II. This would exclude the most relevant patient voices from the HTA, leaving patients with little to no knowledge regarding the treatment being assessed in the HTA, or even jeopardizing patient participation. We believe that the derogation 3 in Art.7 providing the possibility to involve stakeholders with a CoI in the joint work is not the solution to ensure expert involvement in HTA. If an expert has a CoI, then they should not be able to participate in the HTA process. A broader definition of the CoI would make this derogation vane. Derogation 3 in Art.7 is in direct contradiction with the objectives of transparency, legitimacy and fairness set out in the HTA-R. The definition of CoI should be sufficiently broad to include experts on the subject even in the case of past exposure to the product or the HTD as this would allow for informed opinions. The limitations listed in ANNEX II on private funding would represent a deterrent to patient involvement in the HTA. Many patients and patient organisations depend on private funding to conduct their activities. Instead of directly excluding such experts from the HTA process, an approach based on transparency should be adopted which could introduce the concepts of direct and indirect interest. Direct interest such as for example employment with the HTD or funding dependency (more than 50% of total funds) from that specific HTD would lead to CoI. On the other hand, indirect interests e.g. funding for disease awareness activities should be declared as such without leading to CoI. An approach to CoI based on a balance between transparency and expertise should be taken limiting competing interests to the extent that they do not hinder patient involvement in HTA. We consider the EMA process to be a comprehensive and transparent one, which we would like to see form the basis of the CoI process for the HTA-R, avoiding duplication of efforts. Art. 3 of the Draft IA stipulates that experts are to be selected for their expertise in the therapeutic area concerned and act in an individual capacity. While we support this principle of full transparency, it is a major omission that input from patient groups is neither foreseen nor covered within the CoI framework as they represent the collective voice of patients. The participation of patient organisations in HTA is crucial, especially where effective patient participation is not always possible such as for pediatric patients, elderly populations, rare diseases and people with disabilities; or in cases of language barriers. Moreover, the limitation of the CoI framework in the draft IA to individual experts is missing out on the opportunity to foster dialogue among the patient community. The transparency required stating all potential CoI as described in ANNEX I, could represent a deterrent to patient participation in HTA. We believe that including patient organisations functioning under transparent rules in HTA would encourage patient participation compared to individual patients for whom the absence of CoI would be more difficult to demonstrate. We suggest adding an article within the Daft IA encouraging patient group input and providing details on how to approach CoI with such organisational input.
Read full response

Meeting with Tilly Metz (Member of the European Parliament)

10 Apr 2024 · Cancer policy

Meeting with Stella Kyriakides (Commissioner) and

9 Apr 2024 · Europe’s Beating Cancer Plan; quality of life

Cancer Patients Europe seeks mandatory roles for patient groups

2 Apr 2024
Topic — Implementing rules for joint clinical assessments of medicinal products at EU level.
Message — CPE urges the Commission to mandate consultation with patient organizations. They request plain language summaries to clarify technical medical information.12
Why — Stronger representation ensures patient experiences directly impact the assessment of new treatments.3
Impact — Health technology developers face increased administrative burdens to provide non-technical assessment summaries.4
Read full response

Meeting with Cristian-Silviu Buşoi (Member of the European Parliament)

14 Feb 2024 · speaker at conference `the Cancer Momentum- Fighting inequalities in Europe¨

Meeting with Cristian-Silviu Buşoi (Member of the European Parliament) and Digestive Cancers 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?’