Type 1 Diabetes can be fast, but we can be faster! A call to boost early detection

Last week key stakeholders from across the diabetes community gathered in Madrid for the 60th Annual Meeting of the European Association for the Study of Diabetes (EASD). On this occasion, the European Diabetes Forum (EUDF), the International Diabetes Federation (IDF) Europe, the Spanish Diabetes Federation (FEDE), the Parliamentarians for Diabetes Global Network (PDGN) and Sanofi co-organised the Early Detection Policy Forum to accelerate policy development for the early detection of Type 1 Diabetes (T1D). 

Moderated by Dr Sufyan Hussain, a consultant diabetes and endocrine physician, IDF Europe Board Member and, most importantly, a person living with T1D, the event brought together government representatives and policymakers, global and local advocacy groups, key experts and people living with T1D to emphasize the importance of enhancing early detection policies.  

Type 1 Diabetes places a high burden on patients, their families and society 

Type 1 Diabetes is an autoimmune, complex and lifelong condition that can develop at any age, regardless of family history. Europe has the highest incidence of T1D in children and adolescents and the second highest per-person diabetes cost globally, spending approximately €175 billion in 2021. Europe now reports the highest number of children and adolescents with T1D, with approximately 295,000 cases. 

T1D frequently presents with preventable life-threatening complications, such as diabetic ketoacidosis (DKA), which can lead to hospitalisation and leave severe psychological impact. “Living with T1D in 2024 is still not easy, we need to remember this. Living with T1D is tough”, said Renza Scibilia as a person living with T1D and a diabetes advocate. 

Early diagnosis of T1D positively affects longevity and decreases morbidity, all while having a significant positive impact on the quality of life and mental health of patients and their families. “For individuals diagnosed with T1D, and their families, there is immense pressure to quickly adapt to their new reality – managing a burdensome daily treatment which will impact virtually every aspect of their lives”, said Dr Maartje de Wit, principal investigator in the field of diabetes psychology at Amsterdam UMC. “Individuals living with T1D are twice as likely to experience depression compared to those not impacted by it.” 

Early detection and monitoring can help manage the burden of living with T1D 

Today, T1D is typically diagnosed late in its progression, at so-called ‘Stage 3’, when the risk of severe complications and hospitalisation is much higher. Through screening for autoantibodies, it is possible to detect T1D months or even years before the first symptoms appear. However, currently, due to lack of clear screening guidelines and variations in treatment pathways means too few healthcare professionals are routinely performing autoantibody screening. 

“Earlier diagnosis could prevent DKA, a complication that can have serious health consequences and may lead to poorer cognitive development, especially when it occurs in childhood”, explained Professor Luis Castaño, Professor of Pediatrics at the Cruces University Hospital and the Faculty of Medicine at the University of the Basque Country. “This undeniable benefit, along with scientific advances in new immunomodulatory treatments, opens a pathway to potentially delay or prevent the onset of T1D, and even cure it.”  

Screening initiatives across countries are gaining momentum

Earlier this year, Breakthrough T1D, a nonprofit group (formerly known as JDRF), spearheaded an effort to develop the first internationally-agreed guidance for anyone who tests positive for T1D autoantibodies, filling an important clinical gap and marking an opportunity to accelerate the advancement of policies for early detection of T1D. 

Multiple countries across Europe are paving the way with research programmes that work with regional screening methods. For example, the FR1DA study in Germany, in collaboration with primary care paediatricians, has improved early detection of T1D by screening children aged 2-10 years old in Bavaria, Saxony, Lower-Saxony and Hamburg. In the United Kingdom, the T1DRA study offers type 1 diabetes screening for adults, regardless of family history. Other programmes, such as DiaUnion’s TRIAD study, a Swedish-Danish partnership, focus on the links between T1D and other autoimmune conditions like celiac disease and autoimmune thyroid disease.   

In terms of policy, Italy is playing a leading role by approving a law to establish national screening of the general paediatric and adolescent population for T1D and coeliac disease simultaneously. This groundbreaking legislation sets a precedent for preventive healthcare in the EU.   

Vice-President of the Italy Chamber of Deputies Giorgio Mulè, who introduced the law in the Health Committee, explained how Italy is aiming to expand general-population screening to other chronic diseases, while stressing the importance of a European common framework for early detection.  

Finally, at the EU level, the EDENT1FI project launched in 2023 is bringing together 28 partners in 13 countries from academia, the life sciences and health industry and patient organisations to optimise and extend screening programmes across Europe. 

Policy advancement is needed to ensure integration of early detection within healthcare systems 

Professor Chantal Mathieu, vice-president of EUDF, said “this is the most exciting time we have ever seen in T1D, including being a step closer to prevention of and perhaps even a cure for T1D.” 

However, without a coordinated approach and the policy infrastructure to support it, local healthcare systems cannot support the standardisation and scaling of such practices within clinical care. Standardisation must include the establishment of registries to collect and analyse data on T1D, which currently remain fragmented and underfunded.  

According to Pedro Gullón, Director General of Public Health and Health Equity in Spain, “we now have substantial evidence that early detection is important and can improve quality of life for people living with T1D.” He shared that in Spain the decision whether to implement population-wide screening programs will continue to be assessed with the support of independent bodies and through a comprehensive approach that considers all perspectives and evidence. 

As we rethink the priorities for the next EU mandate, knowledge gained from recent successes in the above-mentioned countries must be leveraged to support governments and decision-makers to establish coordinated, larger-scale and well-integrated national screening programmes.  

EU policies must support unified action by Member States, including awareness campaigns around the importance of an early T1D diagnosis, as well as timely access to innovative therapies to all at risk of and living with T1D.