Dexcom G5 and Medicare:  What’s Going On?

History

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

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

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

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

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

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

Where are We Now?

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

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

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

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

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

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

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

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

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

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

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

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

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

The Part We Hate!

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

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

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

What Others Are Saying?

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

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

My T1D husband has a traumatic brain injury. So it is invaluable to me, his 24/7 caregiver for 3 1/2 years to be able to use the share/follow app. He had a severe car accident due to a low blood sugar which the initial 4 months of hospitalizations and rehabilitation cost almost 2 million dollars. If he would have just had a CGM it would have saved all that money, he would still be working and not on disability, and I would still be working. Every diabetic at diagnosis should get a CGM and certainly should not get them taken away at medicare age. He got his after coming out of rehab. We as caregivers near and far need to be able to assist our diabetic family and friends with the features Dexcom has like Share and Follow. —Barry and Kim.

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

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

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

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

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

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

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

Summary

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

Diabetes Pregnancy: Now and Then, Part Two

As I mentioned in yesterday’s post, I recently approached Kerri Sparling of Six Until Me about sharing my pregnancy and childbirth stories from the late 1970’s and early 1980’s. Those were the diabetes days of no home BG monitoring and one or two injections of insulin a day. Yesterday the first part of my story was highlighted at Six Until Me. Today is the second part of my tale. Check it out!

Diabetes Pregnancy: Now and Then, Part Two

 

Diabetes Pregnancy: Now and Then

A while back I approached Kerri Sparling of Six Until Me about sharing my pregnancy and childbirth stories from the late 1970’s and early 1980’s. Those were the diabetes days of no home BG monitoring and one or two injections of insulin a day. Today the first part of my story (with a few choice comments from Kerri) is highlighted at Six Until Me. Check it out!

Diabetes Pregnancy: Now and Then

Learning to Like Tidepool

In previous blogposts I have mentioned my frustration with finding a platform where I can download and view data from all of my diabetes devices. Diasend used to be my go-to site and would still work for me if I used my Dexcom G5 receiver. But I am a hipster-oldster who uses her iPhone and Apple Watch for CGM numbers. An email to Diasend followed by a phone call to Dexcom last week indicated that there are no plans to allow G5 Mobile integration into Diasend for US users. Dexcom Clarity is great for analyzing my CGM data but it doesn’t include pump or BG meter information. Tandem t:connect allows me to download my pump and Freestyle Lite meters but does not show CGM information. Maybe when the Dexcom G5 is integrated into the t:slim X2 later this year, the Tandem site will include all of my information. Although I love mySugr and the cute monsters, I don’t need a day-to-day logging app. Pretty quickly I get down to Tidepool as the only platform that is compatible with all of my devices.

My first experience with Tidepool was last fall when I participated in a research study through Glu. I downloaded my pump and meters weekly while my CGM synced to Tidepool through Apple Health. I was required to enter my food and carb counts through the Blip Notes app. The use of hashtags for notes initially bugged me but with practice it became quite easy. The Basics screen in the Blip dashboard was novel and my data was displayed in charts and domino dot patterns. I don’t recall spending much time reviewing the Daily View screen. In general I couldn’t envision how my endocrinologist would work with Tidepool because she requires printed reports. After the Glu study ended, I drifted away from Tidepool.

Fast forward 7-8 months and I am becoming a Tidepool fan. A couple of things happened to bring the website back to my attention. One, Chris Snider was hired as Community Manager and I assume that he is instrumental in the new informative emails showing up in my inbox. Two, it was announced that Tidepool users are now able to share their data with Type 1 diabetes researchers. You can learn more about the Tidepool Big Data Donation Project and how to participate at this link. Three, a recent email shared a clinician’s video featuring Diabetologist Dr. Anne Peters demonstrating how she uses and interprets Tidepool reports. I am always interested in what endocrinologists are seeing and thinking and her presentation helped me understand how I could gain insights into my diabetes using Tidepool.

I encourage you to take the opportunity to watch this video.

 

***** Interruption *****

Why do I download data?

I download data: 1) to take to every endocrinology appointment,  2) to review my numbers for a pat-on-the-head or a kick-in-the-butt, 3) to provide printed reports for Medicare which requires a 30-day log for pump supplies and a 60-day log for CGM supplies, 4) for various clinical studies and/or beta-testing apps, and 5) for curiosity to test new data platforms.

***** End of Interruption *****

Tidepool is a non-profit company and was founded in 2013 by Howard Look, a self-described nerd who has a daughter with Type 1 diabetes. Like many small diabetes tech companies it grew out of the #WeAreNotWaiting movement and is powered by geeks, D-parents, and PWD’s. As Look mentions at the end of the video, employees at Tidepool “have pancreas in the game.”

To get started with Tidepool, go to www.tidepool.org. Although you can check out the website in any browser, the Uploader is a Google App and you must use Chrome on either a Windows or Mac computer for downloading and viewing data. I have contacted Tidepool support several times by email and have always received prompt and courteous help.

Where do I go with Tidepool from here? I am pleased to be participating in the Big Data Donation Project and have recurring calendar reminders to download my pump and meters. My Dexcom G5 syncs to Tidepool continuously through Apple health. I also plan to periodically review my own D-numbers and graphs through the Blip dashboard. After 40+ years of Type 1, I am not good about day-to-day logging and probably won’t use the phone app very often, but you never know. I am currently a beta-tester for a new version of the app and maybe I’ll get hooked. Rather than reviewing my graphs and numbers on a computer, my endocrinologist uses print-outs that are eventually scanned into my medical record. In the Tidepool video above, Dr. Peters provides a glimpse of the future where diabetes data is viewed online and interactively with patients. It will be a long time before that future shows up at my doctor’s office.

In addition to exploring Tidepool.org and signing up for the Big Data Donation Project, you can learn more about the company through these links:

Diatribe (2014):  How the Tidepool Data Integration Platform Can Ease Diabetes Management: Our Interview with Tidepool CEO Howard Look

Six Until Me (2015):  #WeAreNotWaiting: The (Not So?) Brief Story of Tidepool

Diabetes Mine (2016):  Tidepool Goes Big After White House Visit

Diabetes Numbers Podcast Episode 23 (2017):  Tidepool’s Big Data Donation Project

In conclusion here are screenshots provided by Tidepool of the Blip Basics Home screen and a Daily data view. Note that the Daily view shows insulin, carbs, BG’s, and notes in the same timeline as CGM data.

One Month of Medicare with Type 1 Diabetes

I thought it was going well.

Some of it is great.

I’m learning that maybe not everything is going so great.

I haven’t screamed at a phone menu yet.

I officially started Medicare on April 1. I seem to have figured out how to pay my bills through auto payment. I have received a box of pump supplies and have an order in place for CGM supplies. I have received my insulin at no cost through Medicare Part B and had another prescription covered at no charge through Part D. I belong to a new health club through a program offered by my supplemental insurance. On the surface all of this looks great and some of it is. Unfortunately not everything is going smoothly and Medicare is not approving everything.

What’s Going Great:

Silver&Fit:  This fitness program is a benefit of my BCBS Supplemental policy. It provides a membership at a participating fitness facility, an instructor-led class, or access to Home Fitness kits. I joined a club five minutes from home that has a huge number of work-out machines, weights, a spa, nutrition and fitness programs, locker rooms, and free fitness classes. I have been attending numerous strength and cardio classes and having a great time. No charge at all. My only limitation is that I can only use the club I joined and not the other branches around Minneapolis. I literally walked in the door and was a member 10 minutes later.

Doctor Visits: In April I had two routine doctor appointments. It was easy to provide my Medicare information and as far as I can see, they are being covered with no issues. I feel bad seeing how low the Medicare reimbursement is for my doctors.

Not Perfect but On the Right Track:

Insulin for Pump: As I explained in a previous Medicare blogpost, insulin for an insulin pump is covered under Part B DME. With my supplemental plan coverage that means I get my insulin at no cost. I am not bound by formulary restrictions nor does my insulin require a copay or put me into the Part D donut hole. The new prescription from my endocrinologist contained the required information and I spoke to a pharmacy tech to remind them to file it with Part B. Very quickly I got an email that the prescription was ready; it had been charged to my Part D plan with a charge of $481 for 3 vials.

The next morning I went to Walgreens and fortunately the pharmacist on duty knew how to correct the problem. She told me that it would be referred to the central Walgreens Medicare department and it might take 2 days to set up. That afternoon I got a call from the Medicare department and was asked for information such as my pump brand, model, serial number, purchase date, and whether it was paid for by Medicare or private insurance. That all made sense and was easy to provide. She finished our conversation with two questions. How tall are you? What do you weigh? Huh??? She said that my insulin would be ready for pick-up in an hour and it was.

Pump Supplies: In March I contacted Tandem Diabetes to learn my Medicare supplier for pump supplies. I was told that according to my supplemental insurance, I should use CCS Medical and Tandem would set up the account for me. CCS has been great so far and has contacted me and my endo’s office several times to get the necessary information. One requirement was a C-Peptide test which I had never had before in my diabetes career. As expected, I passed or failed the test depending on your criteria. I failed because I produce minimal to no insulin. I passed because I qualify for a pump and supplies under Medicare.

My pump supplies arrived quickly and were exactly as ordered. Last evening I went into the Medicare site to check my claims and was stunned to see that my pump supplies were denied. I called Medicare this morning and got no good answers as to why. It was suggested that maybe I was using the wrong supplier and I was given the name of another supplier who doesn’t even provide supplies for insulin pumps. I called CCS and the rep indicated that they were already working with Medicare to get it straightened out. She said that it was very common for supplies to be denied on the first go-round for patients new to Medicare. She assured me that everything is OK and I am choosing to believe her.

A Total Mess:

All of us on Medicare were thrilled when the Centers for Medicare and Medicaid Services (CMS) announced in January 2017 that the Dexcom G5 was now covered as a therapeutic CGM under Medicare DME. Soon after that CMS released a document with preliminary coverage criteria and Liberty Medical was identified as the sole Medicare-approved supplier for the G5. Liberty was deluged with calls but managed to start shipping supplies to some customers. One caveat however. In order to receive supplies, you had to sign that you would be responsible for the cost of the supplies if you were not approved by Medicare. Meanwhile it was announced that more specific coverage criteria were still to be released and Medicare was not approving orders filled by Liberty.

Last week it became apparent that Liberty is not going to continue to supply G5 supplies for Medicare beneficiaries. All along Dexcom has indicated that it will not (cannot?) sell G5 supplies out-of-pocket to people covered by Medicare. Please note that the cash price from Liberty is much higher than the previous cash prices from Dexcom. Dexcom will sell G4 supplies to Medicare beneficiaries out-of-pocket. On Monday I received a letter from Liberty officially indicating that they are not going to provide Dexcom supplies after May 28. At this time there is no other supplier.

I placed an order at Liberty about a month ago. I was called last week to indicate that they had everything required to process my order and that it was under medical review. Today I canceled the order because I do not want to be stuck with the responsibility of getting an initial denial by Medicare, having to pay cash for the order, and then filing an appeal. I think I’ll wait to see what happens in coming weeks or months.

Dexcom has been quiet and provided little help to seniors. Today some people received a form letter from Dexcom indicating that they are working on the problem and stating: “If you have an immediate, critical need for Dexcom G5 Mobile CGM supplies, please contact Dexcom at 888-738-3646.” I did not receive the email.

So currently the Dexcom G5 is covered by Medicare, but not really. I am choosing to be patient and optimistic that everything will be worked out soon. Many other seniors on Facebook are angry and less optimistic.

Summary:

Some of my diabetes needs are being met through Medicare and other things are being worked out. So far I have had no problem reaching customer service reps at Medicare, CCS Medical, Walgreens, Dexcom and Liberty. Everyone has been polite and helpful to the best of their ability. Unfortunately no one at Dexcom or Liberty really seems to know what is going on and I believe them when they say the delay is with CMS. The Medicare Help Line was answered promptly but they could give me no reason for my supply denial and then nicely gave me inaccurate information. CCS Medical has been very responsive and so has Walgreens.

Right now I have everything that I need, but that won’t be true for the longterm. In the past I have often had problems when switching insurance plans and suppliers. I am hopeful that most of my Medicare problems are in the same category. I expect the pump supply problem to be resolved fairly quickly. I am less optimistic about CGM coverage.

So that’s today’s story about Medicare and Type 1 diabetes. Stay tuned for more. 😀

 

Wildflowers, Wildlife, and Diabetes in the Wild

My spring has been filled with wildflowers on the hiking trail and wildlife in the neighborhood. I’ve seen hillsides of yellow poppies along with purple desert lupines, orange globe mallow, red Indian paintbrushes, and white soaptree yucca blooms. I’ve seen snakes, lizards, javelina, coyotes, and recently a bobcat while on an after-dinner bunny hunt** with my grandchildren. My spring has also had an interesting mix of “diabetes in the wild.”

**Whenever my grandchildren visit Arizona, we go out in the golf cart after dinner and look for bunnies. The children maintain a bunny book where nightly bunny totals are recorded. There is a column for “Ciyotes” which was edited this year to include bobcats. 

Neighbor

My first “diabetes in the wild” encounter happened when my next door neighbor came to talk to me about a tree issue affecting both of our yards. She and her husband are part-time Arizona visitors because he still works full time. We’ve always been friendly but have never talked about much except the weather and grandchildren. Sylvia indicated that Jim wasn’t there yet because he was traveling for work. I knew that he was affiliated with a major university in their home state but had never asked for more details. I asked Sylvia about Jim’s profession and she said that he was a teaching professor and practicing physician in the speciality of…. Wait for it! ….Endocrinology!

So for 8-9 years my Type 1 diabetes of 40 years and I have spent the winter months next door to a renowned specialist in diabetes. Similarly he has unknowingly lived next door to a not-so-renown diabetes blogger!

It rained the next couple of days and before I knew it, Jim and Sylvia had left and I didn’t see them again before I returned to Minnesota. Thus I never got to have a celebrity-crush visit with the neighborhood diabetes doctor. I Googled him and learned that he is quite renown on a national basis. I didn’t get a chance to give him one of my blog business cards and I have no idea whether he ever reads patient blogs. My own endocrinologist avoids diabetes social media and does not read the blogs of her patients. On one hand I think doctors benefit from hearing patient voices; on the other hand I know my endo works long hours with insufficient pay and I don’t expect diabetes to be her hobby. If Dr. Jim chooses to read any of my blog, he will learn that I am an educated and involved patient who does her homework and improvises with “her own thing.” It will be up to interpretation whether he sees me as an empowered consumer or a nightmare patient….

Gym Meet-Up #1

I went to my Arizona community gym a few days before returning to Minnesota. A man about my age was the only other person there. We said “Hi” and continued with our workouts. After about 15 minutes, he introduced himself as “Tony” and asked about the Dexcom transmitter on my arm: “Hey, is that thing on your arm for diabetes?” I said yes and indicated that it was a continuous glucose monitor and described what it did. He told me that a year ago he had started working out and changing his diet to try to avoid diabetes which runs rampant in his family. He had lost 43 pounds, gained muscle, and felt energized by his new level of fitness. His doctor was thrilled with the effect on his lab work. I don’t think that Tony had been diagnosed with pre-diabetes but hopefully his hard work will prevent or at least delay diabetes coming into his life.

Gym Meet-Up #2

While Tony and I were speaking, an elderly man (I’m old, but he is older!) came into the gym and started his workout. After Tony returned to his weights, this gentleman came over and pointed to my JDRF tee shirt and said that his wife had been very involved with them. (Thanks to Sara of “Moments of Wonderful” for the shirt.)

A bit teary-eyed he told me that she had died six months ago after 60 years of marriage. He was an engineer by trade and had always helped her take care of her diabetes. She wasn’t good with numbers he explained. She used a pump and CGM which I assume were Medtronic because he said that her “thing” didn’t look like mine. It turns out that Morrie lives next door to one of my friends so I plan on looking him up next year when I’m back in Arizona. I would enjoy hearing more of his story as a caregiver and more about his wife’s journey with diabetes. Morrie indicated that he hadn’t been getting out much since his wife died and how much he enjoyed talking with me. The enjoyment was mutual, but tinged with sadness.

Poppies, bobcats, and diabetes. Wild things.

Winning the Battle with Tandem Occlusion Alarms

I began using the Tandem t:slim X2 in mid-December and wrote a product review in February. At that point I was frustrated with what I called #FakeNews occlusion alarms. I described the situation:

“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.”

I mentioned that I had tried several recommendations from both Tandem reps and t:slim users on Facebook. Because I was using cartridges for more that the recommended 3 days, I began changing them more frequently. Instead of reducing the number of occlusion alarms, more frequent changes with less insulin in the cartridge resulted in more alarms. I tried carrying my pump in a Spibelt and then a Flipbelt as one D-friend recommended. I found the belts uncomfortable for everyday use and was quick to abandon them when I got an occlusion alarm wearing one.

A Tandem tech gave me a call and indicated that he is convinced that these occlusions happen because of temperature changes. He wanted me to start using a Tandem case to protect the pump from temperature changes when it was taken out of my pocket or Spibelt. He promised to send me a case without the clip so that I could carry the pump in my pocket. Meanwhile I started using the dreaded t:clip case which was bulky and ill-balanced and frequently fell off my waistband. I used the case for a week and hated it despite having no occlusion alarms. I took it off for a day hike and immediately had another lunchtime occlusion alarm.

Very quickly I reached the point that I was going to wear the pump the way I wanted to and occlusion alarms be damned. I wasn’t going to use an uncomfortable waist pack. I wasn’t going to use the t:clip case which ruined the elegant size and looks of the pump. I wasn’t going to change the cartridge every 3 days and waste a ton of time and insulin doing so.

Meanwhile I recalled that both Sarah “Sugabetic” and Kerri Sparling had written about a metal clip that could be attached directly to the pump. I reviewed their blogposts and ordered a Nite Ize Hip Clip from Amazon. I was a little spooked about attaching something directly to the pump, but went ahead anyway. For the first time I felt that I finally had a solution to carrying my X2 that would take it out of my pocket but keep the sleek lines of the pump intact.

I started using the Hip Clip on February 15 and made it 17 days before I had an alarm during a mealtime bolus. Although the pump was on my waistband, it looked as though the tubing was bent over on itself. Not exactly kinked but somewhat bent. I straightened the tubing and resumed insulin with no problems. As of today I have made it 32 days with only the one occlusion alarm.

Meanwhile I have not had to use the bulky Tandem case. I have not had to wear a Spibelt or Flipbelt except when I choose to at the gym. I have continued to use each cartridge well past the 3-day recommendation. (I change the infusion set every 2-3 days, just not the cartridge or tubing.) I have been happy wearing the pump on my waistband and been particularly happy that the pump retains it beauty and small size.

I am wearing and using the pump the way I want to wear it and the way I want to use it.

What has been my solution?

  1. I wear the pump with the Hip Clip clipped to my waistband most of the time. I try to make sure that there is no pressure on the tubing to cause it to bend near the pump and tubing connector.
  2. If I carry it in my pocket (which is easy to do because the clip is so small), I make sure that during boluses I keep the tubing near the pump and pigtail straight.

This solution seems to work for me, but will it work for others experiencing occlusion alarms? Are those of us experiencing the alarms having them for the same reason? I can share my profile: low average daily dose of insulin (<20 units), thin-average build, using manually-inserted Comfort Short infusion sets, carrying the pump in pocket with no case, using each cartridge for longer than 3 days. From Facebook discussions I don’t find a lot of overlap with my profile compared to others. I don’t even know what percentage of t:slim and X2 users experience occlusions because discussions about occlusions primarily attract users having the problem. Many Tandem pumpers report having no occlusion alarms. Some pumpers who report occlusion alarms believe that they are really having occlusions and have been helped by switching type of infusion sets. But that is not the case for many of us.

So for now I have learned to live with and mostly avoid occlusion alarms with my Tandem t:slim X2. IMO there is a flaw somewhere in the design of this pump system because I strongly believe that I should be able to carry my pump in my pocket without alarms. Tandem also thinks so because this screenshot of the t:slim X2 webpage shows a pumper pulling an uncased pump out of her pocket.

On March 8, 2017 Tandem announced that it will soon implement infusion sets and cartridges using a newly-designed tubing connector. The news release states:  “The new design reduces the time required to fill the infusion set tubing by approximately 30 seconds and reduces the amount of insulin used in the process by approximately four and a half units.” There is no mention that the t:lock Connector will reduce false occlusion alarms and it probably won’t, but a girl can always keep her fingers crossed….

In summary, I seem to have figured out how to avoid occlusion alarms on my Tandem pump. Maybe it is the tubing; maybe it is the temperature issue. Whatever. For the most part I’m just not thinking about it. And that’s a good thing.

*******

Please note that this post only reflects my personal experiences. Be sure to talk with a Tandem representative and read as many reviews as possible if you are in the market for a new pump.

Fighting the Diabetes Chocolate Demons

This post is dedicated to my friend Carol. I met Carol through my blog and we periodically email each other talking about Type 1 diabetes, Medicare, and stuff like that. She doesn’t live near me and I don’t know if we will ever meet in person. But we share the journey, the joy, and the struggle of women aging with Type 1 diabetes. Thank-you for being part of my life, Carol.

Dear Carol-

The anguish you described in your latest email about chocolate, post-dinner eating, and making “bad” decisions probably rings true for almost everyone with diabetes. In fact it might ring true for every human being who has access to potato chips, chocolate, cigarettes, and/or alcohol. Unfortunately for those of us with diabetes, we have BG meters that provide a visual reminder of how often we have failed to live up to our expectations.

I am good at finding temporary solutions to the problem of evening snacking. I long ago gave up hope of ever totally eliminating it. Sometimes I play games that work for a while. For example I package something like Hershey’s Kisses in plastic bags of 15g carbs. I put them in the freezer and allow myself 1 bag each evening. That works for a few weeks before I realize that nothing is stopping me from grabbing a second or third bag of chocolate. Then I play around with my digital calendar and add a daily resolution event of “No cr*p eating after dinner.” When I am successful, I change the color of the event from a boring gray to a pretty color. It’s stupid, but once again it works for a couple of weeks. Sometimes I put a big “No!” sign on the refrigerator or snack cupboard, but this only works for a day to two. I have a couple more games that frankly are reminiscent of Stupid Pet Tricks…. Another thing I do is have a cup of caffeine-free tea after dinner. That burns up some of the time when I might have the urge to start snacking. Going for a walk after dinner helps but I am usually so active during the day that I don’t want or need more Fitbit steps. Some people learn to knit or crochet and others play computer solitaire to avoid snacking.

I understand some of my triggers for chocolate orgies. Snacking in the late afternoon sometimes leads to skipping dinner and that’s a recipe for disaster. Too much wine before and during dinner definitely ruins my willpower and I don’t keep it in the house anymore. I think my biggest frustration is that I can convince myself that the “correct” insulin bolus will take care of the snack food and I’ll just have a couple of cookies. But it doesn’t work. Never, never, never. It doesn’t work.

Recently I’ve had a string of successful evenings with a Nature Valley Protein Bar (Peanut Butter Dark Chocolate—14g carbs) along with a mug of warm FairLife milk (6g carbs). You can buy the bars in boxes of 5 at the grocery store or in the big boxes of 30 at Costco. I’ve been known to eat two bars, but usually one is enough and the addition of the warm milk extends the enjoyment time of the snack. A friend recently told me about FairLife milk which is ultra-filtered and has half the carbs and sugar of regular milk. I like it much better than almond milk and the impact on BG is minimal.

I know that periodically I am going to relapse from whatever temporary solution I have found and I try to forgive myself for those times. At the same time my slip-ups drive me crazy because my overnights are so much better when I don’t lose the evening munchie battle. My Dexcom CGM doesn’t alarm to lows in the early night hours followed by 2:00AM highs as the junk food digests. My fasting BG in the morning doesn’t randomly pingpong between low and high. A  reasonably-sized evening snack leads to a higher percentage of “good” overnight BG numbers with only minor low and high excursions. My fasting numbers tend to be more stable. I sleep better. I feel better.

Why can’t I do what I know is good for me and what makes me feel better???!!! That’s the million dollar question.

Carol, you described the anguish over our lack of perfection so well. After recently pouring your heart out to your endocrinologist for help, you wrote:

From eating the stupid chocolate I had to have. It is totally the opposite of who I am all day – so disciplined. I’ve asked the Endo for help with the chocolate — counseling for why I need comfort food when I know it’s bad for me? I asked her why I would be 90 after dinner and yet have to have chocolate that I know will spike me to 190?

You call it “Diabetes Distress” and that’s as good a name as any. I have no great advice for you, but I have a lot of understanding. I hope that the next time you beat yourself up over chocolate that you remember that you are not alone. There is no one with diabetes who has ever done it “right” all of the time. Food is a complicated issue as we have to eat to live. Food is our medicine for fighting lows and balancing blood sugars. Foods like chocolate are enjoyable and taste good. Food, especially food with sugar, is addictive. For me there is no doubt than none is easier than one. One cookie and one piece of chocolate don’t live in my world and moderation is often an elusive goal.

Diabetes can easily become a disease of disordered eating, but I think that our distress is not just the chocolate. It’s the relentless pressure of diabetes which is easier to picture as a pile of candy bars than the inner demon of inadequacy as we try to mimic a healthy pancreas.

Carol, it is easy for me to pat you on the head and say what a good job you are doing with your diabetes. Because you are. But it’s harder than that and we can’t pretend that it isn’t. I hope that you may find some answers through counseling. Meanwhile don’t forget to be kind to yourself and remember that you are not alone in your struggles or your successes. If you learn some inner mantras or even Stupid Pet Tricks to tackle the problem, please share. Until then, keep up the good fight.

Laddie

Countdown to Medicare with Type 1 Diabetes:  1 Month / Growing Old with T1D

Laddie_Head SquareI don’t have much to write about this month when it comes to Medicare. I am signed up for Medicare Part A and Part B. I have enrolled in a Supplemental Plan offered by BCBS of MN. I have selected an AARP Walgreen’s Part D drug plan. For better or worse I am ready to tackle Medicare on April 1.

Turning 65 years old and going on Medicare is a milestone in the progression of growing old. It is impossible for me to make this transition without thinking about growing old with Type 1 diabetes. Below you’ll find some of my thoughts.

The idea of “phases of aging” makes sense to me and I am moving into the “young-old” subgroup described in a Lumen Learning sociology course:

The United States’ older adult population can be divided into three life-stage subgroups: the young-old (approximately 65–74), the middle-old (ages 75–84), and the old-old (over age 85). Today’s young-old age group is generally happier, healthier, and financially better off than the young-old of previous generations.

As a young-old person who has lived with Type 1 diabetes for over 40 years, I am the most confident and empowered in relation to my diabetes than I have ever been. That is not going to change on April 1.

When I was diagnosed in 1976, I knew nothing about diabetes and had access to only a few books and magazines. Today the Internet has opened doors to scientific knowledge, professional recommendations, advocacy issues, and the cumulative knowledge of thecountdown-to-medicare-1-month Diabetes Online Community (DOC). Although I don’t blindly follow online diabetes advice and have never consumed okra water, I strongly believe that my fellow people with diabetes (PWD) have taught me almost everything I know about Type 1 and have motivated and empowered me to succeed. Continued learning about diabetes won’t go away just because I get a Medicare card.

I have lived a privileged diabetes life and have never worried about access to care. I understand that I will have a huge learning curve when it comes to getting supplies and medications under Medicare. I am not yet losing sleep over potential roadblocks although I know that it is naive to think that there won’t be any.

There is no doubt that improvements in both insulin formulations and technology have allowed me to reach age 65 in reasonably good health. I can’t envision what my health status would be (or if I would even still be alive) had I continued on my 1976 insulin regimen of one injection a day and no home BG monitoring. Insulin pumps and CGMs have exponentially increased the quality of my life. I can’t even begin to hypothesize on how and if Medicare will cover future diabetes tech such as artificial pancreas systems.

In some ways I am living with a different diabetes than at other stages of my life. Although hormones never completely disappear, they don’t rage as much for me anymore and are usually more predictable than when I was younger. In Figure 5-2 of Think Like a Pancreas, Gary Scheiner shows graphs of “typical basal insulin levels by age group.”

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The thick line is for ages 60 and older and shows a decrease in total basal insulin along with a sharper rise in insulin needs in the early morning hours. I am experiencing both of those changes and they didn’t make sense to me until I saw Gary’s chart. Most of my bolus ratios have remained the same so far.

Hypoglycemia unawareness is a mixed gift bag as I move into my senior years. On one hand, I feel better because I don’t get the sweats, shakiness, blurry vision, and insatiable hunger of my younger years. I also don’t tend to over-treat lows and multiple bowls of Frosted Flakes at 3:00am are a distant memory. At the same time I know that hypoglycemia is a huge problem for seniors with diabetes and my risks for falls, hospitalization, and permanent disability resulting from severe lows will increase. Knowing that Medicare will soon be covering CGMs for seniors is a huge relief, but I won’t consider it a done deal until I am approved under the not-yet-established CMS guidelines.

When I look at my diabetes, I am comfortable believing that I will be in control of my diabetes throughout my “young-old” years and hopefully well into my “middle-old” years. It is likely that I may require help with care at some point in my “old-old” years…. That terrifies me because I don’t trust anyone else to take care of my diabetes and my biggest fear of aging is losing independence.

Aging is a process. My life isn’t going to be much different on April 1 than it was on March 31. I’ll still have type 1 diabetes and will continue to test my blood and take insulin. I’ll still have arthritis and sometimes I worry more about that than diabetes. But one change that will happen is that I will finally start using the red, white, and blue Medicare card stashed in my wallet. Wish me luck.

A Review of the Tandem t:slim X2

Laddie_Head SquareI started using the Tandem t:slim X2 insulin pump on December 13 and this review is long overdue. After 2 months, I am mostly happy with the pump. I am comfortable navigating through the menus and have learned a few shortcuts. I like the touchscreen and the “modern” look of the pump. I like knowing that I will be able to add new features to my pump with software updates. At the same time I am annoyed with almost daily alerts about one thing or another. Most significantly, I am frustrated with occlusion alarms which I never experienced with previous pumps.

The Good Things

I like the touchscreen and being able to enter numbers for carbs and BG levels rather than scrolling up and down.

I like the looks and size of the X2.

I like the ability to turn off the screen to preserve battery life. I like the ability to go backwards through menus and tap the “T” to return to the home screen.

I like being able to fine tune settings. For example with Active Insulin Time, my early Medtronic pumps restricted changes to hours. 3 hours seemed too short; 4 hours seemed too long. Then with Animas, I could select 3-1/2 hours or 4 hours and neither seemed perfect. Now with Tandem, I am using 3-3/4 hours and could even select 3 hours and 39 minutes.

I like the ease of setting Site Reminders on my X2. This wasn’t a feature that I particularly missed on previous pumps, but now that I have it, I use it often.

I like that the reservoir icon remains red after I clear the customizable low reservoir alert.

I like that I can read the pump screen in bright sunlight when hiking. Sometimes I have to take off my sunglasses to read it, but it is much better than my Animas pump screens which were totally unreadable.

I like that Tandem has attempted to create a pump that is contemporary and has worked to creatively meet the needs of insulin users.

I like that I will be able to download software updates to add new features such as CGM integration to my X2 as they are released by Tandem. My fingers are crossed that these updates will be allowed under Medicare rules.

I really like this pump.

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The Annoying Things

I find filling the reservoir to be an overly complex and time-consuming process. It is like a “black hole” because I can’t see the insulin in the reservoir or troubleshoot air bubbles. I dislike that the icon on the home screen does not give me a more exact estimate for the number of remaining units of insulin. I can start with a syringe of 250 units and the pump registers 180+ units. After delivering 10 units of insulin (that’s half a day for me), it displays units of insulin rounding to the nearest 5 units. Below 40 units it begins to show specific units. I seem to “lose” more than the 45 (!) units that Tandem indicates as normal.

There are alerts which interrupt me on almost a daily basis. I use temp basals of “0” often for 30-60 minutes when I am moderately low and don’t want to eat. Unfortunately the X2 alerts 2 minutes later to indicate that my basal rate is less than half of my normal basal rate. Well, duh! That’s what I programmed. I suspect the alert is actually a result of a sensor, but IMO software should dismiss the alert if the basal change had been programmed.

I dislike the pigtail connection between the cartridge and the tubing. It tends to stick out and cause tubing to hang out of my clothes.

The t:clip vertical case that accompanies the X2 is bulky and poorly balanced. My guess is that it was designed by men who wear it on a belt. When I clip it to my waistband, the pump is top-heavy and leans forward resulting in an odd bulge in my clothing. If I bend over, it frequently falls off. Rumor is that a new case will be released soon.

Things to Which I am Indifferent

I have never wanted a rechargeable pump but it doesn’t bother me. The X2 charges quickly and does not require a proprietary charger. I can even charge it in my car. So it’s fine.

A lot of people like the way that basal and bolus settings are programmed together in blocks of time on the t:slim. So far I don’t find much benefit doing it that way but I don’t care.

The X2 holds 300 units of insulin. I was fine with 180-200 unit reservoirs, but it’s easy to fill the cartridge partway.

User Error Problems

Some of my issues with the X2 have been due to “user error” and are resolving as I become used to the differences between the X2 and my previous pumps.

The most common error that I make is not resuming insulin after filling the cannula on new infusion sets. I can’t quite remember how it was handled with Animas, but I never had the problem of not resuming insulin. With the X2 I have to wade through a couple of screens like “Stopping Fill” and “Test BG in 1-2 hours” before I get to the option of “Resume Insulin.” Many times I have returned the pump to my pocket before those extra screens. Thankfully I always get an alarm that the pump is not delivering insulin and can fix the problem. I am getting better at slowing down and not forgetting to resume insulin, but occasionally I still mess up.

Another annoyance is if I accidentally touch Bolus on the home screen (and this is easy to do) and don’t clear it, I will get an alert for an incomplete bolus although I haven’t entered any data. The alert will not clear until I go back into the pump, clear the alert, and back out of the bolus feature. Once again this is happening less often as I become more focused when handling the pump with an active screen and being sure to push the top button to turn off the display.

I used Animas pumps for the last 4 years and bolus insulin is infused quickly and immediately. Tandem pumps use a patented “Micro-Delivery” process and can take a couple of minutes to infuse a bolus. More than once I have pulled the same trick that used to mess me up with Medtronic pumps. I bolus for my breakfast while getting dressed. Forgetting that I programmed a bolus a minute ago, I unhook my pump to thread the tubing through the hole in my pocket or even to take a shower. Meanwhile insulin is dripping out and I have no way of knowing how much of my bolus I missed. Once again I am working hard to break this habit.

Occlusion Alarms – The Elephant in the Room

I have used an insulin pump since 2005, first Medtronic and then Animas. In all of that time I had at most 2 or 3 occlusion alarms. If you want to add “loss of prime” alerts on my Animas Ping, maybe you could add 5 more alarms. In 12 years I estimate that I had a problem with insulin delivery 7-8 times. Less than once a year. I cracked pump cases more times than I can count, but I never had a pump replaced because it did not deliver insulin.

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.fullsizeoutput_1c6b

Before I go any farther, I must admit that I do not change my cartridges every 3 days as recommended. (I do change infusion sets every 2-3 days.) My first occlusions happened when my cartridges had been in use for 8, 9, and 7 days. So I shortened my cartridge use and had occlusion alarms at cartridge ages of 2, 5, 7, and 1 day. I have only used one cartridge without an occlusion alarm. FYI my total daily insulin dose ranges from 13 units to 26 units and averages 18-20 units. I regularly used reservoirs for 8 days with both Medtronic and Animas and never had a problem.

I have been in contact with both people at Tandem and “experts” in the diabetes online community and have considered every suggestion. I have changed cartridges more frequently. I have used a Spibelt and a Flipbelt. I have used the awkward Tandem case because Tandem techs think it is a temperature issue. (I did learn that the case traps in heat and your insulin goes bad in about 5 days.) I have carried the pump in my pocket and worn it on my waistband. I am 100% convinced that my manually inserted Comfort Shorts (Silhouettes) are not the problem. The occlusion alarms have not correlated with site age and have randomly occurred at site ages of 1, 2, and 3 days. I have had no failed or kinked sites and have used these sets for 12 years with no issues. A Tandem tech assured me that the pigtail design of the cartridge/tubing is not at fault because an internal coil protects it from kinking.

Replacing the pump has not yet been requested by me or suggested by anyone at Tandem. I am currently wearing the pump on my waistband using a Nite Ize hip clip attached directly to the pump and I will see if I can make it 2 weeks without an occlusion alarm. (Thanks Sarah Sugabetic and Kerri Sparling.) My record is 13 days; so far I’m on Day 6.

One thing I must give kudos to Tandem on is that when I get an occlusion alarm during a bolus, it does let me know how much of the bolus was delivered so that I can reprogram the rest after clearing the alarm.

Everyone at Tandem has been respectful and concerned. I sit here in the middle of this experience wondering “What separates the many people who never have occlusion alarms from those of us who are plagued with them?” For me these alarms are #FakeNews and #AlternativeFacts and not once have I seen a kink in my tubing or needed to change out an infusion set or cartridge to resolve the issue.

Conclusion

I like my X2 and do not regret the purchase. I wrote extensively about why I chose this pump and I would not make a different decision today.

At the same time I am conflicted about wholeheartedly recommending this pump to others. How can I recommend a pump that averages a once-a-week stoppage of insulin for seemingly no reason? I admit that I don’t follow all of the rules, but in general I am a conscientious PWD and am doing nothing differently than I did with Medtronic and Animas. Because I have always heard the occlusion alarms, I have been able to restart insulin delivery immediately and have suffered no ill effects from these events.

I delayed writing this pump review because of the occlusion alarms. My hope has been that every “fix” would resolve the issue and I could write a glowingly positive review of the X2. I want to love this pump and I want Tandem to grow and be a successful pump company. As I said before, I really like this pump.

Maybe the hip clip will be the solution.

If not, I will probably argue for a replacement pump as the next step. At this point I am confident that I will not be abandoned by Tandem.

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Please note that this review only reflects my personal experiences. Many users do not experience occlusion alarms with the t:slim X2. Others had these problems with other brands of pumps and don’t with Tandem. Be sure to talk with your medical team, contact a Tandem representative, and read as many reviews as possible if you are in the market for a new insulin pump.