Tandem Occlusion Alarms: An Engineering Experiment

I began using the Tandem t:slim X2 insulin pump in December 2016. Since then I don’t think that I have written a blogpost about the pump without mentioning false occlusion alarms. In my first review of the pump, I wrote:

“I have used the Tandem t:slim X2 for almost 10 weeks. In that time I have had 9 occlusion alarms resulting in an immediate stoppage of insulin delivery. The first couple of times I panicked at the shrieking pump alarm fearing that something was actually wrong. Nope. Not once has there been a problem that did not disappear by working my way through the menu screens and pressing “Resume Insulin.” The vast majority of these alarms have been while delivering meal boluses, but not all.”

Periodically I have thought that I have solved the problem and interestingly I have had completely different experiences with my three X2 pumps. Pump #1 got weekly occlusion alarms during the first four months of use. I eliminated the alarms by either using a case or wearing the pump on my waistband with a Nite Ize Clip. But I hated those solutions and eventually went back to carrying my case-less and clip-less pump in my pocket. For no discernible reason the occlusion problem didn’t reoccur and I only had two or three occlusion alarms in the next 11 months. In February 2018 Pump #1 was replaced due to a battery failure. I only used Pump #2 for a month due to a defective T-button. But in that time I did not have a single occlusion alarm.   

Then I got Pump #3 and immediately returned to weekly occlusion alarms and sometimes two or three a week. I figured these alarms were the price of refusing to use a case or clip and I just lived with them. Then a couple of 2-alarm days convinced me that enough is enough. I dug the case out of my supply box. The pump became heavy and large with the case and would no longer would easily fit into the waistband pockets of my workout pants and pajamas. Total PITA. But I didn’t get occlusion alarms. Hating the case, I went back to the Nite Ize clip with the pump on my waistband. And ugh, I started getting occlusion alarms again.

So now my question became: Why does the case eliminate false occlusion alarms? A Tandem tech rep once told me that the case eliminated temperature fluctuations that occurred when I took the pump out of my pocket to enter a bolus. Seemed kind of far-fetched and if that was the case, why doesn’t everyone who carries the pump in their pocket get occlusion alarms? And when I was wearing the pump on my waistband with a clip, why did I get occlusion alarms because there was no temperature change?

My current hope is that the case works because the cut-out over the pump vent holes stops the vents from being blocked during insulin delivery. How could I replicate that without using a case? On Tuesday I went to the nearby Ace Hardware and wandered down the aisle with screws, washers, nuts, springs, etc. I bought a couple of gizmos including black plastic rings with a hole large enough to protect the 6 vent holes on the back of the pump. (It should be mentioned here that there are constant discussions on Facebook about the purpose of these tiny holes and some people swear that they are only for sound. A Tandem tech rep recently told me that the holes are dual-purpose and function both as vents and speaker holes. So that’s what I am choosing to believe.) I also bought 2-sided adhesive strips. 

Working in my kitchen laboratory, I used a hole puncher to cut a perfect-sized hole in the adhesive and then used scissors for the outer circle. Carefully I attached the ring to the pump. Voila! (It wasn’t quite that simple so if my experiment is a success, I will share more detailed instructions.)

It will take a week or two to see if this MacGyver fix works. I started a new cartridge yesterday and I rarely get occlusion alarms until the cartridge measure 80-120 units. If I make it a week without an occlusion alarm, I will have to see what happens with my next cartridge. And then another. 

Diabetes. A science experiment that sometimes requires engineering solutions.

7/26 Late Morning: Unfortunately my science experiment is already a FAILURE with an occlusion alarm during basal delivery this morning. I totally jinxed myself by publishing this blogpost. In defeat I have already taken off the black washer. I spent 45 minutes on the phone with Tandem and the pump passed all of the tests. Of course it would because the pump works fine most of the time. I even changed my cartridges every 3 days for the last week and a half and got 4 alarms within the last 8 days. The issue has been sent to the local rep and I guess I can try to work with him to get a replacement pump. But I am not convinced that a replacement pump will matter. Why do I get these alarms and so many people don’t??? 😩😩😩

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Other Comments: I truly believe that false occlusion alarms are related to a design flaw in Tandem pumps. I have so many questions. What percentage of Tandem pumpers experience these alarms? It is hard to tell because social media only attracts those having the problem. Are there common characteristics for those of us getting the alarms such as low TDD of insulin and small boluses? Or is it that certain pumps have overly sensitive occlusion sensors? I could go on and on with questions.

At the same time I want Tandem to succeed. I like almost everything about my t:slim X2 and I appreciate the innovation and good customer service that comes from this company.  There are few pump choices these days and my being on Medicare reduces that number even farther. My primary D-tech loyalty is to Dexcom as my CGM and I am unlikely to return to Medtronic although I was previously happy with my Medtronic pumps. At this time Omnipods are not a good financial option for many of us on Medicare and I have always been fine with a tubed pump. I am intrigued by Bigfoot Biomedical using the Freestyle Libre and keep my fingers crossed that it will be a future option for me. 

I do not follow all of the Tandem rules. Because of my low TDD of insulin, I refuse to change my cartridge every 3 days and throw away more insulin than I use. I change it about once a week while replacing my infusion sets every two days. This was how I operated on Medtronic and Animas and it works for me. With my first X2 I tried changing the cartridge every 3 days a few times and still got occlusion alarms.

I have always had superb customer service from Tandem. Although I am continually frustrated by false occlusion alarms, I do not regret my choice of the Tandem t:slim X2. If I had to choose a new pump today, I would probably choose the X2 again.

But false occlusion alarms are a problem.

*****   Relevant Links   *****

A Review of the Tandem t:slim X2

A 5-month Review of the Tandem t:slim X2

Tandem t:slim X2 and Dexcom G5: It Takes Flexibility

Joining the YMCA: Celebrating Seniors 

A while back I wrote about how arthritis was messing with my life. I complained about sore feet and sore hands. If I had written the post at 2:00AM I might have described sore feet, sore hands, sore back, sore hips, and a sore soul. Despite all of that, I feel okay most of the time. But I am not stupid and know that I need to make lifestyle changes to help reduce joint pain. 

As someone who has lived with Type 1 diabetes for 41 years, I have gotten used to the idea that more than doctors and pills, I am the one in charge of my health. I make the conscious decision to monitor my blood sugar, eat reasonably well, and optimize my insulin regimen. But as I look at the last 4 decades, I strongly believe that I am healthy today because of exercise: tennis, golf, hiking, dog walking, step classes. Unfortunately I am finding that arthritis demands that I no longer hike 12 miles in the Arizona mountains or walk 6 miles on my hilly Minnesota golf course. Weight lifting benefits my biceps but my hands suffer. Planks and push-ups strengthen my core, but my elbows and shoulders rebel. Almost everything bothers my feet.

One of the benefits of my Medicare supplement plan is Silver & Fit where I can join a health club for free. In 2017 I selected the nearby Lifetime Fitness and enjoyed cardio, strength, and cycling classes. Unfortunately this spring I began to realize that despite trying to modify exercises to my capabilities, these classes were too taxing on my joints.

Thanks to a local diabetes friend, I was persuaded to check out the Southdale YMCA. She has belonged there for years and calls it her “home away from home.” She mailed me a copy of the long list of fitness and pool classes, some designed for seniors and others targeted for exercisers of various ages and fitness levels. After being faced with the possibility of both foot and hand surgery, I determined that it was time to check out the Y.

I stopped by one rainy morning in May and was immediately welcomed and taken on a tour. With little hesitation I joined on the spot. Fate determined that my free orientation session was with a trainer who happens to have a sister with Type 1 diabetes! We talked about exercise and low blood sugar and she showed me the stash of glucose tabs in the file cabinet at the fitness desk.

The senior exercise classes are organized under an umbrella of ForeverWell. There are three activity tiers: Just Getting Started, Already Active, and Exercising Regularly. Aging, illness, and surgery can shift you from one category to another and the boundaries are fluid. I am a good fit for “Exercising Regularly” classes and faithfully attend ForeverWell Yoga and occasionally ForeverWell Strength. I also participate in several cycling classes each week.

ForeverWell Yoga:  Imagine a studio filled with 75 people over the age of “don’t ask-don’t tell” and many well into their 70’s and maybe 80’s. You need to arrive early to get a spot although no one is ever turned away. The instructor uses kindergarten teacher skills to quiet the noisy group to get started at 8:15 on Tuesdays and Thursdays and reminds us to take care of injuries and sore joints. A long warm-up is followed by instruction in poses that increase strength, flexibility, balance, and mental health. There is something really inspiring about seeing a roomful of seniors in child’s pose or warrior two. I plan my life around never missing this class and I always leave feeling better than when I arrived.

ForeverWell Strength:  This class is mostly attended by women with an occasional guy hanging out in the back row. The formula is a step warm-up, strength work with weights and an elastic band, various exercises with a small ball, and then a cool down. None of it is hugely difficult, but the always-moving and always-smiling instructor keeps us on the go and I get a good workout. When I attend this class, it means that Abby the Black Lab misses her morning walk with friends at the dog park. My health versus the dog’s happiness. It’s a tough choice except on rainy days.

Studio Cycle:  Studio cycling gives me an intense cardio workout without the pounding of running, hiking, and step classes. The bikes are a tech wonder where I enter data about myself and get a personal fitness number to measure whether I am in the target zone of white (take a nap), blue, green, yellow, or red (Ferrari). Each of the many different instructors has pushed me to test my limits while pedaling and sweating to great music playlists.

Other Classes:  The Y class schedule is amazing with 12 to 30+ classes offered daily and I am in no danger of running out of things to try. Although I lack motivation for individual workouts, many people lift weights, use fitness machines, swim laps and do all sorts of things apart from organized classes.

Of course the YMCA is not only for seniors. I enjoy the age, race, and fitness diversity of the membership and have been happy to see kids everywhere this summer. I see lots of uber-fit young adults and fondly remember those days.

But the magic of the Southdale Y for me is that it embraces seniors. It is a social club with coffee and newspapers in the lobby. The prequel to yoga class is a noisy affair where new and old friends chat and laugh. The fitness area revolves around one longtime Y member who spends his mornings on a rowing machine and attracts a steady stream of chitchatting visitors. The friendliness is contagious and on my second visit to a noontime water aerobics class, I was invited to join the group that goes out to lunch once a month. The ForeverWell Newsletter mentions things like bingo, hearing screenings, and balance classes—things that you expect to see at a senior center. But it also offers an Al and Alma’s Lake Minnetonka Cruise, a trip to Winona, and an invitation to help landscape the exterior of the building.

This talk of senior fitness and community is a bit schmalzy but I know that my mother’s senior years were lonely. She would have been happier and healthier with daily interactions with other people. I remember when my in-laws moved into an assisted living facility and my father-in-law felt alienated because the residents looked so old. Of course they were no older than he was, but he didn’t see that he was “them.” What I love about the YMCA is that I look at “them” and am comfortable being “them.” I am in the early years of being a senior, but I see respect for every person of every age and every level of health and fitness. I don’t see condescension towards older people or actually towards any people. Everyone is welcomed and appreciated at the Southdale YMCA and I am glad to be part of the Y community.

*******   Links   *******

https://testguessandgo.com/2018/05/14/diabetes-arthritis-and-the-dog/

https://www.silverandfit.com

https://www.ymcamn.org/locations/southdale_ymca

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.”

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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.

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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.

Living on Planet Dexcom

Starting with the Dexcom G4  released in 2012, I have bolused insulin based on my CGM. Although the G4 was not FDA-approved for insulin dosing, I was comfortable doing so “sometimes, in certain circumstances, and within certain guidelines.” That quote comes from a 2013 blogpost titled “To Dose or Not to Dose” and explains that I mostly trusted the Dex but averaged 8 fingersticks per day.

Fast forward 5 years. I regularly dose insulin off my Dexcom CGM and only average 4 meter tests per day. That average reflects sensor day 1 where I might test 8 times and other days where I may only test 2-3 times. The Dexcom G5 is somewhat more accurate than the algorithm of the original G4, but the difference is only a couple MARD points and not a huge statistical variation.

So what has changed that I have eliminated at least 4 meter tests per day?

What has changed is Me. 

I have 10 years of CGM usage under my belt. The early years of Medtronic SofSensors were rocky with a huge improvement when I moved to the Dexcom 7+. The 7+ was reliable for trends but I don’t remember trusting it enough to guide my bolusing decisions. With the mostly reliable G4 numbers, I frankly just became lazy about using my BG meter. I had good insurance with no need to ration test strips and no issue poking holes in my fingers. I was just lazy and welcomed a small reprieve from a few daily diabetes tasks. Before I knew it, the laziness turned into a habit. It was initially a guilty habit but over time CGM reliance became entrenched in my diabetes decision-making. 

And guess what. It didn’t kill me! And now it is FDA-approved.

Lately I have been frustrated with inconsistencies between my meter and my Dexcom numbers. It drives me crazy. I have always had issues with Dex sensors reading low. As I increasingly target normal-ish BG numbers, the Dex low tendency often results in alarms for lows that aren’t lows. Dexcom screams 65; meter says 85. Maybe I calibrate and Dex goes up to 75 before dropping back down to the 60’s. I know that numbers showing up after calibrations are determined by “The Algorithm” but sometimes if I enter 85, I just want the receiver to say 85. 

My perfecto personality overreacts to diabetes numbers. When my meter and CGM feud, I calibrate too often. I over-manage blood sugars. I get lows and highs as I target perfection and my mental health meter explodes. 

What do I do?

Do I start testing 8-12 times a day like in the old days? Do I donate the CGM to Goodwill?

Heck No!

I just move to Planet Dexcom and go with the flow of CGM numbers. I test less.

Although Dr. Bernstein might disagree, I believe that when you are 66 years old with 42 years of diabetes under your belt, 20 or 30 points here and there probably doesn’t matter a lot. Especially if I have a flatter CGM tracing because of fewer peaks and valleys. By not obsessively using my meter, I might miss some large Dexcom/meter discrepancies. At the same time, it hasn’t killed me yet. I am mostly hypo unaware. But because I have had so few catastrophic lows since the introduction of Dexcom G4, I have some confidence that if I pay attention to my body and my diabetes devices, I am somewhat protected from incapacitating lows.

Remember. It hasn’t killed me yet.

Note: Because I am on Medicare, I am using the Dexcom G5 and it will be a while before I have access to the G6. I find it interesting that many of the early-users of the G6 which requires no calibration are celebrating its accuracy. Simultaneously they are claiming that they are not using their BG meter. So actually they don’t know how accurate it is. They are living on Planet Dexcom and finding that it is a relatively safe and happy place to be.

There will come a day when blood glucose meters go away and everyone with diabetes uses some type of continuous glucose meter. We’ll live on

Planet Dexcom or

Planet Libre or

Planet Medtronic or

Planet Eversense or

Some other CGM planet in the diabetes universe.

Relatively safe and happy.

Diabetes, Arthritis, and the Dog

I left Arizona in mid-April and have spent the last month in Minnesota watching snow melt followed by grass turning green and trees getting leaves. For better or worse, medical stuff has taken a good chunk of my time in recent weeks. 

The Dog:  Abby the Black Lab is 12 years old which is old for a big dog. For the last 6 months her breathing has been loud with occasional gagging and coughing. It turns out that she has chronic bronchitis which is kind of like COPD for dogs. Her treatment? A steroid inhaler. The vet told me that I could check out prices locally but recommended that I buy the inhalers from Canada. Sounds familiar for those of us on insulin…. One inhaler at Costco. $369. One inhaler from Canada. $69. My understanding is that while it is illegal to import prescription drugs from Canada, the ban is not being enforced. I am not losing sleep over the threat that I could go to jail for importing medication for my dog. Dr. Google mentions that canine patients can be “uncooperative” when dealing with inhalers and the Aerodawg chamber. Well, duh.

Pump Supplies:  More than once I have written about my need to change infusion sets every two days. I had always received sufficient supplies with no problems until 2018. I recently criticized CCS Medical for being less than helpful in resolving the problem and switched to another supplier. Meanwhile reflecting the power of Social Media I received a call from a customer service supervisor at CCS and I suspect that she would have helped me to navigate the process. But I was several weeks into working with Solara Medica and it didn’t make sense to go back to CCS. I did eventually get my 45 infusion sets from Solara but it wouldn’t have happened without my bulldog sales rep Stephanie. My endo’s assistant had to submit, resubmit, and re-resubmit medical necessity forms and office notes. The normal 30-day BG log wasn’t enough and I had to provide a 60-day log. Ironically none of the ever-morphing requirements for 2-day site changes had anything to do with adhesive allergies and site infections. I am now good for 3 months and dread starting over again in July.

Fiasp:  At my April endo appointment, I was given a Fiasp sample. There were no vials available and I took home a yellow and blue 300ml pen with several pen needles. I didn’t do systematic testing to see if Fiasp injections brought down highs better than Novolog, but I assume it did. I filled a pump cartridge and started using it in my Tandem X2 pump. Immediately I seemed to have an easier time with my morning BG’s.  Unfortunately as others have reported Fiasp seemed to run out of steam on Day 3. By Day 4 my numbers were terrible and I switched back to Novolog.

Was this is a fair trial of Fiasp? Absolutely not and it doesn’t matter. Fiasp is not covered by Basic Medicare and I have no interest in paying out of pocket for it. I had to laugh because several times on my blog, I have mentioned that my sister is very adverse to changes in her diabetes care. After a few days of Fiasp I determined that I am entirely too lazy to figure out pump settings to be successful with a new insulin. Meanwhile my sister has switched her mealtime insulin from Regular to Humalog and will be starting Tresiba soon. She is actually considering ordering the Freestyle Libre! So who is adverse to change???

Arthritis:  A year ago I wrote that arthritis is the “health problem that most threatens my Pollyanna “Life is great!” philosophy.” My systemic arthritis is well-controlled with NSAIDs, but degenerative osteoarthritis in my hands and feet is relentless. Last week my foot doctor indicated that surgery is the only option for my left foot. I am not totally on board with cutting into my foot. It fixes one joint but I still have tendon and heel problems. And then I have my right foot. Psychologically I struggle with having this surgery because it opens the door to dealing with my other bad joints. There is something comforting with staying with the pain I know and avoiding the pain and unknown results of surgery. 

I will schedule surgery for mid-August with the option to cancel it. Two weeks on the couch with drugs will be followed by two months in a boot with a knee scooter. In the short run I have abandoned the close-by health club where I enjoy the fitness classes but know that they are not good for me. I have joined the YMCA which has an extensive schedule of fitness and water aerobics classes directed at various levels of senior fitness. Argh! I can’t even stand to write this but I know that I will feel better. 

Frozen Shoulder:  I think that I am in the early stages of frozen shoulder on the right side. I am unfortunately an expert on this condition and on the 4-year plan. I had my first FS in 2001 on the left side. Four years later my right shoulder was affected and four years later the left again. Now it’s back to the right. Only the first one was horrible. The rest have been annoying and long-lasting but not hugely debilitating. Don’t tell me to stretch the shoulder in the shower. As I wrote in 2013, “if you can get rid of your “frozen shoulder” by doing a week’s worth of exercises in the shower, you don’t have adhesive capsulitis.” My experience with frozen shoulder indicates that it is an inflammatory disease-driven condition that is more related to duration of diabetes than A1c levels. Whatever. If you want to learn more about frozen shoulder, check out my “Argh! Frozen Shoulder” blogpost.

Summary:  That’s it for today. The dog is old. I’m getting older and my feet hurt. So do my hands. I’m a chicken when it comes to surgery but hate the idea of quitting the activities that I love. I had diabetes yesterday and still will tomorrow. But the sky is blue and the grass is green. Life is good.

Happy spring to everyone! 🌷🌷🌷

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.

Living in the Orange:  When Diabetes is Tough

Diabetes is hard these days. I am usually a good problem solver and lately my usual fixes aren’t working. I am seeing patterns that differ from my normal ones. I am not sick. I am not on new medications. I am long past menopause and don’t think I’m dealing with raging or sagging hormones. Other things are sagging but that is a different story for a different day and a different audience.

I’m seeing large spikes after appropriately-bolused moderate-carb meals. My post-breakfast walks are not ameliorating morning blood glucose rises. I am giving ineffectual correction boluses all day long. My numbers climb on 6- to 10-mile hikes. The new pump profile “More” and its bucketfuls of insulin has not made a noticeable improvement.

I haven’t gained weight in recent months, but I do weigh almost 10 pounds more than 4 years ago. My doctors like that but my clothes don’t. My daily average steps are less than in previous years but arthritis and a recent bout with plantar fasciitis have dictated that I pay attention to sore joints. Abby the Black Lab will be 12 years old on Thursday and our walks are shorter than last year. And the year before. Some days we walk and I drop her off at home so I can go farther.

An old dog and an old lady.

But definitely some physical changes that might warrant more insulin.

I am frustrated with my diabetes technology.

Despite being a huge fan of my Dexcom G5, I go crazy with alarms claiming my BG is 48 and it is 98. With alarms that scream 189 when my meter says 140. With alerts that declare 240 and it is…240. And alarms that alert for BG’s of 52 and although I feel fine, my meter says 52. I accept, but hate the Medicare requirement that I use only my Dexcom receiver and not my iPhone, Apple Watch, and Tandem pump.

My pump was replaced a month ago due to a failing battery. Yes, I am still not on board with a rechargeable pump and yearn for the security of carrying extra pump batteries in my meter case. The new pump has an unresponsive T-button which means that every time I turn on or off my pump screen, I have to push the button once. Twice. Sometimes four or five times. The Quick Bolus feature rarely works because I get error messages of too many button presses or it just times out when the final push to deliver insulin doesn’t work. There is a possibility that I will be getting a replacement pump but unfortunately Tandem has changed the T-button to a “two-pronged design” and a new pump might not solve the problem. Facebook tells me that I am not alone in the woes of a stubborn, mushy, unresponsive T-button. I don’t know why Tandem changed the button design but I do know that whatever problem they solved created another. The T-button is the gateway to every interaction with my pump. When the T-button is problematic, my pump experience is problematic. 4 weeks of practice with the new button design has only marginally improved my success rate.

Five years ago when I was cruising in the “Doing Okay” zone of diabetes, I wrote a blogpost titled “It’s Not as Hard.” I concluded that “I think the reason I’m feeling good these days is that my hard work seems to be having good results.” By substituting a few words, I can describe my mindset these days. “I think the reason I’m feeling bad these days is that my hard work seems to be having bad results.”

As anyone with diabetes knows, it is hard to keep making good decisions when the numbers don’t reward the work. If a 12-carb cup of applesauce spikes me to 250, I might as well have Nutter Butters or Oreos. I have definitely fallen into this pattern and thus am not an innocent victim in my diabetes distress.

I know that I need a total reset in my diabetes life and things that have worked in the past include severe Dr. Bernstein-like carb restriction, the Whole 30 diet, and the untethered regimen. To be determined….

Part 2 of the Story

I wrote the earlier section of this blogpost on Friday morning and decided that since I do not entirely trust my pump and insulin absorption that I would choose the untethered regimen option. This plan entails taking a certain percentage of basal insulin by injection in combination with pump therapy. As of Friday evening I am taking 3 units of Lantus at both 7:00pm and 7:00am with the remaining 50% of basal coming from my pump. My blogpost “Building a Foundation with Lantus” gives a good description of the untethered regimen and provides links to other blogposts and articles on the subject.

How is it working? Amazingly well and on Saturday morning, I immediately began seeing some familiar flat lines between meals. The unexpected and unjustified spikes are gone. No doubt I am being careful about food choices but that didn’t make a significant difference in recent weeks. Once again I marvel at how much easier my diabetes is when I combine injections and pump therapy. Too bad it is so much more work.

I think a stable base from two daily Lantus injections protects me from absorption issues with my pump. I am taking slightly more basal than previously and maybe that’s the only difference. I am at a stage in life that I might consider going back to MDI (Tresiba-ready?) although I’m not psyched to abandon the convenience of bolusing with a pump. Ironically Basic Medicare with a Supplement plan makes pumping a much cheaper alternative than injections.

For the moment the arrow on my dia-bete-meter has moved from “Kind of Crappy” orange to a familiar place between “Okay-ish” yellow and “As Good As It Gets” light green. This zone isn’t perfection but it is an area where hard work and good decisions usually reward me with reasonable BG numbers. That’s all I can ask for and I am doing better today than a week ago and a month ago.

One small change in insulin delivery. One big improvement in BG numbers and emotional health.

When Diabetes Screams for Attention

Tonight I am in Phoenix.

No, that was last week.

Today I am in Minneapolis.

No, that was two months ago.

Tonight I am in Charleston. Well, kinda that but a few miles northeast. I am in South Carolina-my birth state.

I am here to care for my sister who just had back surgery. She is older than I am in real person years. She is younger than I am in Type 1 diabetes years

But she knows the drill.

Test your blood sugar.

Talk tough.

Take your insulin.

Eat lunch.

Say you’re fine.

Telephone your sister in the next room because you are….

Sweating.

Shaking.

Terrified.

Your BG is 36.

That wouldn’t be so bad except earlier today it was 45.

And yesterday it was 48.

And the day before 38.

And mixed in with those numbers were some 380’s.

The symptoms are bad and glucose tabs aren’t helping. Prune juice is good for old-lady bowels but not a quick solution for blood sugar levels.

Orange juice might work, but too many liquids can be counter-productive with lows. Says she who once projectile-vomited a second glass of juice over a friend.

So I grab my brother’s stash of honey and feed it to my sister teaspoon by teaspoon.

40 minutes later her BG recovers to an acceptable number in the 90’s. What would have happened if I hadn’t been there? Only D-parents and T1’s in “The Club” know the honey trick.

The visiting nurse came the next day and asked if we had called the doctor after the bad low. Huh? Why would we call the doctor?

Meanwhile the younger sister who uses a pump and a CGM goes crazy because the older sister won’t consider a pump. Won’t consider a CGM. Won’t even switch to Humalog from Regular.

Her way has worked for her. At least she thinks so. Quitting smoking and major surgery have exposed flaws in her care that need facing. At least I think so.

Meanwhile as I was slogging through my sister’s health stuff, my Type 1 screamed out for attention.

Look at me! Look at me!

My pump’s rechargeable battery failed with an overnight drop to 15% charge one night and 5% the next. Out of town and a holiday weekend to boot. Kudos to Tandem as a replacement pump was shipped from California and arrived in South Carolina within 24 hours.

My sister is headstrong and adverse to change. But she does fine in her world and will continue to do fine in her world. Ultimately she gets to make her own choices.

They are not my choices. But I have my diabetes and she has hers.

I am headstrong and have been known to be pushy and a PITA.

I was helpful for nine days.

Both my sister and I were glad to hug good-bye on Thursday and not try for day number ten….

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The Story: Two weeks ago my sister had major lower back surgery. Despite the number of times that she told the neurosurgeon and his medical team that she has Type 1 diabetes, the hospital orders specified a Type 2 regimen and she was not given long-acting insulin. Holy sh*t! This is a teaching hospital in 2018. I had offered to come for the surgery but my brother wanted me there for the recovery and promised to keep her alive in the hospital…. Thanks to a nurse advocate, he did.

My sister and I have always handled our diabetes differently and we’re both relatively healthy after my 41 years and her 37 years. My 2013 interview with her continues to be one of my most-read blogposts.

I accept that my sister will not use a pump or Dexcom CGM, both of which would be covered by Medicare at no out-of-pocket cost. The one thing I will continue to argue for is a Freestyle Libre. It is physically and emotionally less invasive than other CGM systems and possibly something she could live with. Although I appreciate the safety from middle-of the night Dexcom alarms, my sister doesn’t want that. I think that she would quickly appreciate the ability with the Libre to frequently scan her arm to see BG readings, 8-hour trends, and directional arrows. Had the Libre not required a physician prescription I would have purchased it, stuck in a sensor, and made her use it.

So Sister, I’m not giving up. Check it out!

A Libre is covered by Medicare under part D prescription benefits.

Freestyle Libre.

Amen.

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