A Global Index for Type 1 Diabetes

How many people are living with type 1 diabetes (T1D) in the world? What impact does this condition have on life expectancy? Which countries are most affected?

There is little data specific to T1D on a global scale. 

In fact, although the profile of people affected, the causes and the treatments are very different from one type of diabetes to another, existing data often included all types of diabetes until recently. There are multiple forms of diabetes: type 1, type 2, LADA, gestational and secondary to cystic fibrosis or the use of certain medications such as cortisone. 

The lack of knowledge about the prevalence and incidence (number of new cases over a period of time) of T1D across the globe probably explains government inaction toward improving the lives of those affected by this condition.

In September 2022, the world’s first index for T1D—the T1D Index—was launched to provide a more accurate picture of the reality of the disease and help improve the situation. The Index was made possible by a collaboration between organizations such as JDRF, Life for a Child (LFAC), the International Society for Pediatric and Adolescent Diabetes (ISPAD), the International Diabetes Federation (IDF), Beyond Type 1, and some pharmaceutical companies.

What will this index measure? How does it work? Here’s what you need to know.

A simulation algorithm to get more information

The Index is a simulation tool that uses an algorithm (computer program) to estimate the frequency, number of new cases and impact of T1D around the world. It uses global survey data from over 400 publications (some dating back to 1890) and 500 endocrinologists.

While the simulation does not provide “exact” figures, the estimates are nevertheless accurate since the margin of error is around 6%—in comparison, the margin of error of previous estimates was about 35%.

The algorithm will be updated annually as new data (e.g., research) becomes available and may offer future measurements, such as the impact of T1D on the economy, on mental health and on quality of life.

Measuring the global burden

The new Index measures and maps out the number of people living with T1D by country, providing a global picture of the situation. It is estimated that there are currently about 8.7 million people living with T1D worldwide.

Among other things, the Index provides details on the years of healthy life “lost” due to T1D, i.e., time lost due to poor health, disability or early death related to T1D. This number of years also includes time spent on treatment, doctor visits, and other activities related to the management of T1D for a more accurate picture of the overall burden of this condition. The Index also reports the number of people who would still be alive had they not been affected by T1D or its complications. 

In Canada, for example, the Index estimates that approximately 285,000 people are living with T1D (in 2022) and that 36,260 people have died from T1D-related complications (in 2022).

Saving lives

While the information revealed by the Index may seem distressing and burdensome (e.g., number of deaths, loss of years of healthy life), it is essential for demonstrating to governments the importance of implementing measures to improve access to care, treatment and technology for those affected. The lack of knowledge about T1D extends to policymakers, affecting their ability to make good decisions. It is crucial to bring reliable figures to their attention. The figures also show significant improvements over the last few decades with the emergence of new technologies and treatments for diabetes. 

With this information, the Index also aims to highlight disparities (e.g., in terms of prevention, access to treatment and impacts) between low- and high-income countries with respect to T1D.

It includes information such as the number of additional years of healthy life that could be gained through improved access to care, treatment and technology. For instance, if all people living with T1D in Canada had access to continuous glucose monitor (CGM) systems and insulin pumps, they could all gain six years of healthy life.

The Index highlights the importance of early diagnosis, access to treatments (e.g., insulin) and technologies (e.g., blood glucose meters, insulin pump) for everyone, as well as the critical role of research to find a cure for T1D to improve the quality of life of all people affected in the world.

In the future, we hope that data from the BETTER registry will help to provide a more accurate picture of the challenges of living with T1D.

References :

  • The T1D Index reveals the global scope and impact of type 1 diabetes, Type 1 Diabetes Index, consulté le 27 septembre 2022, https://www.t1dindex.org/
  • About the T1D Index, Type 1 Diabetes Index, consulté le 27 septembre 2022, https://www.t1dindex.org/about/
  • The T1D Index: A First-of-its-Kind Lifesaving Tool, JDRF, consulté le 27 septembre 2022, https://www.jdrf.org/blog/2022/09/21/the-t1d-index/
  • Index du DT1, FRDJ, consulté le 27 septembre 2022, https://www.frdj.ca/index-du-dt1/
  • Gregory, Gabriel A et al. “Global incidence, prevalence, and mortality of type 1 diabetes in 2021 with projection to 2040: a modelling study.” The lancet. Diabetes & endocrinology vol. 10,10 (2022): 741-760. doi:10.1016/S2213-8587(22)00218-2


Written by: Sarah Haag RN. BSc.

Reviewed by:

  • Amélie Roy-Fleming Dt.P., EAD, M.Sc.
  • Rémi Rabasa-Lhoret, MD, PhD
  • Jacques Pelletier, Claude Laforest, Marie-Christine Payette, Sonia Fontaine, Eve Poirier, Michel Dostie, patient-partners of the BETTER project

Linguistic revision by: Marie-Christine Payette

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