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The T1D Index: Behind the numbers

JDRF’s Director of Policy and Communications, Hilary Nathan, on building a global picture of the incidence of type 1 diabetes.

An adult with their arms around a children whilst checking their glucose levels with a finger prick test

Did you know that there are 3.86 million people around the world who would be alive today if it wasn’t for the complications caused by type 1 diabetes?

We’ve researched and established this distressing international figure because we’ve built a global picture of the incidence of type 1. It maps the human cost of type 1 by outlining ‘missing years’ and ‘healthy years lost’ and shows the value that access to treatments provides, country by country.

The T1D index has been four years in the making. We’ve surveyed over 500 endocrinologists and drawn data from more than 400 publications to simulate the state of type 1 diabetes globally. We’re passionate about the Index because we know that that robust research is the key which will ultimately deliver our mission to eradicate type 1 and its effects.

This particular research hasn’t been carried out in a lab and doesn’t involve clinical trials. It’s a data simulation tool, which is new a type of research for JDRF and it delivers the evidence that will help us create change and open access to treatment for everyone living with type 1.

Why has JDRF created the Type 1 Index?

Frederick Banting, John Macleod, Charles Best and James Collip discovered insulin and sold the patent for $1 so that the world could benefit over 100 years ago. However, people all around the world continue to die prematurely and experience lower levels of wellbeing because they lack access to type 1 treatments and technology.

If we’re going to achieve our mission of eradicating diabetes and its effects on a global scale, we need to fully understand the global picture and the impact it has on everyone diagnosed with type 1.

A global approach

We believe that we have a global responsibility everyone in the type 1 community as type 1 diabetes doesn’t respect borders. The Index will enable us to provide the evidence to ensure global institutions pivot their focus onto type 1 and healthcare providers around the world, leveraging the data to start to fund and increase access and research for more treatments.

There’s momentum now in global access to type 1 treatments. Earlier this year, we helped shape the World Health Organization’s first global type 1 diabetes targets. By 2030 it has set the target that 100% of people diagnosed with type 1 diabetes will have access to glucose self-monitoring and affordable insulin.

By identifying the picture in each country, we’re able to supply the research-based leadership to help countries and providers pave the way for universal treatment. Our data will offer information at a country level about what to focus on for the biggest impact, which could mean focusing on early diagnosis, advocating for better access to treatments or funding research into cures.

Why now?

Since 2000, the prevalence of type 1 diabetes has risen at four times faster than the rate of population growth. While we know that it’s growing, we don’t know why. Mapping the prevalence of type 1 globally will allow us to look at the bigger picture and look at ways to prevent the growth.

Without intervention, the numbers of ‘missing people’ will rise, the number of ‘healthy years lost’ will rise and the economic burden of type 1 diabetes will rise. It’s now more important than ever that we recognise that helping people to live well with type 1 diabetes and lowering the economic burden of the condition are best tackled together and robust data about the impact of type 1 is key to this.

Why does this matter to me?

It’s important to remember that this tool uses averages and doesn’t make a distinction about how people manage their type 1. It also includes the data from the people, young and old, who weren’t diagnosed in time. Many people will far exceed the average life expectancy shown in this data. However – some will not, and this is why this data is important.

We can see that the data shows that we have some of the fewest ‘missing people’ and ‘healthy years’ lost to type 1 diabetes anywhere in the world. That’s not good enough. Our mission is to eradicate diabetes and its effects, not lessen them.

This data shows that no matter where you are in the world, access to treatments and technologies reduces the impact and burden of type 1. Until everyone has equal access to the best forms of treatment, our advocacy work is essential to ensure that people with type 1 have access to the latest treatments as soon as they are available.

It’s about real people

It’s essential that we keep remembering that this figure represents real people. Type 1 diabetes isn’t hypothetical. The ‘missing people’ are our colleagues, our friends and our families and ourselves. The burden is real and no matter where you are born or live in the world, type 1 has a huge impact on the people we love and care for.

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