Medicare and CGM Coverage: Swirling Emotions

If you’ve been following the saga of Medicare coverage for the Dexcom G5 CGM, you know that Medicare beneficiaries will be forced to use the Dexcom receiver while being absolutely forbidden from using smartphones and the G5 and Follow apps. Coding and Coverage information released by Noridian Medicare in March 2017 clearly states this Medicare policy:

“Coverage of the CGM system supply allowance is limited to those therapeutic CGM systems where the beneficiary ONLY uses a receiver classified as DME to display glucose data.  If a beneficiary uses a non-DME device (smart phone, tablet, etc.) as the display device, either separately or in combination with a receiver classified as DME, the supply allowance is non-covered by Medicare.”

Few people in the diabetes community think that this makes sense, but for now it is the rule. Most of us on Medicare are grateful for the thousands of dollars we will save annually by having our Dexcom G5’s reimbursed, but emotions are swirling. JOY for coverage. ANGER at the restrictions. ANTICIPATION that sensors will be shipped soon. DISGUST that seniors are being treated differently. FEAR that no longer can our caretakers track our numbers in real time. SADNESS that we are losing access to our phones and watches. TRUST that this policy will change.

Lately I have been waking up in the middle of the night and stewing about being forced to abandon my smartphone and Apple Watch as Dexcom receivers. I worry about whether I will be able to integrate my G5 into my t:slim X2 insulin pump once the the Tandem software is approved. In the light of day I try to sort through my feelings knowing that I shouldn’t lose sleep over this. Mostly I feel frustration because it is a stupid ruling that I have little recourse to challenge. There is sadness because I really like my having CGM number on my watch. There is the sense of loss taking away something that I once had. And not to be ignored is the spoiled-child syndrome that “I want what I want when I want it!” and it’s unfair that others have it and I can’t.

For the most part anger about this situation is not one of my emotions, but others are frustrated, furious, and ready to do battle. A couple of quotes from Facebook:

“This is a ridiculous and ageist policy and I have said it many times. It’s not right.”

“I find it abhorrent that Dexcom G5 is MEANT to be used with smart technology and ANYONE not on MEDICARE has this option.”

“There is no way I can sign that form. It’s aggressive and hostile and incredibly ageist.”

Another emotion I do not have is fear. I currently neither use the Share app nor need someone alerted to my highs and lows. But others are dependent on a caretaker monitoring their BG levels and their safety is jeopardized with the denial of cell phone use.  Some Medicare recipients have disabilities such as low vision that make the larger screens and adaptability features of smartphones a better choice than the small screen of a Dexcom receiver.

“My T1D husband has a traumatic brain injury. So it is invaluable to me, his 24/7 caregiver for 3 1/2 years to be able to use the share/follow app.”

“Share has saved my life a couple of times on the G4 when I was mowing grass and didn’t hear the Dexcom alarm, but I did hear my phone when my wife called.”

“I don’t feel my Lows and my guy gets the alarm on his phone….This is a *safety issue* in my opinion. If we were totally able to feel things and get through without the chance of conking out we wouldn’t even need the darn CGM.”

“I have retinopathy of prematurity and have always had bad vision. Seeing my Dexcom readings on the iPhone is much easier than on a small receiver.”

My Thoughts and Things to Remember:

When my reasonable brain takes control, I know that I will survive using my Dexcom receiver. That is all I had for the first seven years of my nine years using a CGM.

I don’t have medical reasons that my iPhone and Apple Watch are better than my receiver. In fact I prefer dismissing alerts on the receiver because I can just push the button and not even look at the number! BTW that is a bad thing…. On the phone, I need to scan my fingerprint, tap on the alert, and go to the Dex app to dismiss it. I will miss automatic syncing of my G5 numbers to Dexcom Clarity, Tidepool, mySugr, and other apps, but I will survive.

My blog was started in the spring of 2013 and quickly became known for advocacy for Medicare Coverage of CGM’s. If at any point we had been offered the possibility of CGM reimbursement contingent on no smartphone use, we would have jumped at the chance. What we’ve got now is not perfect but it is thousands of dollars per year better than nothing.

Right now I think a lot of my stress comes from just not knowing what is going on. Through the early months of working out the logistics of Medicare, Dexcom did not do a good job of communicating with seniors. Some people were getting email updates. Others of us called Dexcom numerous times to be put on “The List” and never received any information. Seniors are still being told different things by different representatives from Dexcom, DME suppliers, pump companies, and medical professionals. Fortunately there is now some information on the Dexcom website but it does not answer all of my questions. I will definitely have an easier time coping once I know the rules of the game along with hardware and software modifications.

For the most part I am resigned to the Medicare restrictions and am working to accept them. In the short run I think we need to get Medicare reimbursement established before fighting the smartphone ban. Others disagree with me and are making calls, writing letters, starting petitions, and even hiring lawyers. And that is good because although patience is sometimes the best strategy, other times anger and in-your-face advocacy are the only way to force change.

Right now I know that whatever the policy ends up being, I will adapt. I haven’t used a receiver in years, but I’ll get used to it again. I can’t live in fighting mode all of the time and right now need to find acceptance. Although I know that I will eventually take my place on the battlefield fighting Medicare CGM policies, at the moment I am choosing to let things take their course and trust that Dexcom and JDRF will get this changed. At the same time I am cheering on those actively opposing Medicare. One online friend sums up my views perfectly:

“A year or two ago we were all writing letters to our Congressmen to get on board with a bill to have Medicare pay for the Dexcom. Now that is is approved, I’ve decided to let go of any anger and resentment (never does a diabetic good anyway) and am thankful for the approval and the fact that I won’t be paying out of pocket anymore, despite the absurdity of Medicare’s restrictions. However, I will still work in any way I can to change those restrictions if possible.”

Another senior stated it even more succinctly:

“It is what it is. You want Dexcom through Medicare? You sign the form.”

Amen.

 

Note: This blogpost only addresses the smartphone ban for Medicare coverage of the Dexcom G5. There are other problematic policies such as only 2 test strips per day being provided to CGM users. Those issues are in the wait-and-see category and worthy of discussion another time.

26 thoughts on “Medicare and CGM Coverage: Swirling Emotions

  1. One step at a time. I know how important it is to have share and how convenient it is to use the phone application. I honestly have never used either, but I do want both, not for me, but because it is the right thing to have. Let’s count the blessing that we have come this far, and acknowledge we have more to go, but we will get there.

  2. I am probably wrong but I interpret the Medicare statement that they will not pay for a tablet, phone etc. it doesn’t say that you can’t only that they will not pay for a non DME device. I know many smarter people have thoroughly read the restriction and determined that if you use a tablet or a phone Medicare will not pay for your G5. Do you think that you must state that you will only use a DME receiver to determine insulin requirements so that Medicare avoids liability for any errors created by a non DME device. I was surprised by the wording in Medicare’s statement.

    • Unfortunately those who are receiving Dexcom G5 bundles have to agree that the will not use their smartphones. If you follow the link in my post to the Dexcom website, you get this info:

      “Note: With the initial Medicare coverage ruling, there is a requirement that patients only use the Dexcom G5 Receiver to view their glucose data and not a smart phone or other device. We realize that many patients want to use their smart phone to view their glucose data and we are continuing to work with CMS regarding this decision. For now, exclusive use of the G5 receiver is the requirement for Medicare reimbursement. Dexcom has no ability to override this decision, therefore, we must advise our customers not to use the app with the Medicare product. If a patient feels it is critical to have the ability to use the app, a non-Medicare reimbursed Dexcom system is available for purchase with a prescription.

      • It’s even more sinister than it seams. Medicare has forced Dexcom to report ANY Medicare G5 CGM posting blood sugar data to the cloud (required for the Dexcom Share App). Anyone doing so, even in addition to using the Dexcom receiver (the only approved method) not only will Medicare end coverage for those patients but they can/will be billed for prior coverage.
        Restricting this additional App option, or any additional Diabetic Managements puts thousands of Insulin Dependent Diabetics with Hypoglycemic Unawareness (like myself) at serious risk, PERIOD!
        How and why can they do this? Doesn’t this violate HIPPA??
        I DISSAGREE WITH THE NOTION OF “BEING HAPPY WE NOW HAVE CGM COVERAGE”. AND I URGE ALL TO CONTACT THEIR SENITORS TO FORCE ACTIONS AGAINST THIS RULING. (As I am with Senetor Elizabeth Warren’s office)
        TOGETHER OUR VOICE CANNOT BE IGNORED!!

      • Trent-

        I have heard mixed things on how the cell phone use will be monitored and you’re right that there are a lot of potential HIPAA violations. I think that Dexcom is doing all it can to prevent us from using cell phones so that it can prove to Medicare that its procedures are good enough that Medicare doesn’t start policing Dexcom records. But right now no one knows exactly how this will be enforced.

        Thanks for your activism because it will take all of us working to get this changed.

      • Trent Schemerhorn
        Do you have any “solid” facts from Dexcom or Medicare that there are also restrictions on being able to upload the G5 Receiver data to the Dexcom Clarity Cloud/Software to be able to view, share and print reports from the accumulated data?

      • I spoke to a Dexcom representative on the phone a couple of days ago. I told her my concerns. She didn’t seem to think this ruling applied to family/friends using the Dexcom Follow App. We just can’t use the Dexcom G5® Mobile App. Hope this is true.

      • I assume that we can use the Follow app to cover other people, but there is no way for seniors to get their own data into the cloud for others to follow us without using the Dexcom G5 app. I take that back, if Dexcom does not change the transmitters, one can use xDrip probably without getting caught. But you are breaking the rules to have your Medicare-provided transmitters communicate with a smartphone. You can download your receivers with a USB cord to get it into Clarity, but there is no live communication so that others can follow us.

      • Maybe the Dexcom rep doesn’t understand how it works? Since I don’t have a Dexcom yet, I assumed she knew what she was talking about. and didn’t question her. Hmm…back to square one. I sure hope there’s a way we can let others “follow” us. That’s one of the reasons I really want the Dexcom.

      • Unfortunately the horrendous Medicare policy makes it impossible for Medicare beneficiaries to use the Dexcom G5 app. Therefore they lose the safety benefits of having someone follow their BG levels and be alerted to dangerous highs and lows. Hopefully the policy will change but that is what it is now.

  3. I’m thankful for all the hard work that has gone into this getting this far! I’m a ways away from Medicare, but feel this is an important step forward for all of us, and trust that the ridiculous limitations will be changed soon!

  4. Is it that Medicare needs to pretend (or at least pretend to not have noticed) that Share, Follow, phones, watches, etc have health and safety benefits? If a benefit were noticed, would they risk a situation where they’d have to pay for the phone/watch, and that would be too costly and wreck the whole thing?

    I think Medicare needs a way to continue to pretend to not notice the benefits of Share/Follow and WE need a hack that allows Medicare users to use them, undetected. Surely that will come along soon, while we’re in this awkward phase…?

    • I think that everything at Medicare moves at a snail’s speed so we will just see what happens. Thinking that there will eventually be hacks but we’ll need to keep them quiet and on the dark Internet….

  5. Indeed it is a Big Plus that we are getting the coverage for CGM, that it is being recognized as a very valuable tool for making our lives better. It is the “threatening language” in the AOB – “I understand that if I access my CGM readings on a mobile device, I will lose Medicare coverage retroactively for the entire period during which I violated this Medicare coverage rule” that I take exception to. Currently my eyesight is OK but I have friends who do have issues in seeing data on the Receiver and need the improved visibility of other devices, i.e. iPad. So I will be OK as long as my vision is good but if I have an issue later I will be penalized no matter what I do to keep my eyesight, whether I agree to pay for the other device or not. No “compassionate exception”, you’ve signed an agreement enforceable by law!

    • George, I can’t disagree with anything you are saying except that maybe I am more optimistic that these things will eventually be worked out. Of course it may be according to Medicare snail time…. Although I don’t need vision accommodations or a caretaker following me at this point, that doesn’t mean that others don’t. Also I know that my needs will continue to change as I get older or my health status changes. Thanks for reading and for your thoughts-

      • If a senior is alone and has a dangerous low and as a result of not being able to communicate that to another via their iphone and ends up in the hospital or worse can Medicare be sued for denying the use of the cell phone app with the dexcom? I feel like denying somebody a life saving aspect of an approved devise should be illegal.

      • I doubt that anyone is allowed to sue Medicare and of course it is nonsensical to deny the Share/Follow feature. Hopefully it will get changed before attorneys have to get involved and I am not sure what the process for that would be. I continue to have faith that the work that Dexcom is doing to change the policy will be successful. Thanks for sharing your views, Cheryll.

  6. so why not just agree then use a mobile device regardless? As far as I know there is no way that the G5 transmitter shows it was linked to the receiver AND a phone (but hardware will allow this)…. thus no way to prove you were not in compliance with their rules.

    • If you activate your transmitter with the G5 app, Dexcom absolutely knows. There are some work-arounds with xDrip which are easy to do on an Android phone and not as easy on an iPhone. I have not seen the final paperwork for getting Medicare coverage, but my understanding is that you sign that you absolutely will not link to a smartphone and that there if you use a smart device, your forfeit Medicare reimbursement and could be subject to criminal penalties. Once again I have not seen the document. I have also heard that there will be hardware changes made to the transmitters for Medicare recipients but don’t have firsthand knowledge that is true. Three months and six months from now we will all know a lot more. Dexcom is actively working with CMS to get this restriction changed.

      • Not only will you lose your coverage it says it will be retroactive meaning you’ll have to pay them back for previous coverage.

        I was looking forward to using my smart phone to customize my alarm to a doorbell at night so my dog would bark and wake me up as I sometimes sleep through my alarms. I just don’t see how Medicare is legally able to put this restriction on us, telling what we can and can do with a devises we bought and own. I hope an attorney is able to successfully challenge this ruling.

      • Dexcom had to abide with Medicare’s no App usage and play by their rules even though they disagree and are trying to change the CMS rule. The sole reason is that Medicare doesn’t want someone claiming Medicare must provide smart technology and service for IDDM patients. Any share type app shares data via the cloud and Medicare forced Dexcom to report ANY Medicare G5 (pachaged as Medicare G5) sharing data to the cloud.
        Being happy that we now get CGM coverage through Medicare and waiting to hope someone else fixes this ISN’T an option. We all must first file an appeal with Medicare to allow us to elivate the issue to management in the Advanced Resolution Division of Medicare since these are case by case issues. We must also demand our local legslators be aware of this rediculous descrimination and life-threating ruling and fight to change this ASAP! And finally to engage your local AG because without Medicare coverage of CGM local state Medicade programs will bare the burdon.
        I have done all of these actions to force them to change. I remind them that their agencies were created protect and serve us, not control or limit us. And that we the people will force them to do the right thing, even if its for the wrong reason!
        Together our collective voices cannot be ignored and will create change!

  7. Laddie – Well stated and spot on. My “low profile” expired yesterday and to get my ‘gratis’ box of sensors I had to finally start the Medicare paperwork (I had already been through same with Liberty Medical last spring … all for naught).

    My Dexcom rep told me that using/not using the Smartphone APP was going to be an “honor” system for now. So, if CMS/Medicare does an ad-hoc review and find I’ve been using my Smartphone then my CGM coverage will be revoked and I’ll be charged for the product delivered since Medicare approval for same.

    My wife keeps a close eye on my via the Smartphone APPs, so this will be a negative/backwards change for us, but we will survive. As you have noted there are efforts well underway to try and get the restriction removed/changed.

    Patience and then more patience.

    Thanks for a great blog.

  8. Yikes, I’m not seeing this as an age thing… I’m not a senior (yet) but I do have Medicare because I’m currently on disability. Has Medicare offered up their reasoning for restricting this device in such critical ways? I have hypoglycemic unawareness and was desperately hoping my partner could get alerts for lows on her phone. What are they thinking? What purpose do these restrictions serve? Don’t get me wrong, I’ll be grateful to have access to such a life changing device, but why won’t they let us use it to its full potential? Doesn’t seem like a wise use of resources.

  9. Pingback: Tandem t:slim X2 and Dexcom G5:  It takes Flexibility | Test Guess and Go

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