Friday, January 30, 2009

CGMS

Together with inspired, who also has type 1 diabetes, I have put together a post explaining the Continuous Glucose Monitoring System.
What it is, what it is not, why it is so important to a person with diabetes, how much the CGMS costs, and what makes my insurance company such idiots.

WHAT THE CGMS IS:
The CGMS is a little device which records a person's blood sugar levels throughout the entire day on night. This is done via a needle inserted under the skin. The needle is removed, leaving behind a little "sensor", which measures the blood sugar levels. The next part of the device is the transmitter, which is attached to the sensor. It take the readings and transmits them (hence the name transmitter-deep, huh?) to the third part if the device: the receiver. This is also named for a very deep and complicated reason. It receives the transmitted data, and displays them on a screen. That way, any time the person wants to know his blood sugar (which they abbreviate as BG, or blood glucose, because the other way doesn't abbreviate as nicely ;) he pulls out the receiver, and there he has it! Great huh?

WHAT THE CGMS IS NOT:
The CGMS is, as of now, not considered accurate enough to replace BG testing. In fact, the newest brand of CGMS, the Freestyle Navigator, had a hard time getting FDA approval, because it is considered very accurate, and the FDA was worried that people would find it accurate enough, and not need to check their BG. So for now, it is simply an excellent supplement to old fashioned blood sugar checking. Why is it an excellent supplement?

WHY THE CGMS IS USEFUL TO A PERSON WITH DIABETES:
Checking your blood sugar to get the picture of your blood sugar is like looking at a picture to know a whole story. It's one snapshot, but you are missing a lot of details. For example, a person could check his BG and see a perfect 100. (An excellent number for someone with diabetes.) But, what he doesn't know is that it is rapidly rising and soon he will be 200. Or, on the flip side, (and this is the more dangerous one) he could be rapidly dropping and he could soon find himself 50, which is a dangerously low number and needs to be be taken care of immediately. With the CGMS, you don't only see a number, you see trends. It will show you a graph, which will show you patterns and trends. More important, it will show you which direction your blood sugar is heading. So, instead of showing you a 100, the screen will display a 100 with an arrow pointing upwards or downwards, to show which direction it's going. If it is heading up or down very quickly, the screen will display a double arrow, to caution you.
Another very useful aspect of the CGMS is the alarms. The receiver will alarm when your blood sugar goes too high or too low, alerting you to deal with it before it gets to a really problematic point. I won't go into details here, if you want to read more about it, read my letter to the insurance company on my diabetes blog. But, to make it short, there is a condition called hypoglycemia unawareness, which is exactly what it sounds like. Hypoglycemia means low blood sugar, so it means that the person doesn't feel symptoms of their low. This can be quite dangerous, as a low blood sugar, if not detected early, can become worse, and eventually lead to unconsciousness (or even death...).
I have occasional hypo unawareness. Take the other day for example. I went to the car to run some errands. Being a good little diabetic, I pulled out my blood sugar meter first, to check.
55? What? That's quite low, why did I feel absolutely nothing? No shakiness, no dizziness. Just business as usual.
Except it wasn't. It could have been dangerous. (Low drivers resemble drunk drivers.)
Now, imagine if I hadn't checked....
But imagine if I didn't need to check. Imagine if I had a monitor that started beeping when it started going low and I didn't need to get there.
Another example: one morning, I woke up with all the classic symptoms of high blood sugar. A quick check confirmed my suspicions. I was super high. (If you really have to know a was about 400.;) as I tried to figure out the cause if this unexpected high blood sugar, I noticed that my pump site had fallen out, and I hadn't gotten any insulin all night. Sigh. Now imagine if I had a CGMS. It would have beeped when my blood sugar started rising. Now most likely I would have chosen to roll over and ignore it, but that would have been my idiotic decision, not the insurance company's selfish one.

WHAT MAKES MY INSURANCE COMPANY SUCH IDIOTS:
The CGMS sounds like an awesome medical advancement, huh? There's got to be a catch, you say. You are right. The CGMS costs an arm and a leg. An insulin pump also costs a fortune, but the insurance company pays for $5,985 of it. I just had to pay the $15 dollar copay. It's not the generosity of the insurance company, rather it's considered the standard of treatment in this day and age. So the insurance companies got smart. They are resisting the efforts to make the CGMS a standard of care, so that they can continue denying it. It's a lovely cycle for them. They deny patients on the grounds that it is not the standard of care. But the fact that not too many patients go on it (because their insurance company doesn't pay for it) prevents it from becoming the standard of care. This is very important to them, because of the high cost of the CGMS. The start up fee for the CGMS (including the transmitter and receiver) can cost anywhere between 800 and 1500 dollars. Then there is the ongoing cost of the sensors. Sensors cost between 35 and 50 dollars each, and they last 3-7 days officially. Meaning, the FDA approves them for 3-7 days, depending on the type of sensor, but patients have left them in for far longer....
So why am I calling my insurance company idiots? I mean, they don't like people like me. They prefer people like MP, who get sick never, and actually have to go once a year for a checkup. But it's their tough luck that they got stuck with me. And I have every reason to expect them to pay for a CGMS. So my doctor wrote a letter of medical necessity. We sent in an official application. And they rejected it. Now I need to appeal. Unfortunately, I've been reading up on appeals in this matter and I am getting discouraged. Yes, some people get coverage, but I think it depends on how well connected you are, or how many letters you can throw at them, or how well read your diabetes blog is.
The parents on that forum that I mentioned in a previous post actually had a great idea. A CGMS does not replace BG checking, but it cuts it down from about 10 times a day to about 3-4. With BG test strips costing a dollar each, that actually can present a significant saving. So, the idea is to save all the used test strips for a year, put them in a box and mail it to the insurance company with a note asking if they are sure they don't want to cover a CGMS.
I was gonna do that, and I was saving my strips, (actually, to make a collage out of them. I love arts and crafts), but the case opened....in my friends car....and spilled all over. And even though she is my closest friend, she hasn't let me back in her car since. :-p
So that idea is out. If anyone has superlative persuasion skills, please let me know so we can brainstorm together.
BTS- does that answer your questions?

25 comments:

little sheep said...

SD, dropping them all over your friend's car shouldn't stop you! just don't carry the case with you!! it's not like your not keeping the used strips from checking in your bag anyway...don't let something as small as that stop you ;)

Something Different said...

You are really right, LS. I should just empty it more than once every few weeks, huh? (Specially if I am checking more often....;)
Any ideas for my collage?

Btw, did that picture freak you out?

little sheep said...

you're collage? it should be a background of neat rows of strips, with raised stacks of strips saying "CGMS PLEASE!!"

freak me out? um...we'll skip that.

Something Different said...

no it is not for them, it is for me, to console myself for not being able to be on vacation....
I need another idea please!

Well, if you read that post, then you might as well get the visual illustration. You will be pleased to know that for once I didnt stop to take the picture when it happened, I went back and took it off my meter's memory...though it would be my type to take the picture right there. (!)

Inspired said...

Well Done!

You should really try appealing. An increasing number of people do get covered now since JDRF did their study. Don't give up! I'm willing to donate used test strips if that is of any help (freestyle lite are the more expensive ones)

That LO really freaked me out, I've seen 32's and even 28 but LO... and how do you delete a reading from the memory?

Something Different said...

Inspired- thanks.
I did, then switched insurance companies....had to start over. Not sure what the process is up to now. Remind me to ask next time I am at the endo, k?
And did the JDRF study really affect things? I'm so out of touch with the diabetes news....
I think my collage needs to be all one kind of test strips, would you consider switching to the one touch for me? (maybe when you get your new pump, and get the ultra link?)
Cool- btw, didn't know you use the freestyle lite. It is one of the very few meters that I have yet to try. ;)

That LO was a visual illustration of that post on karpoozi. The meter company says LO means less than 20- so you can try to figure out for yourself how I managed to get outta bed....cuz I didn't figure it out yet... :-p
I don't need to delete it from my meter memory though- just got a new meter---LOL. (Did you ever notice the bad battery life of the freestlye flash?)
Ok, 'nuf rambling. ;)

Something Different said...

LS, I just realized what you are insinuating with that first comment- don't carry the case with me? Hello it has my meter and stuff in it. Is that really what you want?!? ;)

little sheep said...

woah...i meant the part that has the used strips. don't tell me they're loose in your meter case! and if they are, find a better way to store them, so they won't fall out all over the car...

Something Different said...

Of course they're just loose in my meter case. Don't tell me you expected me to carry around ANOTHER case for them!
Fall out all over the car? What gives you THAT idea? ;)

Inspired said...

That's too bad, I'll try to remind you next time... and the JDRF study definitely did affect things, as I've mentioned, an increasing number of people do get covered now...

I don't think I'll switch to the Ultra Link, firstly cuz I hope to get approved for the CGM and secondly, I hate the size of it.The lite is really great, the size, no coding and the test strip port light...

That LO is unbelievable, still can't imagine how you got out of bed...

Something Different said...

Inspired, maybe convinc me not to cancel my appointment, then you can remind me to ask her. Alternatively, I can email my endo... ;)
What the JDRF may or may not have accomplished does not affect my individual case, KWIM?
Bout the ultra link- tell me about it. I had I buy a bigger pocketbook to fit it... :-p I know bout the flash....used it for years. It's the same as the lite just needs coding. But it's worth it cuz you don't need to put the number into your pump. Email me for more explanation. I think I am boring ppl to tears (if anyone is reading this....I have my doubts.)
Bout the lo- three words: G-d loves me. :-)

Dude with hat (aka BTS) said...

SD, yes it does. Nothing much to say here though....

Btw, what about talking to some state governor? Or they're incapable of helping with it?

In my understanding it's not the price of CGMS itself, bu the cost of sensors which comes out to about $1500-6000/y if trying to count expenses without insurance...
Or would insurance cover cost of sensors if you had cgms?

Are there insurances that cover it?

Something Different said...

BTS- Yes, they are trying to get lots of people involved. See: http://cgm-antidenial.ning.com/

I think it is simply the fact that they dont want to pay a penny that they dont have to. I doubt that would help, but I wouldnt mind the opposite...paying for an occasional sensor it they would pay the initial startup fees...

Insurance coverage has been gotten, but it is on a case by case basis.

Dude with hat (aka BTS) said...

see my email.

Do you know for sure if they would cover any of that?

What about just fund raising? We could get somewhere with it.
I just checked on one of my ex-employee's websites initial set is $1,220.00 - not that hard i think.

However Sensor Kit is $475.80 by BOX of 6 - that's for month and a half...

Something Different said...

BTS- you mean like a paypal button on the sidebar of my blog asking people to contribute to my CGMS fund? :-p
If I would get coverage for a transmitter I would just buy a couple of sensors and use them for times like now when I am sick and my numbers are going crazy...
But I dont.

Dude with hat (aka BTS) said...

Could be that too.

Don't give too!

Something Different said...

BTS- maybe I should start a poll on my blog: "would you consider donating money towards a CGMS for SD?"
Lol

Dude with hat (aka BTS) said...

wow that's weird - "Don't give too!" - dunno how this happened but I meant "Don't give UP too!"

Dude with hat (aka BTS) said...

SD - one thing doesn't block another, but I remember reading statistics of polls where author's point was that peoples words often don't match their actions. So give people a call to action and not just something they'd skip in their mind

Something Different said...

BTS- thanks, but I wouldn't put up a donate thing...it's a cute thought though...
I am not giving up, if Hashem wants me to have one, I will. It's that simple.

Dude with hat (aka BTS) said...

Not sure how this joke sound right in english but here's my try:

A man prayed to God everyday to win in a lottery. Day by day, years passed. One night he get into bed and hears a voice: - "Would you at least buy one lottery ticket"?

Something Different said...

BTS- you did fine. I bought a ticket. I applied.

Dude with hat (aka BTS) said...

You know better

Something Different said...

If you have any good idea, I am open to suggestions. I am not looking to fund raise from my readers though.

Dude with hat (aka BTS) said...

Speak to a governor directly, not waiting for enough signatures on that site?