I had the privilege to attend the TCOYD type 1 retreat this month. It was the second one and I must say it is so cool to sit in a large room and know the person next to you gets it. We all have diabetes or are a family member of someone with type 1.
But one of the sessions talked about CGMs and how so few people are using them. I know for many it is insurance and cost but there really needs to be a major push to make this a necessary piece of diabetes equipment just like insulin.
And yes, I know there are many who are doing great with testing with a meter and I was one of those. Testing 8-12 times a day, thinking I was doing ok. But wow, after getting my first CGM, I realized how much I was missing. And it is amazing when you are basal testing and you watch that line go up and down with no food or exercise in the picture.
This tool should be handed out with everyone at diagnosis and also with the tools to use it effectively. This little piece of equipment has opened my eyes to better management of my diabetes and some of the best control I’ve ever seen.
The numbers are pretty low. I think (don’t quote me on this) is around 30% of people with diabetes are using one. I just think of all the info we are missing. I would give up my wonderful pump long before my CGM. I hate going 2 hours during warm up periods.
So I love my CGM and I wish more people could get them, or open up to the knowledge they can give you.
Are you using one? What is your take? Why don’t you use one? Or if you did, why did you stop?
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Cost is a HUGE factor. I self-fund, but don’t have kids or a mortgage at the moment and I am fortunate that I can afford to do this. Other people have to make tougher choices than many of us on this forum.
Cost is probably the biggest factor.
Pump coverage is pretty standard these days. CGM coverage, outside the US, is hard to come by.
Yep, I’ve spoken to insurance agents who have no idea what I am talking about when I mention a CGM. I was literally laughed at by one who said “those things are crazy expensive, there is no way we would cover that”. I believe Manulife covers the Libre now so things are changing.
I agree cost is a big factor, but I suspect a lot of “average” diabetics (not the more informed, more interested in improved self-care kind found on forums like this) just aren’t interested in drilling down into the numbers, or fine-tuning control, to the degree that CGMs allow. I know two people who are type 2, and neither of them tests their blood more than once every month or so. This seems typical of many diabetics.
Things are changing! In Canada you can add to the list Great-West Life, Empire Life, SunLife, Desjardins, SSQ, and ClaimSecure among the many insurers that cover “flash glucose monitoring machines.” They’ve been slow to pick up CGMs, but it looks like the ball has started rolling. Great-West Life just this month (August 2018) started covering “continuous glucose monitoring (CGM) devices, sensors and transmitters,” and SunLife will start in November. I don’t know of any others yet.
I went to the TCOYD conference as well. One of the speakers challenged us to promote the use of CGMs to our fellow diabetics. Thank-you for your post, @Sally7!
I waited until my insurance coverage for CGMs began in 2009 before I sought to get my first Dexcom 7+. Looking back, I think I valued the economic impact more than the quality of life that the CGM gave me. I now see this decision as short-sighted.
I had no idea that the CGM could teach me so much about my glucose metabolism! I’m glad that I finally signed up for one. If you are thinking about a CGM and are worried about the economic effect of using it, I encourage you to reconsider. Even if you limit the number of sensors that you purchase, I believe that intermittent use, if you pay attention, will reward you more than the cost of this item.
As an aside, I’ve noted a few Canadians who’ve responded to this thread. Many in the US, including me, have always thought that our medical insurance system is superior in terms of permitting many of us to get an insurance subsidy to things like CGMs.
I am paying about $6k USD in annual insurance premiums to maintain my coverage. In addition I pay several hundreds of dollars out of pocket for annual insurance deductibles as well as the typical 20% copay for services. I think that we in the US often assume that people in other countries, like Canada, pay more for similar access to health care. I don’t know all the numbers to do this comparison but I suspect that there’s a good chance that people in Canada and other countries pay less in the long-run.
Sorry for this thread diversion but since several people have mentioned the affordability of CGMs are a primary limiting factor for using, perhaps you need to consider the fuller picture. Maybe you could budget some of the money you save each year by participating in a less expensive health care system to finance CGM costs.
My dad (T1) has one but is not using it. He doesn’t really like having something attached to him, and hates the alarms. He pretty much just used it the same as he does a meter anyway, ignoring the trending arrows.
Eta: He also gave my mom access to the information which probably didn’t improve his opinion of it, because then she could always check what his blood sugar was and harrass him about it.
Ha, ha. That is why I go fishing. To get away from my wife.
I wore a CGM once because my endo asked me to wear it. The meter showed that I go really low at night. As to why I did not continue with the CGM, I guess I was just stuck in a pattern of how I manage my diabetes. Always the same food, always the same level of activity, always the same pile of test strips next to my chair. Always the same.
As an Australian, I had the impression that most T1s in the US used CGM. Clearly I am wrong!
In Australia, the percentage would likely be considerably less, even though under 21yos are either funded or subsidised. Of course, at the age of 22, everyone’s T1 becomes a magically stable T2​:roll_eyes:
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It isn’t covered by private health insurance, and private health insurance is trying super hard to not pay for pumps as well…
I am sort of using CGM, with Libre/Miao Miao and Spike, then sending that to Loop app and Nightscout to close the loop. I’m very new at looping (5 days), but it’s magic! I’d sell a kidney before losing my CGM and loop.
Actually that’s interesting. I currently self-fund my CGM, test strips and insulin for less than that. I’ve looked into insurance and the premiums would cost more than just paying out of pocket, so as a self-employed person just pay as I go. I think it would be much more expensive in the United States to self fund due to how much insulin costs. Pumps are covered by the provincial government so no insurance needed for that which makes a big difference though.
My HMO barely covers the Dex. It does however, pay very well for the Libre. So that is enough for me. I have received some surveys where they ask if the Dex prices were lower, would I switch? Yes, maybe. It’s a good idea for Dex to charge less…
Congrats on your Loop start! It is magical. It will give you better control with less effort. Computers are better at some things. Making a dosing decision every five minutes is better suited to a computer. When I started on Loop, I felt like I had been transported five years into my future! Enjoy.
My PCP had brought up using a pump about a year and a half ago, but I wasn’t really interested. This year has brought new (and very improved) insurance but with an different formulary which sent me on a roller coaster as my insulin regimen had to change.
I had seen a trial run of Dexcom 6 on diaTribe so that piqued my interest in CGM. I am Type 2 but it appeared that I would be eligible and then the insurance decided to cover CGM for anyone taking insulin, but for the Dexcom 5 since they still are insisting on calibrating sticks.
I just got off the phone with Dexcom and they said that they got everything back from the insurance company today so they’ll be processing my order in short order. I am excited because I have a lot of overnight and morning issues that need fine tuning and think this will be eye opening. As more insurers approve CGM, I think it will become more widely adopted.
Cgms may be expensive, but if it avoids one emergency room visit I’m sure the insurance company comes out ahead of the game.
Double that and you get close to what I’m paying… And that’s in an employer-sponsored group plan, albeit for my family, not just me… My copays are low though, as are deductibles and max OOP…
Back to the main idea of the thread – I agree that ALL people with diabetes should have the opportunity to get a CGM if they want. In addition, all people with diabetes should be encouraged to use a CGM at least intermittently to see how everything impacts their BGs.
I am certainly impressed! It’s almost a completely new way of doing D.
I’m a bit stunned at some of the things that are happening, to be honest, and although I thought I had my settings fairly well tuned, I do not! I’m going to run autotune as soon as I figure that out. I pretty much seem to need to sort my dawn phenomenon, then I need very low levels of basal after lunchtime, including none for a good few hours overnight. I’ve never been game to set this in my pump, because we all get DKA after a couple hours of pump failure, right? Or not. I’ve always had low tendencies at night, didn’t realise they were quite this definite! I am a huge fan of this system, can’t wait to explore it further!
Cost and availability. It’s that simple, I suspect, for many of us.
I understand the cost factor and how insurance companies control everything.
My frustration here is they don’t want to pay for the expensive treatment plans that can help us manage our disease better, which will lead to much better outcomes. Their thinking is don’t pay for this expensive stuff now because the likelihood they will be paying when all those really, really expensive complications start is not going to happen. It’s always about their bottom line not about what works best for each patient. Wow, we really need to figure this out.
The solution is pretty simple, but is apparently politically infeasible in the U.S. Single Payer, nonprofit healthcare (from top to bottom) is the only system that can work in a way that has a chance to work “best for each patient.” It’s the way every other modern country does it, and it is surely the way we’ll do it at some point in the future.
Until then, many of us will suffer along paying bankruptcy-causing prices for sub-standard healthcare.