Who should be offered screening?
People with a family member who has type 1 diabetes are 15 times more likely to develop type 1 than the general population and should be offered screening. However, it is important to note that most people who develop type 1 do not have a family member with the condition. People with another autoimmune disease or a family history of autoimmune disease may also be offered screening. Screening can begin at 2 years of age.
Why be screened?
Type 1 diabetes is often an emergency diagnosis. A person may not know they have type 1 diabetes until a serious complication occurs, such as diabetic ketoacidosis (DKA). DKA is a medical emergency and can be life-threatening if left untreated. In the United States, 30% to 40% of children have DKA when they are first diagnosed with type 1 diabetes. And DKA can happen at any age; in 2021, 62% of type 1 diabetes diagnoses were in people over 20 years of age.
Although symptoms can appear suddenly, type 1 diabetes develops in stages over months or years and starts long before a person needs to take insulin. Early stages of type 1 diabetes can be identified by screening and treated years before symptoms and serious complications such as DKA occur.
Children who develop type 1 diabetes before the age of 10 are at increased risk of heart disease and kidney disease as young adults. That is why screening of risk personsearly treatment and continuous monitoring are so important – these steps can delay lifelong complications.
How screening works
Type 1 diabetes is caused when your immune system creates certain autoantibodies (a type of immune cell) that destroy cells in the pancreas that produce insulin. A simple blood test can be done to check for these diabetes-related autoantibodies.
Screening results
Negative (no autoantibodies)
Right now, there is no guidance on when or how often screening should be repeated after a negative result. Talk to your doctor about whether you or your child should be monitored in the future.
Positive (2 or more autoantibodies)
If your results or your child’s results show 2 or more diabetes-related autoantibodies, the screening may be repeated to confirm the result. Your doctor will also check your blood sugar level and ask about any symptoms.
Stages
Type 1 diabetes develops in three specific stages. Stage 1 is now considered the start of type 1 diabetes. People can stay on stage 1 for years before moving on to stages 2 and 3.
If you or your child ever tests positive for type 1 diabetes, your doctor will refer you to an endocrinologist (a doctor who treats diabetes and other hormone problems). They will work with you to create a treatment plan and discuss medications, monitoring, and lifestyle changes needed to manage type 1 diabetes.
Costs for screening
There are free screening programs for type 1 diabetes. For example, TrialNet provides free screening to people who have a relative with type 1 diabetes. For those who test positive, TrialNet offers monitoring and a chance to participate in research.
Similarly, the Autoimmunity Screening for Kids (ASK) program offers free screening for type 1 diabetes and celiac disease for children in the United States, including those without a family history of either condition. Screening can be done in person or a screening kit can be sent to you.
You can also ask your or your child’s doctor to order tests at a local laboratory. If you have health insurance, call your insurance company to find out if the costs of screening are covered. Not all insurance companies will pay for it. If screening is not covered, the cost is typically around $100.
