1 / 23

Empowering patients’ organizations to overcome inequalities in cancer care Francesco De Lorenzo

Empowering patients’ organizations to overcome inequalities in cancer care Francesco De Lorenzo ECPC President. 12 th June 2014. ALL CANCER PATIENTS. ECPC Members in Action Conference 2009. ECPC: "Nothing about us, without us".

alden
Download Presentation

Empowering patients’ organizations to overcome inequalities in cancer care Francesco De Lorenzo

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. Empowering patients’ organizations to overcome inequalities in cancer care Francesco De Lorenzo ECPC President 12th June 2014 ALL CANCER PATIENTS ECPC Members in Action Conference 2009

  2. ECPC: "Nothing about us, without us" • Representing 344 cancer patient groups in 46 countries • All cancers – common and rare • Run and governed by patients • Promoting timely access to appropriate prevention, screening, early diagnosis, treatment and care for all cancer patients • Reducing disparity and inequity across the EU • Encouraging the advance of cancer research & innovation • Increasing cancer patients' influence over European health and research policy • High visibility with EU Commission, EU Parliament (MEP MAC), EMA

  3. Coordination & Advocacy National level European level ECPC Advocacy :bridging diversity to support cancer survivors

  4. European Cancer Patient Coalition Activities:

  5. Planned activities • Working Groups: Rare Cancers, Paediatric Oncology, Melanoma – personalised medicine, Biobanking, Access to employment and social benefits, Access to medicines and radiotherapy, Head and Neck Cancers. • European Projects:

  6. Inequalities in cancer care: a European reality • Example: avg. cancer expenditures per citizen in the EU

  7. Inequalities in cancer care: a European reality Old EU Member States New EU Member States

  8. Joint Actions: harmonising national cancer plans • EPAAC • European Guide for Quality National Cancer Control programmesBasic document depicting the state of art of cancer care and providing fundamental suggestions to promote convergence in national approaches to cancer plans • ECPC Role • Voicing the need for an European Cancer Information System; • Stressing the importance of an EU strategy on rare tumours(in collaboration with ESMO - RARECARENet) • But it is not enough

  9. Joint Actions: harmonising national cancer plans • CANCON • Acknowledges the existing inequalities in cancer treatment outcome in Europe; • Focuses on cost-effective interventions based on good practices; • Expected outcome: • Member State Platform dedicated on cancer; • European Guide on Quality Improvement in Comprehensive Cancer Control: guidelines for Member States to ameliorate their national cancer plans. • ECPC Role • Work Package 4: Coordination of the Guide drafting • Work Package 5: Member States Platform • Work Package 7: Community Cancer Care • Work Package 8: Survivorship and Rehabilitation • But it is not enough

  10. Solution: European Cancer Plan • The causes of cancer care inequalities are not merely related to health policies, but also to general economic situation and social policies • Need for a pan-European, totalapproachin line with Council of the EU Conclusions on Reducing the Burden of Cancer, 2008 • An European Cancer Plan shall: • Be based on existing studies, like EUROCHIP and BenchCan; • Take into consideration EU legal and political framework, including the Cross Border Directive

  11. Solution: European Cancer Plan - EUROCHIP Source: Verdecchia A. et al. European Journal of Public Health, 2008

  12. Solution: European Cancer Plan - EUROCHIP • ECPC – OECI Conference • “How uniform is cancer care in Europe” • 18thFebruary 2014 • In EUROCHIP-3, the Work Package 7 proposed a strategy for reducing cancerinequalities investigating breastcancer management. • How?: Cost should be systematicallyconsidered in the evidence-basedevaluation for cancer care. Minimal-requirement-tools for acceptable treatmentconstitutes an innovative approach to enable public health authorities to identify priorities able to reduce disparities • Source: O. Pagani, “The work fo the EUROCHIP3 WP& on Breast Cancer”

  13. Solution: European Cancer Plan - BenchCan • Objectives: • To collect, compare and align the standards and accreditation criteria of comprehensive cancer care; • To review and refine a benchmarking tool; • To pilot the benchmark tool with particular attention to operations management and best clinical practice. • To maximise knowledge exchange and sharing of best practice • Advantage: • BenchCan is directly created and managed bythe same European Cancer Institutesresponsible to deliver care to patients

  14. Solution: European Cancer PlanRARECARENet Problem: few countries (e.g France) have recognised specialised centres for rare cancers • The Project • EAHC financedproject • Consortium of 11 partners • ECPC Deliverables • A list of 144 Rare Cancer patient organisations across Europe • An online library with information on rare cancers: • diagnosis, treatment and follow-up • The identification of Centres of Excelence for rare cancers in Europe (ongoing)

  15. Solution: European Cancer PlanRARECARENet • FINDINGS Numberfo Rare Cancer patients organisation per Member State

  16. Solution: European Cancer PlaneSMART • Objectives: • demonstrate the effects of a real-time, mobile phone based, remote patient monitoring intervention on key patient outcomes and delivery of care provided to people with cancer during and after chemotherapy • Outcome: • Creation of areal-time, mobile phone based remote patient monitoring system, the Advanced Symptom Management System (ASyMS) • Test of the ASyMS • ECPC’srole: • Provide guidance from the patient perspective; • Dissemination

  17. Solution: European Cancer Plan - Advocacy • Cross Border Healthcare Directive • Enormous potential for cancer patients • Basis for the European Reference Networks • Directive adopted in 2011, in force since 2013BUTMost EU Member States still did not receive the directive! • ECPC-OECI need to keep advocating/overseeing on truthful application of CBHCD • New European Parliament and new Commission • Very dynamic (and delicate) political moment; • Application of Lisbon Treaty enhances Parliament’s power; • Need to act NOW!

  18. European Cancer Patient’s Bill of Right &Call to Action • The Bill of Rights: • A catalyst for change: to provide every European citizen with the right tothe optimum standard of care; • Basic tool for all EU cancer patients • Widepolitical support • ECPC Call to Action • First action point derivedfrom theBill of Rights • A politicalmanifestofor the new MEPs,engagingthem in fighting cancer; • More than25 subscriptions, from all groups • Objective: creation of first cancer intergroup

  19. Call to ActionList of endorsers Total: 28 MEPs …and counting!

  20. Solution: European Cancer Plan – Advocacy Sharing best practices – The Italianexample • The issue: • EMA newly authorised drugs are not timely adopted by Member States; • Reimbursements arrive with huge delays. • The solution: • Translation of Article 44, paragraph 3, 5bis and 5ter of law n. 98, 9th August 2013 • Article 44, paragraph 5bis • AIFA is obliged to prioritise the classification of the new drugs falling within the categories expressed in paragraph Art. 44 paragraph 3 over any other pending classification process, given that the request for classification from the pharmaceutical company has been correctly submitted, including all the necessary supporting documents. • AIFA can schedule extraordinary meetings of its Commissions responsible for the classification of the aforementioned new drugs, in order to ensure the smooth and quick categorisation. • AIFA is obliged to finalise the process focategorisation of the aforementioned drugs within the limit of 100 days. • Article 44, paragraph 5ter • Pharmaceutical companies in process of receiving a market authorisation from the EMA for new drugs falling within the domain of Article 44 paragraph 3 are obliged to submit to AIFA a request for categorisation of the mentioned new drug within 30 days after having being granted the market authorisation from the EMA. • In case the pharmaceutical company would fail to submit the due categorisation request, AIFA will solicit prompt action, requesting the company to react within the successive 30 days.

  21. Solution: European Cancer PlanBioBanking • Biobankingdoes not happenwithout patients/donors • Importance for patients: • Future research • Info on newlyavailabletreatments • Info for patients simblings • The issue: communicatebiobankingECPC’sinvolvement in Biobanking – EuroCanPlatfform WP10 • Dr. Peter Riegman has workedwith ECPC to create a FAQs document on Biobankingcovering the most important questions of interest for patients.

  22. Take away messages • Europe is torn by unacceptable inequalities in cancer care; • Laudable efforts have been made to address this issue; • But a more brave and resolute action is needed: the creation of an European Cancer Plan; • Such plan shall take inspiration from existing research studies, run by the same scientific community that provides the best cancer care in Europe; • However, a broad advocacy effort is needed to keep cancer high on the EU political agenda and ensure that momentum is not lost.

  23. Thank you very much! Nothing about us – without us! Please get in touch! Francesco De Lorenzo francesco.delorenzo@ecpc.org CHAMPIONING THE INTERESTS OF EUROPEAN CANCER PATIENTS (change footnote using Menu "View > Change headline/footnote")

More Related