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CGM

The Case for CGM

It can be extremely difficult to get an insurance company to cover the costs of continuous glucose monitoring (CGM) systems. The excuses that these holdout insurance companies provide as to why they don’t want to cover CGM are becoming less justifiable thanks to research and advancements in the way we think about the needs of people living with diabetes. This is why I am a Diabetes Advocate.

So far in 2014, I have only been able to get four Dexcom continuous glucose monitor sensors out of my health insurance company. Four sensors is a one month supply. It is now July. That means for five months out of this year (so far) I have not been able to wear my CGM or benefit from the data that it gives me and the alarms that it uses to tell me when my blood sugar is dropping too low or rising too high. Each time I try to get more CGM sensors, I have to restart the approval process with my insurance company, spend weeks going back and forth between Dexcom, my endo, and insurance trying to get all of the documentation together to submit for approval, just to be denied because either Dexcom isn’t a preferred provider, or because the insurance company has decided that there isn’t enough evidence to support that CGM is a benefit and results in better control of diabetes. So then I appeal. And I know there are many, many other people struggling with getting CGM coverage by their health insurance just like I am.

This is also why I am a medical librarian. Challenge accepted, health insurance industry. Bring it on.

The most dangerous side effect of insulin is hypoglycemia, or risk of dangerous low blood sugars. The ability of CGM systems to alarm and notify a person with diabetes is one of the most valuable and beneficial advances in diabetes technology ever. EVER. The fact that there are small devices now that can warn us, as if to say, “Hey dude, your blood sugar is dropping. It might be a good idea to get a snack or something,” is incredible. This is an incredible benefit to people with diabetes so that they don’t get in a dangerous situation with a low blood sugar that can leave them incapacitated, unconscious, or possibly even dead if it happens in the middle of the night while they are asleep. Do you know how health insurance companies make money off of a dead person with diabetes? They don’t.

CGM technology benefits insurance companies too. It is incredibly cheaper to provide the technology that will alarm and cue someone to get a sandwich, a juice box, or a Level gel to get their blood sugar up on an ongoing basis than it is to pay for home or work visits by paramedics, rides in the back of an ambulance, hours in an emergency room, and likely overnight stays in the hospital depending on the severity of the lows. A low blood sugar can happen at any time, and is usually unpredictable based on varying amounts of food, activity, stress, varying absorption rates of body tissue from one spot to the next, and any other factor in life that can cause any amount of change. Sometimes they happen for seemingly no reason at all, and therein lies the danger.

How about…

…a systematic review from 2012 that concludes, “There are indications that higher compliance of wearing the CGM device improves glycosylated haemoglobin A1c level (HbA1c) to a larger extent.”

http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD008101.pub2/abstract

…the research that concludes, “CGM with intensive insulin therapy appears to be cost-effective relative to SMBG [self-monitoring of blood glucose] and other societal health interventions.”

http://www.ncbi.nlm.nih.gov/pubmed/21917132

…the research that finds that regardless of prescription approach, “…patient-led and physician-driven prescription. Both modes of using CGM provide similar long-term metabolic improvement.”

http://www.ncbi.nlm.nih.gov/pubmed/22208716

…the one with early analysis of cost-effectiveness of CGM that says…well, I’ll just let is speak for itself. “…the overall quality-of-life effect of CGM arises from its ability to both improve the immediate quality of life of diabetic patients as well as reduce future complications through enhanced glycemic management.” But wait, there’s more! “The provision of greater glucose control data may have improved the quality of life of patients by facilitating decisions related to food intake and insulin regimens as well as by reducing the risks and fears of hypoglycemia.”

http://www.ncbi.nlm.nih.gov/pubmed/20332354

…real-world benefits of CGM. “Personal CGM, in a real-world setting, improves glucose control and reduces the rate of severe hypoglycemic episodes.”

http://www.ncbi.nlm.nih.gov/pubmed/20551007

This is only a start. There is more research out there, and more research on the way that shows the benefits of CGM on the lives of people who use insulin to manage their diabetes. It is time for health insurance companies to get with the program, and it is time for us to speak up and shout from the rooftops what we need, and make it happen. Some health insurance companies are better than others (PPOs tend to be more willing to cover CGM than HMOs, for example). Until coverage of CGM is non-negotiable, our work as advocates for our own health and well-being is not done. We should not have to beg and plead to get this widely accepted diabetes technology that has already been and continues to be proven to improve and save lives. Coverage of CGM should be non-negotiable, expected, and mandatory.

Now that we are staring down the barrel of the potential for the bionic pancreas in a few more years, the need for CGM acceptance by insurance companies is only going to grow. Without insurance companies accepting that CGM is indeed a good idea for people with diabetes, and without insurance companies making CGM technology accessible without the barriers and complicated processes of getting approval, and without more research documenting the cost benefits and effectiveness of CGM versus emergency responses to hypoglycemic episodes (low BGs), the bionic pancreas will never make it past the prototype phase. And we need this forthcoming technology that the bionic pancreas, and the research behind it, provides.

I’m tired. I’m so very tired. I’m tired of living every single day and running every decision that I make through a diabetes filter. I’m tired of having to prick my finger before I leave for work in the morning to make sure that my blood sugar level is okay for me to be able to drive. I’m tired of checking before meetings to make sure that my blood sugar isn’t dropping, for no other reason than so that I don’t get caught in the middle of a meeting not making sense because my blood sugar dropped too low. I’m tired of having to check before I put any bite of food in my mouth, and then having to check an hour or two after to see if that food and the insulin that I took to cover it worked the way that I thought it would. Sometimes it does, and sometimes it doesn’t. Most of the time it defies explanation. I’m tired of having to decide if I get to go to the gym and workout today based on what my blood sugar is right before I go. I’m tired of having to check so that I can drive home. I’m tired of having to check before I can go to bed. I’m tired of not being able to go to bed because I did check, and having to wait for my blood sugar to go up or come down.

I’m tired. I’m tired of the hassle. I’m tired of the bullshit. I use that word because that is just how tired of it I am. I don’t have pipedreams of a cure for diabetes. I’ve had diabetes for 33 years. It’s all I know, and all I have ever had to deal with, and I don’t walk around with imaginary hope that a cure is coming in five years, ten years, or even necessarily in my lifetime. I hope it does. Maybe it will, but short of a scientific breakthrough, I don’t feel like that is the best place for me to invest my energy. In this age of technological advancements, this age full of the smartest people that have ever lived on this planet, and this age where people are open to change and progress and opportunity, I want to be able to rest my mind when it comes to diabetes. Let’s work together to support things like the bionic pancreas, CGM coverage by insurance companies, and these things that simply make life with diabetes easier and better.

I don’t feel like making life easier with diabetes is really asking too much. If you think it is, then you try it. See if you can make it 33 years counting fingerpricks, carbohydrates, activity levels, insulin doses, times you’ve found yourself in a room waking up and not knowing where you are because of a severe low blood sugar, a tongue chewed up from a low blood sugar seizure, bruises that you don’t know how you got, and cracked ribs from the physical exertion of just trying to survive that low. Survive that, and then I dare you to tell me how CGM isn’t effective and isn’t necessary.

I double arrows down dare you.

CGM Double Down Arrows

Update, 7/30/2014:
I am so fortunate to have received a few sensors from other PWD who had the extras to spare. Thank you! You know who you are, and you have been a big help (he types, as he is recovering from a BG of 39 and still a little shaky). I received a call from Dexcom this afternoon, confirming that they finally got all of the pieces that they needed with insurance approval and documentation from my endo, and they are overnighting me new sensors. Yay! It took 7 months, which is ridiculous, but people with diabetes are experts at being stubborn and steadfast until we get what we need (*cough* bionic pancreas *cough* encapsulation *cough* smart insulin). So thankful that it appears to have finally been worked out. Ciao for now! (Did I really just type “Ciao for now!”? I must still be low…)

Update, 8/21/2014:
Order got delayed, again, before it could be shipped to me. Today I finally received a 90-day supply of Dexcom sensors, allegedly with auto-renew when I need more. Still not clear on what took so long, aside from the explanation from my Dexcom rep that it was dramatically delayed by all of the authorizations required in order for insurance to approve. I’d demand more of an explanation, but it’s been a long battle, and I’m tired. Glad to finally have CGM data again, even if it did take 8 months longer than it should have.

Cake or Death?

If you have diabetes, regardless of type, it is inevitable that at some point you have encountered some form of THE question…

“Can you eat that?”

Sometimes it takes on the shape of “Should you be eating that?” or “Is that good for your diabetes?” or “I’m eating for two, even though I’m a dude, so why are you eating that when I was counting on eating your share?!”

When I’m asked this question, sometimes I will respond with some well-deserved diabetes education. “Yes, I can eat this. I just have to know how many carbs (carbohydrates) are in it, and what my blood sugar is, so that I can give myself the correct amount of insulin to keep my blood sugar from spiking too high due to not enough insulin, or going too low because I dosed too much.”

That is usually enough to get either understanding or slightly confused looks of acceptance. Math and science, for the win! And truthfully, I’m typically happy to educate. I like it when people learn about real life with diabetes.

If I’m in a mood though, or if I’m having a low BG (low blood sugar) and don’t have the patience for a diabetes learnin’ session, I might just respond with a snotty little question of my own, such as, “Should YOU be eating that?” That’s always a show stopper, as the guilty party takes that last bite of chocolate cake and shamefully makes their way back to the other room while I feel only slightly guilty with my shaky, moody, slightly confused, sweat-drenched self. Cake or death? Whatever, I’ll apologize later…GIVE ME CAKE!

Since I got my CGM (continuous glucose monitor), even more questions have been introduced to my world with diabetes. A-Flizzle is getting good at recognizing the different tones of the CGM alarms, but most people around me and my beeps and bonks aren’t able to decipher if I’m low, high, have a low reservoir, a low battery, or if I just forgot to hit “OK” after my last BG (blood glucose) check. Still, I’m glad when it beeps and they stop to ask, “What does that alarm mean?” It doesn’t matter to me if they were able to define the alarm or not. What matters was that they heard it, and recognized that it was diabetes related, so that if I need something, I have their attention. Diabetes win!

Another diabetes win happened this past weekend when A-Flizzle was supervising, I mean, helping me organize my diabetes supplies. While sifting through test strips, glucose gels, infusion sets, and alcohol swabs, we came across this little gem when I got my paws on a fresh box of CGM sensors.

Cake and CGM Sensors

Do you see it? Look a little closer.

Cake (forget the CGM sensors)

Cake! On a diabetes supply container! For a device that helps monitor glucose levels!

Cake or death, you ask? CAKE! Definitely, cake.

Wordless Wednesday: My 1st No-Hitter

No-Hitter Chart

No-Hitter Proof

The Difference A Day Makes

With the exception of a couple lows in the past few days, my blood sugar levels have been exemplary lately. I mean, in serious 2011-goal-A1C-of-6.2-or-better getting contention. I have my CGM rates set to alarm if I drop below 70 mg/dl or spike higher than 160. Just the other day I was 20 minutes (not units…MINUTES) away from getting a no-hitter in that tight range. The stupid dawn phenomenon managed to thwart my efforts in the early morning hours with a CGM reading of 165 around 4:00am before dropping back down to normal, preceded by an ever so slight low around bedtime the previous night. Vengeance will be mine!

CGM Almost No-Hitter
My Almost No-Hitter

On Saturday of this past weekend I went to the gym, something I’ve started recently as part of a one month trial with a gym here in my neighborhood to get back in the habit of exercising regularly. I’ve been hitting the weights, trying to get my muscles to wake up and remember what they are there for, and the past couple visits I’ve added cardio back into the mix.

Cardio plays all kinds of tricks on my BG’s, usually with sneaky lows during and sometimes hours after the actity. I have had issues in the past of pushing myself too hard while exercising, especially cycling, and seeing numbers on my meter that are too low for me to continue, so the CGM really helps me and allows me to correct problems before they get out of hand. The CGM is another valuable tool in my arsenal that I use to control this diabetes beast within, and on Saturday it was working great.

The thing about cardio is that I sweat…a lot. I get into it, get my heart rate up into that aerobic calorie burn zone, and really push my limits. I enjoy the stationary bike in the gym, and I challenge myself while trying to hold a particular cadence (rate of pedaling) or speed for a certain amount of time on the bike. It’s an absolute blast for me to rock out with my iPod in my ears while conquering a ride intensity level that I’ve set into the computer of the bike. It’s not as much fun as a real ride, but for training and gym work, it keeps my attention.

So I did my bike work on Saturday, got home, and after a rest I realized that the sticky on my CGM sensor was just barely hanging on after all the sweating and training. I went ahead and removed it, as it was starting to irritate me, and since it was late I decided to take the night off before putting a new one in. That was stupidity on my part, and not the first time I’ve done it.

On Sunday morning I woke up later than ideal to get ready for a family event that I needed to get to, and I was in a rush and didn’t take the time to put a new CGM sensor in before I left the house. I went about my business at full throttle all day, and didn’t take a break to eat anything. By the time I finally got around to eating something for an early dinner, my BG was 43. I sat there cramming carbs like it was my job, and didn’t bolus enough to cover them. On top of the that, I’m trying really hard to ween myself off of carbs, so my body seems to be very hypersensitive when I do eat them, causing my BG’s to spike through the roof. By the time I got home and settled a couple of hours later, my BG was 292.

Both the low and the high could have probably been avoided, or at least better acted upon, had I taken the time to put a new CGM sensor in immediately after removing the old one. This is a challenge that I seem to continuously battle. I love it when I have the CGM, and I am a bit of an addict about keeping my BG’s within normal range. I’ve been doing SO GOOD! But once in awhile I convince myself that I need a break, and I take it, and then I regret it when my BG’s decide to go all random on me, with a stubborn high here and a severe low there, which was what happened on Sunday.

One day with CGM and I can keep my BG’s in tight control and quickly react to changes in blood sugar levels, whether they start to sneak up from an inaccurate count in carbs or drop from excessive activity.

One day without CGM and I have severe lows and highs that make me feel like I’m the world’s worst at managing diabetes, guilt trip included.

One day, I’ll learn.

My CGMS Struggle

My girlfriend and I went over to my hometown, about 90 miles away, and spent Christmas day playing with babies, laughing with family, and preparing and eating all kinds of delicious food, including pork chops, chicken & dumplings, baked potatoes, sweet potatoes, salad, and more desserts than a PWD can shake a vial of insulin at.

I’m a big dummy though. I ran off for Christmas festivities and forgot to put a new Continuous Glucose Monitor Sensor (CGMS) in before I left. So there I was, eating whatever I pleased, trying a little bit of this and that, SWAG bolusing like crazy, and running all over creation making my rounds. It was kind of like being Santa Claus…in a Scion. We finally made it back home that evening, and as soon as I got out of the car and inside the house I felt a headache coming on at full speed, including a feeling of just all around weird.

Fortunately, I still maintained enough lucidity to dash back out to my car and grab my kit.

5…
4…
3…
2…
1…

BG was 63.

Now, I knew from the sudden headache and overall weirdness that my blood sugar was dropping, but at that moment I felt I should have cashed a $20 bill into quarters and backed up to the ass kicking machine. Why did I run off traveling without my CGMS? After fighting and longing for this amazing near real-time blood glucose monitoring technology for so long, I still struggle with wearing yet another device on me, attached to my skin. This isn’t the first time I’ve been cavalier about wearing it, just the first time I’m willing to admit it.

I can’t explain it. I feel stupid for not wearing it all the time, but sometimes it is just too much. Or is that just what I tell myself? I know that as PWD’s we rely on data above all else to help us manage and keep the tiger on the other end of the diabetes leash tamed. So why am I so reluctant, stubborn, or just down right stupid to not wear my CGMS 24/7/365?

I love how I can see the trends of my BG’s when I’m wearing my CGMS. I feel like I am in much better control when I wear it as well, seeing which direction my BG’s are going, and being able to correct quickly. It also encourages me to test more frequently, keeping a close eye on where my BG’s are at any given moment. I like that I can catch a low before it becomes headache inducing, or worse. I also am making adjustments so that I can catch the high BG’s as well, when they happen. So it isn’t that I don’t like using the CGM. I actually find it quite fascinating.

I truly think my biggest hurdle with CGM, after having it the past three months, is that it is still another infusion site. It’s still something else that is poking through my skin. It’s still something else that I lose sleep over, not because of the beeping (that’s saved me more than once already with severe night time lows), but because I’m still not used to it being there. I’m so aware of it and don’t want to roll over on it and feel that agitating pinch, especially when I wear it on my arms.

I wish I could just put the CGMS on my forehead. I don’t really sleep on that. Of course, that might prove problematic on days like Christmas when I want to smack myself in the head for being selfish and just flying by the seat of my pants, instead of giving diabetes its proper respect. After all, each of us has had experiences with diabetes putting us in our place and reminding us that it will not be ignored.

Doh!

For those of you with CGM, do you wear your CGMS all the time?
What is your strategy for when to where your sensor and when not to?
Have you experienced any challenges in adding CGM to your diabetes arsenal?

Inquiring CGM-ers want to know.

Momentary Self-Consciousness

Last Friday I went to meet with my Medtronic rep to get a “blind” Continuous Glucose Monitor sensor to wear for a few days. A “blind” CGM sensor is exactly the same as a regular CGM sensor, except I cannot actually see the BG readings in real-time. They are stored onboard the sensor for my rep to download and report for insurance purposes, so that I can get my new Revel (insulin pump + CGM) this week.

I really didn’t think much of it, and in fact was kind of excited to see how it was going to feel. I had participated in a one week Dexcom trial a couple of years ago without much success, so I have been interested in trying Medtronic’s version in hopes that it will work better for me.

The sensor itself has been a breeze. Besides the slight pinch when I put it on, so far it has been painless and worry free for all three days that I’ve been wearing it on my left arm.

CGM Sensor Left Arm

The hard part for me has been what I hope is a temporary moment of self-consciousness. Friday morning when I got the sensor, I was so excited about it that I wanted to show anyone. For future reference, most of the people that I showed it to cringed when they saw it, so don’t do that. I think that’s the natural response. Maybe it was because there was this foreign object now connected to me in plain sight (unlike my insulin pump, which I usually keep quite hidden). Or maybe it was the tiny amount of blood just slightly visible under the clear adhesive.

As the day wore on, this trend continued, even without me necessarily pointing it out. That night my girlfriend and I went to a comedy show with friends, and the lady sitting beside me was boring holes in my arm from staring at my CGM sensor so hard. By the time we got back home, I was practically in tears, which is totally not like me to be affected so much by other people’s reactions. We ended up canceling a day at the beach that we had planned for this weekend, mainly because I’m just not as comfortable with this new, additional doohickey on my body as I’m sure I will be in time.

With all the finger prickin’ and technology that comes with diabetes, it takes a conscious effort sometimes to not let the world and other people get to you. Some days are easier than others. No matter what though, my health and my future is more important to me than what anyone else may think or how they may react to what I need to do to stick around. If anybody doesn’t like it, they can put it in their meter and check it!

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