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….

*********

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.

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.