JDRF, the leading global organization funding type 1 diabetes (T1D) research, is proud to announce the launch of the T1D Index, a first-of-its-kind data simulation tool that provides the most accurate and comprehensive global picture of type 1 diabetes in history.
The Index measures and maps how many people live with this condition in every country, the healthy years of life it takes from people living with T1D, the number of people who would still be alive today if they hadn’t died prematurely from T1D complications, and our global strategy to reduce its impact.
T1D has never before been measured in this way or at this scale.
Creating the T1D Index
Using data from 400+ publications (dating back to 1890!) and surveys from 500+ endocrinologists around the globe, the T1D Index simulations offer the most accurate estimate of T1D ever created. These data sources provide comprehensive information that was vital to building the T1D Index, including rates of new cases, the risk of complications and mortality, and current standards of medical care.
The T1D Index is a collaborative development by JDRF, Life for a Child (LFAC), International Society for Pediatric and Adolescent Diabetes (ISPAD), International Diabetes Federation (IDF), and Beyond Type 1. It is supported by founding corporate sponsor, Abbott, with additional support from Lilly, Vertex Pharmaceuticals, and The Leona M. and Harry B. Helmsley Charitable Trust.
The T1D Index is housed in a public-facing website, and accompanying research has been published in the leading diabetes and endocrinology medical journal, The Lancet Diabetes & Endocrinology.
Fact: 3 in 100 families in the United States are
impacted by T1D.
A Global Mission, Led by JDRF
T1D is a global problem, and JDRF is the leading global organization fighting T1D. Improved global access to T1D therapies and care will accelerate JDRF’s mission progress.
The majority of those living with T1D across the world today struggle with disease management for many reasons, including lack of access to necessary resources, technology, and education, and outdated training for healthcare professionals. According to the Index, hundreds of thousands of people with T1D around the world do not have access to the care they need.
Breaking down barriers to care will increase the size of the T1D market and incentivize private sector investment. Bottom line: improving the lives of more people with T1D globally means more key partners to help us solve the problem–donors, advocates, regulators, policy makers, healthcare decision makers, and industry partners alike.
JDRF is confident the evidence presented by the T1D Index will increase collaboration across the global T1D community. By attracting new ideas and new supporters, the impact of JDRF’s research, advocacy, education, and outreach will extend even further, and ultimately save lives.
“As a member of the T1D community, I have seen first-hand the profound human, emotional, and financial burden it has on those who live with it,” Kowalski said. “The interventions recommended by the T1D Index and the tenets of the JDRF mission are a powerful alignment that have the potential to improve the lives of millions of people with T1D.”
The Devastating Global Burden of T1D
Users of the T1D Index will be able to view country-specific statistics on “missing people” and “number of years lost.”
“Number of years lost” is an estimate of the time lost to ill-health, disability, or early death from living with T1D. It presents a more complete picture of the burden of T1D, including treatment, doctor visits and other management activities.
“Missing people” is an estimate of the number of people who would still be alive today if they had not died early due to complications from T1D.
These statistics, while unsettling, show that the global burden of T1D has never been greater, despite advances in treatment. While countries in North America show an average of 22 healthy years lost due to T1D, that number skyrockets for countries in Africa, with an average of 47 healthy years lost. And the comparison of missing people between developed and undeveloped nations is staggering: 300,000 for the U.S. vs. over 900,000 for India.
The wide variances are a stark illustration of global health inequities, but also present tremendous opportunity for improvement. The T1D Index helps shine a light on these challenges we face, giving us a chance to act now.
Fact: Globally, people with T1D lose an average of 32 healthy years of life because of the condition.
Changing the Numbers
With nearly 9 million people living with T1D across the globe, it is one of the fastest growing non-communicable conditions on the planet. The T1D Index aims to educate the world on the scale of T1D to inspire action and help save and improve millions of lives.
The T1D Index identifies four key interventions, coupled with striking statistics, that can change the trajectory of the disease— and its impact—for millions of people.
- Timely diagnosis
Better education and training for medical professionals to accurately diagnose T1D means 668,000 more people could be alive in 2040 if the global population has access to timely diagnosis starting in 2023.
- Insulin and strips
Access to insulin and blood glucose testing strips means 1.98 million more people could be alive in 2040 if the global population has access to insulin and testing strips starting in 2023.
- Pumps and CGMs
Access to technology that automates glucose monitoring and insulin delivery means 673,000 more people could be alive in 2040 if everyone with T1D has access to the technology available starting in 2023.
- Prevention and cures
Further investment and research in emerging prevention, treatments, and cures means 890,000 more people could be alive in 2040.
“Until now, there have been huge gaps in the data about the prevalence and impact of T1D,” said Aaron Kowalski, Ph.D., JDRF CEO. “We are calling on government and public health decision makers throughout the world to utilize the tool to identify and implement these interventions that can change the trajectory of T1D.”
Changing the Story
Using insights from the T1D Index, we will improve global access to T1D care on several fronts:
- JDRF will head a Request For Applications (RFA) for innovative ideas on improving diagnosis rates in low-income countries. We will work with peer organizations to identify the best solutions to achieving zero deaths at diagnosis.
- JDRF will also use its expertise advocating for healthcare policies and legislation to increase access to basic care, and build and sustain intermediate care, for people with T1D in the U.S., India, and Brazil, to start. This includes JDRF’s ongoing support of the Civica Insulin Project to produce affordable insulin in the U.S., starting in 2024.
- Educational materials created by JDRF that explain the benefits of using the latest T1D technology will be adapted for use in other countries, including clinical trial education, awareness, and recruitment.
And this is only the beginning. As the global leader in T1D, JDRF will continue working so that as many people with T1D as possible benefit from our efforts and live longer, healthier lives.
Fact: For every two people living with T1D, we miss a third who passed away from T1D too soon.
Your Role in the T1D Index
We have the data. The urgency is clear. So, what can you do to help JDRF and its partners change the story for millions of people with T1D?
Help us build the movement for global change by sharing the T1D Index information with friends, family, and colleagues.
Persuade local decision makers to accelerate change by sharing your T1D experience with them through email, letters, and even in person meetings.
Connect with the T1D Index and we will let you know about ways you can help, on the local level and beyond.
Learn more at the T1D Index website.
What the Future Holds
The T1D Index will evolve over time, expanding to include the T1D impact on economic costs, mental health, and quality of life. The data will also be broken down at regional and demographic levels. The Index will be updated annually as further incidence, prevalence, and mortality data become available.
Today, we see the real numbers. Moving forward together, we can change the story for millions of people with T1D.