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28 October 2013
On 17 October, HFE attended the final conference of the World IBD Campaign at the European Parliament. The event, organised by HFE member the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA), with the support of MEP Cofferati (S&D, Italy) and MEP Panayotova (EPP, Bulgaria), discussed the priorities and needs of people living with inflammatory bowel diseases (IBD) from 3 perspectives: employment and labour market, healthcare and research, youth and education.
Inflammatory bowel diseases (IBD) affect over 2.2 million people in Europe, men and women alike. In most cases the illness can be kept under control with medication, but despite extensive research there is currently no known cause or cure for IBD. As emphasized by MEP Cofferati, “there is a lack of awareness of these chronic diseases. There is a need for societal mobilization especially in a moment of economic crisis that could affect research and health for IBD patients.”
The first panel on “Employment and Labour market” focused on the current labour legislation for people affect by IBDs. Mr. Alvaro Oliveira from the Directorate General for Justice at the European Commission, clarified that people with chronic diseases can be protected under European legislation against discrimination. The directive 2000/78 prohibits discrimination in recruitment, working conditions, training and career progression. The panel highlighted that despite the fact that both European and international legislation have became more and more protective towards people affected by chronic diseases, these people are still victims of discrimination in the work place. Ms. Bjornsdottir, an EFCCA member, explained that small changes in the working place, for instance flexible hours, working from home and work stations with easy access to a toilet, could improve the lives of people suffering from IBDs.
The second Panel on “healthcare and research” pointed out the necessity to guarantee safe access and rights to treatment for all people affected by long-life diseases. EFCCA called for the identification of European guidelines for IBD carers and treatments, which would be applied in all the EU Member States. EFCCA highlighted that IBD patients` quality and length of life depends on quality care. IBD care covers all components of individual and social life, not only medical diagnosis. EFCCA Chairman, Marco Greco stated that “To reduce the impact of IBDs in society, it needs to improve the access to specialised medical care for IBD patients and support them through multidisciplinary teams. Moreover, it is necessary to create new healthcare services which do not oblige the patient to go to the hospital.”
The last panel on “Youth and education” focused and young IBD patients. Prof. Vecchi defined these diseases as a “challenge”. The diagnosis is difficult, and a late diagnosis can have a negative impact on patient health, due to succession of periods of sickness and remittance. Maintaining treatment is essential even in periods of remittance; otherwise IBD patients can face severe complications. These diseases often hit young adults and data has shown a growing percentage of teenagers are being affected by IBD. It means that these pathologies often have a terrible impact on the educational and professional lives of young patients.
Prof.Simon Travis closed the conference by presenting the next goals for IBD patients including increasing awareness of IBD diseases and improving quality of life for people affected by these pathologies. To achieve these aims, patients have to be involved in national strategies on IBDs. However. Mr. Travis suggested that the EU has a role to play and should support scientific research on the causes of IBDs, and should include inflammatory diseases in the list of chronic pathologies to provide wider protection of patient rights.