You Can Screen for Type 1 Diabetes Autoantibodies—When Will it Become Standard Childhood Healthcare?


Months or years before blood sugar levels start to climb and type 1 diabetes is officially diagnosed, a simple blood test can indicate that type 1 diabetes (T1D) may happen or is progressing. But testing children for markers of type 1 diabetes isn’t a standard in United States public healthcare yet. 

To demonstrate the value of an autoantibody test, almost 100,000 children in Germany were tested during regular childhood screening as part of a clinical study. Testing caught 280 cases of pre-symptomatic type 1 diabetes in children aged 2-5, which allowed each family to watch for symptoms of high blood sugar. Of those, only two children (1 percent) developed diabetic ketoacidosis (DKA) at diagnosis, rather than the typical 20 percent of newly-diagnosed T1D cases in Germany.

If this number isn’t already making your jaw drop, consider the fact that DKA in unscreened children rests at 40-60 percent in the United Statescommence the jaw-dropping! 

These results raise an important question—why isn’t type 1 diabetes autoantibody screening a standard in American healthcare yet if it can potentially save children’s lives? Before we dive into that, let’s start with how it all works.

A type 1 diabetes autoantibody panel: what does it test?

Type 1 diabetes is an autoimmune disease. Type 1 diabetes autoantibody screening tests a person for the autoantibodies that may trigger type 1 diabetes. (A person may be required to fast before the test.) Autoantibodies are abnormal antibodies that target an individual’s tissue. Their development is the very beginning stages of an autoimmune reaction.

Type 1 diabetes, otherwise referred to as diabetes mellitus type 1, is not inherited, but studies have shown that children may be at an increased risk to develop it if someone in their family has type 1. While the exact cause of T1D is unclear, scientists have pinpointed a few underlying factors that may contribute to its development, including some genetic ones. Specific variants of genes belonging to the family of genes called the human leukocyte antigen (HLA) have been found to pose an increased risk for developing type 1 diabetes.

Autoantibodies can develop at any time. The presence of a combination of autoantibodies could mean a person has type 1 diabetes or is at risk of developing it. People with type 2 diabetes do not have these autoantibodies, so a panel can also help determine what type of diabetes is present if blood sugar levels are already high. By getting yourself or your child tested, you may be able to recognize the warning signs of type 1 diabetes development more quickly. The T1D community is typically more likely to be aware of the warning signs than the general population because of their closeness to the disease. 

Still, people with a genetic predisposition are not the only ones at risk; in fact, about 90 percent of people with T1D have no family history of the disease. This increases the urgency for the general population to be aware of the warning signs of type 1 diabetes and make screening for it a standard in public healthcare.

The need to screen the general public for T1D

Type 1 diabetes autoantibody screening may slow down the rate of DKA at the time of diagnosis and prevent other severe consequences. According to JDRF, DKA at diagnosis is associated with poor long-term Refers to controlling blood glucose levels in the bloodstream in patients with diabetes. Glycemic control is typically monitored with a blood glucose meter and/or continuous glucose monitor.glycemic control and often correlates with a greater risk of type 1 diabetes complications over time. 20 to 40 percent of diabetic ketoacidosis (DKA) cases occur in those newly-diagnosed with T1D.

Though the parents whose children participated in the German research and found out they had autoantibodies were distressed, the study showed their distress waned over a year. It’s only natural for parents who find markers of type 1 diabetes in their children to feel this way, but there is a lot of power in information.

JDRF showed that screening followed by monitoring could immensely decrease DKA risk at diagnosis. Since the article on the study was published on January 28, 2020, cost-benefit analyses of testing were performed, pushing the need for screenings to the public health sector as a standard of care. JDRF launched T1Detect to bring education and awareness and expand T1D screening to the general population. 

What is the state of type 1 diabetes autoantibody screening in the U.S.?

T1Detect provides universal screening for type 1 diabetes. If you do not have a relative that has been diagnosed with type 1 diabetes, JDRF encourages you to use T1Detect. However, if you have a relative diagnosed with type 1 diabetes, the organization encourages you to use TrialNet for free testing options, although you can still use T1Detect if you prefer.

TrialNet risk screening is free to relatives of people with type 1 diabetes. If you are eligible, you can choose the screening option you prefer—order an at-home test kit to take to a local lab for processing or visit one of TrialNet’s locations across the country at no cost to you. Screening costs should not be a top concern. Tests should be affordable and accessible to all as they become available. The screening costs of the German study were kept low by using a relatively inexpensive and sensitive pre-screening method, for example. To determine screening eligibility in the U.S., all you have to do is answer a few simple questions.

Screening results typically take four to six weeks to process. If you or your child have the markers of type 1 diabetes, TrialNet will schedule a follow-up visit to determine eligibility for a prevention study. There may also be other testing resources near you—talk with your healthcare team to learn more about what’s available in your area. They should have the best awareness.

Despite the existence of these programs, without creating a sense of need, parents, children and young adults are unlikely to be screened. A lack of awareness of screening pricing may also play a part. That’s why it’s so important to keep spreading awareness of the warning signs of type 1 diabetes as these programs grow in public knowledge.

What’s next in type 1 diabetes autoantibody screening?

The Milken Institute released a report in April 2021 that dives deep into much of what is covered in this article and beyond. For the general public to gain access to type 1 diabetes autoantibody screening, the institute recommends 16 action items, including:

  • “Build the evidence base for general population autoantibody screening.”
  • “Increase clinician knowledge and awareness of T1D screening and care strategies.”
  • “Improve public knowledge of T1D and develop tools to convey risk accurately.”

Widespread autoantibody screening would create safer and better health outcomes for the general public. To do that, The Milken Institute recommends supporting current initiatives and strategically funding new ones. Data sharing, collaborations and developing a sound infrastructure for study should aid in this process.

Know the warning signs of type 1 diabetes

Until the majority of the public is aware of the benefits of screening for type 1 diabetes, it’s critical to be aware of the warning signs. It can save someone’s life. 

Warning signs of type 1 diabetes may include (but are not limited to) any or a combination of the following:

  • Drowsiness or low energy
  • Irritability
  • Increased thirst
  • Frequent urination
  • Fruity odor on the breath
  • Increased appetite
  • Heavy breathing
  • Sudden weight loss
  • Sudden vision changes
  • Sugar in the urine
  • Stupor or unconsciousness
  • Overheating or increased sweating

If you recognize any of these warning signs in yourself or a loved one, get tested by a medical team immediately. It is already too late to get screened for type 1 diabetes if you recognize these warning signs. Do not wait to get tested. Go to your healthcare clinic for a blood glucose test as soon as possible.

Now that you’re aware of the signs and symptoms of type 1 diabetes, how can you get more involved and share this life-saving information? 

Check out our Warning Signs Awareness Campaign here and learn about how you can receive free posters and other materials to share in your communities, schools, coffee shops, doctor’s offices and so much more. 

Together, we can see to it that no one experiences life-threatening complications or a preventable tragedy due to a delayed or missed type 1 diagnosis.

WRITTEN BY Julia Flaherty, POSTED 03/01/22, UPDATED 12/12/22

Julia Flaherty is a published children’s book author, writer and editor, award-winning digital marketer, content creator and type 1 diabetes advocate. Find Julia’s first book, “Rosie Becomes a Warrior.” Julia finds therapy in building connections within the type 1 diabetes community. Being able to contribute to its progress brings her joy. She loves connecting with the diabetes communities, being creative and storytelling. You will find Julia hiking, traveling, working on her next book, or diving into a new art project in her free time. Connect with Julia on LinkedIn or Twitter.