IDF Europe newsletter - October 2022

Shaping the next 100 years of diabetes

This month, on November 14, we celebrate World Diabetes Day (WDD), the world’s most important diabetes awareness campaign, which aims to bring diabetes in the public spotlight and on the political agenda. This year, the Centenary of the Discovery of Insulin represents a great opportunity not only to raise awareness of diabetes, but also to celebrate the milestones achieved in the past 100 years and to look at the future of diabetes by calling for greater political action to tackle the rising number of people living with diabetes (PwD) and the many inequalities in access to care and treatment that still persist across Europe. To do this, in collaboration with MEPs Mobilising for Diabetes (MMD), we have been gathering political support for a new European Parliament Diabetes Resolution which will be discussed during the November II plenary session in Strasbourg.

Since its discovery by Sir Frederick G. Banting, in 1922, insulin has saved millions of lives and is considered to be one of the greatest medical achievements of all time. Without insulin, people living with type 1 diabetes (T1D) will die and people with type 2 diabetes (T2D) on insulin therapy will develop life-threatening complications. Following the discovery of insulin, we have witnessed the development of an increasing and accelerating number of innovations, including new medicines, devices, technologies and digital solutions that have drastically improved the treatment and management of diabetes and, in turn, PwD’s quality of life. However, these have not yet succeeded in ensuring optimal health outcomes and quality of life for all. As the number of PwD continues to rise across Europe, access to insulin and associated supplies and technologies, diabetes medicines and devices as well as to diabetes care and education still remains inaccessible to some, and great inequalities persist, between and within countries, resulting in a heightened risk of developing diabetes-related complications and a shorter life expectancy for some PwD.

WDD 2022, the Centenary of Insulin and the call for a new Diabetes Resolution are now paving the way for greater focus on diabetes, better access to diabetes care and further research and innovation. Today, researchers are working on many innovative treatment and management solutions for diabetes, such as cell replacement therapy, sensors and long-term implantable devices for diabetes management, new insulin delivery mechanisms, and options to prevent and reverse diabetes. Any of these might become the next breakthrough defining the future of diabetes. Nevertheless, while scientific and technological research continue to progress, we should not forget that numerous tools, technologies and approaches already exist that can help prevent and better manage diabetes and diabetes-related complications, but are not used to their fullest potential as many PwD still do not have access to them. It is crucial not only to create new treatment models to improve the future of PwD, but also to improve access to and to scale up the use of existing innovations to reach as many people as possible. An innovation is not successful if it is not available to everyone who needs it.

Innovation in diabetes care does not just mean new technologies; It also means putting PwD at the centre of their care, improving the relationship with their healthcare professionals, facilitating peer-support and structured diabetes education, shifting from treating to preventing diabetes and its complications, re-organising healthcare systems, addressing the socio-economic determinants of health, and much more.

If we want to see all PwD achieve the best possible health outcomes and enjoy the highest possible quality of life, we need to start shaping the next 100 years of diabetes today, by ensuring that innovative tools, medicines, technologies and approaches for diabetes care are implemented and accessible to everyone who needs them and by supporting research that can deliver new solutions for the prevention, treatment and management of diabetes.

MMD ACTIVITIES

IDF Europe and MEPs Mobilising for Diabetes strongly welcome the European Parliament’s Recognition of the Need to act on Diabetes with a Diabetes Resolution on the provisional Agenda of the Nov II Plenary Session

On the centenary of the discovery of insulin, 10 years after the adoption of the first European Parliament Motion for Resolution, the diabetes community strongly welcomes the European Parliament’s recognition of the continuing urgency to act on diabetes through the inclusion of a Motion for Resolution on the November II plenary session agenda in Strasbourg.

We strongly believe that a new Diabetes Resolution is an opportunity to bring about healthier and more equitable societies for people living with diabetes as well as all EU citizens living with non-communicable diseases (NCDs) and other conditions.

We want to thank all the MEPs, our diabetes champions, who have listened to the needs of the diabetes community, showed empathy with people living with diabetes, recognised their struggle in managing a lifelong 24/7 condition and gave us their political support for a new Diabetes Resolution: MEP Sara Cerdas, MEP Romana Jerković, MEP Kateřina Konečná, MEP Marisa Matias, MEP Tilly Metz, MEP Sirpa Pietikäinen, MEP Frédérique Ries, MEP Christel Schaldemose, MEP Tomislav Sokol, and MEP István Ujhelyi.

One hundred years after the discovery of insulin, IDF Europe and the entire diabetes community invite other MEPs to follow the lead of our champions and help people living with diabetes in Europe to lead long, healthy and fulfilling lives.

Read full statements form IDF Europe and MMD group

European Parliament Lunch Debate - Towards a new Diabetes Resolution: The Time to Act is Now!

On October 12, IDF Europe and MEPs Mobilising for Diabetes held a lunch debate at the European Parliament in Brussels, hosted by MEP István Ujhelyi, a long-standing supporter of the diabetes cause and a strong ally of the diabetes community.

After MEP Istvan Ujhelyi’s introduction on the importance of reaffirming political commitment to tackle the diabetes epidemic in the EU, Chris Delicata, President of the Maltese Diabetes Association and former IDF Europe Chair, explained why acting on diabetes is far from being a one-disease approach, but instead is one that benefits all healthcare users through better designed, sustainable and resilient healthcare systems (read the speech here).

During the event, three diabetes advocates, Veerle Vanhuyse (Belgium), Cameron Keighron (Ireland) and Konstantinos Tagkalos (Greece), shared their stories of living with diabetes and reflected on the urgent need for a new diabetes resolution to improve diabetes care and build resilient and sustainable health systems.

This was followed by a panel discussion during which MMD members, MEP Tomislav Sokol (EPP, Croatia) and MEP Romana Jerković (S&D, Croatia), highlighted the need for urgent action at the European and national levels to lower the incidence of diabetes, reduce inequalities and improve care for all NCDs.

During the day, more than 70 people stopped by IDF Europe’s health desk to check their blood glucose levels.

We wish to thank MEP István Ujhelyi for hosting the event, MEP Romana Jerković and MEP Tomislav Sokol for their valuable contribution and everyone who joined the event to mobilise political support towards a resolution.

IDF EUROPE YOUTH PLATFORM

IDF Europe Hackathon

The first ever IDF Europe Hackathon was held in Brussels, Belgium from October 14-16 2022. Twenty-five alumni from the Youth Leadership Camps and Youth Leadership Labs over the last 10 years, travelled to Brussels from 17 different countries to participate in the Hackathon for a weekend of collaboration and idea generation on the theme of the Blue Circle - the universal symbol for diabetes.

YOURAH was established six years ago, to be a European network of diabetes youth advocates working together towards a common goal – a better life with diabetes for all. With this vision in mind, the first objective of the weekend was to create a space which would facilitate the sharing of expertise and experiences as well as relationship building among the alumni of YOURAH. In alignment with YOURAH’s mission, to connect young advocates within Europe and develop resources for the community, the second objective of the Hackathon was for ideas, concepts and projects to be initiated by the participants around the theme of the Blue Circle.

The energy over the weekend was tangible as groups not only worked tirelessly on their projects, but participated in a number of activities on the weekend's programme coordinated by the organising committee. This entailed a variety of events ranging from art workshops, to team building exercises, to sporting activities. The programme also included inspirational presentations by three fantastic guest speakers. Laura Burlando from DeDoc Voices presented the Diaversary project, Kamil Armacki (Nerdabetic) delivered a workshop on running diabetes events online and offline, and Jaivir Pall, from Harbr Ventures, presented Design Thinking.

The weekend concluded with presentations by the four groups on their projects which since the Hackathon, have already been presented at the IDF board meeting on October 24. The groups are continuing to collaborate and work on their projects as they work on bringing their projects from a minimal viable product to fruition so that those living with and affected by diabetes can #UniteForDiabetes through the Blue Circle pin or logo.

UKRAINE NEWS

Support for people living with diabetes affected by the war in Ukraine

Since the beginning of the conflict, as well as calling for an immediate end to it, IDF Europe has been working with our international partners and member associations on ensuring the delivery of medicines, devices and supplies that PwD require in Ukraine and in the countries in which Ukrainian citizens seek refuge.

IDF Europe also developed the platform "Connect Solidarity". This gathers information to help Ukrainians living with diabetes understand what support they can get in the country where they are displaced, and how to get it, as well as resources that can be used by healthcare professionals and people in need of medical or psychological support living with diabetes and/or other conditions. Currently, information for the platform also highlights the fundraising initiatives endorsed by IDF Europe to support the delivery of medical supplies to PwD in Ukraine and neighbouring countries, as well as our own fundraising efforts to support the work of our member associations that are offering assistance and support to Ukrainian refugees living with diabetes.

To learn about our initiative, how you can donate, join, or support our efforts,
visit our dedicated website: Connect Solidarity

Third annual symposium on Diabetes in Humanitarian Crises

On October 20-21, the International Alliance for Diabetes Action (IADA), the London School of Hygiene and Tropical Medicine Centre for Global Chronic Conditions and NCD Knowledge Hub, co-hosted the 3rd annual symposium on Diabetes in Humanitarian Crises. The aim of the annual symposium is to provide a platform for shared learning, exchange, and development of new collaborative initiatives between key stakeholders involved in diabetes care of people experiencing humanitarian crisis. This year, the event had a specific focus on the Ukraine crisis, particularly on the lessons learned about provision and continuity of care for diabetes.

IDF Vice President, Iryna Vlasenko, participated in the first panel discussion about the current situation in Ukraine, where over 1,100 healthcare facilities have been damaged since the beginning of the conflict.

IDF Europe Regional Manager, Elisabeth Dupont, also joined one of the panels, highlighting the role of the diabetes community and detailing IDF Europe’s platform "Connect Solidarity" which gathers information about the support that PwD can get in the country where they are displaced, as well as resources for medical and psychological support.

MEMBER NEWS

Slovenian Diabetes Association – Leading up to World Diabetes Day 2022

Every year, in the months leading up to World Diabetes Day, and on the day itself, the Slovenian Diabetes Association (SLODA) organises several initiatives to raise awareness of diabetes.

These include the collaboration with the Association of Radio Amateurs of Slovenia to celebrate WDD by broadcasting messages about diabetes on the special radio stations S55T and S50G and annual school competitions on diabetes knowledge. The latter aim to educate young people and their families about diabetes prevention and the importance of healthy lifestyles.

This year, the oldest international cycling race in Slovenia, the 54th Grand Prix of Kranj – Filp Majcen memorial (GP Kranj 2022), was won by the Italian cyclist Andrea Peron, who lives with diabetes and who is a member of the cycling team "Team Novo Nordisk". His achievement represents a victory for all people living with diabetes.

During the race, as part of the diabetes awareness campaign #darujemkilometre, stationary bikes were set up by the Slovenian Diabetes Association at the race site for visitors to use. The campaign will last until November 14 and its goals is to collect a total of 384,000 kilometers, equivalent to the distance between Earth and the Moon, through various sports activities in order to raise awareness of diabetes and to encourage physical activity.

IDF EUROPE NEWS, ACTIVITIES AND EVENTS

World Diabetes Day 2022

Since its launch, when the 14th November was declared World Diabetes Day by the United Nations, the global diabetes community has gathered together to celebrate a day dedicated to building awareness of managing and caring for diabetes and lowering the risks of developing T2D and diabetes-related complications.

World Diabetes Day 2021-23’s campaign theme is Access to Diabetes Care. In 2022, the day focuses on the need for better access to quality diabetes education for healthcare professionals and PwD.

As part of our efforts to raise awareness of the urgent need for action and to mobilise political support for a new European Parliament Diabetes Resolution, around World Diabetes Day 2022, we are holding a series of events alongside key diabetes stakeholders, focusing on all aspects of diabetes prevention and management, including the importance of diabetes education for PwD and HCPs:

European Parliament Lunch Debate: “Towards a new Diabetes Resolution: The Time to Act is Now!” – October 12 (Read more here)
Online joint event IDF Europe - #dedoc – November 14
European Parliament Breakfast Symposium on World Diabetes Day: "Improving diabetes care for more resilient healthcare systems" – November 15 (Read more here)
Exhibition at the European Parliament in Strasbourg: “Centenary of the Discovery of Insulin” - November 21-24
Webinar: If Not Now When? Access to Diabetes Care – November 25

IDF Europe Regional Council in Lisbon – December 4, 2022

The IDF Europe Regional Council will be held on December 4 in Lisbon, where all IDF Europe Members will meet in person for the first time since COVID-19. The Regional Council has traditionally taken place the day before the IDF Congress, and it represents one of our most important annual events. The TEAM meeting (“Together Everyone Achieves More”) will take place in the afternoon, after the Regional Council. The day is an opportunity to review the activities carried out throughout the year, share best practices and discuss upcoming projects as well as financial matters. This year, the Regional Council will also elect the new IDF Europe Regional Board for the years 2023-2025.

We are looking forward to meeting all our members in Lisbon!

IDF Europe Twinning Programme

We are delighted to announce that the twinning phase of the IDF Europe twinning programme has now started. We are currently supporting some of our member associations to establish strategic collaborations and work on common projects that can help them grow their capacity by building on their national expertise.

We are looking forward to seeing each collaboration take shape and to helping our members maximise the impact of their activities by connecting, giving and receiving support.

If your association should still like to be considered for the twinning programme, please contact martina.boccardo@idf-europe.org.

Learn more about the programme on our website.

NEWS FROM EUROPE

IDF Europe welcomes the focus on mental health but regrets the little attention given to NCDs in the 2023 Commission work programme

On October 18, 2022, the European Commission adopted its 2023 Commission work programme (WP 2023), setting out the next steps of its response to Russia’s aggression against Ukraine, the rising energy prices and post-pandemic economic recovery. This work programme also sets out targeted actions to reinforce the European Health Union and bring about healthier and more sustainable societies.

While IDF Europe welcomes the focus on the continuous implementation of the Beating Cancer Plan, the creation of a European Health Data Space and the development of a comprehensive approach to mental health, we regret to see the little attention given to other non-communicable diseases, such as diabetes. Despite the staggering diabetes numbers, the clear requirements for an improvement in the prevention and management of diabetes and other NCDs that were more than clearly demonstrated during the COVID-19 pandemic, there is no continuity of actions that started to take shape with initiatives such as the EU NCD initiative - Healthier Together.

For the EU to be an agent of change and drive action towards a true European Health Union, we must respond more ambitiously, with a shared sense of purpose and united approach to the most pressing health threats of today. Tackling NCDs such as a diabetes requires putting in place a clear implementation roadmap and bringing together initiatives such as the Beating Cancer Plan, the European Health Data Space, the Pharmaceutical Regulation, the Artificial Intelligence Act and others, to achieve a positive and meaningful impact on the health and lives of European citizens.

WHO - Web-based consultation on the Framework for Meaningful Engagement of People Living with Noncommunicable Diseases and Mental Health conditions

The World Health Organization (WHO) has recently launched a web-based consultation on Zero Draft of the WHO Framework for Meaningful Engagement of People Living with Noncommunicable diseases and Mental Health conditions. The web-based consultation will be open to Member States, UN organizations, non-State actors and individuals with lived experience to submit their comments by November 14, 2022.

The purpose of the framework is to support WHO and Members States in the meaningful engagement of individuals with lived experience to co-create and enhance related policies, programmes, and services.

The framework will contribute to the advancement of understanding, knowledge and action on meaningful engagement and other related participatory approaches through an evolving evidence base. The framework has been co-created with individuals with lived experience, WHO, Member States and other relevant partners.

Read more about the framework and how to submit a response here

IDF EUROPE ADVOCACY AND COMMUNICATION WORK

World Mental Health Day 2022

On World Mental Health Day (October 10), we drew attention to the psychological burden of living with diabetes and the effect this has on one’s mental health and we called for effective psychological and mental support to be part of the standard of care for people living with diabetes.

Diabetes is a life-long, progressive condition that demands round-the-clock self-management throughout the course of a person’s life. Due to the relentless nature of the condition, PwD can experience increased levels of distress, anxiety, and depression.

The psychological burden of living with diabetes not only affects one's everyday life but can also negatively impact a person’s ability to manage their diabetes leading to poorer physical health. PwD are 2 to 3 times more likely to experience depression than people who do not live with diabetes. Currently, only 25-50% of PwD who have depression get diagnosed and treated for it.

Various interventions can support psychological well-being and reduce psychological morbidity for PwD. These include structured patient education, peer-to-peer support, psychological support and treatment, among many other options.

Read the stories that our youth members shared earlier this year about mental health and diabetes here, and check our tips and tricks on how to alleviate the psychological burden of living with diabetes here.

World Stroke Day 2022

On World Stroke Day (October 29), we raised awareness of the crucial aspect of acting FAST in the event of a stroke to avoid serious complications and drew attention to the need to shift our focus towards prevention rather than treatment to save lives and valuable resources.

A stroke is a medical emergency affecting over one in four adults globally. It occurs when the blood supply to a part of the brain is cut off and it can result in oxygen starvation of the brain, brain damage and loss of function. If a stroke happens, what is of the essence is to save #precious time by ensuring timely access to medical care, as each second of inaction could lead to additional brain tissue and neurons damage.

Living with diabetes is a major risk factor for developing cardiovascular diseases and strokes. The World Stroke Organization estimated that the likelihood of developing a stroke is 1.5 to 2 times higher for an adult living with diabetes compared to one that does not.

Prevention is key as the risk of developing a stroke can be considerably reduced by keeping blood glucose levels in range, blood pressure low and cholesterol levels on target. Adopting a healthy lifestyle through regular exercise and a balanced diet can drastically reduce the risk of having a stroke.

Read the full article here to learn more about stroke and the actions governments should take

EU-FUNDED PROJECTS

DigiCare4You wins presentation award at ISH2022 congress

IDF Europe is leading the communication and dissemination work package of the DigiCare4You Horizon 2020 project, designed to improve the early prevention and management of T2D and hypertension (HTN) via a community-based, person-centred solution, integrating both social and healthcare systems, supported by the use of digital tools. This project will run from 2020 to 2025 and will conduct an implementation study targeting more than 10,000 families in two middle-income countries (Albania and Bulgaria) and two high-income countries (Greece and Spain).

Investigators from La Trobe University, Baker Heart and Diabetes Institute, Ghent University, NYU Grossman School of Medicine and Meteda conducted a literature review on the evidence of both clinical- and cost-effectiveness of mHealth and community-based interventions for the prevention and management of T2D and HTN. George Sopsis from La Trobe University in Melbourne, Australia won the award of best presentation based on the literature review results at the International Society of Hypertension congress in Kyoto, Kyoto, Japan.

Follow the project twitter account for more content @DigiCare4You.

DigiCare4You project milestones

The DigiCare4You project has made much progress in the last few months. The screening process has now started in all four countries and the mHealth-based intervention will start soon. All the preparation and training materials for the screening and digital tools have been developed and all work from Work Package 2 “Stakeholder engagement, situation analysis & implementation strategies” has been completed. The DigiCare4You project achieved the three following milestones:

Milestone4 Tailored implementation strategies defined
Milestone5 Adapted DigiCare4You solution delivered and ready for implementation
Milestone 6 DigiCare4You evaluation and monitoring tools developed and ready for implementation

Check out all the submitted deliverables here

Read more about the project and its news items here

Trials@Home third annual meeting and patient centred approach in Decentralized Clinical Trials

IDF Europe is a consortium member of an EU-funded research project, Trials@Home, which aims to reshape clinical trial design, conduct and operations, by developing and piloting standards, recommendations and tools for the definition and operationalization of decentralized clinical trials (DCTs) in Europe.

Trials@Home’s third hybrid online-in person annual meeting took place in Wuppertal, Germany, on September 26 and 27. During the annual meeting, work package leaders provided extensive updates on the progress achieved in the last year.

Two members of the Patient Expert Panel (PEP) attended the in-person Annual Meeting. Since the beginning of the project, PEP members have provided valuable input across many of the project’s aspects including the design of the trial and its logistics.

On the first day, PEP Member, Erik Werson, participated in a Panel on Return of Data to Patients. There, he emphasized the need for healthcare professionals to understand the person in front of them and support them accordingly.

The second day of the meeting, a Panel on Agreement with the Regulatory Feedback on DCT Approaches took place, during which Kostas Tagkalos, another PEP member, pointed out the importance of the relationship between patients and their GP during the recruitment process in DCT.

The next meeting, the semi-annual meeting, will take place at the end of March, 2023, in Valencia, Spain. All PEP members look forward to contributing to the next steps of the project!