Aaron Kowalski, PhD: Connecting the Dots with the Type 1 Diabetes Index

As someone with a direct connection to type 1 diabetes (T1D), Aaron Kowalski, PhD, CEO of JDRF, mentioned that he loves discussing science with a type 1 connection. He was diagnosed with T1D at 13 years of age and his brother at 3 years of age, two of six children who have T1D in his family.

Today, as the head of JDRF, he is working to leverage global data on T1D to both identify and implement interventions that may change the trajectory of T1D.

While T1D was once considered fully fatal, the introduction of insulin over 100 years ago was able to help patients manage their disease. But, the condition still has no cure and rates of diagnoses are often misrepresented both in the United States and abroad.

Kowalski joined HCPLive to discuss JDRF’s Type 1 Diabetes Index (T1D Index). The first-of-its-kind data simulation tool measures the human and public health impact of the T1D crisis, aiming to fill in gaps in data on its global incidence.

“100 years post advent of insulin, there are so many people still dying for lack of diabetes treatment,” he said. “To accelerate life changing breakthroughs, you've got to understand who will benefit and ultimately deliver benefits to them. We still have just incredible gaps in our understanding of who is out there with the disease, and particularly underserved populations, we know now that people aren't getting the care they deserve and need and that's unacceptable.”

The index included measures on “missing people” and “number of years lost,” each an estimate of how T1D has affected those living with the condition. The number of years lost is a measure of time lost due to ill-health, disability, or early death, while 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.

Kowalski once more discussed his own diagnosis in 1984, stating that the doctors informed him that his life would be shortened and he would deal with complications, including kidney, eye, and heart disease. The index revealed that this is still prevalent in the United States and globally, particularly in underserved parts of the world.

The data from the index on areas such as Africa suggest children are not living a decade with T1D, taking away decades of their lives. With the introduction of insulin and treatment for these underserved populations, Kowalski noted that they could restore decades of life for little amounts of money.

“If we could deliver that care to everybody, we could save many, many days of life for many, many people,” he said. “That’s what we're trying to quantify, because if you can do that, you can then measure it and demonstrate that interventions are cost effective and obviously societally incredibly impactful.” 

Those interventions may change the impact of the disease for millions of people with four key topics, including a timely diagnosis, access to insulin and blood glucose testing strips, pumps and continuous glucose monitors, and ultimately, emerging preventions and cures.

Kowalski explicitly discussed the accessibility to insulin, stating “there’s no question here, people can’t live without insulin”. He highlighted how one-quarter of T1D people ration their insulin because they cannot afford it, suggesting how higher health care costs directly translate into adverse events.

He indicated that his company is working on making generic insulin available at just above cost in the US and projects globally that are focused on providing both insulin and care.

“We see pathways to viable solutions in the US and globally that will ensure that there are pathways for people who need insulin to get it, to get it affordably, to not have to ration it, and to do much, much better,” Kowalski said.