AthenaDiagnostics appears to be the only commercial lab in the US doing MODY testing. This post is about my journey to get that test done.
I still have not really processed it. Here it is, more than two months since I got the requisition and six weeks after the blood draw. As I said before, I had met with my endo in February and again we talked about MODY testing but she had again dismissed my request again with the claim that I couldn't be MODY because I was on insulin. But my friend niccolo over at TuDiabetes told his story of being diagnosed with MODY-2 which gave me inspiration and additional knowledge, many thanks to him for the active discussion. I did more research and armed myself with a set of papers that all indicated that sufficient doses of insulin did in fact lower the fasting blood sugars of MODY-2 patients. But I didn't even get that far, in a sudden turn of events she handed me a test authorization and I'm now getting tested. After literally years of asking, why all the sudden am I granted this test? I have no idea. And she basically just signed the form and said to check off whatever I wanted.
So I checked all the all the forms of MODY that Athena tests for (they don't test for all known forms). Athena tests for MODY-1, 2, 3, 4, 5 and 8. I actually called my insurance company up and asked about coverage. I had fears that the testing would be denied and I would be sent a bill for $6,000. I really thought I would have to get a letter of medical necessity and get pre-authorization or be at risk of paying out of pocket. Instead they guided me to the Aetna policy bulletin which basically says that if it is coded (ICD-9) properly then it will be covered at 100%. It turns out MODY testing is approved for Type 2, but not Type 1. I frankly could not believe it. I still am not sure I believe it. I would not be surprised if I still get push back from insurance when the bill comes due, but we will see.
I really think I am lucky. AthenaDiagnostics lists the commercial insurance plans that have Athena "in-network." The list the show below is small but fortunately contains my plan. I imagine other companies might approve it as "out of network" but patients would probably be liable for a percentage co-pay, which for a bill of $6,000 might be expensive. And since health care costs are not transparent, you often can't actually get an answer when you ask how much something will costs, they just "balance bill" you when out of network and you get a surprise.
- Blue Cross Blue Shield of MA
- Blue Cross Blue Shield of NM
- Federal Blue Cross Blue Shield
- Fallon Community Health Plan
- Harvard Pilgrim Health Care
Maturity Onset Diabetes of the Young (MODY)
Genetic testing for maturity-onset diabetes of the young (MODY) is considered medically necessary for the diagnosis of MODY2 or MODY3 in persons with hyperglycemia or non-insulin-dependent diabetes who have a family history of abnormal glucose metabolism in at least 2 consecutive generations, with the patient or ≥ 1 family members diagnosed before age 25.
Genetic testing for maturity-onset diabetes of the young (MODY) is considered experimental and investigational for all other indications.
I specifically asked her whether the insurance company applied that policy or whether the doctor was expected to apply that policy as I could not meet that specific requirements. The representative basically told me that it was up to the doctor.
Finally, it needs to be coded right. The policy says that MODY tests are covered if the selection criteria is set and you use the diagnostic code 250.0X, where X is 0 or 2. This is all the variants of ICD-9 codes for Type 2. You have to be coded as Type 2 with Aetna.
QuestDiagnostics so I just went to them and gave them the form. Talk about confusion. I basically was sent away and told to contact Athena. So I did. It turns out you need to send the form to Athena (I faxed it in) and they send out an order to Quest to have the blood draw done. There is a special kit they send to do it so that it can be properly handled and shipped back. The express shipped the test kit to me. After it finally arrived I was able to make contact with Quest for the blood draw. Apparently it is a subsidiary of Quest called ExamOne which does the blood draw. I was able to schedule for them to come to my office for the blood draw and this they finally did more than 3 weeks after walking out of the office with the requisition form.
|MODY is Autosomal Dominant so children|
have 50% chance of inheriting the gene
But really, underneath it all is a question about myself. Who am I? I've always felt that "Diabetes Doesn't Define Me." Some people argue that it doesn't define us, but it helps explain us. But this has caused me to personally question that. Those of you that know me realize that I am an advocate for the Type 2 community. What happens to me if I find out I don't have Type 2? Can I still be an advocate for Type 2 or will it change me? Maybe in some way my diabetes does define who I am.
Keep visiting my blog as in coming weeks I expect to hear the results of my test and share my feelings on the result.