EFCAA CONGRESS BRUSSEL OCT 17 2013
17/10/2013 “From EU Citizenship to IBD – zenship” European Parliament
European Federation of Chron’s and Ulcerative Colitis Association.
MEP Sergio Cofferati started the meeting introducing the Vice-president of the European Parliament Mr Miguel Angel Martinez.
Mr Martinez congratulated and thanked EFCCA for the organization of the meeting which has to be a start of a commitment for the institutions to be aware, at disposal and mobilised.
Mr Cofferati introduced the 1st Panel “Employment and labour market” and debate, with Mr Alvaro Oliveira (DG Justice – Equal treatment legislation) and Ms Auslaug Eva Bjornsdottir, EFCCA Youth Group.
The aim is to point out the needs relevant to people with IBD and promote the awareness by building pressure groups able to move the legislators and have their rights recognized.
Mr Oliveira gave significant information about the EU legislation in terms of employment equality.
One important step forward against discrimination due to health conditions has been EU Directive 2000/78 CE that aims to combat discrimination on grounds of disability, sexual orientation, religion or belief and age in the workplace.
The debate from the floor brought the question to MEP Cofferati by Simon Travis, President of ECCO (European Crohn´s and Colitis Organisation) about what can the Euro commission do to the reduce the disparity among countries in terms of employment discrimination.
MEP Cofferati outlined that the actions to be taken which are possible and necessary in legislation have to start from giving support to research, intervention and cure in order to harmonize the conditions in all EU countries. Furthermore trade unions should represent and protect the right to work of patients without discrimination due to health conditions.
Introduction to 2nd Panel “Health care and research” and debate, with DG SANCO Albrecht Werner, Prof. S. Travis ECCO, Prof. Stockbrugger UEG (United European Gastroenterology), Marco Greco EFCCA chairman.
Prof. Travis pointed out core elements in terms of helthcare and research.
* The importance to go back to research as we are close to find a cause of the disease and the EU to support research.
* The differences from country to country in terms of access to care (Ex. In Finland distances to reach the specialized centres).
Marco Greco highlighted the fact that in order to get better and more uniform access to care it should be necessary for the EU countries to establish guidelines for standard of care for IBD.
Prof. Stockbrugger ‘s presentation showed that IBD is increasing and lowering in age. No genetic disease has ever had this incidence. Some risk factors have been identified like environmental factors, smoke that combined with the genetic factor originate the disease.
New therapies are coming for US and Asia but tested in Europe, so Europe tests drugs for someone else and the tested product comes back to European consumers while people involved in research of new drugs in Europe emigrate to continue this research. This highlights the difficult situation of European research nowadays. The help of the EU is now necessary not only in terms of support to research but also to support the improvement of patients ‘quality of life covering all aspects of social life, not only medical treatments.
UEG, ECCO and EFFCA have presented a written declaration to the EU Parliament “IBD A lifelong craving for health and well being”.
Marco Greco pointed out the difference in treatment from country to country and also of IBD compared to other diseases.
Actions must be taken to improve patients’ conditions.
First IBD patients should be more involved in the decisions taken about them.
He also highlighted the importance of the role of nurses that work with patients that should be specifically trained.
Importance of research and again in this area as well he drew attention to the money patients’ associations raise for research and their availability for trials.
Patients are a source also because being a patient doesn’t mean you lose your skills as a professional and your rights as a citizen.
3rd Panel “Youth and Education” with Ms Mary Kyriazopoulou, European Agency for Development in Special Needs Education (EADSNE), Prof. Maurizio Vecchi, University of Milan, Daniel Sundstein, EFCCA Youth Group, Marian O’Connor N-ECCO.
IBD young patients experience inequality during their educational life. The often are forced to interrupt studies or come across significant delays that cause a further difficult access to work.
Ms Kyriazopoulou pointed out the importance of building a school system accessible and more flexible for an inclusive education. ESDNA formed a platform of all Ministries of Education to discuss and get to an equality in education focusing on both academic and social learning.
The conclusion of the meeting expressed by Marco Greco can be summerized with the following sentence: Patients are part of the solution!
Reported from Teresa Perrone on Behalf of AGORA