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.

Not FDA Approved

Laddie_Head SquareAfter my husband and I finished putting up the Christmas tree this morning, I discovered that my Dexcom G4 Share receiver was missing. We searched tree branches, boxes of decorations, upstairs, and downstairs and couldn’t find it. I knew that the receiver was somewhere in the house because I was getting numbers on my phone through the Share app.

My BG at this point was in the 140’s several hours after breakfast and normally I would take a correction bolus. Instead I ate a couple of glucose tabs and hoped that I would hear vibrating alerts as my BG passed over 160. No luck. My BG went up but we heard nothing. (All of my alerts are set to Vibrate.)

Once my BG hit the stratosphere, I gave up on high alerts. My only recourse was to drop below 55 and get the mandatory audio alert. I injected a mega-dose of insulin and got ready for the gluco-coaster ride. Don’t try this at home, Kids.

It took a while but eventually I was below 100 with double down arrows. About this time my husband asked if an ambulance ride would cost more than replacing the receiver. I explained that I had reached my deductible for the year so emergency care would be free…. Then I assured him that I would be okay and ate a couple of Smarties to control the BG drop.

We didn’t hear vibrations as the BG dropped below 70. So it was 55 or Bust!

Finally we heard muffled audio beeps, but we couldn’t figure out where they were coming from. Certainly not near the Christmas tree or the couch or the many boxes where I expected to find it. I’m not sure how many minutes separate each series of alerts—maybe about ten. Finally on the 3rd or 4th round of beeps, we found the receiver upstairs in the pocket of my pajamas.

This should be the end of the story, but it is not. The reason that I had not checked upstairs is that I had been on a 40-minute walk long after getting dressed. I had seen reasonable BG numbers on my Apple Watch while walking and given no thought to the idea that the receiver was not with me.

It turns out that obviously my receiver was upstairs all morning and the number I was seeing on my Apple Watch was from the Watch Sugar app. When the Dex Share app on the phone and watch loses contact with the Dexcom receiver, it displays blank dashes instead of numbers. Had I been using this app during the walk, I would have noticed a problem. But I was checking my watch face with the Watch Sugar complication. Well, I learned today that the Watch Sugar app will keep displaying the last number received whether it is 30 seconds ago or 5 hours ago.

Once my BG returned to normal according to my meter, I turned off the Dex receiver for 20 minutes. As expected, the number 46 for Watch Sugar never changed while the Dexcom Share app (not shown on watch face) quickly showed no data. Hypothesis confirmed.watch-face

Everything is now fine in Diabetes Land.

I found my Dexcom receiver.

My post-Thanksgiving low carb diet got blown to bits with glucose tabs, Smarties, an apple, a pear, yogurt, and an English muffin.

I learned that it is better to keep the Dexcom app open on my watch rather than rely on Watch Sugar.

My BG’s are stable and back in range. Dexcom 91. Freestyle 93.

Just another day with Type 1 diabetes.

Postscript:  Sometimes I think I have little control over my diabetes. Today I felt totally in charge of what I wanted my blood glucose to do. I never felt that I was doing anything dangerous. I was not alone and I had lots of orange juice and glucose tabs available. That being said— please remember that nothing you read on this blog should be considered medical advice or even good advice.

The Last D-Tech

Laddie_Head SquareThe last CGM.

The last pump.

The last D-tech before going on Medicare.

In early September I will purchase my last CGM system before going on Medicare in the spring. That will be followed by my final pump selection in early December. Rather than view these decisions with my usual excitement, I sit here with a stomachache of dread, frustration, and uncertainty. I tend to be naive and think that there is a “correct” decision when it comes to things like this, but there is enough going on in both the reimbursement and technology landscapes that I am faced with a lot of doubt.

First the CGM. It will be Dexcom for sure, but I am torn between staying with the G5 or going back to G4 platform. Although Dexcom is primarily marketing the G5, I use an Animas Vibe and have the option of staying with the G4 for the foreseeable future. (Please ignore the fact that I rarely use my pump as the CGM receiver. Click here for an explanation.) Currently Medicare does not cover continuous glucose monitoring for seniors with Type 1 diabetes. Many individuals and organizations are working hard for a policy change, but I am discouraged and convinced that I will have to self-fund my CGM starting at age 65.

Dexcom has made and continues to make decisions that make self-funding a CGM increasingly expensive. Looking at transmitters, G4 transmitters had a 6-month warranty but many of us experienced a much longer life than that. My most recent G4 transmitter lasted a year. G5 transmitters place a higher demand on batteries, but also have a software-mandated drop-dead date of about 100 days. Thus for someone who self-pays, transmitter costs have almost doubled from G4 to G5.

As yet no changes have been made that impact the cost of sensors. Unfortunately as reported at Diabetes Mine last week, the Dexcom CEO brought up the idea of Sensor Auto Shut-off during the latest quarterly earnings call. This was presented as a safety consideration and my initial snarky response was tweeted by Diabetes Hands Foundation: “So we can kill ourselves on Day 1 of a sensor when Dex is at its most inaccurate, but not on Day 11″ bit.ly/2b4fmjx @MNAZLaddie.” In Dexcom’s defense, no one can ignore the financial repercussions to Dexcom of customers using sensors for 2-3 times as long as warrantied.spiral with words_2016

I currently use most of my sensors for about 2-1/2 weeks. I have full insurance coverage for sensors, but experience better accuracy the second week than the first. I often finally change out a sensor for scheduling reasons or because it falls off despite SkinTac and additional tape. Very rarely is it because of performance problems. I doubt that there will be sensor auto shut-off until the G6, but it is another change that will greatly impact those who self-pay.

I think it makes sense for me to return to G4 for now, especially since I can use the Share feature to see data on my phone. Going back to carrying a receiver won’t bother me much, especially because I like the alarm profiles of the receiver much better than my phone. I am also tired of keeping my phone with me all of the time.

The CGM decision is tangled in my thoughts about a new pump. I am not in love with the Vibe and it doesn’t make sense to buy another one. Tandem is close to retiring the t:slim G4 and I know that if I go with Tandem, I would prefer to buy the t:slim X2 to be released in the fall. The last time I selected a pump for CGM reasons was the Ping in 2012 and it wasn’t a good choice for me. I’ll be writing more about pump musings in the fall, but as with previous pump decisions, it will be complicated by insurance considerations and the uncertain release date of new technology. Medicare rules will also come into play.

One undiscussed topic in today’s post is: If the cost of using a Dexcom continues to spiral upwards and there is no Medicare coverage, at what point will I choose to live without a CGM? Going back to the second paragraph of this blogpost, that is the sort of decision that fills me with “dread, frustration, and uncertainty.”

And fear.


I sometimes conclude technology posts with the admission that my concerns are a #firstworldproblem. I am a privileged patient when it comes to diabetes and I am grateful.

In My Diabetes World

Laddie_Head SquareI have some “meatier” blogposts that I need to finish, but I’ve been busy living life and not so busy writing about diabetes. From a “Life” point-of-view, that is good. From a “Blogger” point-of-view, that’s a definite faceplant.

Just so February doesn’t fly by with zero blog entries, here are some diabetes things going on in my life.

Number One!  I lit up Facebook and made many D-friends jealous with the news that I had lunch with Kate Cornell last Thursday in Prescott, Arizona. The skies were blue, the temps were warm, and the company was great.


As I summarized our visit: “It was a wonderful day, Kate! Your friendship is one of the good things that has come from diabetes in my life…”

Number Two!  I spent quite a while yesterday morning trying to figure out why I couldn’t fill my prescription for insulin. Obviously a #firstworldproblem because I knew that it was just a pharmacy and/or an insurance glitch.

That’s a reminder that if you haven’t yet contributed to the Spare a Rose campaign, please click here to donate. It is more than an insurance/pharmacy glitch when children with Type 1 diabetes in developing nations die because they have no access to insulin. Although Valentine’s Day has passed, it is not too late to Spare a Rose to Save a Child.

After several phone calls to my endocrinology office and pharmacies in both Minnesota and Arizona, I will be able to pick up my 90-day supply of Novolog tomorrow. Should I mention that the insurance-contracted price is $1103.89 or $275 per vial? In June 2014 I wrote a blogpost titled “Then and Now” and shared a 1977 bill of $3.91 for one vial (a 2-month supply) of Lente insulin. Not much else to say….Scan_Insulin2_1977_Blog

Number Three!  My sister is flying across the country this week to visit me in Arizona. SheDex G5 Phone  also has Type 1 diabetes and my interview of her is one of my most-viewed blogposts ever. We couldn’t be more different in our diabetes care. She uses Lantus now only because Lily quit making Ultralente in 2005 and her refrigerator stockpile ran out. She uses Regular insulin as her bolus insulin and has chosen not to use Humalog, Novolog, or Apidra. All of this is with vials and syringes. I of course have used a pump and CGM for years. Fortunately we are both doing well after almost 4 decades of diabetes.

Because of my free upgrade to the Dexcom G5, I have several unused Dexcom transmitters. (My current G4 transmitter has been in use for 11 months with no signs of failing.) I am going to ask my sister whether she would like to use one of my G5 transmitters along with her iPhone to try out a Dexcom CGM. I suspect that she will say no, but maybe not. Unfortunately she is older than I am and already on Medicare. Maybe it is cruel to let her experience life with a CGM when she would have to self-pay to continue on the system.

IMG_0731Number Four!  I have been hiking a ton this winter and playing golf at least once a week. Abby the Black Lab has been enjoying two walks a day. My Fitbit is exploding with steps and I have averaged 18,850 steps (8.5 miles) per day for the last 4 weeks. If only the other parts of diabetes care were as easy for me as exercise. I’d be willing to trade 5,000 steps (or even 8,000 steps!) a day to anyone who would cook me delicious, healthy, low-carb dinners.

That’s it for today. Be strong. Be well. Be happy. Keep fighting the good fight and see you around the DOC.

Check It Out!

Laddie_Head SquareIt’s been a while since I’ve shared what I am reading and listening to. In the past couple of days I read one blogpost and listened to two podcast episodes that I think are worth your attention.

At the top of my bookmarks for non-diabetes blogs is a website titled Heart Sisters. This blog is self-described as “All about women and heart disease – our #1 killer – from the unique perspective of CAROLYN THOMAS, a Mayo Clinic-trained women’s health advocate, heart attack survivor, blogger, speaker.”

Currently I do not have heart disease although as a woman in her 60’s with Type 1 diabetes, I know that I am at risk. The appeal of this website for me has less to do with heart disease and more to do with the shared experiences of women (really all people) living with a chronic disease.

On October 17, Thomas published a blogpost titled “How Minimally Disruptive Medicine is happily disrupting health care.” She highlights the Mayo Clinic’s KER (Knowledge & Education Research) team led by Dr. Victor Montori. Dr. Montori is well-known for his discussions of the chronically-ill patient’s “burden of treatment” and is a proponent of eliminating terms such as “non-compliant” and “non-adherent.”

Heart Sisters 1

Those of us with diabetes are experts at recognizing the burden that our care places on our lives. Thomas shares a quote from a 46-year old woman (V. T. Tran interview) whose comments will hit home for many of us:

“There is stuff that I am SUPPOSED to do, and stuff that I actually DO.  If I did everything I am SUPPOSED to do, my life would revolve around doctors and tests and such and there wouldn’t be very much left for living my life.

I strongly urge you to read this blogpost and dream about an ideal world where medical professionals no longer blame patients and instead work towards patient health goals with a secondary emphasis on diagnostic test numbers.


Juicebox Podcast is an offshoot of the well-known diabetes parenting blog Arden’s Day. In 2007 Scott Benner began sharing life stories after his daughter Arden was diagnosed with Type 1 diabetes at age 2. Scott proudly proclaims that he is a stay-at-home dad and the author of Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad. Never one to shy away from a challenge, Benner began a podcast in early 2015 and named it after the numerous juiceboxes his daughter has consumed to treat low blood sugars.

This weekend while walking the dog, I listened to two Juicebox Podcast episodes which focused on Dexcom. Episode #27 was an interview with Kevin Sayer who is the CEO of Dexcom. Rather than recreate the wheel, I’ll share Scott’s synopsis of the episode: “Dexcom CEO Kevin Sayer talks about the Dexcom/Google collaboration, pump integration, Android and iOS/CGM in the Cloud issues, Medicare, Medicaid, Adhesive concerns…. Sayer was an open book who dished about things that I thought for sure he’d decline to speak about.”

Episode #28 was an interview with Steve Pacelli who is Dexcom’s Executive VP of Strategy & Corporate Development. Once again per Benner: “Just 24 hours after the surprise FDA approval of the Dexcom G5 continuous glucose monitoring system, I spoke with Dexcom EVP Steven Pacelli and asked him all of the questions that were submitted to me by my blog readers and podcast listeners – I even threw in a few of my own. If you’re wondering about Dexcom G5 upgrading, cost, out of pocket, battery life and more?”

Juicebox Podcast 1

Both of these Dexcom interviews were released in August and some of the G5 discussion is a bit dated. A minor point because both conversations are fascinating with insider views of Dexcom’s past, present, and future. I found Sayer’s discussion of the Google/Dexcom collaboration to be particularly interesting with his views on device miniaturization and the possibilities for the Type 2 market.

As an adult with Type 1 diabetes, I am not necessarily the Juicebox Podcast‘s target audience—parents of children with T1. Some of Benner’s interviews focus on parenting issues such as 504 plans/talking with school administrators and I skip those. Many are interviews with other T1 parents sharing their unique stories. I listen to and enjoy those podcasts while giving thanks that I live with Type 1 rather than my children. Finally there are interviews with people such as NASCAR driver Ryan Reed, American Idol contestant Adam Lasher, John Costik of Nightscout, and the two Dexcom executives that are interesting to anyone with a connection to diabetes.

I subscribe to the Jukebox Podcast through iTunes and new episodes are automatically downloaded to my iPhone podcast app. You can also listen to individual episodes through iTunes.



Read this!  How Minimally Disruptive Medicine is happily disrupting health care

Listen to this!  Dexcom CEO Kevin Sayer Talks

Listen to this!  Dexcom G5 Approval with Dexcom EVP Steve Pacelli

The Vibe After Two Months:  Part 3 — Pump Performance

Two and a half weeks ago I surprised myself. I was standing in the pool dodging grandchildren with noodles, inner tubes, and water cannons. Out of nowhere I began to envision the possibility that I might choose to stay with the Animas Vibe when I select my next insulin pump in late 2016. You’re probably thinking “Where in the heck did that come from?” Part 1 of this series was highly critical of the Vibe as a pump/CGM system. Part 2 detailed my frustrations with the klutzy hardware and software integration of the Dexcom G4 into the pump. So how in the world did I get to the point that not only do I not hate the Vibe, I am relatively happy with it.


Laddie_Head SquareI’ll start with a little history. In late 2012 I left Medtronic for Animas because I wanted upgrade access to the first pump to be released in the USA with a Dexcom integration. I had read a lot about the convoluted menus of the Animas Ping but figured that I would get used to them. Very quickly I figured out that I had greatly underestimated how much I would hate these menus. Over a year later I was still grouchy with my pump decision and frustrated with the constant scrolling, the need to populate each recommended bolus from zero, and the lack of a Back button.

One day a couple months ago it dawned on me that I had become so adept at scrolling and button-pushing on the Ping that I didn’t hate it anymore. I still wondered what the Animas designers had been smoking when they designed the software system…. But I didn’t fight it anymore.

When I received the Vibe in mid-February, it didn’t take long for me to form negative opinions on the CGM integration into the device. At the same time the insulin-delivery functions of the pump were mostly fine and I daily appreciated the jump-to-bolus feature. In mid-March I quit using the Vibe as my CGM and went back to the Dexcom G4 receiver. This simplified my interactions with the Vibe and my satisfaction with the device increased quite a bit. Very importantly, it eliminated the nagging BG calibration alert. No more beeping after every bolus containing a BG number! I no longer had the frustration of the slow-refreshing graphs and I could mostly stay out of the no-man’s-land CGM menu. I began to concentrate on what I liked about the pump rather than my dislikes. At this point I was content that the Vibe was my pump until late 2016.

Let’s go back to the swimming pool. When you have diabetes, going swimming can entail a bunch of complex, usually no-win decisions. Should I risk wearing my pump until I jump in the water and what if I forget to take it off? Should I take some of my basal ahead of time? How long can I go without my pump and how much basal did I miss? What if someone knocks my pump off the table or steals it out of my tote bag? Using the Vibe allowed me to just keep using the pump in the water and not worry about diabetes issues. I could wear my swimsuit for several hours and be as relaxed as everyone else. (Although the Ping was also waterproof, I didn’t spend as much time in the pool as I do now and anticipate doing in future years.)

So all of a sudden I was standing in the pool and thinking that not only was I content with the Vibe now, I could see selecting it for my next pump in late 2016. Do I think it is the best pump ever? Absolutely not. But the menus are adequate, the pump is sturdy, and I really pump_animas_vibelike the fact that it is waterproof. Although I might not choose to use my CGM very often with the Vibe, it is a nice back-up option for times when I don’t want to carry the Dexcom receiver. (This point will be moot once the Dex G5 is released because a receiver won’t be required and it won’t be compatible with the Vibe.)

Would I sign a contract now for the Vibe in 2016? No. But because I will be a few months shy of Medicare when I make my next pump decision, the Omnipod and Snap will be off the table unless Medicare coverage changes. It is unlikely that I will leave Dexcom for the Medtronic CGM, so that essentially takes the newer Medtronic pumps out of contention. (At the same time I was super impressed when a got a chance to see the Medtronic 640G at the UnConference in March.) Accu-Chek is not a good fit for me and I refuse to use a tubed pump that requires a remote controller. So it will be the Animas Vibe versus Tandem (and maybe Medtronic?). Let the battles begin!

One thing that I have not talked much about in this post is the decision to leave the Ping to upgrade to the Vibe. Many Animas pumpers (or parents of pumpers) rely on the meter remote of the Ping and the lack of one becomes a deal breaker for the Vibe. I hated the remote and it was relegated to a dark closet several years ago. In my book everything about the Vibe is equal to or better than the Ping.

At the bottom of the post, I have attached a link to a sheet that I received from Animas highlighting the differences between the Vibe and the Ping. A lot of the changes relate to the addition of the CGM functions. The biggie for me is the one-button bolus population. I also like the ability to see my IOB with one button push. There are other menu changes that aren’t important to me and I still goof up with some of the new navigation arrows in the Setup, Status, and History menus. I have no interest in the Food list which is now in the pump, but others might like that feature.

In summary, I am mostly happy with the Vibe. For me it is a sturdy, reliable, waterproof pump that is not overly aggravating when I don’t activate the CGM functions. At the same time I believe that Animas missed the opportunity to design and release a  pump which could have hit a home run in the diabetes tech world. I have no idea if there are new pumps in the pipeline at Animas, but I hope so. As we see feature-rich pumps such as the Medtronic 640G and offerings from Tandem, Assante, and Omnipod hit the market, it is my opinion that the Vibe longterm will have a shrinking share of the insulin pump market.

Click this link to see a PDF scan of the Animas Vibe Features Guide In comparison to the OneTouch Ping insulin pump: Animas Vibe_Ping

Midnight Two and Five

Laddie_Head SquareThe big thing around the DOC these days is the NY Times Op-Docs feature titled “Midnight Three & Six.” This twelve minute video was filmed by Joe Callander and funded by the Sundance Institute. In remarks accompanying the film, Callander begins the story as follows:

For the past eight years, the Chamberlain family in Fort Worth, Tex., has been coping with a nightmare all parents fear: In 2006, their daughter, Grace, was given a diagnosis of a life-threatening disease. Grace has Type 1 diabetes, for which there is no cure. Now 15 years old, she has endured approximately 34,000 blood tests, 5,550 shots and 1,660 medical tubing injections to keep her alive.

Later he writes:

But I was most struck by the realities of the family’s daily routine. Grace’s mother …. told me about nights punctuated by alarms to get up and check her daughter’s blood sugar, at “midnight, 3 and 6.” That timetable became my structuring device for making this film.

By Sunday afternoon there were 165 comments on the documentary. Some claimed that the Chamberlain’s family mirrored their life perfectly. Others labeled it as an overly melodramatic depiction of Type 1 diabetes and criticized the parents for how they care for their daughter. My guess is that all of the comments have some merit and mirror fragments of life with Type 1. To put it all in perspective, you should read the comment by Grace’s father who defends/explains his family’s experience and concludes that the film is an artistic peek at one family’s life with diabetes, not a factual textbook. He writes:

finally, please remember that a very talented, creative film maker asked us for a behind the scenes look at our family situation with T1D; then , he crafted a 12 minute film to encapsulate his subject matter in an artistic way. The film is getting a huge response, and we are happy about that…including the disagreements!

If you haven’t seen the film, watch it here. Be prepared to be disturbed whether or not you agree with the depiction of Type 1 diabetes. If you have time, read the comments.

The purpose of this blogpost is not to give my views of the documentary, but rather to use the title “Midnight Three & Six” as a starting point to discuss how often Type 1 diabetes and a good night’s sleep are incompatible.

I have had Type 1 since 1976—diagnosed at age 24. Parents were never involved in my T1 life and no alarms were ever set to test my blood sugar. Of course I had many years of diabetes before I even had a home BG meter. I also lived with diabetes before the Internet and as a somewhat ignorant young adult never considered that I might not wake up in the morning.

Although they were not an every night occurrence, I have vivd memories of horrific lows in the middle of the night. Waking up sweaty, shaky, and disoriented. Staggering downstairs for orange juice followed by multiple bowls of Frosted Flakes and milk. When I was lucky, I was able to find a dry nightgown before returning to bed, but it was always a struggle to avoid the sweat-drenched tangle of sheets where I had previously slept. I remember the freezing cold that permeated my bones and the inability to get warm even with the electric blanket on high. I can still appreciate the buzz as sugar raced through my body reviving my numb limbs, lips and brain. Although I probably woke the next morning with crazy high numbers, I have no memories of that.

As I aged, it became rare to sleep through the night without at least one trip to the bathroom. I began testing my BG when I got up. If it was low, I’d go back to bed with a couple of Werther’s candies in my mouth. It was many years before it became part of my Sleepy Dwarfwheelhouse to take an injection to bring down a high. I never woke at night without diabetes being the first thing on my mind.

I now live with a CGM. You would think that this watchdog would enable me to sleep soundly, but sometimes I think it is the exact opposite. There are many nights that the Dexcom is on the Midnight 3 & 6 schedule along with Grace’s parents, or more accurately for me, the Midnight 2 & 5 shift. I struggle with eating too many snacks through the evening. Sometimes it’s junk food. Other times by trying to avoid carbs, I eat things like nuts and cheese. It doesn’t matter which. The pattern is to go low early in the night from too much insulin and then go high at 2:00AM. Although I try to be conservative with corrections, usually the highs are followed by lows in the predawn hours. My G4 definitely earns it keep by alerting me to each one of these out-of-range numbers. Since I am confessing my sins, I might as well admit that I eat glucose tabs and dose insulin based on Dex numbers all night long.

On Friday after being frustrated with the current sensor, I ripped it off at bedtime and decided to splurge with an uninterrupted night of sleep. I had eaten nothing since an early supper, had no IOB, and felt confident that nothing too disastrous would happen. I think that it was the first night in two years that I had gone to bed without a functioning CGM (except for a few times when my transmitter died and I had to wait for a replacement).

I slept marvelously. No, I slept marvelously until 5:56AM when my Animas Ping starting singing Für Elise signaling a pump alarm. It turned out that I had not pushed any buttons for 12 hours and had triggered the Auto Off safety feature. A button push or two and insulin delivery resumed. Back to sleep. Back to sleep until 6:12AM when a twinkle alert indicated that my pump had lost prime. (Losing prime is an extremely annoying problem with Animas pumps and requires that you unhook your infusion set and prime a few units of insulin to restore pressure in the insulin delivery system.) A trip to the bathroom, bright lights, my infusion set reattached, and I was awake for the day.

Although my diabetes control is “good,” the fact that I rarely have a night without Dexcom alarms would indicate that I have problems that need to be addressed. I have a list of things that could be improved. In the meantime, if there are any parents who would like to take the Midnight 2 & 5 shift and start testing my BG, dosing insulin and giving juice as needed, I’m taking applications….

Why I Don’t Download

Laddie_Head SquareThere are many discussions around the DOC about data interoperability and ownership of data. There are also survey results that indicate how rarely most people with diabetes download their devices.

Last week I had an endocrinologist appointment. I know that I am guilty-as-charged about not downloading my devices very often. But I always do it prior to endo appointments. I consider data extraction a tedious process and it seems to take forever. To figure out if the download time is a legitimate excuse or whether I am just a slacker, I decided to chart my experience.

10:38  I gather up the necessary cords and my two Freestyle meters. My pump and CGM are of course close by in my pockets.

10:40  I prepare my Animas Ping pump for the download. I change the Display Timeout from 15 seconds to 1 minute. If I don’t do this, the pump will sometimes turn off before the Diasend Uploader can start reading its data. Then I suspend the pump and unhook it from the infusion set. I open the Diasend Uploader and attach the wireless upload device to my computer.  I start the download which is always a slow process. After the pump is downloaded, the Diasend uploader asks for my login info and I type it in.

10:47  I have finished the download of my pump and I download Freestyle Lite Meter #1 to Diasend. Quick and and easy.

10:48  I download Freestyle Lite Meter #2 to Diasend. Once again, quick and easy.

10:49  I plug in my Dexcom G4 receiver. The download to Diasend is simple and finished within a minute.

10:50  I follow the Uploader prompt to go to the Diasend website and sign in.

10:51  While the Dexcom receiver is attached to the computer, I open Dexcom Studio and download the CGM data to the Dexcom program.

10:53  All of my devices are downloaded and I cram the cords back into my “Diabetes Download” handy-dandy storage box.

I have invested 15 minutes in my diabetes download project. If I didn’t have an endo appointment and just wanted to view the reports on the computer, the bulk of the work would be done. Both Diasend and Dexcom Studio do a good job of displaying reports clearly and quickly.

But I want to save some of the reports to my “Medical Reports” folder and print them out for my doctor to review.

10:54  In Dexcom Studio I open the Summary Report in Microsoft Word using the last 14 days of data and save it to my computer. Then I print it for my endo. I have felt that I have really been struggling lately with my diabetes, but the reports look quite good. When you’re stuck in the trees, life can look bad although the forest view is quite respectable.

10:57  I go to the Diasend website to print reports. The Compilation Report is the most useful summary because it merges data from my pump, meters, and CGM. I also like one of the CGM reports. I save both to PDF.

I am going to digress here and talk about how some endocrinologists hate Diasend reports. They look fabulous on the computer and many doctors view them that way. But when they are printed, the charts are so small that they are almost unreadable. HEY DIASEND! NOW THAT YOU FINALLY DOWNLOAD ALL OF MY DEVICES, PLEASE PRINT THE REPORTS SO THAT MY DOCTOR CAN READ THEM!  

We own a full version of Adobe Acrobat (a different program than the free Adobe Reader) and I am able to crop the Diasend reports and enlarge them. They are still small but better than the standard reports. My endo will be able to read them. I print the reports and save them to my computer.

11:08  My pump and CGM are back in my pocket. Freestyle Meter #1 is in my purse and Freestyle Meter #2 is on the floor by the stairs to be returned to the master bathroom on my next trip upstairs. (I never put anything on the stairs because my first frozen shoulder developed after a fall from stepping on shoes left on the stairs.)

So here’s a summary:

15 Minutes: That’s what it takes to download my diabetes devices to Diasend and Dexcom Studio. If I didn’t want to print anything, various reports are immediately available.

30 Minutes: That was the total time to download my devices, print several reports for my doctor, and save those same reports to my computer. Obviously I spent more time than other people might.

15 minutes. 30 minutes. That is why I don’t download all of my diabetes devices very often.Download Time

Okay, now it is time to stop making excuses. The data from my Dexcom G4 is by far the most useful information I have when it comes to evaluating blood sugars. I can download the receiver to Dexcom Studio in one minute. It takes another minute to download to Diasend. And maybe another minute to find the download cord and open the computer programs. So from start to finish it’s two or three minutes. I can even save a minute by downloading to only one program instead of two.

So what have I learned from my time study? I have learned that it would make sense to start downloading my Dex G4 on a more regular basis. It’s super quick unlike the time and effort that it takes to download four devices. I can download my G4 to Diasend (unfortunately not yet to Dexcom Studio) on my MacBook and that is even faster and more convenient than with my Windows desktop.

Will I change? I actually think I might. (Just for my Dexcom, not the other devices)

One last question: If I download my data, am I supposed to look at it?

Musings on Approaching Medicare

Sue_HeadSquare2I will turn 65 in May, which means I will be Medicare eligible. I have several friends and family members who thought going on Medicare was a wonderful blessing, because they now had affordable health insurance that also covered extras like well exams and gym memberships. Of course I think that Medicare is a blessing for seniors. However, for Type 1 diabetics who have had use of a continuous glucose monitor (CGM) to give them a continuous readout of their blood sugars, thus minimizing hypo and hyperglycemic episodes, this often meant that they lost whatever health insurance plan they were on, and were forced to go on Medicare. Unfortunately, Medicare presently does not cover CGM’s because they consider it “precautionary equipment”.

Anyone who regularly reads Test Guess and Go and has read Sue from Pennsylvania’s blogs about her husband losing his CGM coverage and his numerous appeals to get it reinstated already knows what a futile effort that is. Thankfully, Sue’s husband was able to get CGM coverage through the Veterans Administration. There is presently a House bill (H.R. 5644: Medicare CGM Access Act of 2014) and a companion Senate bill (S. 2689) that would facilitate Medicare coverage of CGM’s. If you haven’t already done so, please ask your representative and senator to co-sponsor these important bills.

I am somewhat apprehensive as I approach Medicare. I say somewhat, because I am lucky to have retiree health insurance through the school district I worked for, and will be able to continue with this insurance after I go on Medicare. I presently have excellent coverage of my CGM, but at one time I received a denial of coverage, appealed the decision and won my appeal. I am concerned that my insurance plan will follow Medicare guidelines and deny coverage. I will not know until I go on Medicare, so I will have to wait and see what happens, but I am hoping that they will continue to cover my Dexcom CGM. I am continually thankful that I have it, and am amazed at how much my quality of life has improved despite sometimes annoying beeps that warn me of impending high and low blood sugars.

I have been using the Omnipod pump since 2007, my one and only pump. I know that Medicare does not cover this pump, so if my retiree insurance won’t continue to cover this pump I will be forced to use a tubed pump. This is not such a big deal to me as continuing to use the Dexcom.Medicare Questions

If I am unlucky and my insurance plan won’t continue to cover my Dexcom, I will join the hundreds of other senior Type 1’s who can’t benefit from CGM coverage, putting their lives  in danger every day. I pray that we can get more momentum for these bills and get them both signed into law.

If you have not previously contacted your Senators and U.S.
Representative to support CGM Coverage by Medicare, please
click here to go to the JDRF page that contains links and
easy-to-follow instructions to have your voice heard.


Sue B_Head SquareI have been advocating for over two years for Medicare to cover a Continuous Glucose Monitor (CGM) for my husband Marc. Synopsis – he had been covered for the CGM when he had private insurance through his employer, but when he turned 65 and became Medicare eligible, and needed a replacement CGM, it was denied. Medicare considers the CGM precautionary and therefore, in their opinion, not necessary. Of course, those who desperately need one disagree with this. The first denial came in August of 2012 and shortly thereafter, we started the long and exhausting appeals process. When we got to Level 3, a hearing by an Administrative Law Judge (ALJ), it took almost nine months after our June 26, 2013 hearing for the Judge to render an UNFAVORABLE decision. We decided to go on to Level 4 which is a hearing with the Medicare Appeals Council (MAC). They have the power to overturn the Judge’s decision. This Appeal was submitted to them in April of 2014. We are now in the 5th month of waiting for the Council to make a decision. The Appeals process is almost like watching a tortoise cross the road. It’s very, very slow.

In the meantime, Marc, after 45 years, decided to apply for VA benefits. He had served in the United States Air Force for four years but had never thought of getting any benefits through the VA. From the time he submitted his first application to when they processed him in took almost two years (nothing we do happens quickly). Finally, in May of this year, he became a part of the VA. He had to go through all types of exams, one of which was with the VA endocrinologist. In checking his A1c and hearing about his problem with hypoglycemia unawareness, she definitely thought that he needed a CGM and prescribed one for him. However, as with Medicare, we were told that the wait to get one was 1 – 2 years. For some reason, and I can only guess it was because he had so many instances of blacking out, she went to bat for him and I can finally say, HE HAS A CGM! Two weeks after speaking to her, he received an email from Dexcom that his CGM was on its way. Four days later it came.

To say that we are thrilled is putting it mildly. Our two years without a CGM are finally over. For myself, I can now be at peace during the day when Marc at work knowing that if his sugar starts to drop rapidly, he’ll get those warning beeps. And I welcome those beeps at night (which used to drive me crazy) because now I can sleep better (in between the beeping) knowing that we’ll have time to correct the situation before I have to go running for the Glucagon.

Dex Box Hooray

When I became an advocate for his CGM, I made a commitment to continue to fight for Medicare to make a change in their guideline even if Marc did eventually get a CGM, whether through Medicare or some other source. I intend to keep that commitment and will continue to work towards that goal. To that end, we are letting the Level 4 Appeal play out even though, if we are fortunate enough to get a FAVORABLE decision, we can no longer get a CGM through Medicare. It is our hope that if anyone who is thinking of going through the process will see that it is possible (I hope) to get a good decision and soldier on. No one should have to go through what we’ve gone through in the past two years to get a piece of equipment that is so life-saving.

If you are a Veteran and have not joined the VA, you might want to consider applying for benefits whether you are a diabetic or not. In the past four months, not only have they covered Marc’s CGM and sensors, but also Symlin, which is a synthetic aid in lowering blood sugar and is quite costly, his cholesterol medication, syringes, etc. In a future blog, I will give you a few hints about joining that might make it easier to navigate the VA, one of which is to contact your local County Veterans Service Officers. They are most helpful.