If I have any say in it, I’d rather not die today.
Here I sit, shivering and scared. Worried about what’s ahead as to my diabetes and the treatments I’m able to afford. My vision is slightly fuzzy and I’m sure that if I tried to stand up right now, I’d topple over thanks to the hypoglycemia I am experiencing.
My blood sugar is 43.
That’s what my CGM says and the arrow is pointing downward. My meter pegs me at 54.
Either way, that’s dangerously Low.
This is the second time in a day I’ve been this low.
Of course I didn’t cause these Lows intentionally. It’s not as if I don’t pay attention or put a huge amount of effort into my BG management every day of my life. But mistakes and unintended consequences happen. Sometimes twice in one day. And with the hypoglycemia unawareness I experience after 32 years with this disease, I thank God for the CGM technology that can alert to what’s happening — before my mind becomes totally useless.
But for these two most recent Lows, even though my CGM has alerted me to the danger, I’m not immediately guzzling down juice or fast-acting carbs to boost my blood sugar. Instead, I will stay in this danger zone a bit longer.
Why not treat, you ask?
Because you, Blue Care Network, seem to believe that’s not necessary.
You sent me a letter in late February denying my request (actually it was the request of a third-party distributor you force me to use) for CGM sensors. My wife and I just joined this HMO plan at the start of the year, so you have no records on file for me — no history of the many boxes of CGM sensors I’ve received over the past three years using this device.
OK, I get that you’re asking for additional documentation on my need for this technology and I’m willing to accept it’s a legit ask.
But I’m a little confused about what exactly you want from me.
You wrote that the insurance policy requires “recurrent unexplained severe symptoms of low blood sugar that puts themselves or others at risk.”
So in your opinion, I must demonstrate repeated hypos in order to prove that I actually need a CGM? Despite the fact I’ve been using a CGM for 3 years now, and it’s saved my life a number of times? It has helped keep me safe with better blood sugars, but that’s not good enough for you? Rather, if I’m staying in range and doing OK, that demonstrates that my diabetes must be “fixed” and I’m therefore no longer in need of this technology?
This is so ass-backwards, as we patients have been saying for years. The only way to get coverage for a CGM, or an insulin pump in many cases, is to provide proof that we are doing crappy, with out-of-control BG levels.
I explained this to a very nice Managed Care representative on the phone recently, telling her that the whole reason I was on a CGM was to address my glycemic variability that creates a roller-coaster effect of blood sugars between 40 and 400.
Even if I haven’t had this specific Low pattern recently, my Highs are evident in my D-data and my doctor’s notes clearly indicate that I’m “hypo unaware” most of the time, particularly at night when there’s more danger of falling asleep and not being able to wake up to treat a low blood sugar.
You tell me that you’d prefer documentation showing these patterns prior to my CGM use, years ago… I explained that I’ve switched doctors a few times, and anyway it probably wouldn’t be possible to obtain records from 2010 showing these pre-CGM patterns.
Instead, you offered that my doctor can appeal the decision by submitting more data on why this is necessary. Of course I plan to implore my endo do that soon. I know how this insurance process works, and understand that roughly 39-59% of appeals do result in a reversal of the original denial.
Still, I wonder: Why put us through this paper chase? And why don’t High blood sugars also factor into this decision-making?
On the second point, it’s not as if high blood sugars aren’t without dangers, from DKA to higher risk of long-term complications that are much more costly to the health care system, and your insurance policy.
And it’s not as if there aren’t studies showing that CGM reduces costs in diabetes care over time, not to mention the reduction in hospitalizations and emergency care related to hypoglycemia.
CGM coverage matters, and it’s faulty logic to make us show severe and recurring Low symptoms just to get covered for this technology.
Sure, I understand you want to make sure that money isn’t being wasted on expensive technology that may turn out to be unnecessary or unused. I get it.
But in so many cases like mine, the doctor and patient have already determined this tool is necessary. The clinical judgement you use in approving or denying coverage simply doesn’t make sense — either medically or economically.
Reluctantly, I will follow your rules and demonstrate my need for this.
This isn’t the 80s or the 90s, so it’s not as easy to “lie” about glucose data anymore. Gone are the days of just writing in fake numbers to appease the doctor. Now, we have devices that can be downloaded — and my endo has told me specifically that insurers are more frequently asking for actual downloaded data before approving medical claims.
This forces me to demonstrate that Lows are part of my life with diabetes… even if they aren’t as regular as they once were before my CGM. I find that instead of staying safe and treating my hypos immediately, I’ll let them linger for a bit — just long enough for my CGM and fingersticks to reflect those “Below 55” numbers. How sad is that?!
That severe Low last night around midnight was just one example. It was probably due to an inaccurate carb count and insulin dose from my higher protein dinner earlier that evening. My blood sugar plummeted to 48 according to my CGM, and I took a meter fingerstick to back up my dip below 55 mg/dL.
I felt cold to the bone, the kind of chill you get when you have the flu and just can’t do anything to warm up. My vision was blurry, and my legs were weak when I tried to stand. So, I just sat patiently.
Just about the time my cognitive abilities started to cloud and my BGs were in the still in the low 40s, I caved and guzzled an orange juice — along with cookies and a few glucose tabs.
Right now, it’s mid-morning on a weekday. I am alone because my wife works outside our house and I work remotely from our home office. I can see my CGM trend arrow going down, and know that shiver is coming again…
I’ve had my share of nasty hypo experiences during my 3+ decades of living with type 1 — moments when I couldn’t walk, or think, or function. When I hallucinated and screamed at my parents and my wife, thinking they were aliens or robot overlords trying to hurt me.
Years ago, I experienced a low when driving my car. I was lucky then that I didn’t die, and that motivated me to get a CGM. Even with this added security, I still get scared about hypos.
Because I am not ready to die. I am 37 years old, and there is a lot I’ve not yet accomplished in my life. This isn’t my time.
I know that I am lucky to have had access to a CGM, to help me avoid the worst. And it’s so OUTRAGEOUS to think that the only way I can keep this tool is by demonstrating that it’s essentially NOT helping me, and that I’m doing poorly. WTF?
My concern is also for the many others who receive similar insurance denials, but may not know enough to file an appeal and fight the insurance company. They end up giving up the possibility of having a CGM, and living in the dark like all PWDs had to in the “bad old days.”
Some may not ever wake up from a nighttime low, while others will go high and end up in the hospital for high blood sugars and long-term complications.
Why make it so very difficult for patients to take advantage of these powerful new treatment tools?
And this issue actually extends beyond CGM coverage — into the high costs the industry charges for insulin that keeps us alive, the brand of meters we want to use and even how many test strips we need on a regular basis. All of this overlaps as a huge roadblock to optimal diabetes care in the U.S. To say it’s a shame is an understatement.
This is why I am scared, Blue Care Network. Because I do not want to die before my time, or experience complications that could be avoided, and because I’m not alone in this. What truly horrifies me is that although I know there are human beings behind this process of decision-making, it seems these monolithic organizations (insurance and industry) are so driven by profit that they’d rather let patients be exposed to these life-endangering symptoms than do what they can to help us stay alive and healthy.
I like to think I have a say in staying alive and healthy, but as an individual patient, I’m often not sure that’s really the case.
* UPDATE 3/18/16 *
One week after penning this letter and sending it to my insurance company, along with phone calls to their executive offices, I received a call notifying me that my request for pre-authorization on CGM sensors had been approved. Neither I nor my doctor had yet filed an appeal. The HMO supervisor who phoned me told me she’d received a call to look at my file. And it was apparently her who determined that, because I’d already been using CGM sensors for years, they did not need the “typical” information because what I had on file was good enough. My pre-auth is now good for the next year for when ordering CGM sensors. Thank you, social media!