From Uncertainty to Empowerment: The Journey in Type 1 Screening

Leading experts, clinicians, and parents came together to talk candidly about the road ahead in type 1 diabetes screening in a recent panel hosted by diaTribe. “From Uncertainty to Empowerment: The Journey in Type 1 Screening – Part 1” was more than a scientific discussion – it was a powerful call to action, humanized by lived experiences and hope for a better future in type 1 diabetes care.

Opening the session, diaTribe CEO Jim Carroll emphasized the life-changing work being done by leaders in this field. 

“When I think about the people who are shaping the future of diabetes care, two names immediately come to mind – Dr. Diana Isaacs and Dr. Natalie Bellini. Their impact is measured not only in publications or programs, but in the trust they’ve built and the hope they’ve inspired across the diabetes community,” he said.

Dr. Diana Isaacs, a diabetes pharmacist and director of education and training in Diabetes Technology at the Cleveland Clinic, said that we are at a transformative moment in the history of type 1 diabetes screening. With new data from The T1D TrialNet Pathway to Prevention study showing that over half of new type 1 diabetes cases are discovered in adults, and that progression patterns differ by age group, it's clear that the need for earlier, broader screening has never been greater.

Personal insights from the panelists 

Dr. Natalie Bellini, an endocrine nurse practitioner at Case Western Reserve University, joined Isaacs in moderating a panel of voices who brought this data to life with personal stories. 

One was Dr. Eden Miller, a family practitioner and co-founder of Diabetes Nation, as well as the CEO of Diabetes and Obesity Care. She has lived with diabetes for 30 years and shared her thoughts on the increasing trends in new type 1 diabetes diagnoses. 

“It’s estimated that there will be a 43% increase in the diagnosis of new type 1 diabetes in the next 15 or 20 years. As you can see, there's going to be a lot of newcomers, and what we really need to be mindful of is identifying these people and preventing or slowing down that progression,” said Miller.

Stacey Simms, host of the award-winning podcast “Diabetes Connections” and author of “The World's Worst Diabetes Mom” book series, recounted the shock of her son’s diagnosis of type 1 diabetes at just 23 months old. Because the pediatrician had never seen type 1 diabetes in someone under two years old, they ran the tests to try to rule it out. Little did they know that the tests would end up “ruling in” a diagnosis of type 1 diabetes. Simms described how important it was for her to have a community to rely on for support during that time.

Dr. Maia McCuiston, a pediatrician and founder of The McCuiston Group, shared the tragic story of her first patient, who died during an overseas trip after going into undiagnosed diabetic ketoacidosis (DKA). That loss, she said, permanently reshaped her career and purpose. 

Beyond personal experiences, the science is clear: Screening saves lives. The risk of new-onset DKA can be brought down from 60% to less than 6% with early screening for type 1 diabetes, McCuiston said.

“The death rate from DKA in the United States is about 0.13%, which is only a tiny number until it's the person in your family,” said McCuiston. “We need to understand that we are talking about something that is preventable.”

Other stories, like Dr. Korey Hood’s own type 1 diabetes diagnosis, reinforced just how often the signs of type 1 diabetes are missed. Hood is a professor and staff psychologist at the Stanford University School of Medicine, and was diagnosed with type 1 diabetes when he was in graduate school studying diabetes.

“What was tricky at the time was trying to convince the providers that someone in their early 20s would be diagnosed with type 1, so it took a lot of advocacy for myself,” said Hood.

McCuiston echoed this, saying that not everyone fits the type 1 diabetes “profile.” Even though type 1 diabetes is often associated with younger people, it also commonly occurs in adults. Many individuals with type 1 diabetes fit the characteristics of type 2 diabetes, and often get misdiagnosed. 

What does it mean to get screened for type 1 diabetes?

Type 1 diabetes progresses in stages. Long before blood sugar rises, the immune system provides clues through autoantibodies. These are markers that show the body has started attacking the insulin-producing cells in the pancreas. Screening for these markers can identify risk early, even years before a person develops symptoms. 

Here’s what the stages mean:

• Stage 1: A person has two or more positive autoantibodies, but their A1C is still less than 5.7%. This person doesn’t have diabetes yet, but they are almost certain to develop it eventually.
• Stage 2: The person still has two or more autoantibodies, but now shows signs of irregular blood sugar and has an A1C that is slightly elevated (between 5.7% and 6.4%).
• Stage 3: The person has progressed to clinical type 1 diabetes (A1C greater than 6.5%). Their blood sugar is high enough to cause symptoms, and insulin treatment is needed.

Some people may only have one autoantibody. While this doesn’t guarantee progression, it increases the risk and often means closer monitoring is needed.

“Those who test positive for one autoantibody may not go on to progress to two autoantibodies, so it's not necessarily cause for alarm,” said Isaacs.

Screening doesn’t just prevent hospitalizations; it opens the door to education, community, and empowerment. Knowing your risk allows families to prepare, connect to diabetes care teams, track changes with tools like continuous glucose monitoring (CGM), and potentially even delay the onset with emerging therapies.

Yet the panelists didn’t shy away from the emotional side of screening, which often prevents people from getting tested until they have symptoms. Many families are worried about insurance implications, the psychological stress of knowing one has a lifelong chronic illness, or simply the feeling of waiting for the other shoe to drop.

“Having one autoantibody can still be a huge psychological burden. But it’s also an opportunity. It gives us a chance to monitor closely, educate families, and prepare them, just in case,” McCuiston said.

Overcoming barriers to screening

Despite its benefits, screening still faces some challenges. Many providers are unaware of the American Diabetes Association guidelines, which recommend screening every first-degree relative of a person with type 1 diabetes. Insurance coverage for screening remains inconsistent, and some families worry about the financial burden if they have to pay out-of-pocket.

But the panel shared some practical solutions. Free programs like the ASK study and TrialNet make screening accessible. In addition, healthcare providers can ensure that screening is covered by insurance by correctly coding the individual's family history of type 1 diabetes. Importantly, clinicians can also help encourage screening by approaching it with empathy, education, and open dialogue.

As Simms explained, support makes all the difference. 

“There’s a community out there. If you’ve been screened, if you’re scared, there are people who want to walk with you,” she said. 

For example, Simms’ in-person Mom’s Night Out events bring together mothers of kids with diabetes and women with type 1 to find connection and support long before insulin enters the picture.

The panelists also emphasized the importance of framing screening not as a doom sentence, but as a chance to take control. 

“We don't want to react – we want to be proactive,” said Miller. “If in doubt, check it out.”

This conversation was only the beginning. The next sessions in this three-part series will explore how to monitor those who test positive (September 11) and current and future treatment options (October 16).

The bottom line

Screening for type 1 diabetes isn’t just about early detection – it’s about empowerment, preparation, and connection. With growing awareness, expanding access, and a supportive community, we can turn fear into action and ensure that more families are ready for whatever lies ahead.

Learn more about type 1 diabetes screening here:

• New International Recommendations on Monitoring for Type 1 Diabetes
• Encourage Your Loved Ones to Get Screened for Diabetes!
• Community-Based Screenings Help People Who Don’t Know They Have Diabetes