Talking T1Detect, the New T1D Testing Program from JDRF
Editor’s Note: Every week on her podcast Diabetes Connections, Stacey Simms tackles issues and news relevant to the type 1 community. In the newest episode, Stacey talks to JDRF Director of Research Frank Martin about the recently announced T1Detect program—raising awareness and education of a new at-home screening test for type 1 diabetes (T1D) antibodies. Everyone, regardless of relation to someone with confirmed T1D, is eligible. If you or someone you love is interested in T1D screening, click here.
Stacey: Tell me more about T1Detect
Frank: T1Detect is an education and awareness program about type 1 diabetes and its risks, and a very important component of that is making the [autoantibodies] test available to people. Because right now, they’re not really available to people except in the context of research settings, or as people like you might know, in the context of an actual T1D diagnosis, when someone has super high blood sugar, they’re in the hospital. Then the doctors will do a confirmation test to see if it’s type 1, we want to make it available to people who don’t yet have symptoms. So hence, T1Detect.
You can go and find the test in a couple of different places. First and foremost is the JDRF website, we have access to information and the test kit button on our website through T1Detect. You click the button, it gives you some information about what it is to have T1D, what the risk factors are, what are autoantibodies.
You click the button you go to the Enable portal, fill in some information, we’re asking for your name, mailing address, things like that. We’re also asking for some demographic information, we want to learn who’s getting to the end, who’s at risk, and that’ll help us improve the program going forward. Then you come to a choice where you can pay for the test, the test is not terribly expensive, it’s $55. To run the test, plus or minus a couple of taxes, you also have the option if you cannot afford the test to have JDRF [help] pay for the test and you will pay for the bulk of the cost.
Right now, it’s not a feature to ask your insurance company to pay for this, but in the future, it will be. All that being done, the test will get sent to you, you’ll get a little box in the mail. It was pretty simple, I did it. You have a Lancet, you poke your finger. Then you fill in two out of four of these circles on a piece of cardboard, let that dry, and send it back. A couple of weeks later, the company will tell you, you have one, two, or three of the type 1 diabetes-specific autoantibodies.
What are you testing for?
Let’s take a little step back to the biology of type 1 diabetes, the biology of autoimmune diseases. Type 1 is an autoimmune disease, and one of the ways we can tell a person who has an autoimmune disease is we can look in their blood for signs and symptoms of that their immune system is doing something that it is not supposed to be doing. In type 1 diabetes, we look for something called autoantibodies.
Now autoantibodies are something that that’s sort of a general term to all different autoimmune diseases. People with multiple sclerosis have autoantibodies, people with lupus have autoantibodies. What we’re looking for in type 1 diabetes are autoantibodies that are specific to type 1 diabetes. What makes them specific to type 1 diabetes is they are specific to things that are in your pancreas. We actually are looking for three of the four primary autoantibodies that have been determined through many many years of research to be very good diagnostics for type 1 diabetes, they’re IAA [Anti-Insulin], IA2 and GAD65. Some people may remember those names from TrialNet or other organizations, but there are three of the four that help us diagnose to end and predict your risk…. Based on those three, if you have two or more of those, we know pretty well that your risk of developing insulin dependence is very, very high. In fact, if you have two or more of those in your blood, you already have type 1 diabetes… you may not be symptomatic, but you already have it.
Watch the full interview below:
Read about one family’s choice to have their daughter screened for T1D antibodies and why Jorge decided at age 14 that he wanted to take the test regardless of the result