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Another EU Missed Opportunity: Cancer Mission with no Patient on Board?

Date

16 Aug 2019

Sections

Health & Consumers

Brussels, Monday 13 August 2019

The European Commission, after first communicating the name of the Chair of the cancer mission, announced recently the 14 experts selected as members of the Horizon Europe Cancer Mission Board, and contrary to expectations, no cancer patient representative was selected. “The European Cancer Patient Coalition (ECPC) is surprised that the value and importance of patient input were not recognised”, stated Kathi Apostolidis, President of ECPC. 
 
This is particularly surprising in  light of the European Commission’s second cancer mission report on “Governing Missions in the European Union”, where commitment to citizen engagement and reinforcement of its transparency and legitimacy, are portrayed as the ultimate level of a robust public trust ensuring longevity to the mission and adoption of its conclusions. 
 
ECPC believes that the mission-oriented approach to cancer will offer the opportunity to approach the disease also as a social issue, based on science for and with society, involving not only patients, families and caretakers, the medical and research communities and policymakers, but also society at large. ECPC engaged very early in the debate about the mission-oriented approach to cancer and has collaborated closely, for more than two years now, with Cancer Core Europe and the prominent European Academy for Cancer Sciences (EACS), both within the Governing Body and the Science Policy Committee. 
 
Today, several well-known scientific cancer organisations collaborate in development of strategies for a mission-oriented approach to cancer; to name a few these include Cancer Core Europe, Cancer Prevention Europe, the Organisation of European Cancer Institutes (OECI), the European Organisation for Research and Treatment of Cancer (EORTC), EURO Tech University Alliance and the EACS.  The EACS as an independent organisation, composed of eminent oncologists and cancer researchers, is expected to bridge the efforts of the cancer community with the activities of the Mission Board ensuring that the viewpoints of all participants are channelled. The special issue of Molecular Oncology, published on Mach 1st  this year - featuring the ECPC’s perspective “The European Cancer Patient Coalition and its central role in connecting stakeholders to advance patient‐centric solutions in the mission on cancer” - presents the views of key members supporting the mission-oriented approach to cancer. 
 
With almost four million people being diagnosed with cancer each year, and considering the complexity of the disease, we are facing a global societal challenge that calls for urgent actions to organically connect cancer research to cancer and survivorship care to decrease  the burden: ‘’survivorship, fighting inequalities in access to care, to surgery, removing the stigma facing patients and survivors, getting the growing ranks of survivors back to work and caring for the cancer patient”, were listed by Francesco De Lorenzo, Chair of the Scientific Committee of ECPC, in an article published by Politico Pro  on  Aug. 4, 2019.  These social aspects must be addressed across the cancer care continuum and patient insights are expected to enrich and strengthen the value of a patient-centric, societal approach to the cancer mission. 
 
The EU Joint Actions for Cancer (EPAAC, CanCon, iPAAC, JARC, ECIBC) in which the Commission included the patient perspective on equal terms as that of all other participants, and in which, namely in CanCon, ECPC, representing cancer patients, had its policy proposal accepted by 17 Member States and co-authored Joint Action policy papers, should be the beacon guiding also the cancer mission.  ECPC has participated in all Joint Actions for cancer, and it has contributed considerably to the Joint Action on Cancer Control (CanCon), by stressing, among other issues, the importance of survivorship in National Cancer Plans of Member States. Providing crucial knowledge and policy recommendations from the perspective of the patient is just one example of how to achieve a broader perspective on the cancer mission, i.e., by creating more cohesive policy to  address cancer research, evidence-based predictive and personalized cancer medicine including health-related quality of life research, psychosocial oncology, rehabilitation, supportive and palliative care, long-term follow-up and survivorship research, health economics including social consequences of cancer and employment issues.
 
“We look forward to building a constructive and collaborative relationship with the Cancer Mission Board, as we have already done with prominent experts from the cancer research/care continuum, the EACS, as well as the Joint Actions for cancer.  Such collaborations will enrich and broaden the scope of cancer research and care by addressing disparities and inefficiencies in partnership’, said Kathi Apostolidis, President of ECPC.
 
As promised in its mandate, ECPC will continue its mission to overcome the inequalities in cancer care and strive to ensure that cancer patients are considered by decision-makers as co-creators of their health. 
 
ENDS
 
About the European Cancer Patient Coalition
European Cancer Patient Coalition (ECPC) is the voice of cancer patients in Europe. With over 450 members, ECPC is Europe’s largest umbrella cancer patients’ association, covering all 28 EU member states and many other European and non-European countries. ECPC represents patients affected by all types of cancers, from the rarest to the most common.
 
Notes to editors:
For more information please contact: clemence.moriniere@ecpc.org  +32 (0) 2 721 4114. Follow us on Twitter (@cancereu), Facebook (facebook.com/pg/ECPCfb) and on www.ecpc.org
 
 
 

 

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