JDRF T1D Index: measuring the impact of type 1 diabetes, and expressing grief and hope through numbers
Allow me the honour of starting with a quote from The Lion King:
“The past can hurt. But the way I see it, you can either run from it or learn from it.”
I was fortunate enough to attend the International Society for Pediatric and Adolescent Diabetes (ISPAD) Conference last year where I learned about JDRF’s T1D Index, a project that has measured the impact of type 1 diabetes (T1D) around the globe like never before.
JDRF used over 400 publications and surveyed more than 500 endocrinologists around the world to develop a machine learning prediction model. The results of the simulation are presented on a very interactive and simple webpage that can be accessed by anyone.
Perhaps the biggest achievement of the T1D Index has been to create an accessible and simplified dataset for each country. Although the resulting data is not the most accurate, it is certainly a step up from the disorganised and inaccurate information sources we've had until now.
The T1D index reports the impact of type 1 diabetes using these four metrics:
Missing Persons: People who should be alive, but instead died early due to diabetes complications.
Healthy Years Lived: The number of healthy years a person lived with diabetes.
Healthy Years Lost: The number of healthy years lost due to diabetes complications and stress.
Non-diagnosed Incidence: People who develop T1D but are never diagnosed.
I hope you have a basic understanding of the T1DIndex by now. Remember, our goal is to understand the T1DIndex as a human story, not just as a statistical face of diabetes. I would like to divide this article into two basic human emotions.
Grief: type 1 diabetes and health inequality
The T1D Index gives us a window into the past. It allows us to understand all that we have lost to diabetes due to health inequalities. The following numbers really reflect the magnitude of grief and suffering humanity has gone through.
Number of people missing due to T1D: 3.86 million
Number of healthy years lost to T1D per person (diagnosed at 10): 32.1 years
Number of deaths due to non-diagnosis in 2022: 35,860
Number of healthy years remaining for someone diagnosed at 10: 42.4 years
In the following comic I tried to imagine what it might've been like for the countless young people with type 1 diabetes who lost years of their youth.
Hubban Khan illustrates the JDRF T1D Index: years lost to type 1 diabetes. Source: Hubban Khan
Another statistic that caught my eye and really saddened me was about the people we have lost. The T1D Index reports that for every two people living with type 1 diabetes, one passed away too soon.
Their lives, their stories, all gone too soon.
Hubban Khan illustrates the JDRF T1D Index: lives lost to type 1 diabetes. Source: Hubban Khan
You might be wondering what good it would bring to reflect on this painful past. Well, only by looking at the past can we realise the correct direction for the future.
The T1D Index shows us that all these lives and healthy years lost to type 1 diabetes could have been saved if the world had already begun to take the right steps.
However, it’s not too late and the future can be a lot brighter if we come together and shape it to be so.
Hope: access to healthcare can change the future of type 1 diabetes
The T1D Index shows us the light at the end of the tunnel. We now know exactly what it will take to make sure the future of diabetes care is far more positive than the past.
What follows are some of the uplifting statistics that we can aim to achieve:
Number of additional people who could be alive in 2040 if everyone gets access to timely diagnosis from 2023: 668,450
Number of additional people who could be alive in 2040 if everyone gets access to insulin, strips and supported self-management from 2023: 1.99 million
Number of additional people who could be alive in 2040 if everyone gets access to latest diabetes tech devices from 2023: 672,780
So yes, this story is not yet over. We should make sure that we do the right things today as it is our responsibility towards the future generations.
Hubban Khan illustrates the JDRF T1D Index: how insulin accessibility can save lives. Source: Hubban Khan
And honestly, we don’t need some supernatural beings or a miracle to make things better. Together, we are stronger and mighty enough to change the course of history.
To everyone who has in some way been affected by type 1 diabetes, I’d say: it’s not too late.
Using the T1D Index to bring about change
The T1D Index is a great storytelling tool. You can use it to tell the story of millions who live with diabetes. Use it to find the numbers for your country, and then you can make a strong case in front of your politicians and policy makers based on facts.
Recently, advocates in India were able to use the T1D Index facts to convince India’s National Commission for Protection of Child Rights to grant children the right to carry diabetes supplies in school and much more.
The T1D Index is indeed a great tool and I hope that we are able to use such tools to their maximum benefit in the future.
We can all push for change starting today. Let’s raise our voices and find meaningful ways to make diabetes care accessible for all.
How will you use the T1D index to fight for a brighter future? Let us know in the comments.Found this article insightful? Please spread the word and share it with your network.