Pancreatic cancer is set to be Europe’s second leading cause of cancer death by 2020. Why, then, is funding so low? Pancreatic Cancer Europe explains.
Pancreatic Cancer Europe is a platform composed of around 40 stakeholders from more than 15 European countries. These stakeholders include European experts, academics, patient groups, clinical practitioners, journalists, pharmaceutical industries and policymakers, collaborating for the prioritisation of pancreatic cancer (PC) on the EU and national policy agendas.
Pancreatic Cancer Europe is committed to raising awareness of pancreatic cancer to optimise care for patients through earlier diagnosis, co-ordinated research and data collection.
What was the inspiration behind Pancreatic Cancer Europe?
Pancreatic Cancer Europe was formed after a call to action launched by four members of the European Parliament in 2014, calling for the establishment of such a platform to address the main gaps surrounding this forgotten yet terminal disease.1
It was created based on one observation: in 2014, pancreatic cancer was the fourth cause of death by cancer in Europe, is now the third, and is set to be the second by 2020, if no action is taken. It is one of the cancers with a rising mortality in both sexes, and it also has the lowest survival rate of all cancers.
Yet, in spite of these alarming figures, pancreatic cancer is absent from most cancer control policies, both at EU and national level. PC is often referred to as the ‘neglected cancer’, which is one of the reasons why the platform has decided to make awareness raising one of its key priorities.
What are the key goals of Pancreatic Cancer Europe?
In order to push for the prioritisation of pancreatic cancer on the policy agenda, the platform has engaged with a group of key supportive policymakers at European level, advocating for an improvement in the standard of care for patients with PC, by addressing the existing gaps related to the lack of awareness, diagnosis and data collection, as well as the challenges this cancer poses to researchers.
Spurred by a strong political will to address the devastating impact of pancreatic cancer, Pancreatic Cancer Europe aims to reverse the trend of lack of improvement in survival for pancreatic cancer by:
- Increasing pancreatic cancer research and political support;
- Raising lay and medical awareness by developing awareness tools and campaigns;
- Uniform collection of data relating to pancreatic cancer diagnosis and treatments across Europe; and
- Enabling a forum of exchange between national stakeholders.
What does Pancreatic Cancer Europe do?
Pancreatic Cancer Europe has developed awareness brochures and websites, and is active on social media to help local groups and patients learn more about the disease. The association and its national members also organise regular events in both institutional and public settings to raise awareness of their actions and of the disease.
On top of its activities, Pancreatic Cancer Europe regularly supports the initiatives launched by its partners, such as the campaign led by United European Gastroenterology (UEG) on the link between alcohol and cancer, calling on policymakers for a change.2
Pancreatic Cancer Europe has also engaged with EUPancreas, a European COST Action focused on PC research, to help foster research projects across Europe.
In 2018, Pancreatic Cancer Europe will strengthen its advocacy to ensure that pancreatic cancer is present on the European policy agenda.
What is holding back pancreatic cancer research in Europe?
Pancreatic Cancer Europe’s Dr Núria Malats, head of the Genetic and Molecular Epidemiology Group at the Spanish National Cancer Research Centre and former chair of the EUPancreas COST Action, spoke to Health Europa Quarterly in more detail about the gaps, challenges and priorities in PC research, and the importance of raising awareness and improving collaboration.
Why has pancreatic cancer traditionally received so little funding and attention?
There are several factors that explain the lack of attention paid to this important disease and dreadful cancer.
First of all, it has a low incidence – i.e. it is not a common cancer. Nonetheless, it is becoming a very important cause of early mortality and will prove an important health problem in Western countries in the next few years.
Pancreatic cancer is also not a rare cancer – it’s in-between common and rare, and this too has limited the attention it has received.
However, this is changing, and DG SANTE has now recognised PC within the group of ‘neglected cancers’ in its last joint action on cancer.
Funding has also been low because the prognosis is so bad. The median survival rate is just six months. People get very sick and die very quickly after being diagnosed with pancreatic cancer. This has translated into little will at the political or societal level to put pancreatic cancer on the agenda.
Compare this to breast or colon cancer: they are more chronic, and more people survive them to share their stories. Therefore, there are more patient organisations out there dedicated to improving awareness and attention.
Finally, the only treatment for pancreatic cancer is surgery, but so many patients are diagnosed too late to benefit from that. Pharma companies have therefore had little interest in investing in the disease.
Important initiatives, for example towards precision medicine for pancreatic cancer, have more recently begun, and this is thankfully leading to a change in attitude from the medical and pharma communities.
What specific research challenges does pancreatic cancer present?
Pancreatic cancer poses several challenges, not only to patients, their families and the medical community, but also at the researcher level.
Its low incidence means that most studies are underpowered, and we don’t get big enough sample sizes to be useful to research.
Diagnosis of the disease is also difficult, so there is a high proportion of false-positive cases, which further impairs the quality of the studies.
The collection of patient data is extremely arduous because the patients are so sick, and there is also a deficit of pancreatic cancer omics data. What’s more, many countries in Europe don’t use cancer registries to collect treatment outcome data.
Because so few PC patients are able to have surgery, there is also a shortage of tumour and normal tissue samples, and the ones we do have are sometimes inappropriate for research.
The way to overcome all of these difficulties is of course to work together, to launch large collaborative efforts and pool resources and expertise across countries.
A good example of this in practice is the EU COST Action EUPancreas, which brought together more than 200 members from 22 countries into one dedicated research platform for pancreatic cancer. Pancreatic Cancer Europe is now following in its footsteps.
Which particular avenues of research are Pancreatic Cancer Europe interested in exploring?
EUPancreas and Pancreatic Cancer Europe organised in April 2017 a meeting in Brussels specifically on PC research in Europe. Its aim was to identify the gaps and challenges in this field and also to prioritise areas of research.
After discussions between several key stakeholders involved in the field, we arrived at the following four principles:
- Prioritise research into the accurate classification of precursor lesions of pancreatic cancer (cystic tumours, intraductal papillary mucinous neoplasm, and pancreatic intraepithelial neoplasia) according to imaging and biomarkers – this will help to advance diagnosis;
- Prioritise research to define the real ‘window of opportunity’ that will make screening programmes more effective;
- Prioritise research into identification markers for response prediction towards personalised or precision treatment for pancreatic cancer; and
- Prioritise the establishment of multistakeholder co-operative teams including multidisciplinary research and health professional teams, private sector representatives, patients, health economics professionals, and policymakers.
It was our – and other stakeholders’ – discussions with DG SANTE on these topics that led, I think, to the inclusion of pancreatic cancer in the group of neglected cancers in the last cancer joint action. That is good progress, but we have more to do.
Less than 2% of European cancer research funding is invested in pancreatic cancer. In Horizon 2020, there are no calls or topics dedicated specifically to PC. Very few European projects are being funded for this cancer.
The US has prioritised PC research, and they are now building large cohorts and studies to push forward our understanding of this disease. Europe should now do similarly: everything, every step, every piece of information we can uncover is so important to advance control of this devastating cancer.
Who is involved in Pancreatic Cancer Europe?
Pancreatic Cancer Europe is split into four work streams: Awareness and Diagnosis, Research, Registries, and National Support. All are led by members of the board coming from different national organisations. Among them are:
- Ali Stunt, founder and chief executive of Pancreatic Cancer Action (UK);
- Dr Lydia Makaroff, director of the European Cancer Patient Coalition;
- Professor Matthias Löhr, professor of gastroenterology and senior physician at Karolinska Institutet (Stockholm, Sweden) and member of the Public Affairs Committee of UEG;
Professor Alfredo Carrato, director of the Medical Oncology Department at Ramon y Cajal University Hospital (Spain); and
- Dr Núria Malats, head of the Genetic and Molecular Epidemiology Group at the Spanish National Cancer Research Centre and former chair of the EUPancreas COST Action.
Financially supported by multiple healthcare companies, Pancreatic Cancer Europe operates independently.
- Pancreatic cancer represents a major challenge, say MEPs, The Parliament Magazine (2014). https://www.theparliamentmagazine.eu/articles/opinion/pancreatic-cancer-represents-major-challenge-say-meps. Last accessed: 15 January 2018
- Alcohol and Digestive Cancers Across Europe: Time for Change. UEG (2017). http://www.pancreaticcancereurope.eu/files/user_upload/pdf/UEG_Alcohol___Digestive_Cancers.pdf. Last accessed: 15 January 2018
Dr Núria Malats
Pancreatic Cancer Europe
This article will appear in issue 4 of Health Europa Quarterly, which will be published in February.