IBD Drug Availability Putting Children at Risk of Lifelong Health Complications

At least a quarter of all patients with inflammatory bowel disease (IBD) present symptoms during childhood. However, delays in paediatric clinical trials result in off-label adult medications being prescribed for children, with serious lifelong health risks, including growth failure and cancer. 

June 21, 2016 – To halt the health risks for children and improve outcomes in the future, IBD experts across Europe are calling for an urgent increase in investment into paediatric clinical trials to ensure more drugs become available to improve treatment efficacy and reduce serious and unnecessary risks of therapy.

Professor Gigi Veereman, spokesperson for United European Gastroenterology (UEG) and Consultant in Paediatric Gastroenterology and Nutrition, is leading the call for change and explains; “In spite of recent investment to advance the care of patients with paediatric inflammatory bowel disease all over Europe, there is still an urgent need for more paediatric clinical trials. We need to speed up the availability of appropriately formulated licensed treatments with proven safety profiles so that children with IBD can attain their full psycho-social and physical potential into adulthood, without any unnecessary long-term health risks such as growth failure, severe infections and cancer. In addition, research on the effect of nutrition and the environment on these chronic diseases is very much needed.”

According to UEG’s Survey of Digestive Health across Europe, the incidence of IBD has been steadily increasing across Europe over the last few decades and as many as 30% of all cases are diagnosed during childhood.

However, traditional adult based therapies currently prescribed for children with inflammatory bowel disease can have potentially negative effects on the developing body, an example being the effects of corticosteroid therapy on bone density.  In fact, prolonged corticosteroid use has been found to contribute to the significant reduction in final adult height of almost 1 in 5 children.  Furthermore, recent studies report that younger patients also have treatment related complications, including the development of malignancies.  Specifically, some immunosuppressants have been found to increase the risk of skin cancers and uterine cervical cancers.

Currently, most of the drugs that are used in paediatric IBD have only been tested in children in small uncontrolled trials and only a few of the drugs have been approved for use in children after proper multicenter trials, resulting in a substantial proportion being prescribed off-label. As Professor Veereman highlights; “Children with IBD have different specific treatment needs and medication should aim beyond symptom control and also include restoration of growth and prevention of pubertal delay.”

Luisa Avedano, CEO of the European Federation of Crohn’s and Ulcerative Colitis Association (EFCCA) adds; “IBD is becoming more and more common in children and can have a more severe disease course and worse prognosis than when diagnosed in adulthood. Children with inflammatory bowel disease often present around the time of their pubertal growth spurt, a time of dramatic psychological and physical transition for a child, so specific attention with medication should be paid to preventing disturbances in growth and development.”

Significant improvements in the availability of specific paediatric IBD drugs is just one of a number of issues being raised by UEG as part of its initiative to improve the state of paediatric digestive health for the next generation throughout Europe.

Notes to Editors
For further information or to speak with Professor Gigi Veereman (or local paediatric digestive health expert) please contact Luke Paskins at UEG on +44 (0)1444 811099 or email media@ueg.eu.

Paediatric Digestive Health Across Europe – a report by UEG on the current state of early nutrition, liver disease and inflammatory bowel disease across Europe is available here.

About UEG
UEG, or United European Gastroenterology, is a professional non-profit organisation combining all the leading European societies concerned with digestive diseases. Together, its member societies represent over 22,000 specialists, working across medicine, surgery, paediatrics, gastrointestinal oncology and endoscopy. This makes UEG the most comprehensive organisation of its kind in the world, and a unique platform for collaboration and the exchange of knowledge. Find out more by visiting www.ueg.eu.

To advance standards of gastroenterological care and knowledge across Europe and the world, UEG offers numerous activities and initiatives, including:

  • UEG Week, the biggest congress of its kind in Europe, and one of the two largest in the world. NOW OPEN FOR PRESS REGISTRATION
  • UEG Education, the universal source of knowledge in gastroenterology, providing online and classroom courses, a huge online library and delivering the latest GI news, fostering debate and discussion
  • Training Support, funding for innovative training and educational programmes, as well as international scientific and professional co-operations
  • UEG Journal, published bi-monthly, covering translational and clinical studies from all areas of gastroenterology
  • EU Affairs, promoting research, prevention, early diagnosis and treatment of digestive diseases, and helping develop an effective health policy for Europe


  1. United European Gastroenterology Journal: (1) Farthing M, Roberts S, Samuel D, Williams D, et al, Survey of digestive health across Europe: Final report. Part 1: The burden of gastrointestinal diseases and the organisation and delivery of gastroenterology services across Europe, 2014 2: 195-196
  2. United European Gastroenterology Journal: (1) Farthing M, Roberts S, Samuel D, Williams D, et al, Survey of digestive health across Europe: Final report. Part 1: The burden of gastrointestinal diseases and the organisation and delivery of gastroenterology services across Europe, 2014 2: 195-196
  3. Heuschkel R, Salvestrini C, Beattie RM et al. Guidelines for the management of growth failure in childhood inflammatory bowel disease. Inflamm Bowel Dis. 2008 Jun; 14 (6): 839-49
  4. Jauregui-Amezaga A, Vermeire S, Prenen H ‘Use of biologics and chemotherapy in patients with inflammatory bowel diseases and cancer.’ Ann Gastroenterol. 2016 Apr-Jun; 29 (2): 127-36
  5. Malmborg P, Hildebrand P ‘The emerging global epidemic of paediatric inflammatory disease – causes and consequences.’ Journal of Internal Medicine 2016 March; 279 (3): 241-258
  6. United European Gastroenterology. Paediatric Digestive Health Across Europe. May 2016

United European Gastroenterology (UK Office)
Press & Media Officer
Jonjo Murphy
Email: media@ueg.eu
Tel: +44 (0)1444 811099

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