S t o r i e s i n s i d e

the european diabetes newsletter

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the european diabetes newsletter

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Dear Colleagues and friends,

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.

Diabetes in the limelight … from different perspectives!

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 parlia-

ment Jersy Buzek.

I n t h i s i s s u e

WDD 2011

On the EU

health agenda

Meetings and

conferences

From our

members.

Important dates

to remember

Friday 2 December

(AM) IDF Europe General Assembly

(PM) IDF Member Association Consultation

Meeting

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

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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

watch highly enthusiastic and 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.

Diabetes in the limelight … (continued from page 1)

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Diabetes in the limelight … (continued from page 2)

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

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.

World Diabetes Day 2011

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On the EU health agenda

EU Parliament Resolution on NCDs

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.

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 (B7-0488/2011) 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.

Call for urgent development of an EU strategy on diabetes

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Empowering the patients

On the EU health agenda

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) 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;

b) 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;

c) 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;

d) 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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Evidence has accumulated in recent years that a

disruption of the daily sleep-wake pattern (the so-

called 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.

EuRythDia

EU funded projects

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 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).

IDF Europe new posters

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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).

Meetings and congresses

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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.

The 14th European Health Forum Gastein

Meetings and congresses

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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”.

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

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. This initiative was developed because the highest number of new cases of type 1

From our members

Kazakhstan

(continued on page 11)

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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.

From our members

Kazakhstan (continued from page 10)

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The Netherlands - NDF

From our members

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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From our members

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

Ukraine

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Ukraine (continued from page 13)

From our members

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 self-

confidence. 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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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 .

Focus on a Member Association

The Croatian Diabetes Association

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Chaussée de La Hulpe, 166-C3

B-1170, Brussels, Belgium

Phone: +32 25371889

Fax: +32 25371981

E-mail: newsletter@idf-europe.org

International Diabetes Federation

- European Region

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.

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.

Focus on a Member Association

The Croatian Diabetes Association (continued from page 15)