The European Cancer Patient Coalition (ECPC) and the European Society for Medical Oncology (ESMO) have signed a Memorandum of Understanding, with the aim of enhancing the existing cooperation and increasing the efforts to achieve their common goals and objectives in the field of cancer to satisfy the new needs and new rights of cancer patients across Europe.
The Memorandum establishes a legal framework for current and future collaborations, leaving complete freedom and discretion to the partners. In this respect, the Memorandum works alongside existing ECPC and ESMO agreements with third parties, avoiding duplication and enriching existing initiatives.
The first topic on which ECPC and ESMO started collaborating was survivorship care. More than 10 million European citizens are currently living with a diagnosis of cancer. Cancer incidence is on the rise: last year 3.75 million new cancer patients have been diagnosed. At the same time, thanks to the advancemments in cancer treatment and the amelioration of standards of care, cancer mortality is decreasing. This situation, paired with the ageing of the European population, results in a large number of cancer survivors, with specific needs that the cancer community is not adequately addressing, such as:
· The stigma of cancer – The European Union and national governments have the responsibility to debuke the myth “cancer=death”, which is stigmatising millions of Europeans and creates unacceptable discrimination;
· Survivorship cancer plan – The need for a structured, multidisciplinary and integrated survivorship care plan, which would help the oncologists to follow up cancer patients after the acute treatment phase;
· The need for tools to implement and disseminate such survivorship cancer plans, like templates, mobile applications and other instruments to monitor the survivorship care of cancer patients and allowing them to return to a normal life.
ECPC is routinely and directly involved in the drafting of the Survivorship chapters of the new ESMO Clinical Practice Guidelines. Updated regularly by the ESMO Guidelines Committee, the Guidelines are the standard for best practice of a vast variety of cancers, and represent the most reliable, evidence based resource to help oncologists in taking practical decisions that affect patients’ lives. ECPC and ESMO decided to partner up to include more patient-friendly and solid survivorship care provisions in the guidelines, reflecting cancer patients’ growing needs for structured follow up after the acute treatment phase. In the coming years, each updated ESMO Guideline will contain a reviewed, patient-oriented survivorship chapter.
Check the ESMO Guides for Patients, an invaluable source of information. ECPC and ESMO will also ensure that the Guides for Patients will include updated provision on suvivorship care, in line with the Clinical Guidelines.
The Memorandum formalises a long established partnership. ECPC and ESMO have collaborated on a large range of key policy issues related to cancer, including:
· Rare cancers: ESMO and ECPC are founding partner of Rare Cancers Europe;
· Data protection: ECPC joined the efforts of ESMO to advocate for a balanced approach to the General Data Protection Regulation (GDRP);
· Immuno-oncology: ESMO collaborated and endorsed the first ECPC Guide to Immuno-Oncology leaflet, and supported the Immuno-Oncology Policy Action Framework, which defines the priorities for development of targeted policies to ensure the safe and equitable development of immuno-oncology in Europe;
· ECPC has provided for several years reliable and competent representatives to the ESMO Patient Advocates Working Group (ESMO PAWG), and has participated to numerous ESMO Congresses.