LADA and Dexcom Denial/Appeal

Just joined as I wanted feed back if anyone has won an insurance battle with reimbursement with a CGM with having LADA.

My diagnosis story:

Of course misdiagnosed as type 2 in Feb 2014, after experiencing a Norwalk Virus outbreak on a cruise ship. I actually work in a medical center on a cruise ship. I had a urinary tract infection but when my urine was tested two weeks after that diagnosis I had sugar in my urine and then a finger stick in the 200s. First HGA1C was 7.8, got the standard treatment plan of metformin and check your sugar twice a day. No real symptoms besides a bit of fatigue and I was slowly losing weight and was almost anorexic at the time.

So when my ship contract ended made an appointment with my internist as I was in disbelief as how could I be a type 2 diabetic being a bit anorexic. Did repeat lab work which was a little lower than the first HGA1C, he made some unfortunate comment that I was not even really a diabetic and to lay off eating too much sugar. The whole time I was like really how is this diagnosis even possible?? I consulted my insurance wellness program to get a dietitian advice as to how can I gain weight and keep my sugars in control. Not much help there but got the standard how much grams of carbs per meal that is recommended.

So when I followed up with my internist 3 months later my HGA1C went down to 6.4, I didn’t really do anything different but just avoided the cakes, cookies, obvious carbs that I did not eat too much previously. I hated taking the large white metformin pills. I ended up asking one of my other healthcare providers for a psychologist consult as I totally needed to talk to someone about how is this diagnosis even possible.

Luckily I was having an unusual acne problem and went to see my dermatologist who ran labs that then justified an endocrinologist. Then there was the problem of months before an appointment could be made. I eventually found one in a reasonable time frame but on a different island than I live. Then eventually got the correct diagnosis. My HGA1C was under 7, I knew that insulin was the treatment plan but was not going to start injecting myself without data.

I then signed up for diabetes education classes but they are all geared to type 2 not type 1. Think I found out about Dexcom from Diabetes forecast magazine and was I want one of those. Basically was in a monitoring phase with my endocrinologist, so what better device would be able to monitor my blood sugars. I knew I would have to test before/after eating with insulin and the thought of testing >6+ a day just was not something I was going to do to myself. I needed actual proof that I needed to be on insulin. Who would want to blindly inject themselves with a medicine that could possibly put one in a coma without data is insane! So I did the paper work and my endocrinologist signed it. Dexcom would not file with my insurance. I just decided it was just too important of a device and just paid for it myself and would fight it out with the insurance company.

So what I learned with having a dexcom prior to going on insulin is that diet only goes so far, what your body decides to do is another story. I did have an under 7 HGA1C after 3 months using the device as I knew morning had regular spikes and just made sure to do the least amount of carbs in the morning. Once my sugars would go high and not come down it was time to go on insulin.

Now my insurance pays for my dexcom and I just started an Omnipod but will be using it sporadically as I don’t use the minimum amount that the pod fills. It is a waste of insulin but taking a break from the injections is such a relief.

The recent saga with the Dexcom denial is that two internists reviewed my medical records and came up that there was no actual data that this device is even worthy and then stated false information about how my doctor did not recommend insulin at the time, but he did and I chose to try Dexcom to see if I could prolong having to go on insulin, to only have proof that insulin is what I needed to go on. Who really wants to give into injections for the rest of their life?

Anyone in the same boat as I? or am I the only crazy person who wanted data before going on insulin?

It sounds like your doctors either don’t support your CGM or are not competent to write a proper letter of medical necessity. At least in the case of my insurance a CGM is considered medically necessary in anyone 25 years or older with Type 1 who has a good record of checking their blood sugars. Otherwise you can justify it with hypoglycemia unawareness or repeated problems with lows or highs. Dexcom has a proven track record of helping doctors prepare the necessary support for getting a Dexcom. If you have Dexcom work with your doctor it is unlikely you would be denied (at least with my insurance) given what you have described. But if your doctor is not supportive and/or not competent to follow through then you have a problem and should probably get a new doctor.

My endo office is great and I am sure they wrote a letter of medical necessity, the problem is the criteria that insurance companies have for a CGM is really only for the extreme cases and insurance will not pay for it if you are in a honeymoon period like I was. I feel fine at a 300 BG and equally fine at a 14, unless I end up in an ER to show medical necessity I am pretty just SOL.

As for the doctor I work with who misdiagnosed me and my internist who just went with the standard treatment for adults with diabetes it just shows that unless you are an extreme case and end with DKA or some acute episode, doctors will not listen to your concerns. I don’t blame either of the doctors for misdiagnosis as one of the newer doctors I worked with who was in his early 70s told me I was the first one he knew with my diagnosis so it really is not all that common. I now only see my internist for particular issues and see a APRN diabetes specialist for diabetes issues as my endo does not even live on the same island as I do. Doctors for me are to get the correct diagnosis and treatment plan, unfortunately not to really have the standard doctor patient relationship (does that even exist anymore?).

I have to tell you. It is important that your doctor files the insurance paperwork properly. If you are coded as a type 2 or other type of diabetes you may have a very different outcome with insurance. It is important to check which diagnostic codes your doctor is using in the filing and make sure you understand the insurance policies. The code for Type 1 is E10 (in ICD-10). The code for Type 2 is E11, you may not be approved with this code. If your doctor codes you with “OTHER” diabetes such as E08, E09 or E13 you should expect to have insurance reject you for a CGM. Also, have you read your insurance clinical policies concerning CGM? Here is the policy from my insurance company.