From Uncertainty to Empowerment: How To Prepare for Type 1 Screening

Screening for islet autoantibodies has transformed the way type 1 diabetes is understood. Yet many people with type 1 (or who have family members with the condition) are uncertain how screening works or have concerns about the process. They may also wonder what comes next after diagnosis.

A group of experts recently presented a full picture of the process following the detection of two or more diabetes-related autoantibodies – and how people move through it.

The talk was moderated by Dr. Diana Isaacs, director of education and training in Diabetes Technology at the Cleveland Clinic, and Dr. Natalie Bellini, an endocrine nurse practitioner at Case Western Reserve University, and featured the following diabetes experts:

• Jill Weissberg-Benchell, a certified diabetes care and education specialist and professor at the Northwestern University Feinberg School of Medicine
• Dr. Rifka Schulman-Rosenbaum, director of inpatient diabetes at the Long Island Jewish (LIJ) Medical Center
• Dr. Anita Swamy, medical director of the Chicago Children’s Diabetes Center
• Dr. Anders Carlson, associate executive director of the International Diabetes Center (IDC) in Minnesota

Type 1 screening basics

Dr. Anita Swamy began the discussion with an overview of type 1 screening. While those who have a relative with type 1 diabetes face roughly a 1 in 20 chance of developing the condition, she also noted that around 90% of people diagnosed have no family history.

“What we’re screening for are islet autoantibodies, and they can appear years before symptoms,” Swamy said. “That’s why we’re encouraging screening – so we know ahead of time.”

This advance warning can help prevent diabetic ketoacidosis (DKA), weight loss, and other serious complications seen with undiagnosed stage 3 type 1 diabetes.

The main autoantibodies screened for are IAA (insulin), GAD65 (glutamic acid decarboxylase), IA-2 (insulinoma-associated antigen-2), and ZnT8 (zinc transporter-8).

She also pointed out several resources for screening:

• TrialNet: An NIH-funded program, TrialNet offers free finger-stick testing for relatives of people with type 1 diabetes.
• ASK Research Program: The Barbara Davis Center for Diabetes provides free screening for anyone in the U.S., regardless of family history.
• Clinical labs: A healthcare provider can order autoantibody blood tests at a local facility, such as LabCorp or Quest.
• At-home kits: Available online here, users fill out a short online questionnaire, receive a mailed kit, and send back samples for testing.

How type 1 diabetes progresses

Type 1 diabetes develops in three stages. The first two can be detected with a blood test, even if the person has no symptoms. As the stages advance, blood sugar becomes increasingly elevated.

“Stage 3 is the classic diagnosis – two or more antibodies plus hyperglycemia that requires insulin," said Dr. Anders Carlson. "Stage 2 is two or more antibodies with abnormal glucose but no symptoms. Stage 1 is the presence of antibodies with no symptoms and normal glucose.”

Carlson noted the lifetime risk of progressing to stage 3 after testing positive for two or more autoantibodies is nearly 100%. For people with only one antibody, the risk is lower – about 50% over 20 years.

Getting diagnosed: Next steps in monitoring

Follow-up care varies depending on the stage and the age of the person diagnosed, Dr. Rifka Schulman-Rosenbaum explained.

“With pediatrics, the process moves much more quickly," she said. "The younger the age, the quicker it goes. When you move into the adult segment, first, it’s a lot less studied, but we do know that it moves more slowly.” 

Carlson emphasized flexibility and individualized care. For those in stage 1, providers may recommend using a glucometer during periods of stress, illness, or surgery.

“For stage 1, we provide a glucometer, some education, support, and help manage their expectations of what comes next," he said. "They probably don’t need to be as diligent or as concerned about testing.”

Stage 1 visits are usually scheduled every six to 12 months, unless other risk factors such as hypertension (high blood pressure) require more frequent follow-up.

In stage 2, visits typically occur every six months or more often, depending on glucose stability.  A referral to a specialist is likely made, Schulman-Rosenbaum said. Choices about glucose testing are considered, such as continuous glucose monitoring (CGM) for one to two week periods, or an oral glucose tolerance test.

Swamy added that because the progression occurs faster in children, kids are typically seen more frequently (every three months), and if possible, CGMs are recommended for closer monitoring.

For people with one antibody detected, the approach should be individualized based on risk factors such as family history or other autoimmune diseases, Carlson said. Most people require less frequent monitoring – every one to three years unless additional risk factors prompt more frequent visits.

Impact on mental health

A positive screening result can bring a range of emotions affecting mental health, along with the uncertainty of knowing when each stage will occur. 

“There are families who are going to be completely devastated," said Weissberg-Benchell. "And there are families who say, 'No big deal. We’ve got this.' It can be anything and everything.'"

Swamy highlighted the importance of retesting to confirm the result and stage, as well as locating knowledgeable, specialized follow-up care.

"You really need to see a provider who is familiar with this, so that they can give you the appropriate emotional and social support that's needed," she said. "Families need to be with somebody who understands what a big deal it is." 

Carlson stressed how important it is for providers to offer support, set expectations, and give people some sense of what comes next in each stage. 

"Let's say you move from stage 1 to stage 2. Then what do we do? What is going to be different for you? I think planting those seeds early can really help smooth the transition later on," he said.

Clinical trials and research

Experts said participation in a trial is encouraged – if the person is open to the idea and has access to a research center. Studies offer the potential to learn about and access new therapies and contribute to research that could lead to future advances.

Swamy noted that identifying a person’s stage helps determine if they qualify for a study or intervention.  

She highlighted three reliable sources for current research opportunities and validated study information:

• BreakthroughT1D has an online questionnaire that matches individuals with trials in their area.
• TrialNet provides free risk screening and trials aimed at slowing or preventing progression of type 1 diabetes.
• Ask the Experts from the Barbara Davis Center for Diabetes offers education, monitoring guidance, and access to early-treatment resources.

Access issues

The experts also highlighted challenges with access to care, monitoring, and new treatments like Tzield (teplizumab), which can help preserve beta cell function and delay the onset of type 1 diabetes.  

Carlson noted that access to diabetes technology, such as CGM, is often limited by insurance coverage. Some plans don’t cover CGMs until a person is on insulin, making early monitoring difficult.

“It could be just the type of insurance you have or the state you’re in," Carlson said. "Hopefully, you can get a compelling medical necessity put together. That can be very time-consuming and very challenging."

Swamy added that insurers often deny coverage for specialist referrals or new treatments, particularly in early-stage type 1 diabetes. She said this pushback often occurs because insurers may lack up-to-date knowledge about new therapies, guidelines, and the importance of early intervention in type 1 diabetes.

“This is novel therapy, and so I think they just are uninformed," she said. In these cases, a peer-to-peer meeting between a healthcare provider and the insurer can be helpful. In addition, the Tzield Compass Support Program can help with questions about finding a treatment site, insurance coverage, and costs. 

Participating in studies requires time and may involve transportation and other costs. Panelists noted this may be a barrier for some, potentially narrowing who is represented in the study results.

“We work in the South Side of Chicago," Swamy said. "Thankfully, Breakthrough T1D chose this as a pilot screening site, so we have free kits to screen our families, and that’s made a huge difference.”

The bottom line

Screening for autoantibodies allows for proactive rather than reactive care for an early type 1 diagnosis, reducing the risk of DKA and other complications. 

Experts emphasized the emotional impact of screening results and the need for personalized and ongoing support from providers who are familiar with this emerging field of medicine.

Access and equity can be a challenge in early diabetes care. Insurance coverage for advanced monitoring and new therapies is often limited. Diabetes experts advocated for expanding research and screening to underserved communities.

A number of online resources can connect families with free testing, education, and guidance on monitoring through the early stages of type 1.

Learn more about type 1 screening here:

• How Do People With Type 1 Diabetes Monitor Beta Cell Function?
• Early Diabetes Screening in Kids Can Improve Quality of Life
• Type 1 Diabetes: It's Time for Population-Wide Screening
• New International Recommendations on Monitoring for Type 1 Diabetes