You're not covered any more

Mental and Emotional Wellness
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Those of us that live in the US live in a medical economic system of “haves” and “have-nots.” I’ve lived with diabetes for almost 32 years and for that entire time I was lucky enough to qualify for medical insurance coverage. I’m well aware of the people who do not have access to the things I take for granted: all the modern insulin I need, a generous supply of test strips, and for the last six years, a continuous glucose monitor or CGM system. Without medical insurance helping me to pay for these things, I could only afford to pay out-of-pocket for a small percentage of these things.

When I retired and went on Medicare, I realized that Medicare does not cover any CGM. I have come to rely heavily on my CGM system. I wear it 24/7/365 and consider it the next most important contributor to the quality of my life after insulin. This CGM has permitted me to actually safely spend about 80% of my time in range, 65-140 mg/dl. It wakes me up when I’m low and prevents the inevitable BG bounce and multi-hour hyperglycemia that follows untreated lows while sleeping.

The gut punch

Luckily for me, my Medicare supplement plan that I earned as a result of a 25-year career with a large company, does cover CGMs on a 80/20 percentage split. This morning, however, I received a phone call from my CGM supplier telling me that my insurance no longer covers my CGM supplies. This gut punch sent me reeling. I couldn’t believe what I was hearing. I felt panicked and struggled to maintain my wits.

Since the customer service representative could not answer some of my pointed questions about this, I asked to be put through to the department of the company that deals with insurance claims. Company policy prevented her from doing this. I knew this issue was above her pay grade and I knew she was just a conduit to deliver this message to me. I was still infuriated that I could not directly talk with the person in the company that could answer my detailed questions. I gave up pursuing this effort and told the rep that I’d call my insurance company and then get back in touch with them.

Frightening perspective

I live alone. I know the incredibly helpful role that my CGM use plays not only in my health but also my personal safety. Just this morning at 2:00 my CGM woke me up with a 55 mg/dl alarm. I must have slept through the 70 mg/dl alarm. That alarm permitted me to metabolically recover in a timely and safe fashion. I also know that I probably could not afford to pay for CGM supplies out of pocket. One of the key fundamental assumptions of my retirement financial plan now crumbled in front of me. My mind raced looking for a way out. An unhealthy cascade of hormones spooled me up into fight or flight mode with no one to fight and no where to flee. I was angry, irritated, and most of all vulnerable.

A reprieve

I called my insurance company to verify this reality. With tremendous relief I found out that my policy had not changed at all and they do still cover all my CGM supplies. Deep breath – I was so relieved!

I quickly phoned my CGM supplier and straightened out what was an internal company communication fiasco. I’m sure the customer service rep felt stressed out but she just communicated what she was told. I confirmed that I had another 12 sensors in the pipeline with the usual 80/20 split.

What I learned from this drama was what it feels like, at least for a half hour, to be without access to the tools needed to deal well with my diabetes. I have a new respect for what some of my diabetic brothers and sisters deal with for much, much longer than 30 minutes. The momentary reality of losing my CGM provided me just a glimpse, albeit a frightening one, that is hidden from all the medical access “haves” in this country. The medical access system we use in the US is deplorable. I never want to experience again what I felt this morning. No one should ever have to face that foreboding sense of helplessness and vulnerability.

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Enlites are roughly $50 each, self-pay, in the US. I can use them for up to 25 days each, with 12 generally being the shortest time when installed in my arm. Abodomen placements are what ruin the Enlite experience for US residents that are told that’s the only FDA approved site. What a crock.

I go on AARP plan F and Drug Coverage Preferred in a few days. So I will be self-paying for Enlites when I run out. The cost for me goes from $19.xx to ~$50 each. A bummer, but I’ll cutback elsewhere if I have to, because I feel naked without a sensor, as I am very active and need a “heads-up” to what my bg’s are doing. Dang I love these things (when the work–when they don’t I swear at them as if they are the most evil item in the world. :slight_smile: )

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I seem to remember a $175 price for the Dex sensors. Does Medtronic give out of pocket payers a price break?

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45% discount. I verified that yesterday (for the second time in the last few weeks) with MM.

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If Dexcom has a similar policy, that would’ve at least softened the blow for me if this went the other way. I always thought giving the insurance companies a deep discount while making the uninsured pay full price to be unfair.

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the reality is that self payers get a discount. I don’t know exactly what price insurance pays, but OTOH, I don’t care; all I care about is my copay.

I’d get on the phone with Dexcom if I were you.

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I’m all squared away with Dexcom. The 80/20 split remains, thank goodness!

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so what is your OOP?

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Looking back at my records, I pay about $172 for 12 sensors.

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cheaper than mine

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Terry–I can only imagine, my friend. That’s the kind of 1/2 hour that can age one a few years. I’m very glad it worked out…Though now that I think of it, I find the possibility of insurance disruptions to be a sort of ostinato of anxiety that underlies one’s whole life at a certain point, don’t you?

We had one that lasted almost a week and it was terrifying. My insurance for 25 years was under my husband’s state public employees plan and was excellent. But I aged into Medicare about a year before he will, so the state had to activate my Medicare (with Kaiser’s senior advantage), still through their plan, while not de-activating my husband’s coverage. Of course my coverage continued uninterrupted while my husband’s was cancelled–which he found out when he showed up for one of those scheduled-far-in-advance periodontal cleanings…Sigh…We got it fixed, but it is a nightmare for so many of us, I know.

BTW (hehe–I keep trying out acronyms as I learn them, though the one that means the most to me is still COIK----Clear Only If Known)----Your description of your process for resolving the issue is clear and very helpful—thanks!..And blessings, as ever…Judith

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OK, Judith. I had to go and look up “ostinato.”

In music, an ostinato [ostiˈnaːto] (derived from Italian: stubborn, compare English: ‘obstinate’) is a motif or phrase that persistently repeats in the same musical voice, usually at the same pitch. [from Wikipedia]

Yes, the uncertainty of the fearful phrase, “you’re not covered” is a repetitive motif sadly played out every day in the US. Our ability to secure coverage and the corporate ability to change or terminate it keeps us off balance and always worried, to some extent, if we’ll have medical access when we really need it. I can’t even begin to imagine the nightmare scenario of a doctor or hospital informing the parents of a seriously sick child that “you’re not covered.”

Some things lose their punch a bit until you are the target.

Thanks for your comment.

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A gut punch for sure - although I do have to admit I like @Judith_in_Portland’s ostinato better.

I am behind you in a similar boat, waiting to see what my retirement from a big company brings when I reach Medicare eligibility in approx. 4 years. Today, I would be covered, but each year has brought either increased OOP costs, or diminished benefits, or both.

In the meantime, I hope you will contact your Senators and Congressperson and request they co-sponsor the Medicare CGM Access Act of 2015. (This link takes you to the DPAC’s letter generating site. No fundraising required!)

This is important for many reasons. Foremost to me is all the T1Ds who are truly in the boat you thought you were in, Terry. But another is as CGMs move toward integration into an Artificial/Bionic Pancreas, many seniors will be left behind without this legislation.

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You’re right, @YogaO. It’s good to write about this stuff, better to take action. I will follow your suggestion. Thanks for the prompt!

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I’m glad this worked out ok Terry, too bad you had to go through all that stress. I was stressed when I accidentally wore my dex receiver into a pool and ruined it recently. Fortunately I had insured it so I got another one quickly. I wonder if there is another way to apply for some supplemental insurance if the access act doesn’t go through? Does your dog wake you up at night if you have a low? I have set my dex to vibrate the past two days because it is annoying and stressing me so much lately and it’s just as loud practically as with sound, lol. The beep for a 50 low didn’t wake me for a while when I slept today. I was about 20 points higher than it thought so all was ok.

I’m hoping that there will be a new, hopefully much cheaper sensor/cgm soon, maybe one that can be worn longer and which is under the skin too.

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Not on Medicare, but I had a similar experience recently after the July 1 Formulary Update at my insurance company. The sent me letters letting me know that my insulin would no longer be covered unless I went thru a “Step program” with Humalog – to which I have an allergic reaction! Despite having that information on file, they were insisting I try Humalog for three months. In addition, they told me that because my Dx is T2D, I would no longer be able to get Dexcom supplies thru the pharmacy, but would have to go thru DME (higher co-pay and separate $1500 deductible) – And would have to go thru an approval process again. Knowing that the DME department already refused my Dexcom twice, i did not expect that to go well. I was left worrying and waiting for the next letter - for my pump supplies…

I contacted my boss and the insurance broker he uses to try and straighten this out. For several weeks it looked like neither one of them would have a solution via insurance (my boss eventually offered to pay for me Dexcom supplies out of pocket if necessary!).

In the end, I got a call from a VP of small business sales at the company who told me to tell my doctor to just put thru all new prior approval forms, and he would see what could be done if anything gets rejected. Amazingly, all the approvals came within AN HOUR of the forms being sent. Since their normal approval process takes 5-15 business days, I have to imagine that this VP intervened in some way.

For now, it all worked out for me in the end, but I am expecting to have to go thru the same process every year. Fun?

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NOT!

This is a perfect example of the “hidden” costs of having a chronic disease. It’s not just the time you, your doctor, your boss, the insurance agent, etc. have to spend, it’s the psychological anxiety; the waiting for the other shoe to drop; the fear that regardless of how well (or poorly) you are managing the disease, that your tools will suddenly be yanked away.

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right now I’m trying to build myself up, steel myself up, to make a call I shouldn’t have to make to my insurance. they always make me cry, and I’m tired and not firing on all cylinders today from lack of sleep.

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Yes, yes yes. Also yes.

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Thanks for the response @meee. Managing the diabetes supply chain is not an immediately obvious burden of diabetes. I have to deliberately control my strongly held sensibilities and deal with front line customer service people who have little authority, often ignorant of the realities of living with diabetes, and a slave to company policies. I have to keep telling myself that they are probably working a job they don’t particularly like and are probably more sympathetic with my situation than they can say. I imagine that many of these people are college educated and trying to pay off onerous college debt keeping the job that pays the bills wishing they could follow their career passions.

The problem with Medicare supplemental insurance programs is this. Almost every policy applies this eligibility rule: if Medicare covers then they will cover, if Medicare doesn’t cover then they won’t cover either. I am lucky that my retirement benefit supplemental insurance doesn’t use this eligibility rule. It covers in cases when Medicare doesn’t. It’s weak in other ways and I do pay a significant monthly premium for this coverage.

My dog wakes me up sometimes when I’m low. He’s not 100%, that’s why I’m a firm believer in multiple redundant ways to insure personal safety with diabetes. It’s why I fingerstick an average of 14 times/day even though I wear a CGM. I can still get caught with a surprise low when all these systems let me down. I still would not give up on any of them, most of all my constant warm and furry partner, Norm.

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