Health Insurance Coverage and Costs for Type 1 Diabetes Screening


 2024-01-12

Approximately 1.45 million people have type 1 diabetes (T1D) in the United States, and by 2024, the T1D Index estimates that more than 2.1 million people will be diagnosed with T1D. The prevalence of diagnoses is growing at 2.9 percent per year versus the United States population growth of 0.8 percent per year. 

Sixty-four thousand people are diagnosed with T1D per year, many of whom arrive at the emergency department in diabetic ketoacidosis (DKA)—a potentially fatal condition that occurs late in the development of T1D. 

Studies show that up to 40 percent of new-onset T1D diagnoses are made when experiencing DKA. Of those cases, 38.8 percent of patients were seen at least once by a doctor who misdiagnosed them before going to the hospital. 

Early detection, diagnosis, and treatment of T1D before patients reach DKA is crucial to prevent lengthy hospitalizations and increased rates of complications and death. This is why autoantibody screening for T1D is so important. 

What is autoantibody screening for type 1 diabetes?

Autoantibody screening for type 1 diabetes is a relatively new way for providers and the general population to gain insight into their health and whether they’re likely to develop type 1 diabetes at some point in their lifetime.T1D starts in the body long before symptoms become apparent. 

Autoantibody testing, typically a blood draw, is an excellent preventive health screening that can save lives. Blood tests can identify proteins in the blood called autoantibodies that signal the immune system’s attack on insulin-producing beta cells in the pancreas. 

If a person has two or more of these autoantibodies, it shows they are at high risk for developing T1D. Having this information is critical—screening for T1D autoantibodies can lead to earlier detection, diagnosis, and treatment of T1D. 

What role does the United States healthcare system play?

Current clinical guidelines recommend that people with a direct connection to someone with T1D (like a parent, sibling, or child) get screened for autoantibodies to gauge their risk. 

However, many health insurance plans do not cover this screening tool, which can create confusion and frustration among those trying to assess their risk for developing T1D. 

There are options, such as state Medicaid programs and Medicare, that the US government subsidizes, but these programs only support a small percentage of the population. Additionally, eligibility relies either on income thresholds or age.

However, within the privatized health insurance landscape, states can enact specific legislation to help their constituents, sometimes through co-payment caps on state-regulated health plans.

How to determine if you’re covered for autoantibody screening

Coverage for autoantibody screening largely depends on what type of health insurance plan you have. Since this technology is new, only some US-based health insurance plans will cover it outright. 

An excellent first step to determine if you’re covered is to call your health insurance. If you’re at high risk for T1D and your insurance won’t cover the test, your doctor can help you write an appeal to your health insurance company to get the blood test covered. 

If all else fails, most out-of-pocket costs for the screening are usually less than $100.

Many blood laboratories offer T1D screening, including:

There are additional ways to screen for T1D that may be free if you qualify. These include the following: 

TrialNet 

TrialNet is a free screening and clinical trial program for family members of people living with T1D. The program has sites across the US, and screening for T1D can be done in person, or TrialNet can send you an at-home testing kit. 

The program is for people between the ages of 2.5-45 years of age with a first-degree relative with T1D (sibling, parent, or child) or ages 2.5-20 with a second-degree relative with T1D (cousin or grandparent) or ages 2.5-45 who has tested positive for at least one T1D related autoantibody on a test outside of TrialNet. 

ASK (Autoimmunity Screening for Kids) 

The ASK program screens for T1D and celiac disease in all children between the ages of 1-17 in the US. No family connection to either T1D or celiac disease is required to participate. 

PLEDGE (Population Level Estimate of Type 1 Diabetes Risk Genes in Children) 

The PLEDGE program provides free screening to children under six who are patients at Sanford Health in South Dakota. 

Research Studies 

You can also research clinical trials near you to determine if you can participate in a T1D research study. Screening for autoantibodies may be part of the protocol, which would cover the screening costs.

What about type 2 diabetes screening?

The rates of type 2 diabetes (T2D) in the general population also grow yearly. Even though rates of T2D are increasing as well, there is no autoantibody screening tool for T2D, because T2D is a metabolic condition and not one of autoimmunity. 

Both environmental and hereditary risk factors play a role in the development of T2D. 

There is a T2D risk test that you can take from the comfort of your own home to assess your likelihood of developing it.

Risk factors for T2D include:

  • Being overweight (having a body mass index of 25-29.9) or obese (having a body mass index of 30 or more). You can calculate your body mass index (BMI) here.
  • Being 45 or older
  • Living a sedentary lifestyle 
  • Having a family history of T2D
  • Are African American, Alaska Native, American Indian, Asian American, Hispanic/Latino, Native Hawaiian, or Pacific Islander
  • Living with high blood pressure
  • Having a low level of HDL cholesterol or a high level of triglycerides
  • Previously had gestational diabetes or gave birth to a baby weighing nine pounds or more
  • Not getting regular exercise 
  • Having a history of heart disease or stroke

The importance of getting screened

While there is no permanent way to prevent diabetes yet, early detection, diagnosis, and treatment are essential to avoid costly and potentially deadly diabetes complications or lengthy hospital stays. 

Talk with your doctor if you’re at higher risk for developing T1D, then call your insurance plan to see if they will cover this important and potentially lifesaving screening.

This content is made possible with the support of Sanofi, a partner of Beyond Type 1. 

WRITTEN BY Christine Fallabel , POSTED 01/12/24, UPDATED 01/12/24

Christine Fallabel has been living with type 1 diabetes since 2000. She's a health and science writer and has been featured in Diabetes Daily Grind, Insulin Nation, Diabetics Doing Things, and is a regular contributor to Diabetes Strong, T1D Exchange and Healthline. She earned her Master of Public Health from Temple University and received her Bachelor of Arts from The University of Delaware. In her spare time, she enjoys hiking with her husband in the mountains of Colorado, tinkering with her DIY Loop insulin pump, drinking strong coffee and reading in front of a cozy fire.