Well, some of my experience is historical being a few years ago. I think the last contact I had with them was like two years ago when they rejected me for a study because I was using insulin. Maybe I will call them again.
I can certainly imagine that for a particular study their criteria included only non-insulin-using folks. Even though some MODY-2ers show up using insulin, since insulin appears to be relatively ineffective at changing their BGs, taking only non-insulin users probably increases the likelihood that one finds actual MODY-2ers. But I'm just speculating about the motivation for that criteria, and it doesn't really matter at this point.
Multiple people at Kovler have been tremendously helpful to me. Since I've heard a few stories of less positive experiences like yours, I suspect it's some combination of your having the bad luck to interact with less engaged folks there, you and others perhaps fitting the profile in which they're interested (rightly or wrongly) less than I apparently do, and the dynamics of those particular interactions.
The Kovler folks are academic researchers, and while they have both professional and personal motivations for supporting those with MODY-2, they also have limited bandwidth. But given the constraints under which they're presumably operating, I've been thrilled with how they've engaged me. And I'm making an effort to reciprocate and provide them with useful information, which hopefully helps them and indirectly perhaps others down the road, too.
I agree it's worth being mindful of how complicated our bodies are, but that doesn't mean that simplifying metrics--various ways of measuring blood sugar being one of them--don't have their place in diagnosis and treatment.
My sister says I need to find a new hobby. :) Though, to be fair, I'm still here, and otherwise engaging on this topic for now.
And thank you!
simplistic responses vs simplifying are two different animals for me ;)
a new "hobby"?! lol
Just got my first post-insulin A1c back. My last A1c while on a full pump-delivered insulin regimen was 6.2, my A1cs have bounced around between 5.7 and 6.2 since I was diagnosed in 2002, with a gradual upward trend.
My new A1c, taken almost four months after I took my last drop of exogenous insulin, was 6.4. This was taken just after I spent 5 weeks traveling for work, a period of time when I ate somewhat more carbs than usual and exercised somewhat less than usual.
So this strikes me as rather good news, an 0.2 increase in A1c (probably more like 0.1 if you take out the effects of five weeks of travel) is an awfully modest price to pay for being completely off insulin and avoiding the sporadic lows that necessarily come with insulin use, especially in the context of regular intense exercise.
That said, this doesnât strike me as a get-out-of-jail-free card. An A1c of 6.4 suggests an average blood sugar of about 137 mg/dl, and thatâs a higher number than Iâm comfortable with. Those numbers are at most associated with extremely modest complications in MODY-2 patients, but the evidence is a bit thin on whether MODY-2 is somehow self-protective of the consequences of modestly elevated sugars or whether MODY-2 patients experience modest complication rates simply because their blood sugars are only modestly elevated and donât tend to worsen in the way that more ânormalâ diabeticsâ sugars do.
So Iâm going to play around with diet, and particular carbs, with the goal of both reducing that A1c a little and, maybe more importantly, curbing post-meal spikes, even if theyâre only transient. And I will, of course, continue to monitor my A1cs. But I donât want to miss the good news of this result even while hedging my assessment of it a bit.
Finally, I want to say thank you to all of you who have and/or will continue to help me to grapple with these issues. Our grappling has been feisty at times, but even those with whom Iâve had real differences have helped me to better flesh out where I stand. I want to particular acknowledge @Brian_BSC, whoâs been a remarkably incisive interlocutor. Iâm a little sad that, given his recent test results, Brian and I wonât be buddies in the MODY-2 clubâand in part for selfish reasons, because I benefited tremendously from Brian applying himself in this areaâbut I really am grateful for his engagement.
And this is starting to read like an Oscar acceptance speech, so before I start thanking my non-existent agent, Iâll wrap it up now.
That is absolutely wonderful. The idea that you could drop insulin an achieve nearly the same A1c is great. I know that we feel like somewhat comrade in arms, and I will continue to be your ally in the MODY issue. Iâll follow through with you with the interview with Kovler. I just wonât personally be affected by MODY, but that doesnât mean that my heart is with you as someone affected by MODY and you should never ever feel you arenât someone who doesnât belong here. Everyone affected by diabetes belongs here.
My greatest personal fear was that I would end up with an A1c of 8% and be MODY-2, and then what do I do? If you can maintain that same level of control with an A1c of 6.4%, would you feel comfortable that you had managed your blood sugar? I think that is reasonable to say that you did. I just want you to know that I still feel for anyone who has diabetes, I understand those with MODY and that you belong here. I hope that you will help me seek interviews with Kovler. There are others who are out there.
Thanks, friend, your support and engagement means a lot to me.
Happy to support your engagement with Kovler, including connecting you and brainstorming questions. I should note that Iâve had a ton of engagement with them, via email and phone, so they may be feeling some engagement-fatigue with regard to me these days. 
@Brian_BSC, did you ever clarify your insurance coverage situation?
It looks like Iâm going to get screwed over, Athena Diagnostics told me I was fully covered, but it turns out theyâre out of network and the insuranceâs âmaximum allowable amountâ is well below their list price, all of which theyâre now billing me.
The charitable interpretation is that the representative with whom I spoke confused my Blue Cross/Blue Shield coverage with one of the BC/BS state plans for whom Athena is in network. My less charitable interpretation is that Athena misled me via omission rather than active falsehoods, by answering my questions about whether it was possible I might be on the hook for additional costs by noting that insurance would cover the full âmaximum allowable amount,â without clarifying that this amount was far less than the amount Athena actually billed for the service.
I donât think the fact that they apparently misled me, by omission or intentionally, is going to help me much. Had they been more transparent, I very likely would have canceled the testing. Given that the testing turned out to be helpful, one can certainly argue the cost is worthwhile, but itâs still a kick to the gut to be on the hook for thousands of dollars of unplanned expenses.
Wouldnât hurt to write a letter to Athena explaining that they had falsely assured you that your insurances covered their servicesand their⌠Maybe theyâll drop the bill. Itâs worth a shot.
Here it is, July 30th. I got my blood drawn on May 18th. The report date is June 5. Apparently they performed the test within two weeks far faster than I thought they would. And they actually never bothered to report the results to my doctor, I had to actually call them and request the results be sent. And here I sit, and no claim from Athena.
I actually called Aetna and asked whether Athena was in network and they gave me the specific response that if the order was coded correctly (using ICD-9 codes for Type 2) then the test was covered at 100%. So I expect to pay nothing, but I am interested in the cost and I will post it here.
That being said I also believe the health care system uses deceptive practices in their interactions with customers (patients). Costs are not transparent. This is a huge problem in hospitals but also in other parts of the industry. You are not told the costs up front, instead you are left âat risk.â And then you can be surprised with the costs that are presented as they can be all over the map. I routinely am shocked by the prices that Quest Diagnostics charges. For instance a Vitamin D test is billed to Aetna at $232.54. But the Aetna in network rate is $26.37. And make no mistake if you go out of network you will get a bill for $232. That is an order of magnitude difference. So you may have been given the âstreet priceâ which is a total fiction when in fact Athena might be reimbursed for in-network services at a much lower rate. This can make a $6,000 charge turn into a $600 charge, a huge difference.
I would urge you to take the position that you were deceived about the costs and that Athena should accept the in-network reimbursement. You asked for an in-network provider and they didnât give it to you, it is their mistake. After all, the in-network rate is what they would have gotten if you hadnât been misled, it is their routine reimbursement.
To their credit, after a few weeks, Athena Diagnostics acknowledged that their customer service representative was not sufficiently clear with me about the potential financial ramifications of proceeding with the tests, and have agreed to waive the remaining balance beyond what my insurance was willing to pay to an out-of-network provider. I actually wasnât expecting them to do so at this point, but Iâm definitely relieved not to be saddled with what would have been a very steep bill.
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My doctor just called and said she wants me to get the MODY Panel. Did you get it done? We are similar in Glucose. Wondered how you are and what youre taking? Did you ever get put on metformin?
The full MODY panel may not be necessary if your presentation suggests just one MODY subtype. Conversely, insurance may only be willing to cover one round, so some logic to just doing the full panel. Make sure you have insurance coverage, otherwise it could get very expensiveâeven if insurance covers it in full, that doesnât mean the amount the insurance considers reasonable is the amount Athena will accept. Get clarity from both the insurance and Athena on this up front, even if itâs a hassleâit could save you thousands of dollars.
Yes, I got it done and carry a previously unreported variant of GCK-MODY (MODY-2). I havenât taken any exogenous insulin in over a year. My A1c is only very marginally higher than it was on insulin.
Iâm not sure what you mean when you say our glucose is similar (A1c?), but that alone doesnât seem like a very compelling datapoint. In the absence of other diabetes dynamicsâMODY-2 patients have the same risk of simultaneously having more typical Type 1 or 2 diabetesâmedications should not have a meaningful effect on blood sugars, since the body will just upregulate. The good news is, this appears to have at worst minimal consequences.
No, I never took and donât take metforminâunless you simultaneously present with elevated insulin resistance, i.e. some degree of more typical Type 2 dynamics, I donât see why that medication would be warranted.
Good luck!
Hi. I know this is a very very old post but I read every single one of your posts. I hope you see this.
How are you doing now? Is your a1c still the same? Iâm suspecting have mody 2. Itâs making me feel extremely helpless and confused.
I think some diabetics get frustrated and confused because they donât see the forest for the trees. They spend years trying to figure out their type I, II, MODY, etc., rather than concentrating on what keeps them under control, including food, medicine, and exercise. I have been diabetic for over 35 years and still donât know my type. However, multiple daily injections of fast-acting insulin is the only medication that keeps me in tight control. My A1C range is 5.7-6.1. Long-acting insulin drives me into hypoglycemia, taking more than 1/2 unit. After taking all the tests over the years, Joslin decided I had to be MODY but they could not cover the cost of the full panel because Diabetes did not run in my family. I agreed to pay for the full MODY panel so we could all put my âtypeâ to rest. The panel came back negative for all the possible MODY variants, so I am still one of the very few patients worldwide nobody has been able to type and it does not bother me. I just balance my food, exercise and fast-acting (Humalog) insulin to keep me in control,
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