« A CGM Visual. | Main | Adding to the Dictionary. »

From Abby: Standards of Care.

Note From Kerri:  Lows suck.  Larry Bird blood sugars shouldn't be making appearances in the wee hours of the morning.  And not waking up right away for these kinds of lows can be terrifying.  Abby (the Person) writes about a low that left her reeling and the superhuman strength of her wonderful mom.

*   *   *

8:00pm – 276 mg/dL (no idea why)

10:30pm – 288 mg/dL (negative ketones, and the correction bolus that ruined everything - give me a minute to explain)

12:00am – 120 mg/dL (3/4 bolus for a snack, and to bed I went)

1:45am – 33mg/dL (awesome)

I know why this happened. When I took that second correction at 10:30 pm, I thought to myself, “I might go low from this, but I feel like crud, and I’ll just eat a snack before I go to bed.” And so I did: a very small bowl of Raisin Bran cereal, only bolusing for 3/4 of it, and off to bed I went with a blood sugar of 120 mg/dL, feeling like I avoided that low.

Feeling pretty dia-successful.

When I woke up at 1:45 am feeling a little warmer than usual, but with no other symptoms, I decided I should probably check. Moms are badass and can lift like a million times their own weight. Ants are cool, too.

33mg/dL. (Editor's note:  Whoa, Larry Bird) 

Defeated. You win tonight, diabetes. A 6oz juice and a 19g granola bar later, I lay back in bed. And that’s when things got scary: seeing stars, extreme sweating, nausea, crying (which is new to me, and frankly I’m not a fan). I grabbed the glucose tab bottle, and obviously it was brand new and had that cannot-open-without-a-chain-saw plastic thing under the lid.

By this point I was freaking out. I stumbled into my mom's room (yes, I’m 23 and I live with my mom; times are tough, people and I’m a full time college student with two jobs, don’t judge me) where she saw the tears and the shaking hands and presumably my face sans any sort of color. She grabbed the bottle and ripped the plastic off with that “my daughter is in danger” sort of strength that I still don’t understand. All I could manage to eat were three glucose tabs.

I really thought I was going to die, like straight up fall on the floor (only with a blood sugar probably in a safe range at this point) and just die. The re-check showed me a 66mg/dL. Then I got really frustrated because I was almost back in range but I had EVERY low blood sugar symptom on the face of the earth, only on steroids. (For some reason updating my Facebook status and texting a few friends at this point seemed like a grand idea.) This is not the first time I haven’t woken up until I was under 40mg/dL. I’m sure it won’t be the last, thanks to my lack of a continuous glucose monitor. Actually, I take that back … I have a CGM, but I hate it. I try it at least once a month, I do everything by the books, and if I get one or two readings that are within 20 points of my finger stick, it’s a miracle. I’ll be starting a 7-day-trial of the Dexcom soon, and I already have an email into my endocrinologist asking her for one of my own.

The point of my story is to ask this question:  Why aren’t CGMs a standard of care for diabetes? I bet if I asked my friends who have diabetes for similar stories, I’d get a boatful.  (Then I would send that full boat to insurance companies and ask them if they’d rather dish out a few hundred dollars every month for their patients to have sensors and stay safe, or keep refusing us, keep making it a huge hassle to achieve safety, and instead keep sending me 87 million boxes of test strips that expire before I even think about opening them.) 

The technology is here, but there is clearly nobody working for those insurance companies that knows the first thing about the fear I’ll have when trying to fall asleep tonight.

*   *   *

What makes me nuts is that people who want and need a continuous glucose monitoring system still can't find coverage through their insurance companies.  We've come such a long way, technologically-speaking, and it's frustrating when a fellow PWD can't readily access that technology.  What insurance battles are you fighting?

Comments

Sorry to hear about the 33 Abby, but I sure am glad that you live with your Mom - the superhero that she is! No judging, we all do what we have to do.

Insurance battles - where to begin? Gee, they wouldn't approve Novolog for my daughter who is 8 years old (been on it for two years, but it's not on THEIR formulary, go figure) fought and won that battle. Test strips - that would only be 4 flippin times a day when she tests on average 10-11. Still fighting that one. I asked which 4 times a day should I choose - the 2 am? the 7 am? the 8 pm? - they didn't have an answer for that. Oh, they don't pay for blood ketone strips for her. Ever try to make an 8 year old child pee at 3 am? it's not fun. Last but not least, no CGM for her, they will not pay for one. 'Not a covered DME' for her.

I swear they would rather deal with complications than pay for her to be healthy.

what drives me crazy is that i really, really want my son on a DexCom.. but they haven't been approved for Canada yet... even though they told us it would be ready in "the first part of 2010" and then "late 2010" and we're still waiting, ugh.

i worry about my son every night, and every day at school. a DexCom would go a looooong way to alleviating my fears.

Abby, so sorry about your epic low, but I'm sure glad you made it through okay. I usually start to feel the worst after I treat a low and am on my way to recovery. That's when the sweating and shaking starts. I've never understood it. Makes it even harder not to overtreat.

Abby, I have lived these very same moments!!!! Ugh, not alone and a big AMEN on the CGM thoughts!!! My Dexcom 7Plus is worth every penny, though it would be nice to not be in debt forever because of using it!

Abby, I'm so glad you made it through that terrible low.

Our insurance battle came right after my son was diagnosed. They denied his diabetes education. They claim it is self-help. What?! Since when is life or death self-help? What's even better is a work for a freakin' hospital!

I've been wearing Dexcom all the time since Sept 1, 2010, after wearing the minimed for a while in 2008 and finding it too painful.

It's great but it doesn't do a good job of waking me at night (not that Minimed did either, but Dex is even worse) and I've had some of my worst night time lows while on the CGMS.

It helps me more with daytime ones.

Insurance problems? Of course.

I've been a diabetic for 27 years. My 11 year old daughter for four years.

My major insurance headache is the refusal to pay for the HbA1c test (finger prick test! with instant results) in the pediatric endo's office (the office visit is covered by insurance) because it is billed by a separate entity that is not the Dr's office.

They want us to drive across town to a lab tech place, get a venous blood draw, and wait for those results to be delivered to the doctor. I doubt the insurance people are thinking "That diabetic girl costs us so much in getting her daily pokes to survive - let's make her get one more." - but it sure feels like it.

All this saves them money...right. Because tying up their customer service reps for hours on the phone is cheaper than a $36 test to keep my daughter healthy. And it is almost comical in how each rep has a different take on this - some say "This should be covered...let me see what happened here. Just let me reprocess this." Others say "Are you kidding? This will never be covered."


Somehow my own insurance problems don't even compare to this craziness.

Sorry to hear about that low. Very scary, I know. My insurance eventually covered most of my Dexcom, but I was ready to pay anything to get it before that point. I also wrote several letters comparing the costs of complications to the cost of a CGMS. That seemed to create a little bit of influence on the insurance company. Hang in there, keep fighting. The Dexcom is worth every penny I pay for it and the supplies. Not having to pay that cost would be great though.

Through an odd and too lengthy to tell state of affairs, my daughter started on dexcom but it's not covered by bc/bs illinois because she's under age 26. Even though the cost is outrageous, when her a1c went from 8.3 to 7.1 in one quarter and has hovered around 7 ever since, I pay.

I fought a battle yesterday not necessarily with my insurance company (although they were partly to blame), but with Medtronic.

I always order my test strips through Medtronic with my pump supplies because it's convenient, and minimizes the number of D bills that appear in my mailbox. I placed an order for all my supplies 3 weeks ago on Medtronic's website, and checked that chore of my list. Well, yesterday I went to change my pump site and realized I was dangerously low on supplies, and then realized that I hadn't heard a peep from Medtronic about my order. So, I called them and they said that my insurance (I recently switched insurance providers) had declined my order. But, the customer service guy instantly knew why my insurance had declined it- the test strips (turns out, I now have to order my test strips through my insurance company's mail order pharmacy, stupid, but whatever).

But the bigger problem- why didn't Medtronic CALL ME, EMAIL ME, or somehow notify me that there was this issue until I initiated the inquiry?!?!?! Especially if they knew exactly what was causing the order to be declined? SO FRUSTRATING! The thing that makes me so mad about them dropping the ball is that I was not wondering when that sweater I ordered 3 weeks ago was going to arrive... these are items that I rely on to stay alive.

Has anyone else experienced sub-par levels of customer service from Medtronic?

I wear the dexcom and it has certainly given me peace of mind. I was (and still am) terrified to sleep without it. I've had several instances where I didn't wake up when my blood sugar was low and ended up having a seizure in bed with my husband. When I finally realize what has happened, I wake up in the hospital. It is terrifying. When I got the dexcom, my insurance company wanted to see that I had had these types of episodes as reasons to provide coverage. How crazy is it that I had to survive those incidents just to get that device?!

Very scary! I fear situations like this for my little girl! Actually was just talking last night about requesting a trial with a Dexcom for her....I keep thinking it would help give me peace of mind that she's okay overnight and help us figure out what's going on in the time between her BG checks! Fortunately we haven't had to battle with insurance for anything....yet! I'm sure it's coming when we decide to proceed with a Dexcom. I work as a Case Manager for insurance and always try to work my "magic" to get things like this covered for my patients (and am almost always successful in arguing the point for my patients)...I'm hoping that I can find someone like me on the other end of our health insurance company (we carry it through my hubby's employer).

I will say I have no fights right now. Dexcom did a wonderful job of working with my insurance to get it 100% covered. It took a long time though. I had the outlook of "haven't had a CGM for the past 25 years, if I do not get one now it will not kill me."

Someone else said the Dexcom does not do a good job of waking them. Try setting it to vibrate when you go to bed. Leave it on a hard surface, like a nightstand, next to your head when you sleep. When mine goes of it sounds like Dex has decided to mine for gold in the middle of the night.

Glad to hear all is well after your scary low.

thank goodness for CGMs!!! I have had too many scary lows without it (and some with it). Insurance will pay for mine, but I have a HUGE deductible to pay every year, because it is not considered like the test strips where I just pay a copay, but a medical device. I had just paid off my deductible last year when I received my CGM and now I have to start over again. That is my only grievance, but the safety factor for myself and my family is worth every penny. If only the insurance companies could see the benefits.

The episode sounds frakking scary. Here's my short, unscientific take: when we eat, we need a certain amount of glucose in our digestive cells to process even pure sugar to get it into the bloodstream, and to figure out what to do with all the other hormones floating around, so while the peripheral bg will hover around what it was (or improve) the core bg will drop. (Unfortunately, I don't expect to be able to prove/disprove this theory until we get swallowable and/or implantable bg sensors for multiple parts of our body.)

That said, I think the insurance companies would rather have us die, quickly, so they don't have to spend out the extra money -- but the laws won't let them. Or, they realize that once complications have set in, you'll be on a different plan covered by a different reinsurance company or a different employer. (Note: ethics are NOT a part of this conversation -- just dollars and cents.) So they just provide the minimum necessary to work within the law, or whatever your employer has put aside money to provide for and tells the reinsurer to provide. (Remember that most companies are at least partly self-insured.)

Oh boy. I've had more middle of the night run-ins with Larry Bird than I care to count. But it's not me, it's my husband. I think I'm more terrified in the middle of the night than he is. I lay awake and listen to his breathing and wait for the convulsions to start. It's not fun. He's not on a pump or a CGM and is really against having anything "permanently attached" to his body. Sometimes I wish he would have both so I could have some help. Is that wrong?

I've had my fair share of scary middle of the night lows... before and after the CGMS. Sometimes I don't hear the alarm in the middle of the night or feel the vibrations... other times if I am not wearing it, I dont wake up till I am under 40.. thus the CGMS.

And the insurance battle with the CGMS... they denied me 3x, stating it was unneccesary. My endo wrote two appeals letters. I sent an 18 page letter outlining specifically how it was cost effective to pay for this now rather than pay for complications later. I also brought in the "newly married, want to have kids, need this to maintain the health and safety of my unborn child" thing... then they approved it. Took me 6 months and endless phone calls.

Abby, I am sorry for what you went through, but am so thankful for you sharing the experience. I will share this with my son, as many times he feels so frustrated and alone in these situations. This is a battle we face often with my T1 teenage son. Many sleepless nights of worry and frustration. It sucks!

Thank you so much for this post! I just got back from my endo talking to her about how my CGMS saves me countless times because I don't wake up until I'm in the low 40's or 30's too. It really should be required because I sleep right through, usually hubby hears the beeping after 20 minutes of my trying to lay on it and smother it so it will shut up because I have no clue what's going on. It's a terrifying feeling and a new kind of anxiety that at age 29 I'm having to find a way to live with, I hate it and I hate most of all that so many others feel the same way. Not only about the lows but those pesky glucose bottles that can NEVER BE OPENED when you really need them! Hang in there everyone :)

When I tried to obtain dex coverage last spring, I too ran into issues because I am under 26. My policy covers medical devices and supplies at 100%, which is great... But as a 20 yr old... Apparently the dexcom wasn't something I deserved. So I tweeted about it, including the company's name. About 24 hours later, I got a phone call. The company had seen my tweet, and they wanted to know why I was unhappy with their policies. I spouted off for about twenty minutes about the dangers of diabetes that exist regardless of age, the importance of preventative measures, and how ignorant the company was for failing to cover me for the dexcom. I don't think they really cared about those parts... But they did care that I was bad-mouthing their company, and I made it clear that I would continue to do so as publically as possible until they changed their policy. They said they'd "see what they could do." About a month later, I received a letter from the company encouraging me to try for coverage. I did, and they covered me 100%, despite my age. Their policy has not changed, but they made an exception, and I greatly appreciate. My A1C dropped from 8.7 to 7.1 in two months. So.... I suggest lobbying for what you want, regardless of your company's CGM (or whatever) policy... It's always possible they'll give you what you want.

Abby, I am so bummed to hear about your low. Please know and let your mom know that you have The Maher's cheering you on in Vermont...with "D", with school, with life! (((HUGS)))

I had a similar scary-middle-of-the-night-low a few weeks ago, right down to the delayed but extreme low symptoms. I'm glad you're OK and your Mom was there to help!

Abby, I feel for you with the night time lows- thats the whole reason why I got my pump and Dexcom, and thankfully I dont have any complaints about my insurance company (right now). In the last few months I have started on my Ping and CGM, and have had no problems with coverage!
I definitely feel the worst once my sugar starts to come back up. I can be a low 40something and make a sandwich and get a glass of juice- but once I start to come up I get the shakes, the sweats, and my lips and tongue start to get all tingly!
Im curious, what was your sugar in the morning? Usually when I feel like that (worse after I treat) I end up overtreating :(

My 18 year old daughter is at Yale right now for observation following some serious lows. She doesn't even feel them now and for her to be at 40 in the middle of the night and not wake? Terrifies me! They are putting in paperwork for a CGM for her and I am happy for that.
Lows really suck!

I used to test, literally 25 times a day because I had (and still have) such a fear of going low.
I'm on a CGM and FINALLY using it better...or at least it seems to be a BIT more accurate.
Now, I just found out my insurance company (BCBSh of IL) is dropping coverage on test strips and will only cover for me to test 6 times a day.
We know that testing more and knowing where our #'s are at better helps us stay under control which prevents complications.
Helloooo insurance company...do you want to have to pay for my complications later on in life? I'm not abusing test strips, I can't overdose on my rx for them...it's really not a smart idea for them to deny me coverage like this.
Ooooh, I've been angry about it and don't even know where to begin.
My dr. will write a letter of "medical necessity" for the insurance board to review...but even then, there are no guarantees they'll cover the remainder of my strips.

Abby the person: I'm so sorry for your LBlow experience. I hope you have a decent experience w/ the Dexcom demo--I love mine. Happy to talk w/ you about it if you like.

To @Jessica, above: I had MiniMed pump for 15+ years, various models. Demo'd their CGM last summer, hated it. Decided to change to Animas Ping and Dexcom7Plus. MiniMed has never had decent customer service, in my experience. I had the same thing happen to me (they didn't fill my order but didn't notify me) multiple times over the years. Once, they sent me to collections without ever billing me. And the rep I saw for the CGM demo was terrible. So I thought, enough of that. Have been thrilled with the Animas & Dexcom service and responses to my questions. Now if Novolog was on my insurance formulary, that would be stellar. One step at a time, I guess...

Sorry you had such lousy low symptoms, but glad you're still alive!

My only insurance problem has been that they will not cover diabetes education past a $50 lifetime benefit, which I exhausted years ago just by setting foot inside the CDE's door. I had a coma last September that might have been prevented if I could have had a CDE look at my BG records and help me make some corrections (because the endo missed it entirely a week before it happened. So I now have a new endo). So they spent literally tens of THOUSANDS of dollars when a CDE visit might have cost them a couple of hundred. If they're in it for the bottom line, their vision is severely mucked up!

So, as a T1 and a physical therapist, I get to hate the insurance companies from both sides of the board. They really are b*stards. They only care about the bottom line, I have no doubts about that. When I was first diagnosed, test strips were not covered in any amount, end of story. 11 years later, test strips are covered, and I have never had an insurance company even *think* about denying my CGM - or anything.

I consider myself lucky, but I will say this -- you get what you pay for. Everyone has a deductible. To complain about it is as fruitless as it is naive. If you want a lower deductible, get yourself a plan that you pay more into as you go. If you have coverage through an employer and don't think you can change it, you're wrong! Look into getting a personal BC/BS plan that almost every provider and medical supply company will accept. It's sad, but the insurance companies will never change without real insurance reform (not to be read as healthcare reform that recently passed - i am talking about insurance reform).

In regards to the lows, I also feel MUCH worse when I'm starting to come up, and that's when I overtreat. Overtreating sucks because I feel entitled to eat the half a bag of cookies when I feel like s**t.

I also have loved Dexcom, and Animas. They are wonderful to me and go above and beyond every single time I need them. They actually annoy me sometimes, because they are so thorough, and always calling to follow-up.

Good post, Abby!

In my side of the world, insurance SUCKS. My test strips are not covered (and I test a LOT), insulin pumps (not widely used here) are not covered, and forget about a CGMS. I haven't thought much of wearing one now so I didn't ask my doctor about it. Hmm...I wonder if it's even available here.

(I live in Abu Dhabi, capital of the United Arab Emirates).

Incidentally, I read this post a few minutes ago while correcting the 46 I woke up with. I went to bed at 247 mg/dl and had a hunch to *not* corect for that (I'm on multiple daily injections) because I've been hovering over many lows in the past few days. I'm really glad I didn't, because just 6 hours later it's down to 46.

I worry about nighttime lows because lately my symptoms seem to be decreasing. It's normal for me to test, find a 36 or 45 staring back at me, and then calmly walk into the kitchen for some juice, with only my silence and slightly shaking hands being the telltale signs of the *mess* happening inside of me.

To introduce a CGMS to my D care might not even be an issue of insurance battles, it's more of 'can I afford this'? to which the answer is 'nope, not now'. For now, I'd be happy if they'd just cover my strips!

Abby, so sorry for your low, but super glad your mom was there. And definitely not judging from me. I lived with my parents until I was 32. Money was tight & my Mommy worried less if I was nearby. She still says the 4 years I lived alone in my mid-thirties took about 10 years off her life.

BTW, I live with my brother now & Mommy sleeps better at night. :)

Thanks for the feedback, @Sarah! I just ordered my Dexcom7Plus and am officially starting my treatment with it on Monday. I'm even more excited to use it now that I know they have good customer service :)

So frustrating! I am still paying off an $800 bill from wearing my CGM while I was pregnant. Not using it now, because I can't afford it! But would love to. Thank god I too have a family who knows how to feed me in the middle of the night, when I can't seem to do it myself.

Sorry about that low! I hate when that happens!! I've read some of these stories about non-coverage and it makes me sad. I have been diabetic for 10 years, on an insulin pump, test about 8 times a day and have a CGM (which I love) and I have been covered by insurance for all of it. 80/20, I can't complain. I know how expensive it can be and I feel terrible that people have to go through all of these hoops just to be healty. As if we don't have enough to worry about already! I wish insurance companies knew more, heck my fetility doctor didn't even know what a CGM was or the "high risk" OBGYN!! Yikes, sure hope my endo will be with me when I get pregnant! Hang in there guys! We can get through this one finger prick at a time!! :)

I really want the Dexcom, but with DME caps and getting a new pump this year, I'm going to have to wait. I'm also a college student living at home.

As a side note, I love the word "sans." I use it all of the time. "Without" has officially become obsolete.

This is so crazy. I cannot imagine what people go through trying to stay healty as a diabetic. I mean the worry, the fear and just trying to live.
Apparently insurance companies don't have any diabetics on staff. Or are they just thinking mm we'll make more money on them if they are hospitalized. It's all about money and not always saftey and that's really sad.
Perhaps there should be an insurance company that caters just to diabetics.

We just recently fought the
insurance company for my son's Dexcom (he's 11). It
took six months but we finally won when it was sent
to the Board of Physicians in
NY. Two pieces of advice,
call your Attorney General's
office. We had a friend to
hook us up and if we didn't,
I would have never known that they can help. (just guiding and cheerleading, but it was what I needed).
You could also try one of
your congress men/women. Second, DON'T GIVE UP. I swear, they make you jump through hoops hoping you'll
give up.

To the person who doesn't wake up, our trainer told
us people sometimes put it
under their pillow and set
it on vibrate. Best of luck to all of you.

My insurance co. will give you a CGM if you're a child or over 65 and have control problems (serious lows). But for some reason adults with the same difficulties can't get one. It's as if they only want to avoid disasters but don't care about long term complications.

I'm a relatively new type 1 diabetic (just had 1 yr anniversary). My insurance seemed pretty good when I was diagnosed- they covered (thru an appeal) my Omnipod insulin pump a week after diagnosis, covered my insulin, test strips,finger pokers, and even my Dexcom CGM. But then one day they denied my test strips (the 10 times a day I test suddenly out of the blue became a problem), and this week, they decided to stop covering my Omnipod pods. It's quite frustrating.

Post a comment

(All comments are moderated. Thanks for your patience!)