March Miscellany

It is a new month and time for opinionated comments and updates.

It Shouldn’t Be This Hard:  Earlier this week I ordered my February Medicare bundle from Dexcom. I am also in the process of trying to get my 90-day insulin prescription under Medicare Part B. I’ll politely say with no curse words that none of this is going well. I am turning into the “Always-B*tching Blogger” because this stuff is so hard. And it shouldn’t be. I am just trying to do what I did last month and the month before with Dexcom and 3, 6, 9 months ago with Walgreens and insulin. 

I will eventually get out of Dexcom “Processing” limbo and my supplies will be  shipped. Some Medicare recipients have been told that shipments are delayed 7-10 days due to high volume. Long call waits, shipments delays, and moving Call Support to the Philippines have not made Dexcom a popular company in the diabetes online community. ‘Nuff said. And Walgreens will figure out how to get Medicare coverage for my insulin.

At the same time, I like the ring of Always-B*tching Blogger and you can just think of me as ABB!

The Weather:  I have spent winters in Arizona for 15+ years and have never seen snow. That changed last week with 3 inches of the white stuff. Fortunately despite a few downed tree limbs, we had little damage. 

Finally spring has arrived and the Arizona that I know and love is back.

Ground Squirrels:  Although my landscape and flowers survived the snow, I am totally losing the battle with ground squirrels. These horrible creatures are “protected” in Arizona and my exterminator isn’t allowed to poison them. Plantskyd which deters rabbits and deer in Minnesota is impotent. My normally gorgeous March geraniums are decimated. This photo is one day after replanting and an ample dosing of Plantskyd.

The Dog:  All of my readers are kind to read about my dog and her journey through aging and illness. I have come to terms with her limitations and the fact that we only walk half a block twice a day. Otherwise she is happy, eats well, drinks well, poops well, plays fetch with her Bouda giraffe, and wags her tail. Despite me being her caretaker, feeder, medicine dispenser, Bouda thrower, etc., she loves my husband the best and delegates me to #2. Like a teenager, she loves baking in the sun on our back patio.

Animas/Medtronic/Tandem: My Animas pump went out of warranty in late 2016, but I still get emails from Animas and Medtronic about switching to a Medtronic pump system. I am committed to Dexcom and see Tandem and maybe Omnipod as my future. Until Medtronic sensors are reimbursed by Medicare, there is no way that I will take a chance on a CGM that is out-of-pocket. At the same time I have struggled for 2+ years with occlusion alarms on my Tandem X2 and have been back using my Animas Vibe trouble-free for the last 3 months. 

Kinda Whole 30: I have written about Whole 30 and my imperfection at succeeding through 30 days. But I periodically go back on the reset diet and am amazed at how fabulous my blood sugars react to no dairy and no grains. I eat a ton of fruit on this diet and get no spikes. Because I have hosted two dinner parties in the last week, I have once again have strayed from perfect adherence and have had wine. But here is a 24-hour Dexcom tracing that speaks for itself.

Thank-you.  As always, I am grateful for my online diabetes contacts. Keep up the good fight, my friends, and keep in touch. Without you, my diabetes would be really, really hard instead of just really hard. Diabetes social media makes a difference. 

Days in a Month with Diabetes

30 days hath September,

April, June and November.

All the rest have 31.

And February’s great with 28

                                     And Leap Year’s February’s fine with 29.

Medicare rations diabetes supplies on a strict 30-day or 90-day cycle. My Medicare suppliers are even worse and tend to think that months have 35 days and quarters have about 95-100 days.

Unfortunately no one has communicated that to my diabetes which trucks along with a strict 24/7/365 (or 24/7/366 in a Leap year) schedule.

I continue to rejoice that my Dexcom G5 CGM is covered by Medicare, but it has been frustrating that Medicare currently requires Dexcom to send out supplies monthly rather than quarterly. The personnel and shipping costs for Dexcom for this monthly distribution are probably substantial and every month seems to leak a few days between shipments. In 2018 most of my shipments were a couple of days to a week late and over the course of 12 months, I only received 11 Dexcom shipments. My guess is that my experience is reflective of that of most Medicare beneficiaries. That means that Dexcom lost one monthly subscription fee for each of us and that is a lot of money for a small company. I was lucky to come into Medicare with a cushion of CGM supplies and I have been okay with constantly late deliveries. I also know about Spike and xDrip where you can reset G5 transmitters to last longer than the software-mandated death of 90-104 days. But some Medicare users have had to go without their CGM when sensors and particularly transmitters have been delayed. There is sometimes an excuse such as backordered transmitters or insurance verification. This month I placed my order on the designated day and the very nice Dexcom rep offered no excuse when she said it wouldn’t ship for another week.

I have been most impacted by pump supplies. I went on Medicare in April of 2017 and I received my 4 boxes of pump supplies like clockwork. Medicare strictly requires that each infusion set will last 3 days and allows no cushion for painful or failed sites. Or aging skin and tissue which require 2 day sets changes. Or steel cannula sets which mandate a 2 day change. In 2017 my doctor’s letter of medical necessity for 4 boxes instead of 3 was accepted and I got the needed supplies. My first order of 2018 was shorted a box and the supplier was unwilling to work with me to override the restriction. I switched suppliers and seeming the override was fine. But they sent the order 10 days late. In infusion set language, 10 days is half a box of supplies for me. Then 3 months later, they wouldn’t send my order until 92 days had passed. Then the next order was another 10 days late. 

I have recently switched to Tandem TruSteel sets and seem to have better insulin absorption than with my previous VariSoft sets. And guess what! You can move the needle part of the set, reinsert it, and tape it down to get another day or two from the set. After two days, 90% of my TruSteel sites are slightly inflamed. So you go, Grandma!. Pull out the needle and tack it into another location. So far I have had no real infections and fortunately am very pain-sensitive and don’t try to extend puffy sites. But we all know that one ER visit or hospitalization would quickly blast past my Medicare-approved cost of $5.91 per infusion set.

Meanwhile diabetes keeps trucking along.

1, 2, 3, 4…..90 days.

If I did not extend infusion sets and have a stash, I would run out of supplies. 

Medicare teaches you to lie. When you call your supplier to renew your 90-day supply, you can’t have more than a week (or is it 10 days?) worth of pump supplies in your D-tub. I would never in a million years be comfortable being down to 3 or 4 infusion sets before ordering more. With Dexcom the policy seem to be more liberal and I can get 5 sensors and 3 boxes of test strips if I am out of supplies. But even a failed transmitter doesn’t seem to get me better than 3-day shipping. My suppliers have failed me in the past and I don’t trust them to bail me out in an emergency. So I always tell them that I have fewer supplies than I really have. Because….

Diabetes keeps trucking along.

I have never sold excess supplies and I no longer share excess supplies. But as someone who has lived with Type 1 diabetes for 42 years, I know that I cannot risk being without insulin for 5 minutes or pump supplies for 5 hours or CGM supplies for 5 days. 

One of my Medicare diabetes online friends once told me that every 90 days she feels as though she is recreating the wheel and resetting her diabetes life. With Dexcom it is every 30 days.

I get it now. That’s the game. And that is the game I play.

Type 1 Diabetes and my Medicare Drug Plan

There is nothing special about today’s blogpost. It is just my experience choosing a new Medicare Part D drug plan. My only advice to you is to consider what you require in a drug plan and what the financial ramifications are. Don’t assume that what you used in 2018 is your best choice for 2019.

I now understand one way that Medicare drug plans make lots of money. I am only in my second year of Medicare and it is obvious that it would be easier to stay with what I am doing rather than make a change is logical and financially-expedient. Inertia. Yeah, it’s easier to do nothing than to do something. It can be laziness or just comfort in living with what you know. But you have to remember that doing nothing is a decision and that decision may not be the best decision.

My current drug plan has worked well since I went on Medicare in the spring of 2017. But I have recently started taking an arthritis drug that is not part of that plan’s formulary. It is not a hugely expensive drug; it is just a lesser-prescribed anti-inflammatory. I have received an exception-to-formulary approval for the medicine through 2019 but the monthly co-pay is almost as much as my monthly premium cost. 

So I have wisely gotten off my duff and gone to the Medicare Find-a-Plan website to compare 2019 Part D plans available in my area. I entered my zip code, answered some basic questions, and listed the drugs that I take. I only take 3 drugs under my Part D plan and it didn’t take long to enter the names and dosages. If you have a long list, you can save your drugs to a password-protected drug ID so that you don’t have to enter them every time you visit the website.

I entered my desired pharmacies and selected the option to look at drug plans. You can also use this option to compare Advantage plans.

The wisdom of examining my 2019 choices was immediately apparent. Having entered Walgreens, CVS, and mail order as choices, the cheapest option combining premiums, deductibles, and drug costs was $231 for CVS mail order and $233 for CVS retail. The tenth cheapest plan would be almost $900! Staying with my current plan would be almost $700. Formulary is the name-of-the-game in choosing a Medicare drug plan….

Sometimes money is not the only decision-making factor in choosing a drug plan. As mentioned above, my cheapest drug plan option for 2019 would involve switching to CVS and I have three reasons for wanting to stay with Walgreens.

One, I have used Walgreens for most of my adult life. It has always worked well and my philosophy is “if it ain’t broke, don’t fix it.”

Two, as someone who uses an insulin pump, my insulin is covered under Medicare Part B rather than through my drug plan. The savings are huge because Medicare pays 80% of the cost of my insulin and my Medigap policy pays the remaining 20% leaving me with no out-of-pocket cost for insulin. Due to Medicare regulations and unawareness of this coverage by many pharmacies, it can be difficult to establish and maintain Part B insulin coverage. Before I started Medicare, I was advised by several Type 1 friends that Walgreens and its national Medicare department is one of the best pharmacies for setting up Part B insulin. I have online diabetes friends who get their Part B insulin successfully from CVS, Krogers, and other pharmacy chains, but once again for me “if it ain’t broke, don’t fix it.” I could probably get Part B insulin at Walgreens and other prescriptions at CVS, but I prefer having my prescriptions with one pharmacy. Convenience for me and I think that the occasional glitches in receiving Part B insulin are more easily resolved because I am well-known at my local pharmacy.

Three, I am a snowbird and leave the cold and snow of Minnesota in late December. The idea of transferring my prescriptions in 2019 to CVS through a pharmacy in Arizona seems overly complicated. I am willing to pay a premium to avoid the potential problems of the switch.

I am mostly sure of the drug plan that I am selecting for 2019. It only has two stars out of five stars and at Amazon that might scare me. But my previous Part D plan only had two stars and it was fine. I am lucky that I do not take expensive drugs and even luckier that I do not pay for insulin through Part D. But even still, a wrong part D plan could be an expensive mistake. If I do nothing, I will be automatically enrolled in my previous plan and that would be an expensive default. FYI I do not have to cancel the old plan; that will happen automatically when I I enroll in a new plan.

This blogpost is certainly not a “how-to” post. However, it is a reminder that if you are on Medicare, don’t assume that what you did in 2018 is the best choice for 2019. I’ve gotten off my duff. Be sure that you do the same. You have until December 7 to make a change or confirm that your current plan is still your best option.

Lots of I Don’t Know’s

Okay. Let’s talk about Basic Medicare** and the Dexcom G6. Then let’s talk about Basic Medicare** and Tandem Basal IQ. And then let’s just admit that we don’t know the answers to our questions and that we’re not going to get answers in the next 5 minutes.

Who, what, when, where, why? 

Yeah, I don’t have a clue.

As someone on Medicare I’ve felt left out in some of my Facebook groups recently. In the Dexcom D5/G6 Users group and the DEXCOM G6 group, the vast majority of topics are about the G6. Do you like it? What is great? What is terrible? Adhesives, accuracy, and sensor longevity. Insurance and supply issues. The Tandem tSlim Pump group is all about Basal IQ with the majority of users stating that it is fabulous. There are questions about how it works and at what point basal insulin is suspended and then resumed. Stories about climbing Mt. Everest and others wondering about how to coordinate the prescription from their doctor, the training, and the software download. I don’t fit in anymore and I have no advice to give. In fact I am a little bored in these groups and mostly not checking in.

You see—I’m on Medicare. I don’t have the Dexcom G6 and my Tandem X2 t:slim pump is not updated to Basal IQ. I am not whining. Okay, maybe I am–just a little. But mostly I am just stating facts.

After weeks of rumors, it was officially announced on October 16 that Medicare will begin covering the Dexcom G6 for Medicare recipients. The nitty-gritty has not been worked out but it is estimated that April 2019 is a reasonable target date.

For those of us who have been involved in advocacy for CGM coverage by Medicare for years and who have been joyously receiving coverage since the second half of 2017, this announcement is welcomed but generates more questions than answers. I think that the more you know, the more questions you have. Addressing customers on the Dexcom G5, the news release states:

“Once G6 is available, Dexcom will be reaching out to current Medicare G5 customers when their transmitter is eligible to be replaced. Dexcom will also discuss the G6 and the Medicare beneficiary’s eligibility during routine monthly contact.”

That sounds very straight forward but I worry that it is not. The elephant in the room for those of us on G5 is The Receiver. In January 2017 after the initial approval of the Dexcom G5 by Medicare, I wrote a post titled “Medicare and CGM Coverage: Love Your Receiver!” and explained how Medicare justified the approval of the G5 as Durable Medical Equipment (DME) because the receiver had an estimated 3-year life. Therefore for those of us on Medicare, the G5 receiver has a 3-year warranty. Although we are now allowed to use our smart devices to read our G5 data, Medicare regulations still state that the smartphone is used “in conjunction with” the receiver. And FDA approval of both the Dexcom G5 and G6 requires a receiver to be provided as part of the initial bundle.

I have an old-style Dexcom G5 receiver that cannot be updated to G6 in contrast with the newer touchscreen G5 receiver that can be updated remotely to G6. Medicare through stupid regulations that I don’t understand does not allow Medicare recipients to participate in manufacturer upgrade programs. Thus Dexcom cannot give me the option of paying $100 or $25 or whatever to exchange my dated receiver for a touchscreen G5 or G6 receiver. 

Technically my G5 receiver is warrantied for 3 years and I can’t upgrade it. Am I going to be able to switch to the Dexcom G6? Interestingly, the Dexcom press release only addresses the transmitter and makes no mention of the receiver. Without knowing the details of Dexcom/Medicare negotiations, I have no way of knowing my status. Is everyone forgetting the FDA requirement of the G6 receiver? Is Dexcom going to provide G6 receivers to current G5 users at no charge? Will I get a G6 transmitter and sensors without a receiver? IMO there is no way in h*ll that Medicare will pay for another receiver. Because the Medicare/Dexcom relationship is on a subscription basis, will all of the previous rules about upgrades be thrown to the wind?

As I said above, the estimate is that Dexcom G6 products will be provided to Medicare recipients starting in April of 2019. I have neither seen nor heard of specifics regarding this rollout. There are lots of discussions and rumors floating around Facebook but no one really knows. I have been on Medicare long enough to live by the mantra: “When I know, I’ll know. Until then, I won’t.”

If I were not using a Tandem X2 pump, I would not care much about using Dexcom G6. I look forward to an easier insertion and no required calibrations with the G6, but neither is a huge deal for me. But I really look forward to updating my Tandem X2 pump to Basal IQ which automatically shuts off basal with predicted lows. And then the future Control IQ which will function as an early generation artificial pancreas. 

But if things are in the dark with Dexcom and Medicare, they are really in the dark with Tandem and Medicare. The last communication I had from Tandem regarding the use of my pump as a receiver for my Dexcom CGM was in November 2017. The webmail stated:

“Dear Customer: As someone who, according to our records, has a t:slim X2™ Pump and also has Medicare for health insurance benefits, you may be aware that Medicare coverage of continuous glucose monitoring (CGM) is limited to viewing CGM data only on a Dexcom receiver and NOT a smart phone or an insulin pump.”

Since then I have heard nothing.

Frankly I think that the current Tandem policy regarding Medicare is: “Live and let live.” Some people are being told by their Tandem reps that it is okay to use their pump with Dexcom. But I do not think that is true because there has been no official announcement allowing the pump as a Dexcom receiver. At the same time there is no enforcement of the policy and Tandem is not sending reminder emails about Medicare. Although one part of me thinks that it is poor customer policy that Tandem is not communicating with Medicare recipients, the other part is okay with just ignoring the problem.

Unfortunately the problem of Tandem and Medicare will come to a head when the Dexcom G6 is distributed to Medicare users. Will we be allowed to download the Basal IQ software update (which requires G6) to our X2 pumps? Tandem has said nothing and unfortunately IMO it would be a total violation of current Medicare policies to allow the update.

Once again we don’t know the answers.

No answers to who, what, when, where, why.

Just a reminder to be patient and go with the flow…

Of no information…

and…

Fingers crossed for the ability of those on Medicare to benefit from the latest and greatest in diabetes technology.

Until then, just remember the Medicare mantra:

“When I know, I’ll know. Until then, I won’t.”

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** Please note that although Medicare Advantage plans must cover everything covered by Basic Medicare, they may have more flexible policies than Basic Medicare and provide more benefits. Currently some of these plans are already covering the Dexcom G6, but most are in line with Basic Medicare.

Medicare-Dexcom-Smartphones:  Wait! Just Wait!

On 6/11/18 Medicare announced a change in policy to allow Medicare beneficiaries to use smartphones in conjunction with continuous glucose monitors.

“After a thorough review of the law and our regulations, CMS is announcing that Medicare’s published coverage policy for CGMs will be modified to support the use of CGMs in conjunction with a smartphone, including the important data sharing function they provide for patients and their families.

The Durable Medical Equipment Medicare Administrative Contractors will issue a revised policy article in the near future, at which time the published change will be effective.”

I have not blogged about this change for several reasons. 1) I am a lazy blogger. 2) I was quoted extensively in articles by Diabetes Mine and Diabetes Daily about my reactions to the announcement. 3) Most of my diabetes preaching these days takes place on Facebook. Today I decided to enter the arena with a blogpost because of the chaos on diabetes social media about what this announcement means and when it will be implemented.

Dexcom initiated the confusion with a 6/11/18 press release that states: “With nearly half of adults ages 65 and up using smartphones, Medicare diabetes patients are now able to use the Dexcom Share feature that allows users to share glucose information with up to five loved ones or caregivers.”

The problem is the word “now.” Now is not the near future as stated by CMS. Adding to the confusion is that a definitive policy was not communicated and standardized throughout the Dexcom organization and some Medicare beneficiaries were told by Dexcom reps that they could immediately begin using the G5 Mobile App. 

A couple of Facebook quotes:

“Damnit. Dexcom said it was good to go last night.”

“I called Dexcom support/app & software department again today they checked & confirmed that we could start using it as of June 11.”

“It would help us all if CMS or Dexcom would give a definitive statement about when. There is no hard statement about waiting.”

On top of that, Diatribe (whom I normally consider to be the Gospel of Diabetes) published an article that is not entirely correct. It states: “Like other users, G5 Medicare beneficiaries can now choose to view real-time glucose data on the G5 app only, the receiver only, or both devices.”

Christel Marchand Aprigliano of DPAC who has met extensively with Dexcom and Tandem in regards to the Medicare negotiations responded on Facebook: “The receiver will still be part of the system. It is still required as part of any Medicare contract. The usage of the app will be in addition to the receiver.”

She also stated:

“While I can’t speak for CMS (Who will obviously have the final say), the meeting on Wednesday was that it would be receiver + smart phone. The receiver is durable medical equipment and the modification of language will reflect the addition of smart device (but not the purchase of said smart device).”

The date of implementation for the policy change is somewhat murky. A Dexcom official confirmed with Medicare diabetes advocate, Larry Thomas, that: “It becomes official on June 21. The technical correction notice must be updated in 10 business days from the notice.” Diatribe also wrote: “According to Dexcom, the deadline for the Centers for Medicare and Medicaid Services (CMS) to update the coverage policy is June 21, if not sooner.”

But Christel cautions us that regardless of date: 

“Do NOT download the app until the actual physical ruling has been changed.”

The last quote that I will share is a June 14 Facebook posting by Larry Thomas about his conversation with a Dexcom Medicare representative:

“The old regulations regarding NOT using the G5 app for Medicare patients are still in place and Dexcom representatives are still required and instructed to report you to Medicare if you are using the G5 mobile app until the rules are changed. This means not only will you be back charged if you are not in compliance, but you will possibly lose future coverage for Dexcom CGM supplies in the future i.e. you will become a cash-only patient with Dexcom. These are her words not mine. If you doubt them please call and speak with a representative in the Medicare department at Dexcom. Remember, just because a tech support person or app support person gives you the okay to use the app, it does not waive your responsibility to abide by the written contract you signed in order for you to get coverage by Medicare for the Dexcom CGM system. I have again requested Dexcom to send out an email to all of us affected by this situation to clarify that it’s “not a done deal yet” (again her words not mine) and have also reached out (again) to the media release department at Dexcom to change the media release so that people are not confused by this.”

*******

What you need to know if your Dexcom G5 is being reimbursed by Medicare:

1)  You are not yet allowed to use the Dexcom G5 Mobile App. You must wait until the revised policy is issued by DME Medicare Administrative Contractors (MAC’s) such as Noridian. If you use your smartphone before this revision is released, you are in violation of Medicare policy and risk losing Medicare reimbursement for your Dexcom G5.

2)  It is highly unlikely that you will be able to your smartphone exclusively without some use of the receiver. “In conjunction” means “with” and “combining” not burying the receiver in a sock drawer. IMO it is best to refrain from sharing your receiver-avoidance intentions on social media until the final CMS policies are released. Don’t give CMS ammunition to contrive stupid roadblocks to reasonable CGM use by Medicare beneficiaries.

3)  Do not call Dexcom at this time. Christel Marchand Aprigliano of DPAC told me: “Tell everyone to wait for the policy change from CMS in writing – Dexcom will put out information when it becomes available. Please kindly also remind them that the customer service department at Dexcom is trying very hard to provide good customer service, but it is not in anyone’s best interest to call – wait for the announcement published by Dexcom on the website (and I’m sure we will be announcing this as well.)”

4)  Nothing about this recent change in policy affects the use of the Tandem X2 insulin pump as a CGM receiver. Although Tandem and Dexcom are in negotiation with CMS, the current policy is that Medicare beneficiaries are forbidden from using their Tandem t:slim X2 pumps as a Dexcom G5 receiver.

*******

Special thanks to Christel Marchand Aprigliano of DPAC and Larry Thomas, bulldog Medicare diabetes advocate, for giving me permission to share their words.

Note that all bold text in this post is my emphasis and not that of the organization or person being quoted.

One Year on Medicare:  Advocacy versus Acceptance

On April 1 I celebrated Easter, traded April Fools’ Day jokes with the grandkids, and acknowledged the festival of Passover. Although I didn’t think of it that day, it was also my one-year anniversary of going onto Medicare. Is that a Medicaversary???

In general Medicare has been okay. I think that I made the right choice going with Basic Medicare and a Supplemental plan rather than a Cost plan (Minnesota’s hybrid version of an Advantage plan). At the same time I have the nagging feeling that I should have put more thought into the possibility of remaining a dependent on my husband’s insurance.

Almost everything that I have needed medically in the last year has been covered by Medicare but it has been a lot more work than my previous interactions with private insurance. Initially a few of my providers and suppliers made mistakes filing claims with Medicare. My Welcome to Medicare visit and a few routine screening tests were denied because a front desk clerk scanned my Medicare card but did not enter Medicare as my primary insurance. Then they entered the wrong date for my Medicare start date. I received lots of denial of service notifications but never a bill and it took a bunch of phone calls to get everything worked out. It was a PITA but not stressful because I knew that Medicare was supposed to pay for everything. There is a reason that Medicare is primarily for retired people because sometimes you need lots of time to navigate the system.

I have had two other issues with Medicare. The first has been discussed extensively on my blog and is the Medicare ban on smartphone/pump use with my Dexcom G5 system. I truly believe that this will eventually be remedied and I have heard from a reliable source that it might be in late 2018. But I’ll believe it when I see it. The second is that starting in 2018 my pump supplier (CCS Medical) has refused to provide the number of infusion sets that I require and my doctor prescribes. Chart notes and letters of medical necessity have been submitted twice. CCS has continued to deny the supplies claiming a change in Medicare rules and has been particularly unhelpful in resolving the problem. Because I know others who have been receiving their prescribed supplies without problems in 2018, I have determined that CCS Medical is the problem and am switching to another supplier.

These days a lot of my diabetes support and information comes from Facebook and direct communication with personal and online D-friends. We each have our own journey through Medicare just as we do with diabetes. Some are satisfied. Others are sad, many are frustrated, and a few are down right mad. Those emotions can change daily.

There are definite pluses and minuses with Facebook. The pluses are that people are very generous with information and it spreads like wildfire. I get the latest diabetes news and learn a lot from other people’s experiences. I belong to about 20 groups but am most active in the Seniors with Sensors, Dexcom G5 Users, and Tandem tSlim Pump groups. There is not a lot of Type 1 diabetes-specific Medicare information on the web and other seniors on Facebook are my best roadmap to navigating Medicare. 

Some of my quandary with Facebook and Medicare is coming to terms with how much I want to live in fight-mode versus how much I should be realistic and accept what is covered by Medicare. Many things that frustrate me about Medicare probably don’t impact my health or life significantly. I think it is stupid that I am required to see my endocrinologist every 90 days in order to get pump supplies. But it’s not a big deal. Although I hate carrying a Dexcom receiver and miss seeing my BG numbers on my Apple Watch, I do not require the accessibility functions of a smartphone or a follower of my CGM numbers. But other seniors do and I might tomorrow or next week. By no means I have been silent on the smartphone issue but at the moment I am willing to let the process work out with Dexcom negotiating with Medicare. I feel somewhat guilty living in the advocacy shadows and am appreciative of others who are more actively fighting. 

But advocacy can easily morph into complaining and anger. I don’t want to spend my senior years whining and feeling deprived because I don’t have the newest and greatest diabetes tech. At the same time I don’t want to live in the dark ages and miss out on new medications and D-tech that can ease the burden of diabetes in my life. 

Today I am one year into Medicare and basking in the mostly “okay-ness” of it. The rest of the story is still to be written and we’ll see how the next year goes.

Diabetes Supplies under Medicare: Hard Work

Yesterday a couple of diabetes friends on Medicare got in touch with me to see how things were going with the reorder of my pump and CGM supplies.

One friend emailed: “Just checking in to see how your Dexcom reorder went. Did it ship?  My bundle arrived yesterday (Tuesday).”

I replied: “My Dexcom reorder has not yet shipped…. It is being processed today so I expect it early next week.”

She also mentioned: “I am interested to hear how it goes when you order your pump supplies for 2 day changes.”

I replied: “I think that I will be getting 4 boxes of everything which is less than the 45 sets I would like but more than the 3 boxes the previous lady said….”

A second friend checked in through Messenger giving me an update of his D-life and indicating that everything was going smoothly with his Dexcom orders and his life in general.

I mentioned: “I haven’t written anything on my blog in a while because I don’t have much to say these days. That’s actually a good thing.”

A few hours later things fell apart and my smiles turned into grimaces of frustration. And here I am writing a blogpost.

Let me say that my supply orders are not completely straightforward. I am lucky to escape the cold and snow of Minnesota in the winter and spend several months in Arizona. I am paranoid about medical supplies ending up frozen on my front porch in Minnesota and always double-check with suppliers that they are using the Arizona address. Secondly I am at a stage in life that I need to change my infusion sets every 2 days. My skin and tissue have gotten less durable as I’ve aged and 3-day sites leave me with inflammation at the insertion site, itching and rashes, occasional bleeding, and poor absorption. Fortunately I had been warned in December that in 2018 Medicare was only covered 30 infusion sets every 90 days and I needed physician clinical notes to override that restriction. At my December endocrinologist appointment, I discussed this with my doctor and ensured that she included this in the visit notes.

Before I describe my supply woes, I should say that it is not all Medicare related. Unfortunately lots of people with diabetes struggle with insurance and suppliers to get their supplies. I have been uniquely lucky that I never had problems before getting to Medicare. I am someone who had fabulous service from the universally-hated Edgepark and never had my insurance question anything. My orders reliably arrived 3-4 days after ordering. I am new to waking up in the middle of the night and worrying about getting the correct supplies (and enough supplies!) at the correct location when I need them.

You don’t need all of the details, but both Dexcom and CCS Medical have emailed and called several times in the last 10 days, each time with a different rep and no realization that the order has been already been discussed and finalized. A Dexcom rep called me yesterday afternoon to see if I was ready to confirm my supplies for this month. I said it had already been done but went through everything with him and confirmed that the order would be shipped to Arizona. An hour later I received an order confirmation shipping to……Minnesota. I called Dexcom and spoke with another rep who had to once again confirm the supplies I needed. She  placed a new order and canceled the order going to Minnesota. I think everything is OK and it only took 4 phone calls and 3 emails. And in 3-1/2 weeks I get to do it again!

CCS Medical has been equally attentive as I have received multiple emails and spoken with three different reps about my order. The first rep took my information, changed the shipping address, and indicated that I would only get 3 boxes of infusion sets. She told me that once my doctor’s clinical notes were received, I would be shipped the additional supplies required. A few days later a young man from CCS called and asked if I was ready to order. I said that I had already ordered but we went through it again. He confirmed that I would get 4 boxes of infusion sets so I assumed that they had received my doctor’s notes. After the Dexcom mess yesterday, I went online and checked my CCS order and saw that 3 boxes of infusion sets and cartridges were being shipped. But at least they were going to Arizona!. I called CCS. This rep confirmed the 3 boxes and said that there was no record of the young man’s call on Monday. She said that he didn’t work for CCS?!? She also said that my endo had not submitted clinical notes.

My endo’s office historically gets an A+ in promptly submitting required medical orders and clinical notes for my diabetes tech and supplies. But I called and faxed the office this morning and asked that the needed info to be sent to CCS again. I will keep following up with CCS because I absolutely require more than 30 infusion sets for the next 90 days.

My Thoughts: Medicare has not been horrible in providing what I need to stay healthy with Type 1 diabetes. Compared to many people with diabetes around the world, I am still a privileged patient. The issue has been that it takes a lot more work to ensure that I get what I need and what I am owed. Diabetes is always in the forefront because I have to keep checking that things are being handled correctly. It is like my life resets every 90 days and I have to start from scratch again. I have to see my endocrinologist every 3 months instead of my normal every 6 months. Now with Dexcom it’s a 30-day cycle due to Medicare rules.  My blood glucose numbers are similar to my pre-Medicare numbers. But diabetes is in my face all of the time. It is a bigger burden and I worry more.

But tomorrow I am going on a 9-mile hike. I have what I need today and tomorrow.

So FU Diabetes and Medicare and Dexcom and CCS.

I’ll deal with you next week.

Ordering a Medicare Dexcom G5:  What’s the Story?

Background:  In January 2017 it was announced that Medicare would begin covering the Dexcom G5 as a “therapeutic CGM” for patients with diabetes who met certain conditions. After months of delays where CMS, Dexcom, and Liberty Medical struggled to establish reliable procedures, we are now at a point where some Medicare beneficiaries are receiving Dexcom G5 bundles with payment by Medicare. I say “some” because Dexcom is totally overwhelmed by the demand estimated to be at least 20,000 patients. 

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If you are expecting this blogpost to be a “How To” manual, you will be sorely disappointed.

I am going to share my experience along with the stories of Medicare beneficiaries who have had an easy time getting their Dexcom Medicare bundle and those who have had or are having a horrible experience. I will provide some information that may be helpful, but I do not think that there is a magic formula for success. As I write this post, I do not know how to categorize my journey. I am 6 weeks into the process. I’ve made progress but I’m mostly mired in a black hole of no information with unanswered voicemails and emails.

Are there characteristics that separate the successful people from the chumps? Not from what I can tell although it is an absolute necessity that your doctor fill out forms correctly. Other than that, I think that placing a Dexcom G5 order under Medicare is a crapshoot. Some are lucky. Others are not.

I don’t have statistics on how many people are having an easy time getting their CGM versus those struggling mightily. People having a bad time are more likely to be online complaining and looking for help and I have seen a lot of negative stories.

Before I go too far I want to emphasize that I am a huge fan of Dexcom. After a few rocky years using Medtronic SofSensors, I switched to the Dexcom 7+ in 2011. The good results with that device were magnified with the release of the G4 in 2012 and my life was changed. The proof of success is I have not needed my husband to get me a glass of juice since 2012. I get lows but my Dexcom warns me in time to treat them myself.

The Good Stories

These are the people we want to be.

Joe:  “I contacted Dexcom about the Medicare G5 and was contacted by a representative who took care of everything and I received my Dex a week later! Sooo Easy!”

Ruta:  “My husband was using the Dexcom G5 CGM before going into Medicare. We directly ordered from Dexcom. The transition was flawless.”

Carol:  “I have to say at this point that I was feeling almost guilty about having my G5 kit and this wonderful new sensor. Other seniors were complaining on the Facebook group about all kinds of issues with ordering their G5.” (It took Carol 2-3 weeks from start to finish.)

Lloyd:  “I don’t remember exactly, but I think it was less than 2 weeks from phone call to arrival!”

Nolan:  “I got the phone call and email on 08/22/17. I filled out the AOB, etc. and sent them back, Dexcom sent data requests to my Endo. I was kept informed via phone calls and e-mails about processing steps. I got the official Dexcom e-mail with “Your Dexcom order has shipped” on 09/12/17. 8/22/17 to 9/12/17 is an excellent time frame in my view.”

The Grouchy Stories

Natalie:  “It took a long time — months — to get all the i’s and t’s dotted and crossed. If the doc misses checking off one box or not using the right word in their clinical report, your paperwork gets routed to GKW (God Knows Where) and it could be weeks before the doc is notified and Medicare can again begin to process it.”

Deb:  “Medicare’s rules make it far more complicated and time-consuming that it needs to be.”

Camille:  “Latest excuse: Medicare requires insurance company to purchase GCM through a Provider. Ins.Co.  cannot purchase it from Dexcom directly. My insurance (MHS Advantage) is particularly inept but my understanding is that they don’t have a contract with a provider so they’ll are working on that. (Bear in mind that they’ve had 11 months to do that.) Meanwhile, in the past year, I’ve had approximately 30 Lows (below 50). I live alone, I live in fear.”

Ginny:  “Medicare also asks for information that isn’t even on the forms. It took months!!”

Kathy:  “Back to square one. no supplies from Dexcom. a week of lame excuses.”

Another Kathy:  “I have been with Dexcom for 10 + years and they were always super good about returning messages. However since Medicare approved their G5 system, they are so far behind in responding that it has come to: if you hear from them at all you are lucky. I, too, am waiting for the email that was promised over a month ago and it never comes.”

Chris:  “Wow, just wow! I was willing to give Dexcom the benefit of the doubt, but not so much anymore. They have continuously dropped the ball. I’m usually fairly patient, but I’m beginning to feel like a crabby old lady.”

Helpful Advice

Carol:  “Not sure I have advice, except to hang in there.”

Patti:  “Stay on top of it. Ask for a contact person so you’re always talking to the same person. Call or email them every few days if it doesn’t seem like the process is moving.”

Sandy:  “Just know that my polite policy with customer service always gets more service than sass…”

Kathy: “So, just in case my information might help someone else, I will post what the tech support person told me today. He said that my chart notes should include: 1) the date of last visit, 2) type 1 or type 2 diabetes, 3) patient tests blood glucose 4 or more times per day, 4) patient uses insulin pump or multiple daily injections, 5) patient’s diabetes requires frequent adjustments of insulin.”

Bob:  “Managed care (Advantage) plans have a great deal of latitude in how they reimburse a claim. They are required by CMS to cover anything that would be covered by original Medicare. But they are not required to reimburse claims in the same manner as original Medicare.”

Other Information

Refills: Once you get in the system, supply refills are mostly a seamless process. IMO the Medicare requirement for monthly shipment of CGM supplies versus the quarterly shipment of pump supplies puts an undue burden on Dexcom and is slowing their ability to supply more Medicare beneficiaries.

My Personal Rant

It is unrealistic to think that Dexcom can immediately process the orders of everyone on Medicare who qualifies for a therapeutic Dexcom G5 system. At the same time Dexcom needs to communicate better with those of us who contact them. After my initial call it took several weeks for the assigned sales specialist to call me. After a first conversation with him and signing the AOB, I received an email: “We have a new update regarding your pending Dexcom order. We have recently requested new or additional documentation from your Physician’s office. We will notify you again once we have the approval.” That was great and I thought I was finally in the information pipeline.

That was 3 weeks ago and since then nothing. My account shows no open orders and my sales rep neither returns phone calls nor answers emails. My endocrinologist submitted my paperwork early in December. Calling my rep last week I was put on hold and hung up after an hour and ten minutes of piano music. I then called customer service who indicated that my endo’s paperwork has been received and they will follow through with my rep. I think that it is a realistic ask of Dexcom that once we initiate a Medicare order that we be able to see the status of the order online or at least receive regular updates.

My history is that of a “privileged” patient with Type 1 diabetes. I have had good insurance. My endocrinologist submits needed documents on time. Every pump and CGM that I have ordered has arrived within a week. Since 2011 I have had consistently good service from Dexcom. Even now everyone I talk to is friendly and helpful.

But now I am on Medicare and the process is slow. The biggest stress is not knowing what is going on. I need COMMUNICATION. I know that my order will eventually be filled and I trust that it will be before my stash of out-of-warranty supplies is exhausted. I alternate between being patient and as Chris said above, being “a crabby old lady.”

I don’t like to be crabby.

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To Order a Medicare Dexcom G5 in an Ideal World

Call Dexcom at 888-736-9967. Select Option #1 to place an order and then Option #1 again for Medicare. Another option is to submit your preliminary information online.

A Medicare representative will take your Medicare and other insurance information and you will be assigned to a Medicare Sales Specialist.

You will be contacted and required to sign a form:  Medicare Assignment Of Benefits, Authorization For Release of Information, and Acknowledgement of Rights and Responsibilities. This is a typical insurance form with the added provision that you promise to only use the Dexcom receiver and not use any smart device with your G5 system.

Your doctor will be sent the medical forms required by Medicare. He/she will complete them correctly and return them quickly.

You will receive a notice that your Dexcom G5 system is ready for shipment and a package will be on your front porch in a couple of days.

Voila!

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Thanks to everyone who shared their experiences.. I couldn’t include every quote, but your stories are important. We are making history—sometimes painfully—as we are the first to receive routine Medicare coverage for our continuous glucose monitors.

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Links

Latest Dexcom Medicare Update

Preliminary Dexcom Online Contact

Info Sheet for Providers

Dexcom Provider FAQ’s

Ed Tepper: Fighting Against Dexcom Medicare Restrictions

Negotiations between Dexcom and CMS addressing the requirement that Medicare beneficiaries use only the Dexcom receiver have reportedly not been going well. Diabetes Patient Advocacy Coalition (DPAC) has organized a campaign to lobby our congressional representatives to have this policy changed through legislative action. To read an overview of the issue and easily contact your members of Congress, download the DPAC app on your phone or tablet or go to the DPAC website.

Ed Tepper of Glen Allen, Virginia is affected by the smart device restriction and has chosen to advocate for change. Coming from a family with a strong history of Type 2 diabetes, Ed was diagnosed with T2D 11 years ago. After developing neuropathy in his feet, Ed worked with his endocrinologist to intensively manage his blood sugars using insulin therapy in conjunction with a CGM. In addition to being an outspoken advocate for people with diabetes, Ed is an active cyclist and triathlete.

Here is Ed in his own words followed by the informative presentation he shared with one of Senator Tim Kaine’s staffers.

Ed Tepper:  This morning I had a 10 minute meeting with one of the staffers for Sen. Tim Kaine (D-VA). The attached file is the presentation I left with him. It was a good meeting. There is a strong history of diabetes in the staffer’s family and he was genuinely interested in the technology. He promised me that he would forward the document to Sen Kaine’s health lead and would email me within a few weeks. I’ll follow up if I don’t here from him by year-end. By the way, Sen. Kaine is on the senate heath committee so he may have some influence there. Keep bugging your senators and representatives about this issue. (11/28/17)

Ed’s Presentation:

Medicare’s restrictive policies regarding Continuous Glucose Monitors put seniors at risk and potentially raise the overall cost of diabetes management.

Meeting with Marc Cheatham, Staffer for Senator Tim Kaine of Virginia. November 28, 2017.

Disclosure:  I am an individual who is living with diabetes and is concerned that Medicare’s restrictive policies regarding the use of CGM’s will adversely impact my ability to stay healthy. I am not employed or otherwise associated with any company that manufactures or distributes CGM’s or related items. I am currently covered by Medicare Part A, Part B and Part D and have a Medicare Supplement policy.

What is a Continuous Glucose Monitor (“CGM”)?

A CGM is an FDA approved device that provides continuous insight into glucose levels throughout the day and night. The device displays information about current glucose levels and the direction and speed of change, providing users additional information to help with their diabetes management. The CGM consists of three components: the sensor that is inserted subcutaneously, the transmitter that sends data from the sensor to a receiver, and the receiver.

To Medicare’s credit, in 2017 they started covering the cost of one model of CGM, the Dexcom G5. However, they have place restrictions on how we must use the CGM that causes undue inconvenience and creates dangerous situations for Medicare recipient users.

I have been using the Dexcom G5 CGM for about 2 years now (before being covered by Medicare starting September 1, 2017). I started using the CGM because I developed neuropathy in my feet and in consultation with my endocrinologist decided that I needed to maintain better control over my blood glucose levels. Using the CGM has helped me understand how insulin, food, & exercise affect my glucose levels and I’ve learned to adjust the three to maintain a more equal levels of blood glucose throughout the day. It also alerts me when my glucose levels are lower or higher than I want or are falling or rising too fast.

Medicare Prohibits the Use of Available FDA Approved Technology

Before being covered by Medicare, I used the FDA approved Dexcom smart phone app and an FDA approved integrated insulin pump to read the CGM data. Medicare has taken those options away from me and now I can only use the receiver that comes from the CGM manufacturer. In addition to the inconvenience of having to carry and care for another piece of equipment, not being allowed to use smart phone and integrated pump technology can create health hazards for Medicare recipients using a CGM.

By denying access to the CGM data generated by the transmitter to any device except the receiver, the ability to remotely monitor or alternately alarm the person with diabetes is prohibited. This becomes a significant safety issue, such as:

–Caregivers cannot use the Dexcom Follow App, which allows up to 5 people to remotely view CGM data. The Dexcom Follow App can alarm the caregiver when blood glucose levels are out of the accepted safe range so that the caregiver can immediately contact the person with diabetes (or emergency personnel) to prevent severe hyper- or hypoglycemia.

–People with diabetes cannot use the Dexcom G5 Mobile App, which shows real-time data on a smartphone or tablet with the ability to create custom volume alarms and vibrations.

–People with diabetes cannot use a smartwatch to access either app. The smartwatch will vibrate on an individual’s wrist when the blood glucose is outside of a safe range. For individuals who are deaf, hard-of-hearing, or asleep, the haptic (small vibrations on the wearer’s wrist) is needed to ensure that they respond to the alarm.

–Integration of CGM data into insulin pumps is prohibited for people on Medicare, which is currently available for the rest of the diabetes community. As the pathway to hybrid- or closed-loop artificial pancreas technology needs CGM data to be effective, CMS is preventing Medicare beneficiaries from using CGM integrated insulin delivery devices to stay safe.

These restrictions have already caused life threatening situations in real life.  

For example:

Kim H. of Pennsylvania reported to me: “My t1[Type 1 diabetic] husband has a traumatic brain injury. He doesn’t remember how to use the receiver and I must let him keep it at times if I am more than 30 feet from him. He pushes buttons and has entered incorrect bg [blood glucose] numbers making the CGM data incorrect! I need to have control using my iPhone for proper data and effectiveness as I am his 24/7 caregiver.”

Jenny S. of California told me: “I have been legally blind from premature birth & although I can still see I am extremely nearsighted. Seeing a smart phone screen is a whole lot easier than the Dexcom receiver. I already have a phone, so why should I be forced to use a $700 receiver that is very hard to see?”

For me being restricted to using the Dexcom receiver is a real issue when I’m outside. I’m an avid cyclist and triathlete and I’m very hypoglycemic unaware. That means that I cannot feel having low blood glucose levels until the levels approach being dangerously low. Pre-Medicare I used the phone app because it sync’d to my sports watch which vibrated when the app triggered low glucose alerts giving me advanced warning that my blood glucose levels were falling and I needed to eat. The Dexcom receiver is difficult to read in bright daylight and its alarms are not as noticeable when exercising. Since being on Medicare, I’ve been surprised by low glucose levels more than once while cycling. That’s a very dangerous situation because I could lose the ability to control the bike and … well the results wouldn’t be pretty.

CGM’s Can Reduce Overall Costs.

The Economic Cost of Diabetes is Staggering and Growing.

According to the Centers for Disease Control & Prevention, National Diabetes Statistics Report, 2017, (“CDCP Report”) the cost of diabetes care in 2012 was $245 Billion. The American Diabetes Association (“ADA”) estimates the current cost at $322 Billion per year.

Emergency room visits in 2014 included 245,000 cases for hypoglycemia (low blood sugar) and 207,000 visits for hyperglycemia (high blood sugar). That’s almost one-half million emergency room visits for diabetes care. (Source: CDCP Report).

The ADA estimates that 30 million Americans are affected by diabetes, that’s 1 in 11 Americans.

Complications people living with diabetes can suffer include: Stroke, Blindness, Kidney Disease, Heart Disease and Loss of Toes, Feet or Legs.

Use of a Continuous Glucose Monitor (“CGM”) can reduce the onset of complications and reduce overall cost of diabetes care.

The Consensus Statement of the American Academy of Clinical Endocrinologists & the American College of Endocrinology (Vol. 22, Issue 8, August 2016) states:

“CGM improves glycemic control, reduces hypoglycemia and may reduce the overall cost of diabetes management. Expanding CGM coverage and utilization is likely to improve the health outcomes of people with diabetes.”

As reported by the National Institute Health, the report “The Impact of Real-Time Continuous Glucose Monitoring in Patients 65 Years and Older” concluded that “restrictive access to … CGM in the Medicare age population may have deleterious health, economic, and QOL [Quality of Life] consequences.”

HERE’S THE ASK:

Medicare must change its restrictive, dangerous policies regarding the use of CGM’s. It must allow the use of available technology approved by the FDA, including smart phones and watches and integrated insulin pumps. It must cover all CGM’s approved by the FDA, not only the Dexcom G5. It must make the changes NOW.

Feel Good Stories about Medicare CGM Coverage

Although those of us on Medicare are thankful that CMS now covers the Dexcom G5, many online discussions are angry and focused on the frustrating regulation that we are not allowed to use our smartphones, smart watches, and pumps as receivers. I wrote a blogpost about this in August and unfortunately there have been no changes to the policy. In fact the most recent news indicates that legislative action might be required to pull Medicare into the 21st century and mobile health technology.

Today I don’t want to write about gloom and doom. I want to focus on good things and how CGM coverage is improving the lives of many Medicare beneficiaries with diabetes. Without fail D-people are finding the Dexcom G5 to be a life-changing device that helps them monitor blood sugar trends along with receiving warnings of highs and lows. Universally CGM users are learning new things about their diabetes and several have experienced huge improvements in average blood glucose levels and A1c’s. Those who are using a Dexcom CGM for the first time mention a reduction in fear and a new ability to feel “almost normal.”

One thing that I have learned in recent months is that I need to stop saying “seniors” in connection to Medicare. Several people I’ve communicated with about this article are on Medicare due to disability and are not yet 65 years old. At the same time, most of us in the Seniors with sensors (CGM’s) Facebook group are 65+ and have lived with diabetes for a long time.

Here are some stories.

Carol W

Carol W and I are email friends—the digital age version of pen pals. She has had Type 1 diabetes for 55 years since age 5 and qualified for Medicare 12 years ago due to diabetes-related vision loss. For many years Carol has lived in the no-win zone where she needs tight control to manage current and avoid future complications while trying to avoid life-threatening lows. Carol lives alone and in February had a severe overnight hypo resulting in a hit to her head, two black eyes, and severe leg seizures. She doesn’t remember the fall. Her only recourse at that point was to begin setting an alarm for 3 AM to ensure that she was okay. Although Carol and her doctor knew that a CGM would greatly benefit her, she was unable to afford the device without coverage by Medicare.

Fast forward to today. Carol received her Dexcom G5 kit in September. Unable to get training at her diabetes clinic for at least two months, she overcame her fear of the insertion needle and started her first sensor with a Dexcom trainer coaching her over the telephone. Some of Carol’s remarks illustrate the life-changing benefits of CGM coverage.

In Carol W’s words:  “Tiny victory yesterday doing all the things I always need to do and made it through the entire day without any lows/highs or ALL THE TESTING with the meter.   Glorious to feel more “normal” – like the days when I didn’t have to test so often. I paid dearly for those days before tight glucose control though. I lost most of my eyesight…. I was able to go play with my neighbor’s one year old yesterday and didn’t have to think about testing. I just checked the receiver. It is truly amazing! I can go outside and garden and just check the receiver. So happy.”

Nolan

I met Nolan through Facebook and we chat periodically through Messenger. Nolan has had Type 1 diabetes for over 50 years. He has used an insulin pump for 25+ years and a CGM for 8+ years. CGM’s have protected Nolan from severe overnight lows and allowed him to sever his relationship with the local EMS and fire department. Because of the importance of a CGM for his safety, Nolan was self-funding his Dexcom for the last two years. This was stressful for the household finances because he is retired with a limited income.

Nolan has experienced the gamut of Medicare CGM experiences. He was one of the few seniors who received G5 supplies from Liberty Medical in the few months that it was the Medicare supplier. Because of no Medicare reimbursement for the starter kit, Nolan was afraid to use the supplies until October when Liberty assured him that he would not be responsible for the cost. A few weeks later Nolan sounded the alarm that “Big Brother is watching” as he got a call from Dexcom indicating that he was on the list of non-compliant seniors using the G5 mobile app. Although he had been using supplies purchased prior to Medicare coverage and thought that was allowed, Nolan learned that we must delete the G5 app from our phone as soon as our Medicare G5 kit is shipped. Violators were warned that if they were flagged again, Dexcom would no longer provide them with Medicare supplies.

In Nolan words:  “Some of the CMS / Medicare bureaucratic issues are just plain ‘non-sensical’ but it certainly is not the end of the world…. Due to my age, length of time I’ve had T1D I just can’t sense the very low BG situations and my CGM has been simply a Godsend for me and my wife in that regard. Simply put I consider the G5 CGM to be a lifesaver for me.”

Carol G

Diagnosed at age 41, Carol G has lived with Type 1 diabetes for 31 years. She uses multiple daily injections and had never used a sensor prior to Medicare CGM coverage. She knew that she was losing her ability to sense low blood sugars but was uncomfortable with paying out of pocket for a Dexcom.

Carol has been blown away by what she has learned since starting to use a Dexcom G5 in late August. She immediately began to see rollercoaster highs and lows that she had no idea were happening between finger pricks. Although disappointed that the Omnipod is not covered by Medicare, she is seriously looking at pumps as the best way to smooth out her blood sugar. Carol had an unhappy learning experience twelve days after starting her CGM. She accidentally dropped her receiver into the dishwasher where it irreversibly died! Dexcom offered a one-time receiver replacement cost of $200 and after nine very anxious days, she was back to using her G5.

In Carol G’s words:  “My first few days with the G5 were a real eye-opener for me.  I couldn’t believe how many spikes and dives my receiver was showing. And how many alerts I received—at all hours of the night. My mind was going a mile a minute. What changes could I make to stop the alerts, and even-out my “hills and valleys”? I had a long phone conversation with my Dr., but realized that I was mostly in charge of this journey…. I met with my PCP recently—the first appointment since getting the G5…. I was thrilled my A1c had dropped two points since my last appointment.”

Lloyd, Kathy, and Sharon

Lloyd has had Type 2 diabetes for 23 years and I shared his story in an October blogpost. Lloyd has been amazed at the accuracy of his new Dexcom G5 and has identified previously unrecognized lows. He finds that the “load” of managing diabetes seem heavier as a senior.

In Lloyd’s words:  “Decades of experience, great tools, and the load seems heavier to me. I really wasn’t frustrated when you interviewed me, BUT I AM NOW!… I used to be able to manage D in my sleep, now I’d settle for being successful period.”

Kathy is on Medicare due to disability and has lived a nightmare trying to get CGM coverage since Dexcom does not have a contract with her Advantage plan. She is grateful to have access to supplies comped by Dexcom and is looking for a new insurance plan for 2018. Kathy is the poster child for learning a lot about “her diabetes” through CGM use.

In Kathy’s words:  “As a benefit, my bs has dropped from avg 166 down to 127 in 30 days, pretty exciting. The numbers are not as significant to me as the trends: how much to correct highs, dose correctly at the start, toss problem foods, add more protein to each meal. Also a walk uphill drops me 70 points on a straight down double arrow, so its good for me to start a little high.”

Sharon lives with diabetes because of the surgical removal of her pancreas 20 years ago. It took 3 months for her to receive a Dexcom due to the distributor asking for BG logs and doctor notes, then signed logs and signed notes, and finally dated signed logs and dated signed notes. After starting to use a G5, Sharon quickly lowered her A1c from 8.3 to 6.8. She personally is not bothered by the inability to use a smartphone but feels strongly that Medicare beneficiaries deserve access to current technology.

In Sharon’s words:  “But there are people who are reliant on family and friends, although going into a nursing home is not a good alternative, cause they’ll just take away our pumps and cgms and put us on a sliding scale. I hope Medicare will get enlightened about Diabetes so we can get to a closed loop solution. Older people can really benefit from this coverage. It is a life-saver.”

Summary

Medicare coverage of continuous glucose monitoring is not perfect. There are wrinkles and delays in obtaining coverage. The inability to use mobile technology is nonsensical. It is frustrating not to be able to use a Tandem X2 pump as a receiver and to not have access to the Dexcom touchscreen receiver. At the same time CGM coverage is life-changing for Medicare beneficiaries with diabetes. Every person who contributed to this post is living with less fear, more safety, and the ability to live a more normal life. Many people are seeing immediate improvements in their diabetes numbers along with a new understanding of the journey that is “their diabetes”.

Yes, there is work to be done. But we are on the right path.