New global Type 1 Diabetes Index highlights the unmet need of people living with type 1 diabetes

22 September 2022

The new global Type 1 Diabetes Index (T1D Index), a first-of-its-kind data simulation tool that measures the human and public health impact of T1D in every country across the globe, was released on September 21 as a result of a collaboration between the Juvenile Diabetes Research Foundation (JDRF), International Diabetes Federation (IDF), Life for a Child, International Society for Pediatric and Adolescent Diabetes (ISPAD), and Beyond Type 1.

Data is required to improve knowledge exchange, benchmarks and ultimately improve health outcomes. Until now, there have been wide gaps in the data about the incidence and impact of T1D. Leveraging data and insights from the T1D Index can help change the lives of people living with T1D by identifying attainable country-by-country interventions including timely diagnosis, accessible care and funding research that could lead to cures.

T1D has a profound human, emotional and financial burden for people who live with it–and prevalence is on the rise. The T1D Index uniquely illuminates the human burden of the condition by highlighting “missing people,” the number of people who would still be alive today if they had not died early due to complications from T1D, and “healthy years lost,” the time lost to ill-health, disability or early death from living with T1D.

“More than 100 years have passed since the first successful use of therapeutic insulin. It shames the world that early diagnosis and access to appropriate standards of care are still not universally achieved,” said Prof Andrew Boulton, President of IDF. “The T1D Index places an innovative tool in the hands of diabetes advocates everywhere, and will help reframe the argument around access to care for people living with T1D and draw attention to the significant disparities that continue to exist globally. IDF is delighted to have contributed to the development of the Index and will support its promotion and further development to make the case for uninterrupted access to affordable insulin, along with the technologies and education that support successful insulin therapy for all people living with T1D.”

Key partners and experts around the world were involved in the development of the Index–using the results from a global survey of more than 500 endocrinologists and 400 publications to simulate the state of T1D globally and at the country level.

Simulations from the T1D Index suggest that In Europe and Central Asia, in 2022, there are 746,330 “missing people” and an average of 24.4 “healthy years lost” to T1D per person, if diagnosed at age 10.

Four key interventions have been identified that could change the current trajectory for T1D and its impact on people around the world:

  • Timely diagnosis: enabling better education and training for healthcare professionals to accurately diagnose T1D. If the global population has access to timely diagnosis from 2023, 668,000 more people could be alive in 2040.
  • Insulin and strips: creating barrier-free access to insulin and blood glucose testing strips. If the global population has access to insulin and testing strips from 2023, and coaching to self-manage the condition, 1.98 million more people could be alive in 2040.
  • Pumps and CGMs: ensuring everyone living with T1D has access to technology that automates glucose monitoring and insulin delivery. 673,000 more people could be alive in 2040 if everyone with T1D has access to the technology available from 2023.
  • Prevention and cures: making the case for further investment and research in emerging prevention, treatments and cures. 890,000 more people could be alive in 2040 if we find a cure.

Once interventions are identified on the global and country level, the T1D Index encourages users to take action by sharing the data and findings with their networks and local decision makers, and connecting with other T1D advocates in their communities.

Additionally, the T1D Index shines a light on important statistics about the burden of T1D globally, including:

T1D prevalence has increased at four times the rate of global population growth since 2000.

The expected number of people living with T1D in 2040 will be 17.43 million.

The number of “missing people” in the year 2040 is projected to be 6.85 million.

“As a member of the T1D community, I know many are not as fortunate as I am to have the resources necessary to live a healthy and fulfilled life,” Aaron Kowalski, Ph.D., JDRF CEO, said. “This is why I am so proud that significant progress has been made to understand T1D’s global impact through the T1D Index. We are calling on government and public health decision makers throughout the world to utilize the tool to identify and implement interventions that can change the trajectory of T1D.”

In future releases, the Index will expand to include T1D’s impact on economic costs, mental health and quality of life. The data will also be broken down at regional and demographic levels.

You can learn more about the T1D Index here. The Index and accompanying research has been published in the leading diabetes and endocrinology medical journal, The Lancet Diabetes & Endocrinology.

The T1D Index is supported by founding corporate sponsor, Abbott Diabetes Care, with additional support from Lilly, Vertex Pharmaceuticals and The Leona M. and Harry B. Helmsley Charitable Trust.