The number of people with type 1 diabetes is surging to historically high levels, according to new research from the Centers for Disease Control and Prevention (CDC).

The CDC’s newest 2020 National Diabetes Statistics Report released in mid-February estimates an almost 30 percent increase in T1D cases within the United States in just the past 2 years. The condition is growing most sharply in youth populations and minority groups.

The exact causes aren’t clear, but it seems to harken back to scientific exploration of the factors that trigger this autoimmune condition.

Some experts also wonder whether heightened media attention in recent years and increased societal awareness about T1D and its symptoms are playing a role in the reporting of hundreds of cases that historically might have gone uncounted. In any case, the upsurge in statistics is not good news.

“This is alarming and we have to stop it from growing,” says Dr. Sanjoy Dutta, vice president of research at the JDRF. “The first line of message is that knowledge is power, and that while we don’t have a preventative therapy in our lineup yet, just knowing about type 1 diabetes is important. No one is spared. Anyone can get diabetes and at any age.”

According to the CDC’s 2020 data, a total of 1.6 million Americans ages 20 and older have T1D, compared to 1.25 million people reported in 2017. That includes 18,291 children younger than age 20. A separate study on diabetes in youth shows that T1D in youth is growing most sharply in black and Hispanic populations.

According to the latest report, between 2002 and 2015:

  • T1D cases among black children increased 20 percent.
  • T1D cases among Hispanic children increased nearly 20 percent.
  • T1D cases among Asian/Pacific Islander children increased 19 percent.
  • White children are the slowest growing demographic with a 14 percent increase, yet remain the most impacted group overall.
  • Diagnosis occurred most frequently between the ages of 5 and 14, with 27 percent diagnosed between ages 5 and 9, and 5 percent diagnosed between ages 10 and 14.

This isn’t a new trend, as the CDC’s SEARCH database has been tracking T1D incidence and prevalence in both youth and adults since 2000 and each CDC report issued through the years shows an increase in rates.

CDC analysis of health data through 2018 also revealed trends in type 2 diabetes and prediabetes:

  • 34.2 million Americans (just over 1 in 10) have T2 diabetes.
  • 88 million American adults (approximately 1 in 3) have prediabetes.
  • New T2 diabetes cases were higher among non-Hispanic black and Hispanic people than non-Hispanic Asian and non-Hispanic white people.
  • New cases of adults diagnosed with T2 diabetes significantly decreased from 2008 through 2018.

The why is anyone’s guess, according to JDRF’s Dr. Sutta — because there is still no concrete answer to the big question of “What Triggers T1D?” in the first place.

JDRF says these main theories of what causes T1D may play into the higher incidence and prevalence rates among youth:

  • Environmental. Possibly a viral infection of some sort, for example if children are exposed to a virus during daycare settings. One study on this is underway in Finnish populations, which still needs to be cross-validated in other locations and expanded upon.
  • Hygiene. This theory posits that a decrease in the incidence of autoimmune diseases might be rising because of a decreasing frequency of childhood infections due to improved hygiene. In other words, in our modern world, we live so cleanly that the immune system has nothing to do and goes haywire.
  • Prenatal. This is an in-utero focus, looking at the first few months that could dictate one’s autoimmune and T1D susceptibility for the rest of life.
  • Gut microbiology. Research suggests that changes in gut microbiota — or the population of microorganisms that reside in the intestine — play a role in the development of T1D. Various clinical studies are underway in this area, funded by both public and private institutions.
  • Genetics. This one stems from the long-held scientific belief that individuals may have a genetic predisposition to T1D. Researchers are looking at this in varying ways, including how modified genetics may be changing the diabetes picture across the world.

Beyond just type 1 diabetes, Sutta says there is a larger trend of growing autoimmune chronic conditions being seen across the world. He and many global health leaders believe it’s all connected to some extent, and scientific work continues investigating the reasons behind that on many fronts.

“There’s an autoimmune storm, if you will,” Sutta says. “Populations are getting diseases you might not expect. They are not necessarily weaker or different, just in different groups and at rates that we haven’t seen before.”

In its official response to the new CDC data, the JDRF points to the urgency of its agenda and focus on both treatment and cure research for T1D.

Heightened public awareness of T1D may also be contributing to the growing statistics — as doctors are diagnosing the illness more accurately (thus more often) and reporting of cases has improved through new national T1D registries.

Think about it: There is a marketed difference in media attention on T1D in just the past five years (2015–2020), compared to the previous CDC data reporting period (2012–2015). Social media of course increases visibility, and all the headlines about the insulin pricing crisis have helped raise the bar on mainstream media coverage.

For type 2 and prediabetes, awareness may also tie in with the increased discussion and attention to health topics overall. Since early 2016, the CDC has been partnering with the American Diabetes Association (ADA), American Medical Association (AMA), and the Ad Council on the first-ever national public service advertising (PSA) campaign about prediabetes. It features humorous media spots in English and Spanish that urge people to take a short online risk test at

The JDRF doesn’t discount that increased public awareness is part of the puzzle in this latest data, but still points toward the imperative to learn more about what may be fueling the scientific causes of type 1 diabetes.

For the dynamic national non-profit group Beyond Type 1, which has worked hard to raise awareness of the dangers of DKA, the new CDC data is anything but clear.

“The new data raises many important questions, from the limitations on the data itself to potential causes for the steep rise in diagnoses,” BT1 CEO Thom Scher says. “We do see, qualitatively, that awareness drives diagnoses. Whether the resulting diagnoses in this dataset would have been incorrectly made as type 2, resulted in death without diagnosis, or any number of other outcomes is unfortunately impossible to know with the limited data at hand.”

BT1 commends the CDC for the steps it’s taken over the years in tracking this data, but notes that results remain “severely limited” and does not provide enough insights into what can be gleaned or done about type 1 diabetes.

“We continue to believe the CDC needs to develop a mechanism to break out diabetes by type among adults in their data,” Scher added.

The bottom line is that we now have more people with type 1 diabetes than ever before. That’s problematic on several fronts, including the huge financial impact on our ever-stretched U.S. healthcare system, and the fact that so many patients struggle to access and afford the care they need.