Diabetes Supplies under Medicare: Hard Work

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So FU Diabetes and Medicare and Dexcom and CCS.

I’ll deal with you next week.

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

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

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

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

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

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

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

The Good Stories

These are the people we want to be.

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

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

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

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

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

The Grouchy Stories

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

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

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

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

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

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

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

Helpful Advice

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

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

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

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

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

Other Information

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

My Personal Rant

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

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

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

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

I don’t like to be crabby.

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To Order a Medicare Dexcom G5 in an Ideal World

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

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

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

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

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

Voila!

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

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Links

Latest Dexcom Medicare Update

Preliminary Dexcom Online Contact

Info Sheet for Providers

Dexcom Provider FAQ’s

Ed Tepper: Fighting Against Dexcom Medicare Restrictions

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

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

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

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

Ed’s Presentation:

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

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

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

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

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

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

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

Medicare Prohibits the Use of Available FDA Approved Technology

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

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

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

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

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

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

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

For example:

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

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

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

CGM’s Can Reduce Overall Costs.

The Economic Cost of Diabetes is Staggering and Growing.

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

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

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

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

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

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

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

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

HERE’S THE ASK:

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

Feel Good Stories about Medicare CGM Coverage

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

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

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

Here are some stories.

Carol W

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

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

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

Nolan

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

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

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

Carol G

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

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

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

Lloyd, Kathy, and Sharon

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

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

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

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

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

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

Summary

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

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

Whole30 or Almost?

I am a firm believer that food choices make a huge difference in making diabetes easier to manage. I personally cannot eat lots of carb-yummy foods along with bucketfuls of insulin and expect anything other than roller coaster blood sugars. I am not good at moderation and usually do better with none rather than one. I can’t stop at a single potato chip or one chocolate chip cookie. In general I eat a diet that would be categorized as moderately-low carb. I do okay most of the time and then drift into patterns where I’m eating foods that trash my blood sugars. Most of my over-snacking with big boluses is in the evenings and I end up with lows at bedtime followed by 2:00AM spikes. Multiple Dexcom alarms destroy my sleep and blood sugars rebel well into the next day. Before- and after-dinner glasses of wine magnify the blood sugar swings and sabotage any semblance of willpower.

Occasionally I need a total reset to break the pattern. For the most part I don’t do diets with names and I have never followed the South Beach Diet or gone Paleo, Keto, Bernstein or Mediterranean. Last spring I decided to investigate the Whole30. The only reason I knew about the plan was that Kelley of Below Seven had blogged about her successful Whole30 experience in February and March of 2017.

The Whole30 describes itself as “a short-term nutrition reset, designed to help you put an end to unhealthy cravings and habits, restore a healthy metabolism, heal your digestive tract, and balance your immune system.” I bought the book in May and dove in headfirst. In general I hate to cook but tried a bunch of the recipes in the book. My husband was patient with the whole experience and we quickly agreed that we mostly like meat, fish, vegetables, and fruit with few spices or add-ons. The Whole30 is a do-or-die plan where sugar, grains, dairy, and all sorts of food are forbidden. Interestingly potatoes are allowed and after rarely eating them for several years, they were a treat. I was quickly amazed at how much fruit I could eat with minimal blood sugar disruption. Absolutely forbidden were diet soda and alcohol. I technically flunked the plan on Day 10 when I put lemon pepper on my chicken without knowing that it contained sugar. Unwilling to go back to Day 1 as the plan requires, I continued towards Day 30 as an imposter with lemon pepper on my conscience.

All of a sudden on Day 25 I didn’t care anymore. My first sin was Diet Coke and a wonderful carbonation buzz. The second was a glass of red wine. Surprisingly the food restrictions of the plan didn’t bother me much. I had few sugar cravings and my most-missed foods were string cheese and peanuts. I felt little guilt about quitting so close to the finish line because I lacked the conviction that Day 30 was going to change my life.

Fast forward to October. After a mostly-okay summer, I was again mired in bad habits. Too much diet soda, too much alcohol, too many snacks. I hit bottom two weeks ago when my husband was out of town and I determined that three old-fashioned donuts (two chocolate-covered and one sour cream) would be an acceptable dinner. You can imagine how well that carbohydrate binge went. Despite massive doses of insulin, my blood sugar soared and crashed all night long.

I started the Whole30 again the next morning. The first day was rough as my blood sugars relived the last 24 hours. Since then it has been smooth sailing. The food part of this diet continues to be easy for me since I really like vegetables, fruit, nuts, meat, and eggs and it is not intended to be a forever-diet. I have made my two favorite recipes from the Whole30

Spinach Frittata Whole30

cookbook—Spinach Frittata and Classic Chili—more than once along with basic dinners of meat, vegetables, and potatoes. Mixed nuts and honeycrisp apples have worked great for snacks and bananas, grapes, and juice have combatted the occasional lows. I am not missing Diet Coke which is kind of a miracle.

Am I cheating? Yes, but within the ground rules that I established at the beginning of the diet. I use glucose tabs for lows when away from home and obviously they are a big no-no. But they are convenient and “medicinal.” I am also allowing things like lemon pepper and soy sauce which are forbidden. Other than that, I am toeing the line.

Will I make it 30 days? Probably not and that is not my immediate goal. I have an endocrinologist appointment tomorrow and that was my original target end date. Unfortunately the donut bender will show up as Day 1 of my 14-day CGM tracings. Other than that, my BG numbers have been good. If I don’t indulge in a post-endo Diet Coke reward, I might keep going for another week or two. Maybe all the way to Day 30….

Is there anything magical about the Whole30? Probably not. It is one of many diets with a rigid no-cheat framework that can help people break bad habits in the short run while providing motivation for the future. It is probably an oversell that it claims to change your life in 30 days. At the same time both of my “almost Whole30” experiences have been successful in steering me back to healthy eating and better diabetes numbers.

If you have interest in trying the Whole30 plan, you can explore the website and probably learn everything you need to know. I bought the book at Amazon and haven’t regretted having it for reference and recipes. You should read Kelley’s series of blogposts at Below Seven because she details what she cooked, how she felt, and how it affected her diabetes. And unlike me she made it 30 days without breaking the rules!

A final question which I don’t address today is: If following a plan like the Whole30 makes diabetes easier and allows me to almost flatline my blood sugars, why don’t I eat like this most of the time? Good question.

Tandem t:slim X2:  Experiments with Clips and Cases

In early August I wrote a review of the newly-released Tandem t:case. My views of the case were mostly favorable but I wrote one sentence that was more significant than I knew at the time: “IMO the clip is slightly too short when wearing the pump vertically and is not as tight on my waistband as I would like.”

A month after the Dexcom G5 software update for my X2 pump, I revisited the case issue and wrote: “Wearing the pump on my waistband has brought back the problem that the clip on the new case is neither tight enough nor long enough to keep the pump secure in the vertical position. Over two days it fell off 5 or 6 times.” I followed that statement with one case hack that failed and one clip option that was successful. I promised to experiment more and share the results in a later post. So here we go.

Three Successful Hacks

Success #1:  Knowing that Velcro is my hack solution, I applied a square of Velcro (hook side) to the back of my pink t:case. In one week of use, the pump did not fall off once. There was a little tugging and scratching of the Velcro as I slid it onto my pants, but it was a solid and reliable solution. The pump mostly stayed vertical but was easy to rotate when I wanted to see the pump screen.

Success #2:  I considered that the scratchiness of the Velcro might cause damage to the front of my pants. (Actually I don’t care because I always have a shirt or sweater covering my waist, but you might.) So my next experiment was to attach Velcro to the inside curve of the clip which would only come in contact with the inside of my slacks. This amazingly worked great and once again the pump did not fall off during the weeklong experiment.

Success #3:  In my September post I mentioned that I was using the Nite Ize Hip Clip attached directly to my pump. I removed the clip in order to do the case experiments described in this post. (To remove the clip, I carefully used an X-Acto knife to cut through the adhesive and peeled off as much of the tape as possible. Then I used a tiny bit of adhesive remover to get the last bit.)

After all of my experiments, I decided that the t:case added unnecessary weight to my pump and I went back to the hip clip applied directly to the pump. As before I had a small piece of Velcro (hook side) on the inside of the clip. Although the pump has never fallen off with this solution, it did spin more than I liked. So I added another piece of Velcro—the loop side this time. Just so you know, the Velcro FAQ calls this side “the softer mate.” Almost pornographic, isn’t it?  This provides enough friction (Stop the pornography!!!) to stop most of the tilting but is still easy to turn when I want to look at the screen.

BTW if you decide to apply a clip to your pump, be careful not to cover the vent holes. To give credit where due, I learned about the Nite Ize Hip Clip several years ago from Kerri at Six Until Me and Sarah at Sugabetic.

The Failures

Failure #1:  In my September post, I indicated that I had tried attaching a piece of Velcro to the curved tip of the clip. The Velcro solved the pump-falling-off problem but unfortunately made it difficult to slide the pump onto my waistband. Ultimately I broke the case by trying to open the clip wide enough to pull onto my pants. A definite user error and because I was given this case for free, I did not try to get a warranty replacement.

Failure #2:  To repair the broken case, my next hack was to attach a Nite Ize Clip directly to the case. It was a previously-used clip and I purchased 3M Scotch Outdoor Mounting tape to attach it to the case. I used a piece of Velcro on the interior of the clip as described above in Success #3. The 3M tape is guaranteed to hold 15 pounds and the clip stayed attached to the case with no problems. The issue was that like the Tandem clip, this clip was not tight enough to keep the pump on my waistband. The Velcro pad was not successful in dealing with the combined weight of the pump and case.

Summary:

I am currently using a Nite Ize clip applied directly to my pump. Two pieces of Velcro keep it secure on my waistband. Before the Dexcom G5 integration, I was content with the pump in my pocket and I used a case which seemingly prevented false occlusion alarms. Now I am wearing the pump on my waistband most of the time because of the convenience of seeing my Dexcom G5 info when I bolus. I have not had any occlusion alarms and I will keep my fingers crossed that they don’t reappear.

If I had to pick my favorite pump clip ever, I would pick the Animas clip which attached directly to the pump and was super tight. Tandem pumps are designed differently and the Animas clip layout wouldn’t work. At the same time I would argue that Tandem could have designed a clip that would keep a t:cased pump secure on users’ waistbands. But they didn’t. So know that Velcro is your friend and don’t be afraid to experiment. If you find a great solution, please share.

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Please note that I have not damaged my pump, clips, or cases (except the one I broke!) with these hacks. I suspect that you won’t have damage either, but I can’t guarantee it. So hack at your own risk.

Talking Types with Lloyd Mann

I first met Lloyd Mann four or five years ago at a Saturday diabetes meet-up at a local Panera Bread. He was sitting at the end of the table with a big smile, an iPad, and a copy of his book about diabetes. He was discussing the possibility of being tested for MODY because of insulin signaling problems. A resident of South Dakota at that point, Lloyd was in Minnesota visiting family and had previously hooked up with this group through online friend Scott Johnson.

Fast forward a couple of years and Lloyd now lives in the town next to me. We have begun to supplement the every-couple-of-months group meetings with one-on-one lunches at the Panera Bread near his home. Yes, our relationship is built on Lloyd’s love of tomato soup and “Scott Johnson-esque” grilled cheese sandwiches along with endless cups of Diet Pepsi (definitely not Scott-inspired but Panera doesn’t carry Diet Coke).

Lloyd and I are close in age. In diabetes we are simultaneously far apart and eerily close. Lloyd has Type 2 diabetes and I have Type 1 diabetes. In most ways we are stereotypical depictions of our diabetes types. I was diagnosed with diabetes as a young adult in the mid-1970’s. I was hospitalized in an unquenchable-thirst skeletal state with high blood sugars and large ketones and have never had a day since then without injected insulin. Lloyd was diagnosed with Type 2 diabetes in 1994, took pills for many years, and then started insulin 11 years later. Lloyd’s insulin resistance is off the charts and on a daily basis he uses over 10 times as much insulin as I do. His story personifies the fact that Type 2 diabetes is a progressive disease.

So here you have two Medicare people with diabetes. Lloyd uses a Medtronic 723 pump and changes his 300-unit reservoir every day. When his warranty expires in January, he plans to move to a Tandem t:slim X2 pump and continue to change his cartridge every day. He likes the t:slim platform because unlike his Medtronic pump, it allows him to program a bolus larger than 25 units. I use a Tandem t:slim X2 pump. I change my cartridge once a week and rarely bolus more than 2 units at a time. Because Medicare CGM coverage does not exclude people with Type 2, Lloyd is in the process of obtaining a Dexcom G5 CGM. I use a Dexcom G5 CGM. Currently neither of us is using sensors provided by Medicare and we both wear an Apple Watch and carry iPhones. Lloyd and I are technology twins.

Lloyd and I are students of diabetes. Yeah, we are “Know-It-Alls.” You may like us. You may find us annoying. But we don’t care. We know our stuff and we want to learn more.

I recently asked Lloyd if I could interview him and we met at Panera two weeks ago. I did not record our talk so Lloyd’s answers are in my words with scattered quotations. I also throw in an occasional comment.

Lloyd, I know that your diagnosis story is in your book but please give me a short timeline. I was diagnosed with thyroid disease in 1980. Fourteen years later at age 44 I was diagnosed with Type 2 diabetes. What was your reaction was to the diagnosis?  I just thought “Oh no, one more pill to take!” Do you have a family history of Type 2 diabetes?  Both of my sisters have Type 2 but neither of my parents did.

How long have you had diabetes?  23 years.

How long have you been on insulin?  12 years since 2005.

How long have you been on a pump?  Since 2005. Less than one year after starting insulin, I convinced my doctor to order me a pump. I had used Lantus followed by a mixed insulin and wasn’t having good results. I did my homework and presented my doctor with a list detailing why the Deltec Cozmo was the best fit for me. Rather than specify Type 1 or Type 2 in the letter of medical necessity, he just put “Insulin Dependent” and I was immediately approved for pump therapy.

You indicated that you will be purchasing a new insulin pump in January. What features are important to you as you make that decision?  I need a pump with multiple basal rates. I currently use 8 different rates and my highest hourly rate at 3:00AM is 5 times as high as my lowest rate. Because of high insulin requirements, I require a 300-unit or larger reservoir and the option of taking boluses bigger than 25 units. I also need to be able to set an insulin sensitivity factor of less than 1 unit per 10 points. (As someone with Type 1 who is very sensitive to insulin, I want to put multiple exclamation marks after each of those numbers!)

I am planning to order a Tandem t:slim X2 to replace my current Medtronic pump. Although the  t:flex has a larger reservoir, I prefer the upgrade features, Bluetooth, and CGM capabilities of the X2. I am used to changing my reservoir every day and will continue with that practice. I expect that my total daily dose of insulin will go down using the X2.

Tell me about your decision to order a Dexcom G5 CGM. How do you think it will help you? I plan to use the G5 to help reset basal rates. Although I use more insulin now, the basal patterns are the same as I figured out using the Abbott Navigator over 6 years ago. I rarely get lows (insert another exclamation mark here!) but need a CGM for highs. I have always been forgetful and that is increasing with age. My  insulin mistakes are almost all related to forgetting to bolus and the CGM will alarm when I forget and my BG soars. I’ve been working with Dexcom since earlier in the summer and I am “waiting as fast as I can” for the arrival of my G5.

So Lloyd, what do you think of the Medicare ban on smartphone use with our G5’s?  “You can’t print that.”

What year was your book published and why did you write it?  Successful Diabetes Management was published in 2011 and I wrote it because I was doing well managing my diabetes and wanted to help others. I chose the cover from Amazon’s stock photos and the image spoke to me as “Follow the Path” to good diabetes management.

I had also been one of the many people at Diabetes Daily who knew Richard Vaughn and goaded him to write his book published in 2010–Beating the Odds, 64 Years of Diabetes Health. After Richard’s book was published, he contacted me and said “Your turn, Lloyd”.

Lloyd continues his mission to help others with Type 2 diabetes and his Diabetes Daily forum sticky note titled Type 2 in a Nutshell has over 16,000 views. He was previously a moderator at Diabetes Daily.

As we consider Type 1 and Type 2, Lloyd, how do you think our diabetes lives are similar?  Our daily tasks are the same. We count carbs, we bolus, we deal with highs and lows, we test BG, we change pump sites. And most importantly, we live with fear of complications.

How are our diabetes lives different?  My lows are not nearly as debilitating as yours and my risk of DKA is about 1/20th of yours. I think that people with T1 can eat a bigger variety of foods than a T2 aiming for tight control because they process food more normally and insulin works better. (Like many people with Type 2, Lloyd’s weight issues are intensified by high insulin use.)

What is the hardest part of diabetes for you?  “It’s forever” and “knowing what to do and doing it are two different things.”

What are your thoughts on Type 1 versus Type 2 diabetes?  I think that the naming of Type 1 and Type 2 leaves a lot to be desired. Type 1 and Type 2 are based on how you got to where you are but they don’t always address where you are. Type 2’s need to restrict carbs more than Type 1’s and we also have a problem with our livers. Metformin addresses that and I am still taking it after 23 years of diabetes. I think that my diabetes is more predictable than yours.

As this stage of your diabetes career, do you identify more with people with Type 1 or those with Type 2?  My day-to-day life is like a Type 1. My medical team thinks that I have completely quit producing insulin and that is unusual for Type 2. I have more in common with T1’s than with T2’s on pills.

Conclusion:  I asked Lloyd if he had any questions for me and he wanted my opinions on hiking and exercising. We talked about lows and he indicated that he used to get lows on older Type 2 medications and when he used to walk a lot. But he has rarely gotten lows since moving to insulin 12 years ago. Sometimes I think that my Type 1 diabetes is most defined by 40 years of lows: while driving, while taking care of my children, while mowing the lawn, while wandering lost at the mall, while peering up at concerned policemen and paramedics. Even with improved CGM technology which now mostly protects me from severe lows, my treatment decisions are always influenced by the possibility of lows and I might argue that’s the biggest difference between Lloyd and me.

Do lows make me have the “bad” kind of diabetes compared to him? No, because lows mean that my insulin is working. I can’t imagine the frustration that Lloyd must feel when oral medications in addition to hundreds of units of insulin daily are required to tame his blood sugar. Metabolic syndrome and insulin resistance are powerful opponents and I kind of wonder if my life is easier.

When I look at the differences between the types of diabetes, I mostly end up in the “I don’t know” and “I don’t care” camp. I don’t want to fight about labels, blame, stigma, cost, and who’s got it worse. I just want and need the appropriate care for my diabetes and I think that Lloyd would say the same thing. Diagnose me correctly and treat me correctly. That’s not asking too much.

In summary, I would say that the most fitting end to this blogpost is that no matter how you look at it, Lloyd Mann and I are just friends who both happen to have diabetes. Types don’t matter.

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

Last Wednesday I received my email from Tandem with the upgrade code to add Dexcom G5 integration to my pump. A great feature of the t:slim X2 is the ability to perform software updates at home rather than need a hardware replacement every time new capabilities are added to the pump. This first X2 software update adds Dexcom G5 receiver functions to the pump in anticipation of future updates adding threshold suspend and other insulin dosing algorithms. Tandem has a catchy slogan for the X2: “The pump that gets updated, not outdated.”

My Upgrade Experience

I followed the instructions for the upgrade and for the most part, it went well. I had one glitch where an error code indicated that my pump was communicating with another device. I restarted the upgrade and everything went fine. I had not been using my Dexcom receiver and I was assured by other X2 users on Facebook that I could leave the G5 app running on my iPhone and Apple Watch. (Note: the Dexcom G5 transmitter can only communicate with one receiver and one smart device. You cannot use the X2 and the G5 receiver at the same time.)

For the first hour I received an unbroken every-5 minute tracing of my Dexcom readings. After that it went haywire and I got only 2 readings in the next hour. I continued to get multiple Out of Range alerts as the day went on.

When you use a tubed pump, your pump is never far away from your CGM transmitter. My Tandem pump was in a pocket. My Dexcom transmitter was on my arm. My iPhone was on the table, in a pocket, in the kitchen, in my purse and not missing a dot. The pump was struggling with 12 inches.

I called Tandem twice over the next couple of hours and with a little troubleshooting it was apparent that I shouldn’t be having such problems. As always, the Tandem reps were helpful and the second rep indicated that many similar problems had been solved by a new transmitter. My current transmitter has been in use for a month and seemingly fine, but I wasn’t going to argue with trying a new transmitter.

I received the new transmitter on Saturday and will begin using it with my next sensor.

Meanwhile I have begun to get better communication with my Dex sensor, but it is not because the pump is better at picking up the signal. It is because I am making changes. I initially kept my pump in my left front pocket with the sensor on my right arm. I am now wearing the pump clipped to my waistband on the right side. I still lose signal when I sit in my normal “easy chair” and my arm is against the back cushion. (My phone does not lose signal in this scenario.) But I am getting better at moving to the right side of the chair and keeping my arm on the armrest so that the transmitter is not obstructed. I prefer my pump in my pocket, but I can get used to the waistband.

Basically I am being flexible to make things work.

Pump Case

Somehow every change I make impacts something else. Wearing the pump on my waistband has brought back the problem that the clip on the new case is neither tight enough nor long enough to keep the pump secure in the vertical position. Over two days it fell off 5 or 6 times and was saved from hitting the floor only by yanking on my infusion set. Miraculously the infusion set never ripped off. I decided to do a hack of adding a piece of Velcro to the tip of the clip. Bad hack. The Velcro made it difficult to slide the pump onto my waistband. Ultimately I broke the clip off the case by trying to open it wide to pull onto my pants. Definitely user error and because I was given the case for free, I will eventually just order another one.

Second hack. I am back to using a Nite Ize Hip Clip that is attached directly to the pump. When I used this clip a few months back, it also tended to fall off my waistband but not as badly as the Tandem case. This time I put a small piece of Velcro on the pump side of the clip and it hasn’t fallen off once. Of course so far it is only a 3-day experiment.

I am not done yet with figuring out a case hack and think it will involve a Nite Ize clip attached to the Tandem case and a small piece of Velcro. Or maybe just Velcro attached to the case using the Tandem clip. Although the Hip Clip attached directly to the pump is working OK, I prefer the protection of a case. My false occlusion alarms were eliminated by using a case and I am hesitant to go without one. I’ll definitely write another blogpost once I decide on an ultimate fix.

Summary

I like having my G5 information on my pump and I will continue to be as flexible as possible to make it work. Although there is some frustration that my relationship with the X2 is a bit temperamental—first due to occlusion alarms and now to CGM reception—I am still very happy with the pump. In general if I go back and look at the  various pumps and CGMs that I have used since 2005, they have all required me to learn, change, and be flexible to ensure success.

Medicare?

Now I get to the nitty-gritty of this newest update. What are the Medicare repercussions??? I’m flexible, but I can’t say the same thing for Medicare.

I have discussed more than once the stupidity of the Medicare ban on smartphone use for Dexcom G5 users. I’m not going there today. However, I have been hoping that because the Tandem X2 is durable medical equipment (DME) and not a smartphone that I will be able to use it as my CGM receiver instead of the Dexcom receiver.

When I read the Noridian Medicare coding and coverage document released in March, I do not believe that the X2 violates the guidelines:

“Coverage of the CGM system supply allowance is limited to those therapeutic CGM systems where the beneficiary ONLY uses a receiver classified as DME to display glucose data.  If a beneficiary uses a non-DME device (smart phone, tablet, etc.) as the display device, either separately or in combination with a receiver classified as DME, the supply allowance is non-covered by Medicare.”

Unfortunately I have heard from several sources that Dexcom is instructing Medicare customers that current Medicare instructions mandate use of the Dexcom receiver. I suppose justification for that comes from the first sentence of the Noridian document: “The Dexcom G5® Mobile CGM System is currently the only FDA-approved device with a “non-adjunctive” indication.” Although my Tandem pump works with the G5 Mobile CGM System, it is technically not part of the system according to Medicare. Some Tandem pumpers have also been told by Tandem that the X2 is currently not approved by Medicare to be used as a Dexcom G5 receiver.

I continue to be optimistic that Medicare regulations regarding the Dexcom G5 will be changed to allow use of a smartphone and use of the Tandem X2. I have no predictions for a timetable for those changes. In the short run I am still using Dexcom supplies purchased before Medicare and continue to use my iPhone, Apple Watch, and Tandem X2 pump. In the long run I will follow Medicare regulations because CGM coverage is too valuable to risk losing that coverage.

As always with diabetes, I will be flexible.

 

Arthritis on a Diabetes Blog

When it comes to living with both Type 1 diabetes and arthritis, I don’t experience the amount of pain and disability that burdens some of my favorite people in the DOC. Rick Phillips who deals with rheumatoid arthritis and ankylosing spondylitis shared his story on my blog a couple of years ago. Rick tirelessly advocates for people with diabetes, but he often admits that arthritis negatively impacts his life much more than diabetes. Molly Schreiber has had Type 1 diabetes for 28 years. Her rheumatoid arthritis is a formidable opponent and she deals with the worst that RA can dish out. In general I am doing okay when it comes to living with arthritis. Except when I’m not….

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I am good at diabetes.

I am bad at arthritis.

I have had a tough summer. Although I was diagnosed diagnosed with inflammatory spondyloarthropathy over 10 years ago, my problems are peripheral. My hands hurt and my thumb joints are shot. In May I woke up with horrible heel and foot pain which continues to get worse despite following doctor’s orders.

I don’t write about arthritis very often because I am a diabetes blogger. Type 1 diabetes is a constant in my life and I do little without taking diabetes into account. After 40+ years of T1, I have no major D-complications. At the same time diabetes is a “needy condition” that requires constant affirmation and is entrenched in my psyche. More than once I have mentioned that I deal with other inflammatory and autoimmune conditions in addition to diabetes. I once wrote about a skin problem called annulare granuloma and mentioned that I felt helpless in dealing with it because “When you have Type 1 diabetes, you get used to the idea that WHAT I DO MAKES A DIFFERENCE in my health.” I’ve never bothered writing about hypothyroidism because it goes hand-in-hand with T1 diabetes. Mine was discovered through a routine blood test 21 years ago. I’ve never struggled with symptoms and my Synthroid-generic dose is the same as prescribed in 1996.

Arthritis. This is the thing that I’ve not written about and it is the health problem that most threatens my Pollyanna “Life is great!” philosophy.

I think that some of the personality traits that make me “good” at diabetes make me bad at arthritis. Diabetes loves people who overdo things and power through when you don’t feel great. Diabetes thrives on doing the same thing over and over again. Arthritis does not reward overuse of my body and I know that I would feel better if I didn’t sync as many steps on my Fitbit. (Actually I put my Fitbit in the drawer a few weeks ago because I need to rest.) I know that I would feel better if I gave up playing golf. I quit tennis a dozen years ago and still feel sad about that. I don’t know about hiking, but I suspect that I would do better with fewer mountains and more walks around the block.

It all comes down to pain.

Unfortunately sitting at home doing nothing is worse than pain and diabetes is a bear when your body is glued to a chair. I have always been active and I attribute my relatively good health to exercise. Blood sugars are better with movement and I believe that exercise helps ward off D-complications such as heart disease and neuropathy. Transitioning to a couch potato life because of sore feet and swollen fingers doesn’t seem like an optimal life strategy to me.

But exercise currently brings me pain.

I am strong but pain makes me sad.

My primary arthritis diagnosis is inflammatory spondyloarthropathy and it is a type of arthritis where many people feel better moving rather than resting. It is a type of arthritis that fits my “can’t stand to sit down” personality. But my hands and feet are diagnosed as osteoarthritis. I’m struggling with achilles tendonosis, heel pain, and elbow tendonitis. Overuse “old people” conditions.

Back to diabetes. What happens to my blood sugars when I am not active? Mostly they get worse. But I can take more insulin and then they are OK. But I gain weight and my insulin sensitivity goes to h*ll.

I am a self-manager of my diabetes and my endocrinologist is totally mostly on board with that. Diabetes usually does best when you manage it in the moment (AKA Sugar Surfing) and my Dexcom G5 protects me from most of the submarine lows that drive my endo crazy. My rheumatologist has never gone ballistic at my decision-making, but he occasionally looks askance when I arrive at an appointment and say that I reduced the dosage of one medication and refused to take another. At the same time he is older than I am and still plays tennis. He goads me to get back to the courts and suggests that I wear an arm strap to help with elbow tendonitis and use more of the topical Diclofenac gel to ease pain. More than any of my other doctors he understands how my medical issues are woven together in a spiderweb of autoimmune and inflammatory conditions.

I am an uber-educated diabetes patient. I understand my disease and voraciously read diabetes research articles, websites, blogs, and message boards. I am an active participant in the DOC and credit my fellow PWD’s for most of my knowledge and activism. I arrive at my endocrinology appointments with printouts of BG statistics and always have a list of pertinent questions.

I am less capable when it comes to my arthritis. To tell you the truth, I am not completely sure of my diagnosis. I do not have rheumatoid arthritis (RA) and once you don’t have that, it can be hard to find a niche for your condition. My medical records reflect terms such as inflammatory spodyloarthropathy, inflammatory polyarthritis, and osteoarthritis.

When I look at the future, I am much more afraid of physical limitations due to arthritis than I am of diabetes. I don’t worry about diabetes complications and have never experienced diabetes burnout for more than five minutes. But what will I do if walking is unbearably painful, elbow pain blocks me from playing golf and carrying my grandchildren, and hand pain rules out opening a jar?

I am good at diabetes.

Unfortunately arthritis scares the bejesus out of me.

Pain is a formidable opponent.

Pain.

* The image for the pain measurement scale was purchased from shutterstock.com.

Medicare and CGM Coverage: Swirling Emotions

If you’ve been following the saga of Medicare coverage for the Dexcom G5 CGM, you know that Medicare beneficiaries will be forced to use the Dexcom receiver while being absolutely forbidden from using smartphones and the G5 and Follow apps. Coding and Coverage information released by Noridian Medicare in March 2017 clearly states this Medicare policy:

“Coverage of the CGM system supply allowance is limited to those therapeutic CGM systems where the beneficiary ONLY uses a receiver classified as DME to display glucose data.  If a beneficiary uses a non-DME device (smart phone, tablet, etc.) as the display device, either separately or in combination with a receiver classified as DME, the supply allowance is non-covered by Medicare.”

Few people in the diabetes community think that this makes sense, but for now it is the rule. Most of us on Medicare are grateful for the thousands of dollars we will save annually by having our Dexcom G5’s reimbursed, but emotions are swirling. JOY for coverage. ANGER at the restrictions. ANTICIPATION that sensors will be shipped soon. DISGUST that seniors are being treated differently. FEAR that no longer can our caretakers track our numbers in real time. SADNESS that we are losing access to our phones and watches. TRUST that this policy will change.

Lately I have been waking up in the middle of the night and stewing about being forced to abandon my smartphone and Apple Watch as Dexcom receivers. I worry about whether I will be able to integrate my G5 into my t:slim X2 insulin pump once the the Tandem software is approved. In the light of day I try to sort through my feelings knowing that I shouldn’t lose sleep over this. Mostly I feel frustration because it is a stupid ruling that I have little recourse to challenge. There is sadness because I really like my having CGM number on my watch. There is the sense of loss taking away something that I once had. And not to be ignored is the spoiled-child syndrome that “I want what I want when I want it!” and it’s unfair that others have it and I can’t.

For the most part anger about this situation is not one of my emotions, but others are frustrated, furious, and ready to do battle. A couple of quotes from Facebook:

“This is a ridiculous and ageist policy and I have said it many times. It’s not right.”

“I find it abhorrent that Dexcom G5 is MEANT to be used with smart technology and ANYONE not on MEDICARE has this option.”

“There is no way I can sign that form. It’s aggressive and hostile and incredibly ageist.”

Another emotion I do not have is fear. I currently neither use the Share app nor need someone alerted to my highs and lows. But others are dependent on a caretaker monitoring their BG levels and their safety is jeopardized with the denial of cell phone use.  Some Medicare recipients have disabilities such as low vision that make the larger screens and adaptability features of smartphones a better choice than the small screen of a Dexcom receiver.

“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.”

“Share has saved my life a couple of times on the G4 when I was mowing grass and didn’t hear the Dexcom alarm, but I did hear my phone when my wife called.”

“I don’t feel my Lows and my guy gets the alarm on his phone….This is a *safety issue* in my opinion. If we were totally able to feel things and get through without the chance of conking out we wouldn’t even need the darn CGM.”

“I have retinopathy of prematurity and have always had bad vision. Seeing my Dexcom readings on the iPhone is much easier than on a small receiver.”

My Thoughts and Things to Remember:

When my reasonable brain takes control, I know that I will survive using my Dexcom receiver. That is all I had for the first seven years of my nine years using a CGM.

I don’t have medical reasons that my iPhone and Apple Watch are better than my receiver. In fact I prefer dismissing alerts on the receiver because I can just push the button and not even look at the number! BTW that is a bad thing…. On the phone, I need to scan my fingerprint, tap on the alert, and go to the Dex app to dismiss it. I will miss automatic syncing of my G5 numbers to Dexcom Clarity, Tidepool, mySugr, and other apps, but I will survive.

My blog was started in the spring of 2013 and quickly became known for advocacy for Medicare Coverage of CGM’s. If at any point we had been offered the possibility of CGM reimbursement contingent on no smartphone use, we would have jumped at the chance. What we’ve got now is not perfect but it is thousands of dollars per year better than nothing.

Right now I think a lot of my stress comes from just not knowing what is going on. Through the early months of working out the logistics of Medicare, Dexcom did not do a good job of communicating with seniors. Some people were getting email updates. Others of us called Dexcom numerous times to be put on “The List” and never received any information. Seniors are still being told different things by different representatives from Dexcom, DME suppliers, pump companies, and medical professionals. Fortunately there is now some information on the Dexcom website but it does not answer all of my questions. I will definitely have an easier time coping once I know the rules of the game along with hardware and software modifications.

For the most part I am resigned to the Medicare restrictions and am working to accept them. In the short run I think we need to get Medicare reimbursement established before fighting the smartphone ban. Others disagree with me and are making calls, writing letters, starting petitions, and even hiring lawyers. And that is good because although patience is sometimes the best strategy, other times anger and in-your-face advocacy are the only way to force change.

Right now I know that whatever the policy ends up being, I will adapt. I haven’t used a receiver in years, but I’ll get used to it again. I can’t live in fighting mode all of the time and right now need to find acceptance. Although I know that I will eventually take my place on the battlefield fighting Medicare CGM policies, at the moment I am choosing to let things take their course and trust that Dexcom and JDRF will get this changed. At the same time I am cheering on those actively opposing Medicare. One online friend sums up my views perfectly:

“A year or two ago we were all writing letters to our Congressmen to get on board with a bill to have Medicare pay for the Dexcom. Now that is is approved, I’ve decided to let go of any anger and resentment (never does a diabetic good anyway) and am thankful for the approval and the fact that I won’t be paying out of pocket anymore, despite the absurdity of Medicare’s restrictions. However, I will still work in any way I can to change those restrictions if possible.”

Another senior stated it even more succinctly:

“It is what it is. You want Dexcom through Medicare? You sign the form.”

Amen.

 

Note: This blogpost only addresses the smartphone ban for Medicare coverage of the Dexcom G5. There are other problematic policies such as only 2 test strips per day being provided to CGM users. Those issues are in the wait-and-see category and worthy of discussion another time.