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In this issue
WDD 2011 On the EU health agenda Meetings and conferences From our members.
Diabetes in the limelight … from different perspectives! Dear Colleagues and friends,
Important dates to remember Friday 2 December (AM) IDF Europe General Assembly (PM) IDF Member Association Consultation Meeting S t o r i e s
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Saturday 3 December IDF Global General Assembly & Elections
Please ensure that you have registered the delegates from your Member Associations for the above meetings. If in doubt, or should you require additional information, please contact Lala Rabemananjara at lalal@idf-europe.org
Over the past few months it was very encouraging to see our Region active in various initiatives and activities that literally continued to put diabetes in the limelight! European Citizens Award Through this newsletter, I wish to express my immense appreciation to all those who send me their personal best wishes and congratulations following my conferment of the European Citizens Prize by the European Parliament last July. I feel honoured and privileged to have been selected for this award. However as I had the opportunity to say in my acceptance speech at the ceremony, this is a big achievement for IDF Europe and more importantly for diabetes. I share this prize with the millions of persons living with diabetes across Europe and beyond. I assure you of my continued commitment to work wholeheartedly to fight this growing epidemic.
Sir Michael Hirst represented the IDF leadership at this ceremony. On the far right is Simon Busuttil MEP who nominated Chris Delicata for the Prize and who officiated on behalf of the President of the European parliament Jersy Buzek.
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First European Summer Camp – what’s new? The first European Summer Camp held in Rogla was a huge success. The aim of the camp was to involve young people with diabetes in European level advocacy and communication initiatives. It is hoped that such initiatives will help nurture a new generation of youth advocates who could later play leading roles within IDF Europe. We are in regular contact with the youth participants, many of which have developed advocacy projects that they hope to implement in cooperation with their member association. Outstanding participants have been invited to apply for the Young Leaders in Diabetes programme in Dubai and to contribute to certain public events organized by IDF Europe on the occasion of World Diabetes Day in the European Parliament and the Council of Europe. I wish to express my sincere gratitude to Lex Herrebrugh who volunteered to act as the Camp Co-Ordinator; Staff at the IDF Europe Regional Office in Brussels, board members and volunteers who all gave their enormous contribution to ensure this event is indeed a success. 5th Edition of the Junior Diabetes Cup For the fifth consecutive year, IDF Europe supported the Junior Diabetes Cup organised by Medtronic in Geneva, Switzerland. This tournament brought together around 120 youths and children living with diabetes. I had the privilege to attend this event and wa t c h hi g hl y e nt hus i a s t i c a nd passionate children and youths with diabetes playing their favourite sport – football! In the opening speech I described these youngsters as ‘Diabetes Champions’. And indeed they were! IDF Europe also presented two trophies for ‘Sportsmanship and Teamwork’ on behalf of IDF Europe.
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UN Summit on Non Communicable Diseases in New York The UN summit was an extraordinary experience that brought together World Leaders to discuss Non Communicable Diseases. I was delighted to form part of the IDF delegation at this high level meeting which was also attended by other leading NGO’s. The final Political Declaration of the UN General Assembly can be found in the UN summit report: www.idf.org/advocacy/UN-summit-NCDs We now need to look beyond the Summit and ensure that diabetes remains a leading health priority on the global health agenda. We must all, collectively, play our parts - on a national, regional and global level. In concluding, I look forward to welcoming all of you in Dubai for our Annual General Assembly on the 2nd December and for the IDF Global General Council on the 3rd December and the World Diabetes Congress. I hope to have the opportunity to meet you all. With my very best wishes, Chris J. Delicata President IDF Europe
World Diabetes Day 2011 This year’s theme is “Education and Prevention” and the main message is “ACT ON DIABETES. NOW”. There are several materials you may use during your WDD campaign: posters, the WDD book, WDD logos, WDD leaflets, web banners, and videos. These materials are posted on the IDF and IDF Europe sites. Inspired by the participants in our first International Youth Camp, IDF Europe launched a new series of posters that are now available on the IDF Europe web page. On 14 November IDF will officially launch the 5th edition of the Diabetes Atlas, that will be available in electronic and printed formats. On 15 November, IDF Europe will launch the third edition of the “Policy Puzzle” (status of national programmes or policies regarding diabetes, and access to diabetes medication and health services), this time including all the European countries. Share your WDD experience by uploading pictures on http://www.idf.org/flickr/submit, or inform IDF about the monuments that will be light in blue in your country by sending an email to wdd@idf.org We look forward to disseminating your stories and pictures in the next issue of our newsletter.
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On the EU health agenda
Call for urgent development of an EU strategy on diabetes During a meeting of the EU Diabetes Working Group of the European Parliament (EUDWG), on national diabetes plans chaired by senior UK Liberal Democrat and member of the EUDWG MEP Sarah Ludford the EU was urged to develop an EU strategy on diabetes. MEP Ludford called on the EU to deal with the epidemic increase of the chronic debilitating disease and to focus spending on prevention and research for a cure as well as on improving treatment. Speaking ahead of a meeting of the EU Diabetes Working Group in the European Parliament, MEP Sarah Ludford said: "Diabetes is set to be the single biggest health challenge of this century. But governments' response is not matching in urgency the huge impact of this disease on individuals, families and health costs. Diabetes seems to get overlooked compared to cancer or heart disease." "People with diabetes often suffer stigma from an assumption that a change of lifestyle would sort them out. This simplistic view which ignores genetic and other factors means action is lagging behind need. Tiny babies with Type 1 diabetes have not acquired it from failing to diet! " "Given the costs of research and development of new treatment methods, we must cooperate at EU level and share best practices through an EU strategy which hopefully will be devised during the 2012 Danish presidency of the EU." Ms Ludford has been active on the issue of diabetes care and prevention for many years. She currently co-chairs the EU Diabetes Working Group, a collaboration between MEPs and a network of diabetes organizations grouped in the European Coalition for Diabetes (ECD). The next EUDWG meeting will be held on 22 November and will look at depression and diabetes in children.
EU Parliament Resolution on NCDs On 12 September the European Parliament voted a resolution that calls on the European Commission and Member States to actively support and implement the UN Political Declaration. The resolution (B70488/2011) indicates the major areas of intervention: addressing major health determinants like (e.g. smoking and alcohol abuse), promoting the increase of physical activity, reducing the consumption of salt, sugar, saturated and trans fats, increasing monitoring of morbidity and mortality due to non communicable diseases, establishment of new ways to ensure the funding and implementation of these recommendations, scaling up primary prevention, research, early diagnosis and effective management of NCDs, expand the integrated and holistic patient centred approach to health services, developing clear protocols and evidence based guidelines for specialist and primary care practices that treat chronic diseases, and focused education programmes for specialists. The resolution also calls for a EU strategy on chronic diseases followed by a Council recommendation with individual sections for the main chronic diseases (cardio vascular, cancer, diabetes, and respiratory). It calls the Member States to develop and implement National Programmes in particular on the most common four chronic diseases. The European Commission is urged to monitor the process and reporting on the progress of National Programmes development and implementation as well as facilitating centralized data collection on the major chronic diseases across Europe. The review of the implementation of the UN Political Declaration will be carried out by 2014.
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On the EU health agenda
Empowering the patients The European Commission adopted revised proposals clarifying the information that industry can supply to the public on prescription-only medicines. Patients are increasingly interested in learning more about the medicines they take and want more of a say in how they are treated. At the same time, patients are confronted with a growing volume of information from various sources and often find it difficult to identify reliable information about medicines. The increased use of the internet over recent years makes the need for clarity even more important. Online information on medicines must be accurate and reliable. In its revised proposals, the Commission amends its original proposals of 2008 and responds to requests from the European Parliament. The proposals maintain the current advertising ban on the prescription-only medicines and foresee that: a) b)
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Only certain information on prescription-only medicines would be allowed. For example, information on the label and on the packaging leaflets; information on prices; on clinical trials; or on instructions for use; Information on prescription-only medicines would only be allowed through limited channels of communication. For example, information on officially registered internet websites; or printed information made available when specifically requested by members of the public. A publication in general print media will not be permitted; The information must fulfil recognised quality criteria. For example, it must be unbiased; it must meet the needs and expectations of patients; it must be evidence-based, factually correct and not misleading; and it must be understandable; As a general principle, information which has not been approved before needs to be verified by competent authorities prior to its dissemination.
Revising these proposals has also been an opportune moment to further strengthen the current system for monitoring the safety of medicines (known as the pharmacovigilance system) in the European Union. John Dalli, European Commissioner for Health and Consumer Policy , said: "The revised proposals put rights, interests and safety of patients first. They oblige industry to provide certain key information to patients and set clear rules for additional, voluntary information on prescription medicines. In addition, they further strengthen the control of authorised medicines." Next steps: The revised proposals will now be debated by both the European Parliament and the Council of Ministers.
Food Labelling IDF Europe welcomes the adoption of the Regulation of the European Parliament and of the Council on the provision of food information to consumers (also known as “food labelling�), approved by the Council on 12 September 2011. This is an important breakthrough for people living with diabetes as it paves the way for better information. While still a document that will accept improvements, the recent regulation concludes a process that started three years ago and opens a new approach to a unified system of food information for consumers. You may find the text of the adopted regulation, a briefing on the text relevant to persons with diabetes, and the IDF Europe position paper on our site.
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EU funded projects
EuRythDia Evidence has accumulated in recent years that a disruption of the daily sleep-wake pattern (the socalled circadian clock) promotes the development of type 2 diabetes and the metabolic syndrome. Epidemiologists found that night shift workers have a 4-fold increased risk of developing type 2 diabetes in a 4 years follow-up study. This adds to experimental evidence that mice in which the circadian clock gene has been experimentally disrupted become obese and develop symptoms of diabetes. 16 academic and industrial research groups from Europe have now received funding from the European Commission to investigate this relationship further in the next five years. The project “EuRhythDia” is funded by nearly 6 million EUR to study in night shift workers, prediabetic subjects and in animal models whether there is causal relationship between disrupted circadian clock and diabetes, and whether lifestyle intervention to reset the clock may result in improved glucose metabolism. The studies will involve timed light therapy, timed physical exercise, and melatonin treatment as interventions to reset the inner clocks. On October 24 and 25, the EuRhythDia group convened for a two day meeting in Hamburg, Germany, to initiate the planned studies. The researchers expect to generate important novel data on the pathogenesis of type 2 diabetes and the metabolic syndrome within the next five years that will change the European public`s approach to lifestyle intervention of metabolic diseases. The Coordinating Investigator for this project is Professor Dr Rainer Böger. IDF Europe is partner in this EU funded project and is responsible for developing and implementing the dissemination strategy.
Policy Puzzle launch in the European Parliament The third edition of the Policy Puzzle will be launched on 15 November during an event organized in the European Parliament. This is the first edition when all the European countries are included in the study. For each country data was collected from different sources (Ministry of Health, professional organizations, patient organizations, or IDF Europe reports) as well as from the latest edition of the IDF Diabetes Atlas. The Policy Puzzle is a project supported by FEND, EURADIA, IDF Europe, and PCDE and it was possible with the active participation of the Diabetes Associations across Europe. The third edition will be available in electronic format and hard copy.
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IDF Europe new posters IDF Europe is pleased to launch a series of posters, based on the IDF Europe Youth Camp which took place in July 2011 in Rogla, Slovenia. The huge success of the Summer camp and the photos taken during this time were used as inspiration for the creation of these posters. The youth advocates who attended the camp were inspiring as well as motivating. The posters aim to convey the sense of enthusiastic, dynamic, communicative and interactive sessions and activities which took place during the camp. The ‘Women and diabetes’ poster highlights issues such as discrimination and access to medication and to care. The ‘Diabetes awareness’ poster aims to target the general public and those at risk with the use of a number of relevant questions. The ‘10 tips for a happy and healthy lifestyle’ poster brings together some of the ideas of the participants to the summer camp for a positive approach. You may download these posters for printing or for presentations from the IDF Europe site (www.idf-europe.org).
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Meetings and congresses
EASD 2011 This year’s EASD Congress was hosted in Lisbon, Portugal. The organizers reported a very high participation rate (about 17,500 registered participants from 127 countries). The Congress was marked by the advent of the UN Summit on NCDs and by the new IDF Diabetes Atlas figures that were released in advance. These figures confirm that the diabetes epidemic continues to worsen. Data from global studies demonstrate that the number of people with diabetes in 2011 has reached a staggering 366 million, 4.6 million deaths are due to diabetes and health care spending on diabetes has reached 465 billion USD. The Congress was articulated around professional sessions, the association village, the pharmaceutical industry exhibition, and a good number of parallel sessions focused on professional and organizational topics. 20 organizations from Europe, the middle East and America were present in the association village. Webcasts and abstracts of the scientific presentations are offered on the EASD site (www.easd.org). The IDF Europe booth presented the results of the Image project (the Diabetes Prevention toolkit), brief information about our activities in 2011 and advance warning about the third edition of the European Diabetes Audit: the Policy Puzzle (to be launched on 15 November in an event in the European Parliament).
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Meetings and congresses
The 14th European Health Forum Gastein The European Health Forum Gastein (EHFG) is the most important health policy event in the European Union. Leading experts from business and industry, science and academia, patient organisations/NGOs as well as numerous prominent decision makers in health policy presented new ideas and used the EHFG as a platform for the exchange of experiences and opinions at the international level. A major feature of the European Health Forum Gastein is its broad range of topics: issues such as the challenge of ageing societies are just as current as topics like an increasing migration within the health professions. Thus, the EHFG is a meeting place for experts from different sections of the health system and is fundamentally different from events which are specialised in highly restricted areas. This years’ meeting encompassed topics like Health Security, Lessons from the East, Active and Healthy Ageing, Non Communicable Diseases, Medical Innovation, eHealth, HTA, the Future of Medicine, Health 2020, etc. IDF Europe was asked to make a presentation of the Active and Healthy Ageing—Innovative Partnership initiated by the EU Commission. IDF Europe was represented in the meetings by Ms Annemarie Bevers, member of the board.
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From our members
Kazakhstan Improved diabetes schools The Diabetes Association of the Republic of Kazakhstan (DARK) is constantly working to educate persons with diabetes on how to best manage their condition. The first diabetes school was established in 1995 with the support of the Soros Foundation of Kazakhstan. The school was coordinated by DARK in Almaty. The results of the project were communicated to the Ministry of Health of the Republic of Kazakhstan which issued regulation no 309 (02.07.1996) regarding the “Establishment of the system of diabetes patients education”. Kazakhstan”. The new project brings changes to the structure, methodology, standards, directions, and guidelines of organizing diabetes schools in accordance with the international experience. The program is supported by IDF Europe and pharmaceutical companies: Roche, Abbott, Bio Rad, Lilly, Life-scan, Novo Nordisk, and Sanofi.
Insulin pump therapy for children In 2011 a pilot program was started in Kazakhstan to provide insulin pumps and consumables for children up to 10 years old in the cities Astana and Almaty. The programme is funded by the state budget. In spite of all the efforts proper diabetes schools are not yet established in the Republic of Kazakhstan. Unfortunately, existing schools are only providing information without the purpose of changing skills and attitudes of the persons with diabetes; none of the existing education programmes match international standards. There are still no trainers for teaching in these programmes. The lack of diabetes education as well as the limited time medical professionals can dedicate to each person with diabetes is reflected in the very high percentage of persons that are registered out of balance in the city of Almaty (91.5%). After assessing the existing situation the Ministry of Health has started a project in cooperation with Diabetes Association of the Republic of Kazakhstan: “Salamatty the
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This initiative was developed because the highest number of new cases of type 1
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diabetes was registered in the age group of under 10. It is also the period when compensation of diabetes is very hard to reach. In the same time most of the families cannot afford to buy an insulin pump and needed consumables. The Diabetes Association of the Republic of Kazakhstan has applied for funding to the Ministry of Health bringing economic and social evidence about the necessity and potential benefits of using insulin pump therapy in Kazakhstan. The Ministry of Health agreed to support a pilot project in Astana and Almaty. The reason for choosing these two locations is related to the number of cases and the presence of specialists that are knowledgeable about pump therapy. The specialists in Astana and Almaty are currently selecting now the candidates for the pilot programme on the basis of questionnaires and interviews. While the procurement procedure has started, the specialists from the other regions are also trained in using insulin pumps. Press Conference During the press conference that followed a round table in Astana, DARK expressed its opposition to the existing public tender process. At present a single provider of insulin is selected and this results in the procurement of low quality insulin delivery systems and blood glucose meters. “We have the right to protect our health and quality of life. We are protesting against ‘saving money’ at the expense of our own lives.” The protest was supported by the medical professionals, politicians and the civil society.
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From our members
The Netherlands - NDF One of the Netherlands Diabetes Federation’s projects which started in September, is “Diagnosis Diabetes 2025; scenarios for the future of diabetes care”. In this project main topics and leading trends concerning diabetes, will be collected for developing various scenarios for an affordable health care system, in which quality of care and prevention of diabetes are the leading principles. The project gives a boost to the strategic discussion on the future of diabetes care and prevention in the Netherlands. A discussion which is vital to prepare and equip the diabetes sector for the changes that are ahead in this sector in the coming years. The main factors of concern are the increasing number of patients with or at high risk for developing diabetes and the constantly rising costs of care. The end result will be presented in a book entitled “Diagnosis Diabetes 2025” which will be launched during the Dutch Diabetes Conference on the 30 March 2012. This book can also be the starting point for comparable strategic discussions in and with other European countries. For more information: i.deweerdt@diabetesfederatie.nl The Netherlands Diabetes Federation (NDF) is an umbrella association of organisations aimed at care for people with diabetes. It unites both care providers, scientists and people with diabetes.
The Netherlands - DDA Online services to people with diabetes The Dutch Diabetes Association is expanding its online presence. In addition to their web site, they also have a Twitter account (@DiabetesNL), a Facebook Fanpage and staff can be found on LinkedIn. In parallel their patient portal ‘MijnZorgpagina.nl’ (a personalized website on individual diabetes care) is expanding rapidly. In October, they signed a partnership with the Dutch pharmacy organization KNMP. The portal will now host information on medication and contain a link to the pharmacy website: www.apotheek.nl. This means that the website will soon offer information about insulin, many other medicines and locations of pharmacies nearby. You can find the website here, in Dutch: www.mijnzorgpagina.nl
Maarten Ploeg of the DDA and Jan Smits of KNMP sign the papers to start the cooperation between MijnZorgpagina.nl and apotheek.nl
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Ukraine Fund raising for children with type 1 This year a huge step was made in Ukraine to help the children with diabetes. Kyiv Charitable Foundation "Diabetic", member of the International Diabetes Association of Ukraine (IDAU), took an active part in the events of All-Ukrainian Charitable Foundation "From heart to heart" in order to raise funds for the purchase of insulin pumps for children with diabetes. As a result 368,430 EUR were donated. All participants of this charitable action are happy for this great success that helped purchase 140 insulin pumps and 6 continuous glucose monitoring systems for the Endocrinology Children's Hospitals. Over several months IDAU volunteers, including children, young people with diabetes and their parents, and adults with diabetes collected money in the "volunteer box". During the final day of the campaign, held on 15 May 2011, IDAU organized a screening event in Kyiv . On this occasion, out of 756 persons tested 22 were found with elevated blood glucose (approx. 3%). The action "From heart to heart" was also a support for the development of volunteerism in Ukraine. Summer camps for our children The Luhansk Regional Society of People with Diabetes organized a therapeutic summer camp in the children rehabilitation centre "Forest Song". The rehabilitation centre offers good natural spa conditions for children of all ages. During the camp children were provided with special diet and medical assistance from highly qualified professionals: Professor Oleksandr M. Prystupiuk and Professor Marianna I. Naumova. The programme of the camp included diabetes education sessions for proper use of self management of diabetes. All children had individual means of glycaemic control and they learned how to assess and react in order to keep good diabetes compensation levels. Another item on the agenda was psychological support and education aimed to overcoming the teenagers’ negative reaction to intensive diabetes treatment. Special sessions were dedicated to healthier lifestyles. Smoking is an alarmingly growing problem among the teenage population. In the present conditions smoking is regarded by (continued on page 14) the
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many as an easy (and still cheap) way to boost their personal image among peers. Boys are more open smokers, while girls often carefully hide their addiction. The catastrophic effects of smoking on health and environment were clearly explained. In another activity, the Kyiv Public Fund "Diabetic" organized a children camp at the Black Sea, near the city of Odessa, in the children's centre "Zolotaia Gvardia". The professional support was ensured by endocrinologist Natalya P. Tertychnaia. The education agenda was complemented with different interesting outdoor and indoor activities: swimming, beach games, dance, trips, etc. In all these programmes, the most important element was that the children found themselves members of a bigger and friendly family with an atmosphere of mutual help, kindness and understanding, and surrounded by love and care equal to what they see at home. Diabetes did not prevent children from harmoniously integrating into the camp regime and becoming participants in many sports. They relaxed, learned, shared, got many beautiful experiences and found new friends. At this age, it is only natural for children to aim for self-realization and increase their selfconfidence. Children with diabetes do not want to be seen differently from their peers without diabetes. They actively participate in sports, all kinds of recreational activities, dances, joked and played pranks, and pushed “disease� at the periphery of their minds. The desire for a normal life could be seen in every action of these children.
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Focus on a Member Association
The Croatian Diabetes Association The Croatian Diabetes Association (CDA) was established in 1954. It is an umbrella organization for 45 local diabetes associations from Croatia. CDA is member of the International Diabetes Federation since 1955. This membership contributes to improved management and quality services for our 45 members. It is appreciated that the international contacts, especially on regional level as the ones supported by IDF Europe, help the Croatian Diabetes Association to enhance and enrich its activities using innovation, information and best practices applicable to our country.
The association organizes on a regular basis summer camps for children and youths. At the beginning of 2012, there will be organized the first international winter camp where young people from all over the Croatia will meet peers from Italy. Every two months, the CDA is publishing a diabetes magazine which is printed in 30,000 copies. Diabetes books and manuals are also edited and printed .
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The Croatian Diabetes Association
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So far, there were organized 10 annual congresses for people with diabetes in Republic of Croatia, 7 sports competitions for people with diabetes, and 4 meetings of children and youths with diabetes which were attended by more than 500 participants. As diabetes education is essential for a good balance and development of any person with diabetes, CDA organizes different training sessions and workshops for the young beneficiaries. These events are prepared and delivered in coordination with the local associations. Every year, CDA celebrates the World Diabetes Day organizing different public events: measuring blood glucose levels, outdoor activities, public forums and lectures in all our member associations. Croatian delegates are regular participants in the IDF Congresses and the EASD annual meetings. In its work the Croatian Diabetes Association is closely cooperating with the “Vuk Vrhovec” University clinic which is the Croatian Reference Centre for diabetes, with regional and county centres for diabetes, the Ministry of Health and Social Welfare, the Government of the Republic of Croatia, local Health Centres and Departments of Health, the Croatian National Institute of Public Health and the “Andrija Štampar” School of Public Health. Information about the CDA mission, work, activities and education for people with diabetes is offered on organization’s site: www.diabetes.hr that is constantly updated.
International Diabetes Federation - European Region Chaussée de La Hulpe, 166-C3 B-1170, Brussels, Belgium Phone: +32 25371889 Fax: +32 25371981 E-mail: newsletter@idf-europe.org the
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the european diabetes newsletter is an internal publication edited by IDF Europe using the contributions of the member organizations and collaborators. If you would like to contribute with articles or news to our newsletter please write to Cristian Andriciuc, External Relations Coordinator, cristian@idf-europe.org The next issue of the newsletter is planned to be ready at the end of January 2012. Please send your materials before 20 January 2012.