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Making the Invisible Visible - a Europe wide study to reveal the invisible costs of IBD to society

Brussels, 16 May 2019 — The Indirect Costs of IBD study will analyze data from over 3500 people with IBD from 27 countries in Europe and beyond in order to map and compare the invisible costs related to IBD. Results from the study will allow stakeholders and policymakers to better prioritize effective IBD treatment and support measures aimed at improving the situation for people with IBD in the work place and labor market.

Crohn´s disease and Ulcerative Colitis, collectively known as Inflammatory Bowel Disease (IBD) are associated with substantial costs to the direct healthcare system in Europe and are estimated to be around €4.6-5.6 billion per year. But what are the invisible costs of the disease? What are the costs of lost working days?  Or the costs of lost working days of a carer for a sick family member? Or costs associated to the loss of productivity at work?

These and other questions are being addressed in the Europe wide study which is being promoted by the European Federation of Crohn’s and Ulcerative Colitis (EFCCA) in collaboration with the European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN). Using the human capital approach model the study will evaluate the lost earnings (unemployment, reduced employment, productivity loss) not only of the IBD patient but also of informal caregivers such as family members and/or friends as well as other indirect costs linked to IBD.

The final results will be presented at a European Policy event in the second half of 2019 that will be organized by the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA).  “The results of the study will allow us to talk to policymaker as we believe that with the right policies,we can not only better deliver treatment and effective disease management which will result in reduced healthcare and non-healthcare costs but most importantly, allow patients and their families to lead happier, healthier lives. What people really care about is the impact of IBD on their wellbeing and their ability to play an active role in society says Salvo Leone, EFCCA chairman.

ESPGHAN-EFCCA Joint manifesto

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About the Study
The study is conducted by the Institute of Public Health, Jagiellonian University-Medical College, and the International Institute of Molecular and Cell Biology in Warsaw under the direct patronage of Polish Association Supporting People with IBD “J-elita” on behalf of EFCCA. More info:

The European Federation of Crohn's & Ulcerative Colitis Associations (EFCCA) is an umbrella organisation representing 36 national Crohn’s and Ulcerative Colitis (collectively known as Inflammatory Bowel Disease or IBD)  patient associations.  We are an organization of people united in our commitment to improve the life of the over 10 million people living with IBD worldwide (3.4 million in Europe alone) and to give them a louder voice and more visibility.

The European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) is a multi-professional organisation whose aim is to promote the health of children with special attention to the gastrointestinal tract, liver and nutritional status, through knowledge creation, the dissemination of science based information, the promotion of best practice in the delivery of care and the provision of high quality education for paediatric gastroenterology, hepatology and nutrition professionals in Europe and beyond.