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Why Type 1 Diabetes Is a Hidden Epidemic

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diabetes-care-education-jdrf-breakthrough t1d

There’s a hidden epidemic we aren’t talking about enough, says Anastasia Albanese-O’Neill, Ph.D., a pediatric nurse practitioner and certified diabetes care and education specialist.

Anastasia Albanese-O’Neill

Assistant Vice President, Breakthrough T1D (formerly JDRF)

“The national dialogue is often and appropriately about type 2 diabetes, but the rise in type 1 diabetes (T1D) is equally profound,” Albanese-O’Neill said.

T1D is an autoimmune condition that can develop at any age — from early childhood to your 90s. It affects more than 8.7 million people across the globe.

In T1D, a person’s immune system begins attacking and destroying cells in the pancreas that produce insulin. While the gradual attack usually starts years before symptoms develop, the full onset can feel sudden and lead to symptoms that include unquenchable thirst, frequent urination, increased appetite, fatigue, unexplained weight loss, and vision changes.

Founded in 1970, Breakthrough T1D (formerly JDRF) is a leading organization dedicated to advancing breakthrough research, technology, treatments, and policies to improve the lives of people affected by T1D. Albanese-O’Neill, whose clinical expertise is primarily in T1D, leads Breakthrough T1D’s Early Detection program.

Early detection is possible

The number of people developing T1D every year has been increasing at an alarming rate across the globe for more than 20 years.

T1D was once considered a childhood condition, but more than half of new cases today are diagnosed in adults of all ages. Outdated beliefs about T1D mean many adults are still being misdiagnosed with type 2 diabetes (T2D), potentially spending years receiving incorrect treatment while struggling with high blood glucose levels.

Across all ethnicities in the United States, T1D rates are rising most rapidly in members of the BIPOC [Black, Indigenous, and People of Color] community.

“There are many theories on what is contributing to the increasing rate of T1D,” Albanese-O’Neill added. “While genetics certainly play a role, the rapid rise in incidence is likely tied to environmental factors. Global factors that could play a role in rising rates of T1D include viruses, gut bacteria, diet in early childhood, pollution, rising cesarean birth rates, bacteria exposure, and many more.”

Finland, India, and Italy have the highest rates of T1D across the globe.

“In Finland, the incidence of type 1 diabetes a generation ago was about 1 in 300,” Albanese-O’Neill explained. “Today, it’s about 1 in 125.”

Fortunately, T1D can now be identified years before the need for daily insulin therapy, but many people still don’t know this testing is available or why the results are so critical.

Getting tested for the earliest stages of T1D has become increasingly critical for any individual or family because 85% of new diagnoses are in people with no family history of the condition.

Decades of research have identified the earliest stages and progression of T1D that can be detected long before the need for daily insulin therapy. And this can be done with a simple blood test.

It’s all about the autoantibodies

Autoantibodies develop when your immune system is attacking part of your own body. In people with T1D, four potential autoantibodies can be identified with a simple blood test.

Based on autoantibody results, three stages of T1D can be identified:

  • Stage 1: Two or more persistent autoantibodies with normal blood glucose levels, no T1D symptoms.
  • Stage 2: Two or more persistent autoantibodies, abnormal blood glucose levels, no T1D symptoms.
  • Stage 3: Blood glucose levels are high, symptoms have developed, autoantibodies may or may not still be present.

While the results themselves can be stressful and overwhelming, having this information provides time to plan and prepare and consider participation in research aimed at delaying or preventing the full onset of the condition.

If you (or your child) test positive for T1D autoantibodies, there are currently eight clinical trials studying therapies that aim to protect your body’s insulin-producing cells. Many of these studies, however, need participants who’ve been diagnosed within the last 120 days — a time when most individuals or families are still coping with the new diagnosis.

“It’s such a hard time to make that decision,” Albanese-O’Neill said about learning about a new diagnosis and participating in a clinical trial. “You’re already so overwhelmed. That’s why we need to get more people screened for T1D long before Stage 3, so there’s more time to learn about clinical trials and resources.”

Advocacy work

Breakthrough T1D and other advocacy organizations are working to implement T1D autoantibody screening as a routine part of pediatric healthcare. Other countries are ahead of the game. In September 2023, the Italian Ministry of Health unanimously approved a new law requiring T1D autoantibody screenings every few years in all children ages 1 to 17.

Identifying T1D in its earliest stages means you can participate in these potentially life-changing trials, and  delay or prevent the need for daily insulin therapy. But there are other benefits.

T1D screening has been shown to prevent diabetic ketoacidosis (DKA) at the time of diagnosis. DKA is a life-threatening condition in which the body produces so little insulin, and has such dangerously high blood glucose levels, that its ketone levels reach toxicity. Even if the need for daily insulin therapy cannot be prevented, keeping a close eye on the development of T1D is worthwhile.

“Ultimately, screening needs to be more accessible,” Albanese-O’Neill said. “Since 9 out of 10 people who develop type 1 diabetes have no family history, if we limit testing to family members of people with T1D, we’ll miss many of those who will go on to develop this condition. This is why Breakthrough T1D’s long-term goal is universal testing for type 1 diabetes autoantibodies.”

Learn more about how to get screened for T1D at

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