We all knew it was going to happen eventually. Now, the time has come.

My third-party diabetes supply company has put a policy in place to limit the number of test strips I'm allowed each month, as a direct result of my being on a Dexcom G5 continuous glucose monitor.

The reasoning for this policy stems directly from the FDA's decision in late 2016 to allow CGM data to be used instead of fingerstick test results in making medication dosing and other treatment decisions.

The supply company that I'm required by my insurer to use for all D-supplies has finally gotten wind of this "replace fingersticks" language, and as a result is trying to cap the number of glucose test strips that Dexcom CGM users can get each month.

From their perspective, this might seem logical. But as someone who's struggled with type 1 diabetes since the age of 5, I know better. I'm not OK with this, and am fighting this flawed policy.

As all of us T1Ds who use CGM know that sick days, lost data signals, accuracy gaps, and skin irritations that interfere with sensor wear are just some of the reasons why we need to be able to fall back on our traditional glucose meters at any moment -- sometimes multiple times a day.

It is not only my opinion, but my doctor's orders that I need access to more than just two fingerstick tests a day, even when I'm wearing the Dexcom CGM. So I'm doing battle not only for my own right to get more strips as needed, but for anyone who might be in the same situation, affected by this crappy policy.

Here's how it all went down.

Dexcom Designation Sparks Policy Change

I have a Blue Cross / Blue Shield of Michigan HMO insurance plan (Blue Care Network) that requires me to go through a Michigan-based supply company. I can't get my supplies directly from Dexcom (as they're based in California), or even at my local pharmacy for more than a month's worth at a time. So this is my reality.

Over the past several months, I'd gone about re-ordering more Dexcom CGM sensors, a pair of new G5 transmitters, and their new touchscreen receiver. Those were three separate orders placed at different times based on warranties, so they were scattered over the first half of 2018.

Meanwhile, I was running out of fingerstick test strips so my endo wrote a new prescription for the needed amount. No problem, right?

Wrong. I never heard a peep about the order and it never showed up, so I phoned the supply company and learned they had "flagged" me for using the Dexcom G5 CGM, which has been FDA-designated as a "therapeutic CGM" device allowing it to be used for treatment and insulin dosing decisions. What that means is, the accuracy is now considered on par with fingerstick tests. Medicare policy-makers also accepted this new designation.

At the time of that FDA decision, many of us in the D-Community who were (and remain now) excited about this "dosing claim" were also cautioning that it could be used as a basis to limit BG strips. If you don't know the details of diabetes management, it's pretty much an easy pass for policy-makers to save money by pulling back on coverage for glucose test strips.

Though it took more than a year, my third-party supplier eventually got to that place.

A Daily Cap on Glucose Testing

As a Dexcom G5 user, I was told that my BG strips were now capped at two per day, or a total of four boxes to last me 90 days.

I objected, saying my doctor had written an Rx specifically for a higher amount. I've been testing 4-6 times a day, especially when my CGM was off my body at times.

The customer service rep told me this was a policy dictated by my insurance carrier and it would have to be reviewed by  a supervisor. I thanked her and hung up. Hmmm...

Over the course of the next week, I spent a generous amount of time making phone calls between to both companies, and was actually able to confirm that my insurer Blue Care Network had not dictated this two-strips-only policy related to my Dexcom G5 use. I also obtained a more current prescription from my endo's office for the 4x/day amount (360 strips for 90 days). I also penned a personal letter to my third-party supply company about my policy-level concerns.

Eventually, I was able to get a supervisor of a supervisor's OK to allow me more strips from the supplier.

But what a lot of work and time went into that! Talk about putting the burden on the patient to get the meds and treatment they need!

I'm deeply concerned for others who will surely be impacted by this blanket policy -- especially if they believe it was put in place by their insurer.

And knowing that we now have both the Dexcom G6 and Abbott FreeStyle Libre Flash systems that require no calibrations at all, I am fully aware that this current G5-related fight for test strips is setting the stage for the next level conflict; payers will very likely try to stop covering strips at all in the erroneous belief that strips are only ever needed for calibration purposes. Ugh.

My Override/Policy Change Letter

During our conversations, a manager at my third-party-supplier company told me I'm the first person who has raised these issues with them.

They also seemed rather surprised to hear about a possible need for more strips, based on what they've read about the Dexcom CGM and the regulatory designations. This was a teaching moment if there ever was one!

So I obtained an email address and sent along my policy letter, hoping that it helps to inform this company about the illness they are supporting, and even results in change.

To me, this is all in the family of forced"non-medical switching" -- a situation in which payers disregard physician's prescriptions and push certain meds or treatment parameters on patients based on their own bottom lines. Those of of who live with life-threatening conditions are the big losers here, because no one is focused on our individual medical necessities. That's the big picture issue I am fighting against here.

Here are the main points of the letter that I sent:

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On an individual level and at a broader policy level, this blanket limitation on test strips contradicts my physician’s prescription for what is medically necessary. 

Per Dexcom’s G5 User Guide, “The sensor glucose reading can be different from your expectations and symptoms. In this case, wash your hands and take a fingerstick blood glucose measurement with your BG meter to confirm your expectations and symptoms.” 

In my situation, my endocrinologist has prescribed the following: 4 test strips a day, or 360 total for a 90-day prescription (compared to your suggested 180-day supply for those three months).

There are several reasons for this, as documented in my physician’s chart notes:

  • This amount accounts for not only my two required calibrations per day with the Dexcom G5, but times when I do not use my Dexcom G5 and other situations such as illness, lost data signals, and backups for hypoglycemia/hyperglycemia when clinical data shows the Dexcom G5 is not as accurate.
  • On average of 2-3 times per week, I experience “compression lows” as a result of rolling over and sleeping on my Dexcom G5 sensor. As a result, when I receive a Low alert via CGM, this requires me to confirm the CGM data with a fingerstick to ensure accuracy.
  • Additionally, the Dexcom G5 is FDA-approved for seven days of wear – or 28 days for a box of four sensors each month. That means there are at least 6-8 additional fingersticks per each 90-month period not factored into this policy on test strips.

Clearly, the FDA and subsequent Medicare classification does not require a Dexcom G5 to be used instead of fingersticks. Instead, both federal agencies state that a patient may use the Dexcom G5 instead of fingersticks to make treatment decisions. Additionally, both the product manufacturer and the federal agencies recognize that accuracy may vary on the Dexcom G5 and that additional fingersticks may be necessary or preferred at times – such as those noted above.

Take my glucose readings today – my properly-calibrated Dexcom G5 that has been in place for three days displayed 226 mg/dL, while a fingerstick showed 177 mg/dL. Had I dosed insulin off the CGM reading, I likely would have dropped into the dangerous hypoglycemic range. This discrepancy is not an uncommon occurrence.

While some individuals may decide with their physicians’ guidance that two test strips a day is sufficient when using a Dexcom G5, that is a patient-physician choice and should not be one dictated by an insurance provider or third-party supply distributor.

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As noted, I got the amount of strips that I need.

So, that's my story.

Maybe this particular battle is won, but certainly the so-called "war" is far from finished.

As noted, many of us in the D-Community saw this coming. It took longer than expected, but I'm sure others will face similar obstacles soon (if they haven't already).

Here's to fighting for what we need, and making sure our doctors are the ones determining our medical needs -- not blanket policies that try to cut corners and treat us as "one size fits all" textbook examples of living with diabetes.