Cancer Patient organisation involvement in cancer policy and EU cancer Plan priorities - PowerPoint Presentation

1. Cancer Patient organisation involvement in cancer policy and EU cancer Plan prioritiesCharis GirvalakiECPC Director

2. European Cancer Patient Coalition Every year, more than 3 million people are diagnosed with cancer. An estimated 3.9 million people were faced with a diagnosis of cancer and 1.9 million have died from cancer in the European Union in 2018.Europe's Beating Cancer Plan:“It is estimated that, by 2035, cancer cases in the EU could have doubled in number, making the disease the leading cause of death.”Cancer is the 2nd leading cause of mortality in EU countries after cardiovascular diseases.

3. Why it mattersEuropean Cancer Patient Coalition3Significant and in many cases fatal burden across EuropeToo often neglectedImpact on the treatment course and outcomesImpact on long term well-being and quality of lifeSubstantial burden on the healthcare systemInformal caregivers support is required

4. ECPC's Policy & Advocacy activities cover the following action areas:Working to anticipate and formulate legislation taking place at the European levelParticipating in the EU legislative health policy process providing the scientific knowledge base required in policy developmentRaising awareness about cancer issues affecting European citizensProviding a platform for EU citizens' participation in the shaping and implementation of public health policiesEuropean Cancer Patient Coalition

5. Launched by the EC on 3 February 2021 => a key pillar to a strong European Health UnionSets out a new EU approach to cancer prevention, treatment and care. It will tackle the entire disease pathway, from prevention to quality of life of cancer patients and survivors.In close synergy with the actions proposed in the Pharmaceutical StrategyECPC has worked closely with the EC and EP providing feedback and input on the cancer policy strategy at the EU levelEP Special Committee on Beating Cancer:75 amendments submittedShared with 22 MEPs 43 were proposed by several MEPsReport voted in plenary in February 2022EU Beating Cancer PlanEuropean Cancer Patient Coalition5

6. In view of the implementation of the plan, ECPC takes part in the following stakeholder groups:Prevention Early detection, diagnosis and treatment Quality of life Research, innovation and digitalisation Reducing inequalities Through the activities of the Challenge Cancer Parliamentary Intergroup, ECPC has been advocating to influenced the cancer policy landscape and to shape the implementation of the EBCP EU Beating Cancer PlanEuropean Cancer Patient Coalition6

7. 20 million cancer survivors in the EUECPC has started an initiative towards establishing an EU Cancer Survivorship Day => events: “There is Life after Cancer: Putting an End to the Discrimination” (9 June 2020) “14 Million Reasons To Discuss Life After Cancer: Implementing The Right To Be Forgotten Across Europe” (19 February 2021) “20 Million Reasons to Discuss Life after Cancer: establishing a European cancer survivorship day” (29 June 2021)Cancer Survivorship Day is already being celebrated on the first Sunday of June in several countries all around the world :USA, Canada, India, South Africa, and Australia EU Cancer Survivorship DayEuropean Cancer Patient Coalition7

8. Establishing an annual Cancer Survivorship Day => a unique opportunity to set up a dialogue with patients, their families and stakeholders, establishing a proper forum to discuss their specific needs and priorities to achieve a good quality of life after beating cancer, with an emphasis each year on a specific pattern of unmet needs. an opportunity to promote the scope of the European Beating Cancer Plan and to support adequate policies to ensure rehabilitation and smooth reintegration of cancer survivors into social and professional lifeThere is a need for political will achieve the institutionalization of the EU Survivorship Day at the EU level = petition signed by 63 MEPs to be sent by MEP Cristian Busoi to EC President Ursula von der Leyen, EP President Roberta Metsola and Health Commissioner Stella KyriakidesEU Cancer Survivorship DayEuropean Cancer Patient Coalition8

9. Adopted on 25 November 2020, it aims at creating a future proof regulatory framework and at supporting industry in promoting research and technologies that actually reach patients in order to fulfil their therapeutic needs while addressing market failures. Based on 4 pillars, which include legislative and non-legislative action: ensuring access to affordable for patients, and addressing unmet medical needs (in the areas of AMR and rare diseases, for e.g.) supporting competitiveness, innovation and sustainability of the EU’s pharmaceutical industry and the development of high quality, safe, effective and greener medicines enhancing crisis preparedness and response mechanisms, diversified and secure supply chains, address medicines shortages ensuring a strong EU voice in the world, by promoting a high level of quality, efficacy and safety standardsECPC has sent feedback to the EC consultation and has provided input and advice on the policy option to be considered for the upcoming regulation expected in Q4 of 2022A pharmaceutical strategy for EuropeEuropean Cancer Patient Coalition9

10. ECPC has joined forces with RCE, ePAGs and other relevant stakeholders to ensure that the EC will implement the recommendations listed in the BECA reportECPC has worked closely with the EP and French PresidencyECPC responded to the stakeholder consultation on the revision of the Directive on cross-border healthcareVery important aspects on rare cancers and  ERNs are mentioned in the BECA report:Acknowledges that rare adult cancers are a public health challenge;Supports the introduction of a dedicated flagship initiative on rare adult cancers within the Europe’s Beating Cancer Plan;Calls for the Cancer Inequalities Registry to integrate information on rare cancers;Calls for dedicated funding for rare adult cancer research projects under Horizon Europe/UNCAN.euRecommends easier and timely access to molecular testing (for diagnosis/targeted therapy)Calls for increasing awareness of rare adult cancers amongst primary and secondary healthcare professionals Encourages Member States to establish national networks for rare adult cancers;Calls for improving access to clinical trials and compassionate use for rare adult cancer patients;Encourages novel regulatory approaches to enable rare adult cancer patients to access new innovative therapiesEmphasises the need to include rare adult cancers in the “inter-specialty cancer training programmeEmphasises the need to support educational programmes targeting rare adult cancer patients, carers and patient representatives in conjunction with ERNs;Acknowledges the specificities of rare adult cancers in programmes dedicated to improving the quality of life of cancer patients, survivors and carers;Calls on Member States to include a specific section on the management of rare adult cancers in their National Cancer Control Programme (NCCP) (along with a distinct section on cancers in children);Cross-border healthcare, ERNs & rare cancersEuropean Cancer Patient Coalition10

11. The EU HTA regulation is the very first output of the EU Pharmaceutical Strategy that will enable cancer patients’ access to innovative medical technology and medicines and will ensure high-quality joint clinical reports that could be directly used by national authorities. The current HTA regulation considers a patient-centric approach and is aimed at reducing the heavy administrative process of clinical assessments, supporting collaboration between Member States and enabling national health authorities to make timely and evidence-based decisions about pricing and reimbursement of innovative health technologies. Throughout our policy and advocacy work and participation in the EUnetHTA consortium, one of our main priorities is to ensure that cancer patients have timely access to innovative medicines and technologies => cancer medicines will be prioritised when applying this regulation. The EU Regulation on Health Technology Assessment (HTA) 2021European Cancer Patient Coalition11

12. European Cancer Patient Coalition12What gets measured gets done!In ECPC, we ensure that cancer and its complications and comorbidities remains high on the political agenda beyond the conclusion of the work on Europe’s Beating Cancer Plan and the EU Cancer Mission.

13. Thank you!European Cancer Patient Coalition Avenue Des Arts,51210 Brussels, Belgiumwww.ecpc.org I info@ecpc.org I + 32 (0) 2 721 41 14charis.girvalaki@ecpc.org