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The IDF Europe board has a new approach to communication. Countries are facing different crisis economical, political or “just” environmental. We are looking if these situations are affecting the persons living with diabetes. The spring was full with meetings and health events. IDF Europe attended some of them.
Stories inside
From our members
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New National Diabetes Programmes
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Meetings and Congresses
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NCD Alliance
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The EU Plat11 form for Diet was evaluated
Reaching out to our Member Associations Dear Friends, In my introductory speech after being elected as your President in Montreal last October, I informed you that one of the priorities of the new board for this triennium is to reach out more to our member associations. We are working wholeheartedly on this as we feel this is an important aspect of our work. We have received overwhelming feedback and support on the new style of our newsletter which I hope will serve as a dynamic and effective communication tool between our Regional office in Brussels and our member associations spread across all over Europe.
that this contains useful resources and information. We however need your input too. You, as important representatives of the millions living with diabetes in Europe can contribute by giving us your constant feedback; ideas on what you expect from IDF Europe and above all what issues you feel we should address. We wish the intranet to be a live and dynamic communication tool that will break any barrier that existed in the communication between IDF Europe and our member associations.
I must congratulate and thank Cristian Andriciuc, our Editor and Annemarie Bevers, my colleague on the IDF Europe board who is ultimately responsible for communications and public relations within IDF Europe, for all their efforts in putting in place a comprehensive an interesting You are aware that over the past weeks piece of reading - our own Regional we placed an online voting system renewsletter! questing you to inform us what items we should address during the Work Shops for our forthcoming ‘Together we are The newsletter is not the only means Stronger’ meeting In Brussels next Noof communication – we have re- vember. We did receive feedback from all vamped our intranet site to ensure of you but there is definitely room for imthat this contains useful information provement. I urge you to take serious for your associations and the per- note of any requests we make to you to sons living with diabetes in your ensure that ultimately our activities are countries. We are trying to constantly what you really feel we should carry out. keep you updated with ‘breaking news’ items and issues we feel are relevant to you. We are also trying to IDF Europe represents you, our member update our Intranet site to ensure (continued on page 2)
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Reaching out to our Member Associations
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associations. You voice the feelings, frustrations, wishes of the millions living with diabetes over Europe. It is therefore important that the communication between IDF Europe and your member associations is responsive and ongoing. You will hear more about all this during our forthcoming General Assembly and ‘Together we are Stronger’ meeting which will be held in Brussels in the last weekend in November. The choice of Brussels as our venue coincides with the fact that Belgium hosts the EU Presidency in the 2nd half of 2010. I urge you to attend this annual important meeting which besides being an excellent networking opportunity allows us to discuss important aspects of Diabetes and related issues. I wish you and all your families Happy Summer holidays – I hope you get some well deserved rest with your families and friends. See you in Brussels next November. With kind regards,
Chris J Delicata President
Office news in brief
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The new Operational Plan for 2009—2012 is posted on our web site. You may download it from the Action Plans tag of our web site (www.idf-europe.org) or you may translate it in your preferred language using the tools offered by the Intranet (sign in for the Intranet and look at Resource Library—Office documents).
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The results of our survey regarding the provision of local laws concerning diabetes and the driving license are presented in the latest issues of Diabetes Voice (volume 55, issue 1) in an article written by João Valente Nabais, the IDF Europe President-Elect. You may read or download the article at www.diabetesvoice.org/en/articles/diabetes-at-the-wheel-–-the-need-for-safety -and-fairness-under-the-law
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IDF Europe was part of the team implementing the IMAGE Project. One of the results of the project is the Prevention Toolkit. It provides practical information for anyone ...
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From our members Setting up a national Diabetes registry in Austria
based interface will be designed for automatic data reporting. Personal data collection will be in accordance with the Austrian personal data protection Agency.
In Austria about 500.000 people are currently affected by diabetes. However this is only a rough estimate of the real number of patients as a structured registry is missing. The Ministry of Health has initiated a national diabetes registry for establishing a disease specific quality management system and a nationwide epidemiologic database.
The whole project was launched in the spring of 2009; at the moment the variables for data collection are being defined.
Evaluating outcome data and maintaining a high standard of care are the main aims of the registry. The participation is on a voluntary basis and all centre specific data are confidential. For establish this registry it is necessary to design a certain data capturing system which will collect data directly or indirectly via already working disease management programs like “Therapie aktiv�. Specific laboratory results should be extracted from the local data management system of every centre participating in the registry.
The Dutch Diabetes Association, with 60,000 members and potentially 750,000 patients as its stakeholders, is conducting a survey on diabetes care and how patients experience the care they receive.
The ministry of health will maintain a quality management system and all collected data will be made available for data analysis for the participating centres. A special web
Dutch Diabetes Association conducts national survey on diabetes care
The previous survey, conducted in 2008, focused on persons with type 2 diabetes. Now, the survey is meant for people with all types of diabetes. The results found in 2010 for diabetes type 2 will be compared with the 2008 results.
Maarten Ploeg, director, explains: “We have found a great need for further research on the Diabetes Care Standard that was adopted earlier by the caregivers. In 2008, we translated the formal and official texts for caregivers on type 2 diabetes to texts that patients could understand. Therefore it is interesting to see whether the persons with type 2 diabetes are experiencing a rise in quality of care. In 2008 we found that the diabetes related health services were not conducted properly, leading to fact that people with diabetes were exposed to unnecessary risks. The DDA will use the results of the present survey to further discuss quality of care with care givers and insurance companies. The DDA hopes that patients will use the results to claim proper diabetes care.
The survey can be found online: www.diabeteszorgmonitor.nl (in Dutch).
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Crisis backlash on diabetes Greece The economic crisis forced the Greek Government to take certain measures to decrease the governmental expenses. One of these measures is decreasing the level of compensation of all publicly supported medication by 25%. As a result, at the beginning of June, one of the pharmaceutical companies active in Greece decided to stop the distribution of certain products, and opened legal action. IDF and IDF Europe
were in contact with the local organizations and as a result IDF posted on the web a position paper asking for responsibility towards the persons with diabetes affected by the decision of the pharma company. Fortunately the company restarted distributing the diabetes medication. Please see the IDF position paper at www.idf.org/idf-statement -availability-insulin-greece
Kyrgyzstan In early April Kyrgyzstan was the scene of political unrest that led to the change of the team that manages the country. IDF Europe tried to contact the local organizations, the officials or any contacts in the country in order to find out if the political crisis is affecting the persons with diabetes. Communication channels did not function properly for quite a while but finally there were several responses to our messages: in a letter addressed to IDF and IDF Europe the new officials of the Ministry of Health give assurance that the political crisis did not affect the normal procedures of medication procurement. “…the health of the Kyrgyz population remains a priority and … the need remains to develop a comprehensive approach to fighting diabetes. … We hope that this plan [focussed on diabetes and develthe
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oped earlier this year with support from IDF, IIF and WHO] will be integrated into our new National Health Strategy to be developed during this year.”
In the same time we also received positive messages from the diabetes associations supporting the idea that the crisis does not have at this moment effects for the persons with diabetes from most of the country.
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From our members Poland On 29 May 2010, the Polish Diabetes Association organized a diabetes conference in Hajnowka, East Poland, entitled “The Polish Diabetes Association, medical corporations, and healthcare professionals fighting diabetes complications”. The conference was attended by more than 200 participants who had the opportunity to listen to several interesting lectures on new treatment methods, medication reimbursement and disease financing. During the breaks, the participants visited a fair with diabetes related products and had the opportunity to see, learn about or test some of the exhibitors’ latest products.
Austria: Steep rise in child diabetes requires new support structures The Austrian Diabetes Association presented in a press conference on 2 June in Vienna the latest diabetes incidence figures in children and adolescents. The number of new cases of children and adolescents with type 1 diabetes in 2008 doubled compared to 1999 and there are more and more young children under 5 years affected. The reasons for this are still unclear. The trend continues to be alarmingly rising. In the same period the incidence of type 2 diabetes mellitus in children remained rather constant. The present situation which often translates in the onset of life-threatening situations such as severe hypoglycemia or diabetic ketoacidosis, calls for the urgent expansion of health care structures for children with diabetes. The Austrian Association of Paediatric Diabetology and Endocrinology, under the chairmanship of Prof Dr Birgit Rami published updated guidelines in line with the ones in other European countries. The new structures require the establishment of multidisciplinary teams that should be
hosted in specialized paediatric centres. The new approach is also looking to the care of children with diabetes in school and in Kindergarten as it often represents a problem. School personnel fears to assume responsibilities with children with diabetes. This translates into situations when children with diabetes do not attend kindergarten, or are not allowed to participate in school events. A solution would be the use of more mobile nurses, but this usually fails because of the lack of financing. To support the implementation of this new programme, the Austrian Diabetes Association launched an awareness and a fund raising campaign. "We hope that [with the new intervention programme] we will be able to highly improve the diabetes care for children and young people," says lecturer Dr Raimund Weitgasser, president of the Austrian Diabetes Association. "The costs are marginal if compared to the savings they bring.”
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New National Diabetes Programmes The Netherlands The Ministry of Health, Welfare and Sport of the Netherlands awarded the Netherlands Diabetes Federation a grant to implement the NDAP. The project was initiated in 2009 and will be completed in 2013. The overall goal of the NDAP is to ensure a widespread use (90%) of a comprehensive and up-to-date Standard of Care for diabetes. To achieve this goal several activities will be implemented: the development of a comprehensive and up-to-date standard of care for diabetes, prevention, redefining the position of the
patient/client, improving quality of the service, management and knowledge, regulation and costing, and electronic data exchange and communication. It is foreseen that the outcome and experience might be used to trigger similar programmes in other chronic diseases areas.
In the next issue we will present more about some projects the Dutch Diabetes Association has developed under the National Diabetes Action Programme.
Slovenia This year Slovenia launched the National Diabetes Programme aimed to decrease the incidence of type 2 diabetes in the country. The process was outstanding due to its length as well as approach: it took about 15 years of negotiation and it involved all the possible stakeholders who may have any contribution to achieving the proposed goal. The contributors are specialists in diabetology, general practitioners, paediatricians, pharmacists, professional association of dietetics and nutritionists, the chamber of nursing (section of endocrinology), persons with diabetes, the public health division, the Health Insurance House of Slovenia, and the Ministry of Health. The group started to work being aware that
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the answer of the present health system is too slow for the continuously changing environment and that controlling diabetes is a challenge for the whole community. The programme was projected as a continuum of services in time and for different situations of the patient. The involvement and commitment of the stakeholders made that the programme can start and function without additional funding for at least two years. Each of the participants was assigned specific actions and targets as well as a timeline, an estimated budget, and indicators of success. As expected, the Slovenian Diabetes Association is a contributor and an implementer of this programme.
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Meetings and congresses DEPAC 11 DEPAC stands for Diabetes Experts Panel from Accessing Countries and brings together representatives of diabetes professionals and lay organizations from 12 countries that entered the EU in the last seven years.
and cross border initiatives. The participants are assuming certain responsibilities and are contributing to common projects agreed by the group (the DEPAC survey, the network of quality centres).
In March 2010 the 11th meeting of the DEPAC took place in Larnaca, Cyprus and consisted in one day and a half of discussions and presentations that highlighted: the status of diabetes related health services in Cyprus
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the role of the Cyprus Diabetes Association in lobbying the government
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how can be effectively used the results of a EU funded project BIRO/EUROBIRO, Mediterranean diet today
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camps for persons with diabetes – best practices
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the role of diabetes associations in the development
Mr Soteris Yiangou presenting the Cyprus Diabetes Association’s experience in diabetes camps
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implementation and monitoring of the National Diabetes Programmes
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access to media means of improving diabetes care safety issues related to modern insulins new initiatives at EU level, and
a review of the current activity lines of IDF Europe. The meeting was opened by local officials representing the Ministry of Health and the City Hall of Larnaca and was attended by the President of the IDF Europe, Mr Chris Delicata. To address all aspects of interest presented by the participants, the work was shared between plenary and split sessions (medical, non-medical). The format allows that the issues are discussed in depth by those who are directly facing them, while the plenary sessions are offering common ground for coordinated visions
The 6th World Congress on Prevention of Diabetes and its Complications Between 8 and 11 April the 6th World Congress on Prevention of Diabetes and its Complications ( WCPD 2010) took place in Dresden, Germany. This was the 6th congress in line focusing especially on diabetes prevention. The major theme of this congress was “Prevention in Practice”. Approximately 1.000 scientists, researchers and people interested in diabetes prevention practice, coming from 67 different countries, attended the congress. The scientific and practical aspects of how to implement diabetes prevention into clinical practice were discussed in 43 different sessions and workshops. As a summary of this congress a state of the art practice guideline accompanied by an evidence based guideline for the prevention of type 2 diabetes was issued. Furthermore more than 45 different pro(continued on page 8)
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Meetings and congresses The 6th Prevention Congress
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grams for diabetes prevention world wide were introduced and discussed. It was a great success to have such a small congress dedicated to this important topic in an environment where the people can meet, discuss and develop plans. The WCPD 2010 was the state of the art congress for diabetes prevention in practice.
prevention in a practical manner), the use and impact of networking (“Who is active in diabetes prevention”), prevention of type 1 diabetes, behaviour and lifestyle change, drugs in diabetes prevention, and diabetes prevention in developing countries.
Professor Jean-Claude Mbanya of the International Diabetes Federation gave an excellent opening address which set the scene and gave an historical perspective of what has become a global pandemic of diabetes. In a special workshop IDF addressed the issue of “How to identify those at risk globally?” The workshop aim was to develop a global strategy for risk assessments for those with type 2 diabetes risk. Prof Jaakko Tuomilehto The venue of the 6th World Congress on Prevention of Diabetes and Prof Steven Colagiuri initiand its Complications was the modern Congress Centre in Dresden ated this proposal and nearly all known researchers, who are working from a public health and epidemiolThe 8th EEC Summit of the ogical perspective to develop risk assessment concepts, took part. The International Diabetes Associations’ Diabetes Federation is starting a 2 years project to develop this global risk assessrepresentatives ment strategy for type 2 diabetes risk. The results will be presented at the World Diabe- The 8th summit of the representatives of the diabetes organizations in the Eastern Eurotes Congress in Dubai in 2011. pean Countries was held in Samarqand, Uzbekistan, between 16 and 18 April 2010. The meeting was attended by representatives of The several sections of the congress addiabetes associations from ten countries: dressed the theory and praxis of preven- Armenia, Azerbaijan, Belarus, Georgia, Kation via prevention parcour, new techzakhstan, Moldova, Russia, Turkmenistan, nologies for none invasive diabetes risk Ukraine, and Uzbekistan.
detection, the outcomes of the IMAGE Project (including its toolkit to address the
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Meetings and congresses The 8th EEC Summit of the Diabetes Associations’ representatives (continued from page 8) The board of IDF Europe was represented by Elena Shelestova and Alexander Mayorov. Special guests were Wim Wintjens and Prof Peter Schwartz.
The meeting was officially opened by several representatives of the Uzbek Ministry of Health and Samarqand officials. Health professionals and politicians acknowledged some of the main problems that the persons with diabetes in Uzbekistan are facing: low registration rate of the persons with diabetes, low priority of diabetes, little interest in securing the needed medication and proper access to health services for people with diabetes.
During the summit the participants discussed about the role of the diabetes associations in protecting the rights of the per-
sons with diabetes, the development, implementation and monitoring of the nationals diabetes programmes, new tools in diabetes prevention, the involvement in the monitoring and amending of public policies, and the premises to develop a common platform for patient education in the region. Each of the participants presented the latest issues their organizations are facing. A special interest was represented by the presence for the first time of representatives from Armenia and Turkmenistan, as well as the new perspective on primary prevention presented by Prof Peter Schwarz.
All the participants agreed to support a common resolution of the meeting that will basically urge the government of Uzbekistan to properly address the issues of diabetes. It was also agreed that all the countries should make use of the best practices developed by any of the member countries and if possible to use similar tools in addressing patient education and diabetes prevention activities.
Participants to the 11th EEC meeting in Samarqand
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The NCD Alliance The Non Communicable Diseases (NCD) Alliance is an informal alliance of four international federations representing the four main NCDs outlined in the World Health Organization’s 2008-2013 Action Plan for NCDs – cardiovascular disease, diabetes, cancer, and chronic respiratory disease. These conditions share common risk factors (including tobacco use, physical inactivity and unhealthy diets) and also share common solutions, which provide a mutual platform for collaboration and joint advocacy. By working together from the global to the local level in an informal alliance representing nearly 900 national member associations, the alliance brings a united voice to the global campaign for non-communicable diseases.
The NCD Alliance uses targeted advocacy and outreach to ensure that NCDs are recognized as a major cause of poverty, a barrier to economic development and a global emergency. This is done by working with a wide range of partners and organizations, speaking with a united voice at key international meetings, and pressing governments to recognize that NCDs are a global development priority requiring an urgent response. The NCD Alliance has no official structure and is not a membership organization, but works with many partners that share a common interest in improving the lives of people living with NCDs and addressing their risk factors.
The Alliance was established in 2009. In May the NCD Alliance launched the successful campaign for a United Nations General Assembly Summit on NonCommunicable Diseases (NCDs). The UN Resolution calling for the Summit was unanimously passed by UN member states on 13 May 2010. The final resolution is available on the United Nations website (http://www.un.org/ga/64/ the
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resolutions.shtml)
IDF and the NCD Alliance ask for: •
An UN General Assembly on NCDs to raise the profile of diabetes and NCDs and increase political commitment;
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NCDs to be recognised as a development issue and as relevant for achievement of the Millennium Development Goals (MDGs). An NCD indicator to be added at the review of the MDGs;
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International funding to address NCDs for low and middle income countries (LMCs). The mandate of the Global Fund should be expanded to include NCDs;
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NCDs should be integrated into existing programmes, particularly at primary health care level.
Extensive consultations will be required to define the key tasks of the NCD community and ensure that the meeting produces concrete outcomes. Further research will be required in order to estimate the costs of the national interventions needed to successfully address NCDs in LMCs. It will also be critical to ensure that NCD interventions contribute to health systems strengthening within a horizontal rather than a vertical funding approach. News about the activities of the NCD Alliance are posted on www.ncdalliance.org
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The European Chronic Diseases Alliance In Europe, 10 not-for-profit science-based European organisations, representing over 100,000 health professionals, have joined forces to reverse the rise in chronic noncommunicable diseases. The Alliance puts the case for immediate political action at European level, as chronic non-communicable diseases affect more than a third of the population of Europe – over 100 million citizens. The evidence is overwhelming for tackling the four major risk factors: tobacco, poor nutrition, lack of physical activity and alcohol. In June the Chronic Diseases Alliance presented a document to John Dalli, the EU Commissioner for Health and Consumer Policy setting out their strategy for tackling chronic diseases. The press release was posted on our intranet. You can also see there the content of the document forwarded to the EU Commission. A web page of the alliance will be soon open for the public.
The EU Platform for Diet, Physical Activity and Health was evaluated A comprehensive evaluation report covering the first five years of the European Commission's Platform for Action on Diet, Physical Activity and Health has pinpointed the effectiveness of the platform tool as well as the divisions between not-for-profit and industry members.
The report acknowledges that it is too early to tell whether the Platform has been successful in its global objective, namely to "contain or reverse the trend of sustained, acute EU-wide increase in overweight or obesity".
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Instead it looks at whether the Platform has met the three specific objectives that flow from that - to provide a common forum for exchange among stakeholders, generate specific actions in key areas and produce evidence and know-how through monitoring.
Although the report says that, "the Platform has also led to a better understanding among members from different sectors, notably through a dialogue that has become more constructive and less confrontational over the years," it also recognises "there is still an element of confrontation between for -profit and not-for-profit members, and the enhanced understanding has not necessarily translated into greater trust."
The report underlines that a key difference between the Platform and other European or national fora is the focus on action to prevent it become a mere talking shop. Each member must sign up to at least one active commitment, which seeks to further the goals of the Platform. Then they must make sure they live up to that commitment, through action and independent monitoring.
Members have tabled a total of 292 commitments since the Platform's launch in 2005. The majority of actions fall within the 'Lifestyles and education' area, but the report says that a considerable number of commitments have also been made in the other three areas, namely marketing and advertising, reformulation, and labelling.
The report says that it is not possible to draw any definitive conclusions on the Platform's impact on policy at the European or national level, "but it appears to be very limited, as very few tangible examples of the Platform's impact on nutrition and physical activity (NPA) policy or other policy areas were found." As a result the report recommends that communication about the (continued on page 12)
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The EU Platform for Diet, Physical Activity and Health was evaluated (continued from page 11) Platform and its activities, as well as contact and cooperation with national authorities and national platforms, be increased.
The next steps that will be taken by the members of the Platform and the EU Commission will be discussed during the meeting in September. [from the eNews of the EU Commission]
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involved in healthcare and prevention activities for adults at risk of developing type 2 diabetes. This includes those working in primary and specialised healthcare services, physicians, physical activity experts, dieticians, nurses, and also others planning or already involved in diabetes prevention interventions (e.g. teachers, business partners). The IMAGE Toolkit for diabetes prevention also provides useful information for local and national politicians and health policy makers interested in creating an environment which facilitates healthy ageing and the implementation of the WHO recommendation that “we must make the healthy choice the easy choice.” One may find in the document how to budget and finance a prevention programme, how to identify people at risk, how to change behaviours, what are the risks, or how to evaluate a prevention programme. The document may be downloaded in electronic format from www.activeindiabetesprevention.com or hard copies may be requested from the office of IDF Europe.
Chaussée de La Hulpe, 166-C3 B-1170, Brussels, Belgium
“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 .
Phone: +32 25371889 Fax: +32 25371981 E-mail: newsletter@idf-europe.org
For comments or more information about IDF Europe activities please contact us at one of the address posted.
International Diabetes Federation - European Region
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