Yesterday I attended the very first Multi-Stakeholder Pancreatic Cancer European Platform meeting at the European Parliament in Brussels. I joined other pancreatic cancer stakeholders: namely MEPs, representatives from patient groups (like me), specialist clinicians and researchers in the field of pancreatic cancer and I was delighted to be the spokesperson for UK pancreatic cancer patients and their families.
What was clear was the agreement among delegates and MEPs alike that pancreatic cancer patients across Europe have been neglected and the disease underfunded for decades. What we did see however, was a clear motivation for change.
This meeting has been supported by The European Cancer Patient Coalition (of which Pancreatic Cancer Action has become a member) and four key MEP pancreatic cancer champions: Phillipe de Backer, Françoise Grossetête, Phillipe Juvin and Daciana Sârbu and without their commitment it is unlikely that this important meeting would have got off the ground.
Pancreatic Cancer Registry – a call was made for the inclusion of pancreatic cancer data in the European Network of Cancer Registries (ECRN ). It is so important that the data on pancreatic cancer across europe is collected in the same manner and reported on in the same way – this way we can easily compare countries – finding the best performers and learning from their best practice – adopting policies and patient care across the EU – so narrowing the inequalities that exist currently.
Early diagnosis is the third area – lots of discussion aroud this area and it will be good to sharePancreatic Cancer Action’s medical education initiatives such as our e-learning module for GPs and hospital doctors with our European colleagues.
It was decided to develop work groups for all three priority areas and I will be sitting on both the awareness group and the early diagnosis group as these are key focus areas for Pancreatic Cancer Action and where our experience can best be used to develop EU-wide initiatives.
Research funding was also brought up and this thread will be woven throughout all three workgroups.
In a later afternoon session, Françoise Grossetête, MEP officially launched the Giving a Voice to Pancreatic Cancer Call to Action – you can download this document here: CalltoAction – World Pancreatic Cancer Day 2014
The key areas of the Call to Action include:
- Ensuring pancreatic cancer is included in key European initiatives aiming at fighting cancer, with a focus on increasing research to better understand the disease, improving data collection, identifying tools for earlier diagnosis, providing educational programmes, and improving standard of care with a focus on active treatment;
- Ensuring that Member States include pancreatic cancer in their national cancer plans and in their health awareness programmes
Other speakers yesterday afternoon included European Cancer Patient Coalition (ECPC) President Francesco De Lorenzo, Professor Matthias Löhr, Professor of Gastroenterology and Hepatology at the Karolinska Institute, Sweden. Antoni Montserrat, Policy Officer for cancer and rare diseases, Directorate of Public Health for the European Commission (DG SANCO).
Professor Löhr stated that “Pancreatic cancer is a medical emergency” and that more should be done to improve early diagnosis including increasing translational research into finding a diagnostic biomarker.
“We can feel a sense of urgency and consensus that we can urgently address pancreatic cancer through the European Parliament and also in the member states. Pancreatic cancer as public policy priority is getting more support. This is a start of a process not the end.”
I will keep you informed of further progress but this is an exciting initiative as we were told that EU council recommendation is usually heavily implemented across member states. This means we can make a difference for patents not only in wider Europe but recommendations in the EU could help change policy here in the UK too.
Founder & Chief Executive, Pancreatic Cancer Action
13th Nov 2014