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Interview with Digestive Cancers Europe (DICE)

Stefan Gijssels, Executive Director of Digestive Cancers Europe (DICE)

Stefan Gijssels is the Executive Director of Digestive Cancers Europe (DICE) and EuropaColon. Stefan is a colon cancer survivor and dedicated to helping other people avoid getting cancer, and helping patients to get access to the best possible treatment.

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Stefan Gijssels - DICE Executive Director

1.FIRST OF ALL, TELL US ABOUT DIGESTIVE CANCERS EUROPE (DICE). WHAT WORK DO YOU DO? WHAT ARE YOUR OBJECTIVES? HOW DID DIGESTIVE CANCERS EUROPE (DICE) DEVELOP OUT OF EUROPACOLON?​

Digestive Cancers Europe (DICE) and its national members all share a common mission: to contribute to early diagnosis and decreased mortality from digestive cancers and to increase overall survival and quality of life.

We aim to represent the 800,000 people who are diagnosed with cancer of the oesophagus, stomach, pancreas, colon, rectum and other rare digestive cancers every year in Europe, as well as the 1.5 million digestive cancer survivors and the families of the 500,000 patients who die every year from digestive cancers.

DICE is the new organisation that has grown out of Europa Colon, which has been representing the voice of the colorectal cancer community for 15 years with 40 member groups in 30 countries across Europe. We decided to expand to cover all digestive cancers. 

We want to ensure that we change the current practice to ensure that more patients survive. 

The colorectal cancer roadmap takes us through the patient journey. Red indicating poor and dark green indicating very good.

We are trying to create a dashboard in Europe to show how progress is being made. 

Screening is critical, cost-effective and cost-saving through faecal blood testing and colonoscopy. 

The Council Recommendation of 2003 on cancer screening recommended faecal occult blood screening for colorectal cancer in men and women aged 50 to 74. However, today only three countries do this. Slovenia is a wonderful example of what can be done, and the Netherlands and the Basque region of Spain stand out in terms of best practice. 

In the Netherlands, 48% of patients are now diagnosed at Stage I, as compared to 15% without screening.

If the European Union was able to diagnose more colorectal cancer patients in stage I from the current 13% to 50%, 130,000 more lives could be saved per year and more than 3 billion€ in healthcare budget savings could be generated every year, and possibly the same amount in social and work-related value.

Screening challenges include that very often prevention and screening are part of what the regions do, while the money saved by it only benefits the federal budget, which offers a poor financial incentive for the regions to invest. This is the case in Belgium and some other countries, where prevention is regionalized. In order to organise screening properly, one has to work with other partners, for instance, the Ministry of Health has to work with the Ministry of the Interior, it requires working closely with GPs, laboratories, hospitals, as well as setting up communications campaigns to raise awareness. For many governments, this is far too complex and they prefer to ignore the problem, rather than deal with it.

2.What are your policy priorities?

We have our White Paper on Colorectal Screening in Europe – Saving Lives & Saving Money as our policy call to action, as well as our Roadmap for Colorectal Cancer Screening – which is a step by step explanation of what can be done and how it can be done. 

It’s very important to have an expert approach, and as such specialist hospitals and expert centres have a key role to play. 

I have had the privilege of being treated in a hospital where 85% of patients survive. If this were the case across the EU, we could save 120,000 lives, again annually. This is just through best practice application, and not through innovation and new technologies. 

We, as patient organisations, are the only ones who can design the patient journey in its most effective form, resulting in better patient outcomes and more rational allocation of health budgets. We would like to secure public funding for our work. There is a lot of waste in the system and lack of optimal decision-making. Many patient lives can be saved and a lot of money can be saved if we change policy.

3.How do you engage with policymakers?

We engage very much with policymakers. We engage as experts in some of the initiatives that the European Commission has set-up. 

 

We are part of the Innovative Partnership for Action Against Cancer (iPAAC) and EURACAN.  

 

We engage with the European Commission and the International Agency for Research on Cancer (IARC) to try to improve screening programmes in Europe. 

 

We are currently working with the European Commission to develop a network on colorectal cancer screening. This would be on the portal of the European Commission –  a digital forum where we can bring stakeholders together to discuss the way forward and share best practices in colorectal cancer screening. 

 

We also work through our national member associations to influence national policy. 

 

We are very happy that health and cancer-related matters are much higher on the agenda of the new European Commission. We hope to see research focus on digestive cancers under Horizon Europe.

4.Can you elaborate on your vision to reduce, by 2028, the number of deaths from digestive cancers in Europe by at least 50%?

We need a target to aim for to create a sense of purpose. This is our aspirational goal. We can achieve this goal through best practice. We have to convince policymakers and the medical community that this is possible and create change. We set the target in 2018 and hence we have 10 years to achieve this goal by 2028.

5.How do you engage with patients and caregivers?

We are focused on creating value for patients throughout their journey. We want to ensure support for patients and help them navigate the system. We have a full-service offering for patients, also covering social and professional aspects, as well as clinical matters. 

 

At a European level, we have our Patient Advisory Committee (PAC) and in the countries, we have our national associations.

 

We have a specific project for carers. We need to support those who care for patients.

6.How do organisations become members of Digestive Cancers Europe?

National patient associations involved in digestive cancers can apply for membership, if they meet our criteria.

7.Please tell us more about the launch European Colorectal Cancer Awareness Month (ECCAM)

This is an initiative organised at the global level and takes place in March every year, except in the UK where it is April. 

 

We focus on colorectal cancer prevention, screening and treatment. 

 

This year we launched a social media campaign talking about My Best 10 Seconds (capturing happiest moments) and highlighting that getting screened takes only 10 seconds. 

ECCAM-in-numbers-chart

We plan to have another social media campaign next year – it’s top-secret now, but watch this space!

8.What are your key activities for the rest of 2019 and into 2020?

We hope to have a Screening Summit in Brussels in and around March 2020.

 

We continue our work on our carers project. We have nutrition brochures in the pipeline. We will have further position papers, as well as videos and national information sessions on biosimilars. We will work on the specific treatment roadmap for colorectal cancer, as well as the treatment roadmap for gastric and oesophageal cancers. We are also working on a digital tool for a clinical trials database that we will put on our website next year.

9.How do you work with corporate sponsors and partners?

At the moment, almost 100% of our income comes from industry and a smaller part from research collaboration with institutes. 

 

Industry covers the pharmaceutical industry, imaging and medtech companies and nutrition companies. All our activities our non-promotional. 

 

We also partner with a number of organisations, such as, the European Patients’ Forum (EPF), the European Cancer Patient Coalition (ECPC), the European Society for Medical Oncology (ESMO), the European Society of Surgical Oncology (ESSO), the EU Health Coalition, as well as MEPs Against Cancer (MAC) in the European Parliament.

10.What would overarching policy success look like to you?

Our vision to reduce, by 2028, the number of deaths from digestive cancers in Europe by at least 50% remains our target goal. 

 

We want to get colorectal cancer screening higher on the policy agenda, with significant investment behind it. As part of this, patients should get treated in hospitals and centres with the right expertise. 

 

Our overall mission is to help manage the patient journey. We will help patients and work with governments to design how the patient journey should be optimally organised. The patient perspective here is critical.

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