History

On January 12, 2017, the Centers for Medicare & Medicaid Services (CMS) released a ruling indicating that the Dexcom G5 CGM was a therapeutic medical device and eligible for reimbursement as Durable Medical Equipment (DME). I published a blogpost on 1/15/17 discussing this ruling and I urge you to read it as background for what has been going on (or not going on) in the last six months.

On 6/1/17 Mike Hoskins of Diabetes Mine published an article titled “Stuck Waiting for Medicare CGM Access” and this is good background for connecting the dots from January to June. Yours truly (Laddie Lindahl in Minnesota!!!) was one of the seniors highlighted in the article. Mike summed up the last six months pretty well by writing:

“but so far CMS has not proposed a national coverage policy. As a result, many PWDs on Medicare who previously had coverage or are trying to get CGM coverage are being told they can’t get the devices and supplies they need because “nothing is finalized yet.”

I found the end of the Diabetes Mine article to be quite alarming as Mike suggested:

“Insurance companies send out their contracts to medical supply distributors during the summer months, leading up to open enrollment periods that typically start in the Fall months. So right now is a critical time. Contracts are being crafted and finalized, and with all this Medicare CGM confusion, insurers and third-party distributors may very well simply leave out any language about Dexcom G5 coverage. Effectively, Medicare CGM’ers could face no coverage for their Dexcom supplies for 2018 because so much is up in the air right now.”

I transitioned to Medicare in April anI have been able to continue using my Dexcom CGM due to an extra G4 transmitter saved from my free upgrade to the G5 and from a couple of boxes of stockpiled sensors. Everything I am using is out of warranty, but it works. I am okay….but only for a while. This spring it was announced that Liberty Medical was going to be the authorized Medicare supplier for the Dexcom G5. They were quickly overwhelmed by the demand. (Who knew that it was so complicated?) I placed an order with Liberty and canceled it within a few days of shipping. It had become common knowledge that Liberty was not being reimbursed by Medicare and those of us placing orders might be responsible for the out-of-pocket cost. Meanwhile Liberty withdrew from supplying G5 supplies under Medicare as of 5/28/17.

Where are We Now?

I have had no reliable information source during the last weeks and months, but I have managed to piece together some news. Here is some info with the source and I’ll let you judge the reliability.

Dexcom: Some people on Facebook have mentioned email updates from Dexcom and I have called the company several times and was assured that I was on “The List.” I’ve never received an email. Yesterday I called Dexcom and learned a few new things.

1) Dexcom has set up a Medicare link in their phone menu. Call the Customer Service number at 888-738-3646. Select Option #1 for placing an order. Within that menu, select Option #1 for Medicare Help. Please note that Dexcom is experiencing high call volume about Medicare and I waited almost 10 minutes on hold.

2) If you are desperately out of supplies, call Dexcom and in some cases they are providing supplies.

3) I suggest that you call Dexcom to ensure that your account has the correct insurance information. On Tuesday mine was showing private insurance and Edgepark as my supplier. It has now been corrected to show Medicare as my primary and BCBS as my supplemental.

4) I was told on Tuesday that we each have a “Reorder Specialist” assigned to our account. I found out the name of my specialist and got his contact information. I was told that these specialists are sending out the informational emails and I had not received any because I was not “in his pipeline.”

Facebook: I am in a Facebook group called Seniors with sensors (CGM’s) where members share their experiences and opinions. Of course a lot of the info is “my endo told me” or “the Dexcom email said” or “the letter from Liberty said.”  We all know that the world will collapse into a black hole when Facebook is the source of all knowledge, but here are some things that I have learned:

“I heard from my endo this morning that Dexcom will be doing their own distribution for their Medicare CGM products. No third party like Liberty Medical (thank god.) The hang up at the moment is they are looking for a supplier for meters/strips which Medicare is requiring.” 6/21/17

“Dexcom also told me this week that they will be distributors.” 6/21/17

“I just got off the phone with a very nice Dex Customer Service Rep. Still many unanswered questions from Medicare but she says they expect to be alerting those on the waiting list by end of June” (The rep I spoke with yesterday was unwilling to give me any timetable.) 6/19/17

‘Did you get the email today from Dex with updated requirements from Medicare? They are ” working on it .” Still no way we can use phone / watch combo. I think that ageist and unfair.” 6/15/17

Diabetes Mine: In a 6/15/17 article about the ADA Scientific Sessions, Mike Hoskins and Amy Tenderich shared an update from Dexcom executives:

“If you’re wondering what’s going on with Medicare coverage of Dexcom CGM, here’s the rub: CMS has mandated that Dexcom ship out to Medicare patients “everything they would need” to use the product. Since calibrations with a fingerstick meter are required, that means Dexcom has to find a traditional meter company to partner with to actually ship meters and test strips in the package with their CGM. Kinda crazy, and definitely creating delays for the company and its customers!”

The Part We Hate!

It is becoming increasingly clear that unless things change, Medicare users of the Dexcom G5 will be forbidden from using their smartphones in any form. I understand and previously wrote about the importance of the receiver in allowing the G5 to be designated as DME. The idea that one cannot use a smartphone in conjunction with the receiver is absurd. The dollar value of Medicare reimbursement is significant enough that I can go back to using my receiver, but I hate the idea of abandoning my phone and especially the ability to see my Dexcom numbers on my Apple Watch.

For me it is an inconvenience. But how about those seniors who benefit from someone using the Follow app to monitor their BG trends. How about those seniors who use the accessibility features of their iPhone to access their BG numbers?

It is a stupid requirement. At the same time, my personal feeling is that we need to establish Medicare CGM coverage before we fight this battle. If you read the original CMS ruling, the only reason that the Dexcom G5 qualifies as DME is because of the receiver. If we don’t need the receiver, then unfortunately the G5 is no longer DME. So we need to be careful. That is my 2 cents!!!

What Others Are Saying?

When I began writing this blogpost, I asked my fellow seniors from the Seniors with sensors (CGM’s) Facebook group to share their thoughts. I learned a lot.

“Although it will be a inconvenience for most of us, which will hopefully be temporary, those using the Tandem X2 insulin pump or an Apple Watch series 2 should still be able to connect directly to the Dexcom G5 via Bluetooth by this fall with expected software upgrades from both Apple and Tandem”  —Larry

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. He had a severe car accident due to a low blood sugar which the initial 4 months of hospitalizations and rehabilitation cost almost 2 million dollars. If he would have just had a CGM it would have saved all that money, he would still be working and not on disability, and I would still be working. Every diabetic at diagnosis should get a CGM and certainly should not get them taken away at medicare age. He got his after coming out of rehab. We as caregivers near and far need to be able to assist our diabetic family and friends with the features Dexcom has like Share and Follow. —Barry and Kim.

As a type one diabetic who lives alone, it is mandatory to have a CGM that is 100% covered by Medicare. This is a lifesaver. As much as I would hate to be without either my Tandem pump or my Dexcom CGM, my Dexcom is crucial to my daily survival. I will be eligible for Medicare in September, 2017, and I am so very disappointed to find that I will have fewer benefits than I do with private insurance now.  —Cindy

Laddie, my biggest concern is with the exclusion of phones, and especially smart watches from Medicare’s program. In my opinion the use of a Smartwatch to manage Bg and treat T1D is a major advance in T1D care. It is a real time process. No phone need come out of a pocket, no receiver from same or elsewhere. Tap your watch,see your Bg, make treatment decisions in real time. I have been absolutely amazed by this one simple process and the impact it’s had on my life and T1D management. Somehow we must get Medicare to recognize this and allow the use of this technology for treatment. Either that or Dexcom has to build a receiver/watch.  —Dave

I am a Therapist. The watch being important to my work. It is not possible for me to check my blood sugar on a receiver or even a phone at this point during office visits. This restriction on app use is going to cause a problem for me .  —Deidre

Two Medicare people in my household. Repeatedly denied CGM coverage despite multiple appeals and documented Certificates of Medical Necessity the app by my PCP/Endo. Brittle Type 1 46 years with history of severe hypos with seizures and one incident of Nocturnal hypoglycemia leading to coma. One incident of severe DKA requiring 5 days in ICU.  —John

I haven’t experienced a coma yet, but that’s what happens when you have no cgms or no partner to watch over you.  —Dianna

I know, Dianna. Before my CGM I was almost afraid to go to sleep at night.  —Cindy

Signed up for the CGM in January. Now middle of June. Still waiting. Yesterday, another low where I crawled to kitchen for OJ. Made it again. Every time, I wonder when the time will come when I don’t make it.  —Camille

Summary

I think that Camille said it all:  “Yesterday, another low where I crawled to kitchen for OJ. Made it again. Every time, I wonder when the time will come when I don’t make it.”