Monogenic/MODY-5 Testing Experience/Cost

So couldn’t find a question in search sorry if a repeat.

So have a 15 year old recently diagnosed and the doctor suggested it might make sense to get this testing as it might change her treatment and could provide information about whether our other kids might be susceptible and/or pass along. All was well until the lab called and said not in network, insurance doesn’t cover. $5,000 to run the test! Does anyone have experience - is the “going” price. We went through the doctor and big lab company so assuming not a scam.

I will start of by saying, I am not a parent, so my thoughts well be different from those of parents of kids who have Type 1. I have seen some discussions about antibodies but they were way over my head and I couldn’t follow our contribute to them. From what I could tell the impression I got was that parents got information about possibilities but it didn’t seem to give a definitive course of treatment that differed significantly from the standard (however you want to define that).
So from a much simpler level, looking at the cost vs benefits I would say that $5K sounds like a lot of money to spend out of pocket for relatively little knowledge about what to do now in terms of treatment. As for other children being diagnosed, you may get some odds to work with but I imagine you would proceed as you probably plan to do now - by knowing what the symptoms are so you can be watchful and address them if they appear. That money might be better put towards supplies and expenses, or even as a special savings plan for the future as it can be very difficult to try life insurance of you have diabetes (at least at a reasonable rates).
Again - disclaimer alert - this comes from someone who is not a parent, much less one who has had antibody testing done for their child. I may have mis-read comments on the subject, and parents may have found having the results me helpful than I gathered.
Even without such information - even without BG meters, CGMS, insulin pumps and the “modern” imagine in use right now - some of us have lived with diabetes for several decades and are still going strong.
Wishing you all the best.

@bllg Hi Brett, and welcome to the TypeOneNation Forum!

It is usually advisable to ask your insurance company about “In-Network” providers. This information can be obtained by phone call, or more conveniently by looking at the insurance company webpage, logging in and identifying your location. List price for most lab tests is usually very high but your out-of-pocket can be $0.00 for Medically Necessary testing.

Monogenic diabetes often looks like Autoimmune Diabetes [currently called TypeOne, but treatment can be different. Monogenic, or MODI, is caused by a defective gene passed from generation to generation, and can often affect several members of a family. Only about 10% of people accurately diagnosed with Autoimmune Diabetes, T1D, have a first degree relative also diagnosed with T1. I’ve had diabetes for 65 years, and none of my children, or grandchildren display any signs of diabetes.

The JDRF has a program called T1Detect which checks antibodies in an attempt to forecast onset of diabetes in close relatives. Look at the JDRF website - - or, T1Detect - JDRF

Sadly we did - and they said in Network. But apparently it then gets sent to a unique lab that makes it out of network. We noticed that some companies cover it but Blue Cross IL does not.

Thanks for your other perspective and did notice the JDRF. In fact seeing that and very affordable pricing is what got to want to make sure this was not a completely insane price. Which it still sort of is.

The treatment difference is what makes me feel we need to do it- if she has the MODI that’s not great but we would change treatment. But apparently can’t find out without shelling out lots of money.

Hi @bllg you’ve already got great advice. I’ll only add that I had a specific allergy antibody test done for my son and it was considered “research-not covered” and even after an appeal (after the fact)it was a nice thou out of my pocket. You have the responsibility of final costs. Cheers and good luck :four_leaf_clover: