I have been on a CGM since 2013. Yes I felt secure in knowing this tool will warn me when I am trending into hypoglycemia. Having unawareness is very scary. Since upgrading to the lastest version I am so frustrated. The alarms are inaccurate and it causes concern for my coworkers and spouse. I have to stop or wake up and confirm the alarm is accurate. Not by a long shot… they think I’m not telling the truth til I show them my meter. I have removed this CGM and trialing another tool that will become a CGM in the near future.
The T1D Exchange data has CGM usage at 30%. I also attend the TCOYD One event as a Type 3 provider ONE 2017 | A Type 1 Diabetes Conference & Retreat This event and the other TCOYD event across the country are the best patient education events currently being offered.
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I have a problem with the libre unit. While
Handy to “scan” your blood glucose levels,
One reason for using a cgm, is that it
Can provide a level of safety. Such as
High blood sugar or low blood sugar.
The new freestyle product is nothing more
Than “convenient”
One can buy alot of relion test strips at 18
Cents, compaired to $35 every 10 to 14
Days
The Libre can show you what your blood sugars looked like overnight as well as trends and statistics such as time in range and standard deviation if uploaded to the right software. It’s much more valuable than a glucometer, but yes, if alarms are important to you, it’s not as good as a Dexcom.
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You can convert Libre to a true CGM by using a reader (Blucon or MiaoMiao) that is attached next to the sensor, reads it every 5 mins and send the data to a mobile (cell) phone via Bluetooth.
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I heard the 30% CGM usage number at the conference and your chart shows that. However, when I search the data using the T1D Discovery tool, it only shows 9.9% usage.
Where did you access the chart you show? Do you have some special access to the data that the general public does not have?
We are members of the T1D Exchange and I was one of the people who collected data from the medical charts to create the five-year data set. The information I posted came from the 5-year data slides. They are available to people in the Exchange network are are being presented at conferences and in journals. https://t1dexchange.org/pages/category/findings/
Do you know if there are plans to update the database that serves the T1D Discovery tool?
As a T1D, but not a conference presenter, may I still access T1D Exchange data outside of that through the T1D Discovery tool?
Is there someone I can send an inquiry to about access to this data simply as someone with diabetes who is curious about the data?
I am a member of GLU. Does that make me a member of the T1D Exchange?
I have been wanting to use a CGM for 11 years. You are so correct about how much information we miss using just a meter, even if we test often. I would get so frustrated trying to find out where I was peaking after a meal and killing my fingers trying to find out.
I never “qualified” for a CGM, and wished I had the financial ability to get one on my own. I jumped on the Libre system as soon as I learned of it and the CASH price was within range. That was about 3 weeks ago. I ran to my local pharmacy with my prescription and paid cash for the system, including 3 sensors.
I was hoping to get Medicare approval before I ran out of the 3 sensors but that appears to be wishful thinking. I am confident that I will be approved as I do meet all the criteria they list, but you MUST go through one of their approved suppliers, and all the other red tape which takes forever. This has been in the works for well over a month and no where near being finalized. I guess I will be paying the full cash price for another month before I can obtain the sensors for a reduced fee.
The Libre system may not be the best, but it sure beats just a meter.
Loved your post. TCOYD came to my city twice since I was diagnosed 11 years ago and I just loved attending the seminar.
I could get better control and usage of the two types of insulin I use with a CGM.
Did you take one of the discount cards to the pharmacy? While you are paying out of pocket? It helps! www.singlecare.com
I used the GoodRx discount on the internet. Thanks for the suggestion of using a discount card while going the CASH route.
I am hoping I will soon get the approval from Medicare but then I can’t use my local retail pharmacy.
In my opinion, just another way to slow things down. (Waiting on a shipment.)
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I have coverage for my dexcom, I live in Alberta, under the Alberta Teacher Employee Benefit plan. I do have to pay upfront but get full coverage back for the sensors, however I have to pay for the transmitters. If I didn’t have coverage it would be difficult to afford the dexcom system. I love it and can’t imagine living without it. In my opinion it is a game changer for us diabetics.
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I think one reason is because many people have not yet reached their pump upgrade date (their insurance won’t upgrade them to the latest pump yet). It was only a couple months ago that I got the Medtronic 670G, which uses the Guardian 3 for CGM. My previous pump & CGM were the Medtronic 530G, which used the Enlite CGM. The Enlite was so worthless & unreliable that I sometimes wondered why I even bothered with it, since I usually couldn’t trust the numbers anyway (my doctor once said “I don’t even mention the Enlite to my patients anymore”). But now with the Guardian 3 it is much more reliable, therefore much more useful, both for just seeing the data as well as the 670G’s Auto Mode (a feature that partially automatically adjusts your basal). So I think the reason is a combination of cost/insurance along with some people still being skeptical about the reliability of CGM. I will admit that when I was using the Enlite CGM I was skeptical about whether the Guardian 3 would be any better, but it definitely is, and I think some people are having trouble believing that (especially the ones that don’t care and don’t bother trying to do the best job possible taking care of themselves). This concept may also apply to doctors; if your doctor is skeptical about CGM, they may not be as inclined to recommend or prescribe it for you, therefore possibly affecting your opinion or making it harder to get your insurance to pay for it.
I’m not on one and have no desire to use one. My a1c is 4.9 to 5.5 and I usually can predict my blood sugar down to the number on most days. Literally … I bet I’m 82 and be 85 or… mmm I bet my set it’s in a good stop I’m high I bet I’m 168 and be 168. Anything under the skin causes scar tissue. Personally I think pumping or injecting does enough. If you are lean real estate for good tissue for absorption is precious. I don’t want anything to take away from that.
I do pole, silk and yoga everyday and pull my pump out every other day I don’t need another gadget on my body.
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Here’s my guess:
- CGMs are pretty expensive even with insurance.
- CGMs always require medical authorization and some insurance plans automatically deny authorization and repeat appeals.
- CGMs can be complicated to insert, calibrate, and understand without quite a bit of diabetes education.
- CGMs can be viewed as a big tattletale on our diabetes management which is reviewed by our doctor and some folks do not want to face the “rollercoaster of shame”.
- CGMs require more out of pocket expense, more hassle, more time, and more effort from diabetics that already feel overwhelmed.
I can’t imagine going without my CGM but I know a few T1s that refuse to wear one.
I think in the next few years, better technology will make CGMs more user friendly and hopefully less ridiculously high priced.
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CGM is not government subsidised or covered by insurance for adults in Australia so the cost is prohibitive for most people. I sincerely hope this changes. When used in combination with the closed loop technologies that are starting to appear. Hooray! they are absolutely life-changing.
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First time posting but have something to share. The only good thing about turning 65 is Medicare if you haven’t had any insurance. Walmart made it possible to self fund my insulin but I had to use R to bolis and N for basil. Not great. I now use Lantus and Novlaog. I got my CGM (Freestyle Libre) about 3 months ago. The sensor is a 1 inch round pad that sticks to the underside of your upper arm. With my Medicare the monitor was 49.99 and the sensors are 69.96 (pack of 3 last 30 days). I searched around and found this price at HEB, a grocery store chain in Texas, and was half the price of Walmart. Even my doctor thought it was going to be about $1500. I went from getting a glucose reading 3 times/day with test strips to as many as I wanted, somethings 50-60 with the CGM. The trend it shows is great info and it gives me my nighttime readings as well. A1C went from 9.9 to 8.1 in 30 days and then to 7.3 30 days after that. It is still a ‘job’ but it is easier. This is the only CGM I know so I can’t compare it to anything else. Get a CGM.
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I am an avid bodybuilder, and runner, who wears a pump. I have a CGM, but already struggle with wearing a pump, (let alone something else,) due to activity levels, and perspiration. I have been on a pump since 1998, so I have (through multiple products, and tral-and-error) figured out the best way to keep it from constantly falling off. However, it is still a pain, and a CGM did not / does not control my A1C any better. The only advantage for me, would be the CGM will alert me if I had a low or high glucose during sleep. With proper basal settings for my sleep, a CGM isnt really necessary. So, the expense, and worry, just was not practical.
It is not that different, here, in the U.S… By the time they get around to approving coverage of a newer technology, it has already become obsolete. Lol