Trying the new system
My daughter received her first FreeStyle Libre Flash Glucose Monitoring system in early December 2017. According to our local Walgreens, it was the first prescription they’d ever filled for the new system (New York City). I’d been trying to find a way to get my hands on it for a year and had even considered asking a friend in Spain if she could get it for us. It sounded that good.
There was some confusion at the pharmacy. Initially, our insurer didn’t seem to know what the FreeStyle Libre was and we were told it was fully covered. Later, we found out that because it wasn’t approved by the FDA for use by kids/teens under 18 our health insurance wouldn’t cover it.
Bummer. I’ve had to pay out-of-pocket since December. ($80 one-time cost for the reader and $40 for each sensor — similar to costs in the UK and Canada.)
The FreeStye Libre has been available in Europe since September 2014 for adults 18+ and was approved for children 4–17 in February 2016. Canadians got the FreeStyle Libre in August 2017— also for adults only — with a 14-day wear period — same as Europe. (The U.S. wear period is only 10 days.)
If the FDA follows Europe’s lead, I expect it will be fully approved for kids and teens within 1–2 years. Our endocrinologist said they prescribe equipment off-label all the time so she expects it will be covered even sooner. Other parents are already reporting that their insurance is covering off-label use. Fingers crossed. This could help a lot of kids/teens manage their diabetes.
Diagnosed with Type 1 diabetes at 4 years of age, my daughter is 14 now and had been using the Omnipod insulin pump for the past 2 years in combination with the Dexcom G5 Continuous Glucose Monitor (CGM). It’s a great CGM but my daughter was developing infections and scarring at the insertion site. (The same for the Omnipod site.) We’d also had transmitter issues which can be crushing when you’ve just done an insertion. She reverted back to the Medtronic MiniMed pump for now and wanted to try the FreeStyle Libre the minute it was introduced.
The FreeStyle Libre has been referred to as a ‘CGM-lite’ (Continuous Glucose Monitor). There’s nothing attached to you except the sensor (which is the size of a dollar coin – and incredibly slim). There’s no calibration, it’s much easier to insert and much less expensive than other CGM’s — and it’s waterproof.
Insertion was a breeze. While the needle looks thicker than we expected, my daughter felt no pain. This compares to the Dexcom which can be finicky, painful, and difficult to insert. (A massive improvement over the older CGM’s but still not ideal for her.)
With a simple wave of the reader over the sensor — voilá! — we had an accurate blood glucose reading (BG). (Well, really an accurate interstitial fluid reading.) The FreeStyle Libre can be scanned through clothing, there’s an 8-hour trending report, and additional reports can be downloaded to a Mac or PC. There’s also a helpful arrow that shows how your BG is trending.
Another great feature is a little sign (upper left-hand corner) that warns you when you should double-check your BG with a meter. (See the pic below…yes — ahem — high BG all day!)
The reader is also a glucometer.
Accuracy vs. fingersticks is in line with other CGM’s at 11%. I had one issue with a low BG where the Libre said she was 70 and a fingerstick confirmed she was 100, but I understand that this could’ve been a false reading from compression. And because the FreeStyle Libre uses interstitial fluid while a fingerstick measures blood there can be a 6-minute lag in the readings. Otherwise, we found that we could fairly confidently rely on the FreeStyle Libre to make treatment decisions.
The FreeStyle Libre has a 12-hour warm-up period in the U.S which is not optimum (and shaves another 1/2 day off the wear time). In Europe, the warm-up time is one hour. Some users believe it’s because results can be a little off in the first 12 hours of use as the sensor adjusts to the interstitial fluid. So the FDA is ‘protecting’ us from results which may be slightly off.
Some users are inserting their next sensor 12 hours in advance so they overlap for a time to compensate for the warm-up period,
My daughter started high school in September and wasn’t checking as often as she should. Because she was on-the-go all day she’d started to ‘wing it’ rather than taking the time and dealing with the social awkwardness of bringing out the glucometer, strips, and lancet and testing her BG in the midst of freshman pandemonium. The FreeStyle Libre helped solve that problem — ‘bigly’ — and there’s no limit to the amount of testing she can do in a day!
I can definitely see the value for Type 1 and Type 2 users because it’s that simple to use.
FreeStyle Libre vs. Dexcom CGM
Apart from the ease of use with the Libre, the biggest difference is the alarm and sharing function. The Dexcom alarms (loudly) when BG’s are off target. The Freestyle Libre doesn’t have that feature — yet. (I expect coming apps may build that in.) Because my daughter feels her BG’s and will wake up during the night when low, the FreeStyle Libre works or her. For people who are unaware of their hypoglycemia, the Libre may not be the best option until there is an alarm function. (When my daughter heads to camp this summer, she’ll go back to using the Dexcom CGM).
With the Dexcom, users and caregivers can access BG’s in real time on their smartphones. This feature is not available with the FreeStyle Libre, although there are apps that currently work with Android smartphones that mimic this feature.
My daughter also points out the Libre doesn’t show BG’s in the moment. Until the user scans, the results and trending data aren’t current.
The lack of connection to her iPhone takes away some convenience for her. She wants to be able to take 2 things and go instead of having to take 3 things — “because she only has 2 pockets”: iPhone, reader, and pump.
FDA & Insurance Approvals
The Freestyle Libre makes it easy for parents of Type 1 kids to test in the night (and day) without waking or disturbing their child with a fingerstick.
Speaking of fingersticks — a CGM spares the fingers! And you can test as many times a day as you like!
Looking at a 10-day period, the cost of test strips vs. a FreeStyle Libre sensor is fairly even: $42 for the sensor vs. $40 for strips (Average of 8 strips/day X 10 days at .50 cents/strip). And with the CGM, the user is in much better control. I’m hoping insurers take that into consideration.
Abbott has a deal on their website for Dexcom users — but you have to be 18 to use it. If you meet these requirements, you get a reader and sensor for free.
Hey FDA — why is there a 10-day wear period in the U.S. vs 14 days in Europe and Canada? Why is there a 12-hour warm-up period vs 1 hour in Europe?
An app to connect with her iPhone would make it so much better. That way, my daughter could simply glance at her phone for her BG rather than getting out the reader multiple times a day to scan herself like a box of cereal.
A LibreLink app made by AirStrip Technologies allows you to read your BG’s on a smartphone – but it’s currently only available for Android. (It can be found on Google Play.) In reading the message boards, it seems as if there may be some glitches with the app. We haven’t used it.
Message boards also sent me to the Glimp app on Google Play — but it’s also only available for Android.
Meanwhile, Ambrosia Systems has come out with a small Bluetooth transmitter called a Blucon Nightrider which sits on top of the FreeStyle Libre and sends results every five minutes to their own app — the LinkBluCon. It’s available in Android and iOS versions — but it’s pricey. The Nightrider is $100 and each Trans Am is $45 – and they’re not waterproof.
A contact at Bigfoot Medical told me that there is a German app that works with the iPhone —which I’m planning to find.
For now, we’re waiting for the iOS app.
Oh! one more thing! Because we misplaced the reader a few times and were afraid of losing it, we duct-taped a Tile Mate tracker to it. It looks cheesy but it does the trick!