Once my doctor gave me the signed requisition form for MODY testing it took me a while to figure out the process. It turns out I needed to send it up to Athena Diagnostics and they get pre-approval (hopefully) from my insurance company and then ship out a special kit for the test. They also contact a subsidiary of Quest Diagnostics for the blood draw. The kit arrived today and I made an appointment for Monday. They will come to my office just like they did for @niccolo.
I’m still not sure how I feel about this process. I certainly wonder what the result will be and it will close the door on one of the more vexing questions about my diagnosis. But I’m really not sure about how I will end up feeling about knowing that I am either MODY or not. And I actually will have a chance to meet Siri Greeley a principle researcher at Kovler in early June. I may or may not have my results. I do have some questions for him.
I went to a local Quest lab for the blood draw, I’m surprised they’ll visit you personally, though I suppose with the insane margins built into Athena’s $6K monopoly-based fee, they could visit you in a helicopter and still make a profit.
It is interesting to think about what you’ll do with this information, regardless of how it turns out. I also still think it’s crucial, as I suggested in a previous post, to supplement the information with info about 1) your endogenous insulin production capacity, via a non-fasting or even stimulated c-peptide or OGTT w insulin levels, and 2) your level of insulin resistance, via an OGTT w insulin levels or perhaps inferred more indirectly, e.g. via by measuring how much a unit of insulin drops your BGs.
In my case, I produce plenty of insulin when sufficiently stimulated (impaired by my GCK mutation when I only consume modest carb loads) and I use what insulin is available to me extremely efficiently. Those are consistent with a “pure” GCK-MODY gene defect case and no simultaneous T2, or for that matter T1, dynamics, at least at present.
Sorry, I thought they actually came out and did your blood draw. I live in a metropolitan area and apparently they have regular routes, so visiting my office is not a problem. After all as your said, I’m sure they will make their money. Aetna said that approved claims are covered at 100% if it is a doctor ordered test.
Of course there is always the question about what you will do with the information. I certainly may end up with changes in my treatment regime (I am currently on MDI), but perhaps a more important part of this is answering unasked questions about my family. For my children who would have a chance of having undiagnosed GCK-MODY. For my brother who has diabetes and his children and my cousins whose father had diabetes.
ps. And you are right there is no reason to believe that MODY-GCK might not (and has not) occurred simultaneously with T1 or T2.
Can you send me a link to the exact referral form you asked your doctor to fill out or sign? My doctor has discussed it with me, but the conversation keeps ending with him saying “insurance generally doesn’t cover the test and the results wouldn’t change our treatment plan… So what’s the point”
If I could make it as simple as him just signing the form then someone else has to play then insurance game I’m sure he’d actually be interested
The company that does the genetic testing (and is in-network for my insurance) is [Athena Diagnostics]. There requisition form the [endo panel is here]. My doctor basically filled out the front stuff and told me to fill out the rest. There are two panels for MODY, one which tests MODY-1,2,3,4 and 5 and another which tests MODY8. My endo said to do them all.
I specifically check with my insurance policy ([Aetna Policy]) and called them to ask whether I needed pre-authorization and what my coverage would be. I was told that according to policy if “coded” properly it would be covered without question at 100%. But I dug into it a bit. Here is what the policy says:
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.