Better Data Saves Lives: Introducing the T1D Index


The autoimmune disease type 1 diabetes (T1D) is deeply misunderstood and under-accounted for across the world, leading to inequitable access to vital healthcare.

But better data can lead to better funding, improved healthcare approaches and stronger advocacy efforts for people who develop T1D

Launched on September 21, 2022, T1D Index aims to provide that data. 

Developed by JDRF—the leading global organization funding type 1 diabetes research—alongside Life for a Child, International Society for Pediatric and Adolescent Diabetes (ISPAD), International Diabetes Foundation (IDF) and Beyond Type 1, the T1D Index uses global survey data from more than 400 publications and 500 endocrinologists to simulate the prevalence and impact of T1D.

We didn’t know the real numbers of type 1 diabetes

Until now, we didn’t know accurate numbers of who was living with—and dying from—type 1 diabetes. 

Across the globe, all types of diabetes were typically counted together, even though each type of diabetes has vastly different severities at diagnosis and requires customized types of care, medications and management education. 

In some countries, it looked like there were no cases of T1D, but that’s because children and adults weren’t being diagnosed, dying from the disease before treatment could even begin. 

In other countries, getting consistent access to basic management tools like blood sugar meters, blood sugar test strips, insulin and syringes can be difficult, leading to poor health and significantly decreased life expectancy.

Without robust data on the prevalence and impact of the disease, governments haven’t always prioritized funding for basic but life-sustaining supplies or increasing access to care.

The new T1D Index aims to tackle these issues

With its launch covered in the medical journal The Lancet, the new T1D Index estimates that 8.7 million people across the globe live with type 1 diabetes today, with an expected 17.43 million by 2040. The disease’s prevalence has increased at four times the global population growth rate since 2000. We don’t yet know why.

The Index also shows estimated country-specific data. In Rwanda, where Beyond Type 1 recently shared the story of sisters with T1D Ineza and Rebeka, a person diagnosed at age 10 will, on average, only have an estimated 12.5 more years of healthy life. That’s if they get diagnosed at all—an additional 2,000 people would be alive today if everyone in the country had access to a proper T1D diagnosis. More than 7,000 people would still be alive today if everyone who develops T1D had access to insulin, supplies and diabetes management education. 

Globally, an estimated 3.86 million people would be alive today if everyone had equitable access to diabetes healthcare and tools. Without any interventions, that number is projected to skyrocket to 6.85 million people dead by 2040. 

Using Data to Advocate for Equitable Diabetes Care

Knowing how many people with type 1 diabetes would be alive today if they had equitable access to care is unique to the T1D Index, presenting a piece of data that can support advocacy efforts. 

For example, because of the T1D Index, we can now estimate that if everyone who develops type 1 diabetes:

  • gets access to timely diagnosis starting next year, 668,000 more people could be alive in 2040.
  • gets access to insulin, testing strips and education on self-management starting next year, a staggering 1.98 million more people could be alive in 2040.
  • gets access to currently available diabetes technology—insulin pumps and continuous glucose monitors—starting next year, 673,000 more people could be alive in 2040.

On a local level, advocates can use this data to show the data-based impact of equitable healthcare within their own country, highlighting the need for more funding and better healthcare access for people living with type 1 diabetes. 

You can learn more about the T1D Index here

The JDRF – Beyond Type 1 Alliance provides greater support for those impacted by type 1 diabetes (T1D) by tapping into the combined power of JDRF, the leading global organization funding T1D research, and Beyond Type 1, the organization with the largest online community of any diabetes nonprofit.

Editor’s Note: The T1D Index simulations provide the most accurate estimate of T1D currently available with version 1.0 testing to +/- 6 percent against real-world data. Leading existing estimates test to +/- 35 percent against the same data. T1D Index is a publicly available, open-source model that will be updated as further incidence, prevalence, and mortality data become available. 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. 

WRITTEN BY Lala Jackson, POSTED 09/21/22, UPDATED 09/21/22

Lala is an author and communications strategist who has lived with type 1 diabetes since 1997. She worked across med-tech, business incubation, library tech and wellness before landing in the T1D non-profit space in 2016. A bit of a nomad, she grew up primarily bouncing between Hawaii and Washington state and graduated from the University of Miami. You can usually find her reading, preferably on a beach.