Aarcha’s Story: ‘I Didn’t Know About T1D Autoantibody Testing’
While there is still no exact cause of type 1 diabetes (T1D) or cure, new advancements in research are discovering autoantibodies for the condition. These markers of potential disease are proving to be crucial for determining who (and perhaps even when someone) will develop T1D.
T1D is developed and diagnosed on a continuum at different stages, marked by the presence of β-cell autoimmunity and the detection of two or more islet autoantibodies.
Islet autoantibodies are proteins developed by the immune system that are associated with T1D. These autoantibodies show an immune response to the islet cells of the body. If someone has another form of diabetes, they would not test positive for islet autoantibodies.
Getting tested for these islet autoantibodies can be done by a simple blood test, but few people are getting tested. Beyond Type 1 sat down with Aarcha Kumar, a 28-year-old pediatric and preventive dentist from Bengaluru, India, who recently tested positive for autoantibodies to talk about her experience and what she did after testing positive.
Testing positive for islet autoantibodies
Aarcha grew up having an interest towards the health sciences and always knew about diabetes. Her maternal grandfather had type 2 diabetes (T2D), but they had no one with T1D in the family.
After having lost 10 kg (about 22 pounds), Aarcha was suddenly diagnosed with T1D in May of 2022. She says, “It was a shock to us all. It all happened very suddenly. I didn’t have any idea about the anti-GAD antibody test, but my endocrinologists at diagnosis did. They were the ones who had me get tested.”
Aarcha says that physicians in India aren’t really aware of autoantibody testing; her general practitioner (GP) hadn’t even heard of the tests. However, her endocrinologists wanted to be sure that she had the internal autoimmune markers of T1D.
This is usually done to rule out other diagnoses, as the majority of people do have autoantibodies at diagnosis.
What types of autoantibodies are tested?
The presence of two or more of the following islet autoantibodies is associated with T1D:
- Islet Cell Cytoplasmic Autoantibodies (ICA)
- Glutamic Acid Decarboxylase Autoantibodies (GAD)
- Insulinoma-Associated-2 Autoantibodies (IA-2A)
- Insulin Autoantibodies (IAA)
- Zinc Transporter-8 Autoantibodies (ZnT8A)
However rare, some people have no antibodies at diagnosis.
In Aarcha’s case, she tested positive for the presence of antibodies to glutamic acid decarboxylase (GAD), which provides early evidence of T1D autoimmune disease activity.
The test results confirmed Aarcha’s T1D diagnosis. Since she was diagnosed as an adult, there was some confusion at first as to whether her diabetes was T2D or maybe even LADA, but the test confirmed it was T1D—requiring insulin injections for life.
She says, “That’s what changed. I was hoping that maybe I could stop injecting myself this way. But after the test, it was a confirmation of insulin-dependent diabetes mellitus.”
High cost of autoantibody testing
Most of these types of outpatient tests aren’t covered by any insurance in India Aarcha shared. This test was especially expensive, costing around 5,000 Indian rupees ($60 USD).
The Constitution of India states that the government is to ensure the right to health for all.
Although health coverage is universal, the system is underfunded and facilities often have staffing and supply shortages. Tests like this are not usually covered and patients must pay out-of-pocket.
Advice for others getting autoantibody testing
Aarcha advises everyone to see an endocrinologist if they’re able. She says, “Please, please, please visit an endocrinologist, not just a GP! The test makes things so much easier, as it gives a proper confirmation on how to go about life with your new diagnosis.”
Getting a proper (and early) diagnosis is key with T1D.
If an early diagnosis is not made and treatment is delayed, T1D can quickly lead to diabetic ketoacidosis (DKA), which can be fatal if not treated quickly.
Tellingly, between 30-46 percent of all children diagnosed with T1D in the United States are in DKA at diagnosis, making it critical to see the signs early. Adults are often misdiagnosed with T2D, so getting a prompt confirmation of autoantibodies can bring relief—and the right treatment.
Aarcha is now living life with a correct diagnosis of T1D and is adjusting well. Although testing for autoantibodies was expensive, she’s glad she was able to get tested.
“The test gives the root cause of your diabetes. Knowledge is power,” she says.
Talk with your family and doctor to decide if getting tested is right for you. If you decide to do so, you can learn more about getting tested by visiting our screening resources.
Editorial Note: This content was made possible by Provention Bio, a Sanofi Company. Editorial control rests solely with Beyond Type 1.
