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Living with Diabetes in Europe How to improve quality of life

Living with Diabetes in Europe How to improve quality of life. 15 July 08. Welcome Diabetes across Europe Living with diabetes Discussion with representatives from Diabetes Associations What the EU can do Conclusions and Recommendations “Towards an EU strategy for Diabetes” .

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Living with Diabetes in Europe How to improve quality of life

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  1. Living with Diabetes in Europe How to improve quality of life 15 July 08 • Welcome • Diabetes across Europe • Living with diabetes • Discussion with representatives from Diabetes Associations • What the EU can do • Conclusions and Recommendations “Towards an EU strategy for Diabetes” IDF | Promoting diabetes care, prevention and a cure worldwide

  2. IDF | Promoting diabetes care, prevention and a cure worldwide

  3. A Policy PerspectiveDiabetes across Europe Diabetes Working Group 15 July 2008 Michael Hall, IDF Europe Anne Marie Felton, FEND

  4. Significance of National Diabetes Frameworks Existence of national diabetes framework Indication that diabetes is a government priority Measures/funding to address disease burden/complications 1989 St Vincent Declaration Recognises importance of national plans Most countries in Audit signed Declaration Supported by WHO Europe Commitment to multiple initiatives against diabetes Many countries failed to fulfil key requirement: national plans Subsequent declarations: Council of EU, MEPs, UN Global consensus on importance of national plans Why so little progress?

  5. The Diabetes Policy Puzzle: Towards Benchmarking in the EU25 2005: IDF Europe / FEND carry out first pan-European audit: assess existence and implementation of national plans No benchmarks to assess existence of national plans First Edition (2005) National plans in Significant differences in plans and guidelines Inequalities: Life expectancy Health status Access to high-quality services For people living with diabetes across Europe 12 countries (EU 25)

  6. Why a Second Edition? Update 2005 report Set benchmarks to measure progress in development of plans Focus on national policies and practices Prevention Screening Management Second Edition (2008) Timely Explosion in incidence: EU and industrialised world Best practice Stakeholder priorities Aim: raise standards of care Provides strong evidence Aim: show urgent need to address diabetes through targeted policy action

  7. About the 2008 Audit Snapshot of current EU diabetes situation Detailed country reports: EU-27 + 3 New focus section on at-risk groups Audit summary Highlights growth in prevalence Estimates cost to governments Records status of national policies Impact on patient access Formal launch to Commissioner Vassiliou in Autumn 2008

  8. A few key findings Prevalence rates: 4 % 11.8 % United Kingdom Germany At least have rates higher than 13 9 % countries (mainly new MSs) of the adult population

  9. A few key findings Prevalence rates: Country 2003 2006 2025 estimate EU-27 average 7.63 8.62 10.31 Belgium 4.2 5.2 9.7 Germany 10.2 11.8 13.3 Ireland 3.4 5.6 6.4 Latvia 9.9 10.0 11.0 Luxembourg 3.8 6.9 8.2 Malta 9.2 9.7 11.6 Portugal 7.8 8.2 9.8 UK 3.9 4.0 4.6

  10. A few key findings Cost: € Significant and growing Where data available, likely to be underestimated: lack of consideration for direct and indirect costs of disease Growing diabetes prevalence rates Progress low and frustratingly slow Varying levels of implementation, monitoring, evaluation of national plans In some countries, differences between reimbursement policy and access levels suggest lack of information on treatments Increasing cost burden Repeated calls for action – Europe and internationally

  11. Conclusions Striking differences in priorities remain on prevention, treatment and management National practices vary and comparable data may be imperfect… but report tells shows need for coordination IDF Europe and FEND believe solution lies in a Council Recommendation urging use of best practice Only by acting together will we begin to have an impact on the diabetes pandemic

  12. Towards EU Policy on Diabetes 2004 2005 2006 2007 2008 Otocec Declaration (Nov 2004) Austrian Presidency Conclusions (June 2006) Commission Action ???? European Parliament Written Declaration (April 2006) UN Resolution on Diabetes (Dec 2006) Irish Presidency Conclusions (2004) • . • . • . • . COMMISSION Stakeholders Parliament Council UN

  13. Coming soon – The 2008 Diabetes EU Policy Audit

  14. Report Funding This research was carried out by Burson-Marsteller Brussels, an EU public affairs consultancy, on behalf of IDF-Europe and FEND. The work was supported by unrestricted educational grants from Eli Lilly, Novartis, Pfizer and Roche. The project has been carried out with full transparency and independently from its funding sources.

  15. EU DiabetesWorking Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  16. Living with diabetes in Europe – a Romanian perspective - EU DiabetesWorking Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  17. Some thirty years ago I felt very unlucky when the doctors told me that I have diabetes; • My parents were unlucky enough not to receive any peer support – so they carried their feeling of “guilt” to their last day. EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  18. Looking back, now I feel that I was also lucky: • …because Romania has a long time tradition in treating diabetes, and I was correctly diagnosed and the best available treatment was offered to me; • …because over the years quality medication and specialized services were available and supported by the Romanian health system; • …because I was offered in due time one of the most comprehensive training programs, that kept me out of a hospital for 25 years; EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  19. Looking back … I felt lucky: • …because I could finish my education, get hired and appreciated for my performance - not judged through my condition; • …because I could establish a family and my condition is not perceived as a burden; • …because I can today to have a dynamic life style – the kind I like to have; EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  20. I am saying all these because: • …not all the Romanians and Europeans with diabetes receive tailored and continuous training to manage their diabetes; • …people with diabetes do not have equal access to medication to fit their life style or specialized health services; EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  21. I am saying all these because: • …even today people with diabetes do not have equal opportunities in following their careers, establish families or drive their own cars; • …even today family members have to leave their careers to support some family member with diabetes; • …even today children are refused access to the public education system because they have diabetes. EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  22. What might be needed • Improved awareness and prevention programs; correct and responsible food labeling; • Public support for coherent tailored training programs for people with diabetes; • Continuous support for equal access to medication and medical services; enforce informed-decision making; treatment should match individual condition and life style; • Enforce equal opportunities for education and employment; access to acquiring driving licenses. EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  23. Romania – alarming figures • Romania has 22,000,000 inhabitants and about 600,500 people with diabetes (in 2006 the Romanian Ministry of Health recorded 511,899 persons with diabetes - 2.37% prevalence); • A recent screening program (2008) revealed that out of about 8 million people, 30% have or might soon develop diabetes! EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  24. EU DiabetesWorking Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  25. 100% coverage in France for insulin, pump therapy & glucose meters Free follow up with education nurses, dietician, psychologist No expense advance in France A “Prestataire” (services company) is taking care of the pump maintenance and disposables associated in France Cost are not 100% fully covered in Luxemburg Quality of the patient’s life is not an essential criteria in F & L Low rate of pump therapy in F & L Difficulties to access to latest technologies (continuous glucose monitoring…) Impossibility to have a private medical insurance cover in Lux. Carla Duval Diabetes care in National Healthcare Systems EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  26. EU DiabetesWorking Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  27. DIABETES HEALTH CARE IN SLOVENIA

  28. Vlasta Gjura Kaloper, MD Slovenian Diabetes Association, Slovenian Patients Forum Has diabetes Type 1 since 1985 with consequent complications arising from this disease Has been actively participating in improving the quality of life of people with diabetes and raising public awareness last 15 years EU DiabetesWorking Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  29. Positive sides of Health Care for people with Diabetes in Slovenia Provided by government: • Free health care for all people, stemming from the compulsory health insurance (patient care service at GPs, specialist diabetologists and other specialists; free medications for treating diabetes; medical technical aid for managing diabetes for people with diabetes Type1) • Initial education for new diabetes patients Provided by non-governmental organisations: • NGOs (SLODA, Diabetes Education Institute) provide continuous informing and education, promote physical activity through athletic events, organise interdisciplinary conferences on diabetes for all who are involved in diabetes health care, etc. EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  30. Deficiencies in Health Care for people with Diabetes in Slovenia • Lack of statistical data on the quality of health care for people with diabetes in Slovenia • Slovenia still does not have a national programme for diabetes health care • The abovementioned results in the lack of rational planning of what our health care will be like in the future • There is no systematic and continued education of people with diabetes EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  31. Slovenia in pictures

  32. EU DiabetesWorking Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  33. João Nabais Good / Positive National Program for the Diabetes Prevention and Control New Portuguese Diabetes Association Podology Nutrition Courses Diabetes consultation Physical activity Psychology Education Ophtalmology EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  34. João Nabais Bad / Negative Primary Care Hospital Care Ophtalmology Podology Acute diseases Difficult reimbursement for new therapies Insulin Pumps Chronic diseases EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  35. EU DiabetesWorking Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  36. Lagrange Simon (Belgium, Flanders – VDV) 12-Mar-14 EU DiabetesWorking Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide EU DiabetesWorking Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide 36

  37. Introducing myself Lagrange Simon Age: 22 Diabetes type 1 since may 1996 (12 years) Student (master nursing) 12-Mar-14 EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide 37

  38. Short reflections about national diabetes care Negative Limitations about Drivers licence Limitations in getting pump-therapy Positive Preventive care Highly professional (university hospital) 12-Mar-14 EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide 38

  39. EU DiabetesWorking Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  40. EU DiabetesWorking Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  41. Gaston Dakulovic • Age: 62 • Profession: magazines editor - events organizer (salon du diabète) • Type 2 diabetessince: 2007 (1 year) • Medical treatment: insuline www.gdi.be EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  42. Gaston Dakulovic Diabetes care in Belgium Prevention: - Press / Media info - Salon du diabète (1 x 3 years) Treatment: - Regular medical check-up and follow-up diabetes - dieet - feet - eyes - kidneys - Good level of the intervention of the state in costs Escort: - Regular and general information from the associations (ABD & VDV) EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  43. EU DiabetesWorking Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  44. Diabetes in Malta Chris J. Delicata, Vice-President IDF-Europe Vice-President, Maltese Diabetes Association EU DiabetesWorking Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  45. Why did I get involved in Diabetes…..my story • Eldest son was diagnosed with Type 1 Diabetes in 1999 aged 1. • Active in the local association since 2001. • Elected as board member of IDF-Europe in 2003. • Re-Elected in IDF Europe Board in 2006 and appointed Treasurer. EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  46. Why did I get involved in Diabetes…..my story • In 2007, appointed Vice-President of IDF-Europe • 2007 to date: member of the IDF Global Executive Board • Son, now aged 10, diagnosed also with Celiac Condition in 2007. • Profession: Senior Underwriting Manager with a leading insurance company in Malta. EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  47. Population of circa 400,000 persons. Independent state and member of the EU since 2004. Statistics show that around 10% of the population have diabetes. In Malta Diabetes is often referred to as the ‘National Disease’ Malta – Some Statistics EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  48. Diabetes in Malta – Local Patient Association • Maltese Diabetes Association • Non govermental non-profit organisation • Founded in 1981 • Circa 1,000 members • Committee members are led by Ms Anna Zammit McKeon as President, Chris Delicata as Vice-president and 4 other members. • Excellent relationships with the Diabetes & Endocrine Centre at Mater Dei Hospital, newly built state of the art hospital in Malta. • Website: www.diabetesmalta.org EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  49. Government Achievements in Diabetes during Past years • Free blood glucose strips for persons with Type 1 Diabetes up to the age of 36. • Pharmacy of your choice • Introduction of new Insulins on the market (Glargin) EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

  50. The Improvements we would like to see to ensure better Diabetes Management & prevention in Malta • National Diabetes Programme for Diabetes • More Educational facilities at Mater Dei (Diabetes & Endocrine Centre) including psychological support for patients and parents • More dieticians - only one available for the whole hospital • At the moment patients on the new insulins have to inject using the syringes. We have been promised that the change to pen is imminent (already approved) but still awaiting implementation. • More use of Insulin Pumps subsidised by the Government EU Diabetes Working Group Meeting - Brussels, 15 July 2008 IDF | Promoting diabetes care, prevention and a cure worldwide

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