Diabetes Tech: Moving into the Future

2020 has brought long-awaited changes to my life with diabetes. I am using my second Dexcom G6 sensor and so far it has been fabulous. Of course there is something quite pitiful that a diabetes device is the coolest thing in my life and I am not bragging about a new Tesla or Coach purse. But that’s life with a chronic disease….

Those of us on Medicare are late to the G6 game and you can find tons of reviews online and don’t need a review from me. But I will quickly say that the insertions have been painless and I am seeing more consistent accuracy with G6 than I ever saw with G5. (And I considered G5 to be very good.) Here is an image from Day 9 of my first sensor.

I am thrilled with not having to calibrate the sensor. One, it is not required for accuracy in most cases. Two, it eliminates the constant calibration notifications on my phone, watch, and pump. I calibrated the first sensor twice. On Day 6 it was reading super low in the 50’s when my BG was 110. A calibration quickly brought it back in line without the delays or rebounds common with G5. But the next day all of a sudden the sensor was reading too high and I had to do a reverse calibration of the previous day. The two calibrations essentially cancelled each other out and I wonder if I shouldn’t have done the first one. To be determined as I gain more experience….

If my first two sensors are a valid test, I can say without doubt that Dexcom G6 is an improvement over G5. But the biggest change in my diabetes tech life is….

Basal IQ.

As described on the Tandem Diabetes provider website: “Basal-IQ technology uses a simple linear regression algorithm that uses Dexcom G6 CGM values to predict glucose levels 30 minutes ahead based on 3 of the last 4 consecutive CGM readings. If the glucose level is predicted to be less than 80 mg/dL, or if a CGM reading falls below 70 mg/dL, insulin delivery is suspended. Insulin delivery resumes as soon as sensor glucose values begin to rise.”

For many years I used temporary basal rates of zero to head off lows. But frankly although it was a helpful technique, it didn’t always work great. The insulin suspension took too long to work and often resulted in highs later on. The difference between my attempts at manipulating insulin and Basal IQ is that the Tandem pump suspends insulin predictively. It is smarter than I am. I am smart, but Basal IQ is smarter.

I have been using Basal IQ for 2 weeks and there is no doubt that I have had fewer lows. I have had a few nights where I had no Dexcom alarms for lows. For me that is monumental. But in typical diabetes fashion I have had a few nights with moderate highs that repeated boluses are slow to bring down. There is some comfort in knowing that I can bolus more aggressively than in the past because Basal IQ will ameliorate (but not necessarily prevent) the inevitable resulting lows.

One thing I like about Basal IQ is that I can chose no notifications when it turns on and off. I am a poster child for alarm fatigue with my diabetes devices. Basal IQ prevents a lot of my lows resulting in few alerts from the Dexcom app. But I still rarely have a night with no diabetes issues and either need to completely stop snacks in the evening or raise my high alarm threshold.

I think it is interesting that Basal IQ can be considered to be a basal test. One might argue that if you repeatedly have a 3-hour period overnight where your basal is suspended for almost the whole time, your basal rates might be too high. Or if you have a period of sustained highs and never have suspended insulin through another period, maybe your rates are too low. I assume that somewhere in between is the “sweet basal spot.” But maybe not — because I have always suspected that there is not a perfect basal profile that works for every day. Remember the Diatribe 42 factors that affect blood sugar. 

In the online community, especially the Seniors with Sensors group on Facebook, there are many seniors doing really well with their diabetes. The definition of “really well” differs from person to person. But at my age if you’re satisfied with your care, your D-numbers, and have a supportive doctor, I think you’re doing really well. Some seniors using the Tandem pump and Dexcom G6 are thrilled with Basal IQ and appreciate help avoiding lows. I am mostly in that group. Others are frustrated with post-insulin-suspension highs or are convinced that a sensor-augmented insulin delivery system can’t match their manual results. A lot of seniors are going to have a hard time giving up manual control of their diabetes and their concerns are valid. In contrast the diabetes world has a whole generation of CGM users growing up not knowing anything other than complete trust in their sensors. And soon that will be the norm, not we old folks who used pee-strips, urine-testing chemistry sets, and 15 BG meter tests a day.

Tandem’s Control IQ has been approved by the FDA and will soon be available via a software update to all of us with in-warranty Tandem X2 pumps. Even those of us on Medicare! My A1c and average BG will rise if I use Control IQ. Will the reduced mental burden be worth it? Statistics and my endo might argue that I would be healthier and living with less risk if my A1c increased. Am I old enough that I should be modifying my targets and treatment? Do current risk studies for seniors with Type 1 diabetes reflect the adoption of CGM technology that protects us from most severe lows? How good does my diabetes control have to be? The questions go on and on.

I know people online who will never adopt new technology that they don’t trust or that might raise their A1c’s out of the low 5’s. I know others who are always open to trying new things and are willing to take some risks on the path to diabetes nirvana. And for sure there are people who have struggled every day of their diabetes lives and are willing to let smart technology take control of their physical and mental health. I am not sure exactly where I stand on these decisions and know that I will be writing more in the future about Control IQ.

At the moment, I am still learning Basal IQ and feel my D-life has been improved with this technology and the Dexcom G6. One roadblock that might prevent me from updating my pump to Control IQ is that I will not have the option to go back to just Basal IQ. They are completely different pump software configurations and algorithms. By going with Control IQ I am limited to the programmed target blood glucose levels for highs and they are higher than I currently target. Basal IQ just addresses lows and leaves highs to me. Does it matter? I don’t know and plan to stay on the sidelines a while before making the commitment to change.

If you are considering Control IQ, I suggest that you listen to this Diabetes-Connections podcast where Stacey Simms interviews Molly McElwey Malloy from Tandem. After listening to the podcast I was comfortable that Control IQ would be good for me. But I know I need to learn more before committing. This coming Wednesday (1/15/20) Tandem will have a live presentation on Facebook explaining Control IQ and answering listener questions. I don’t have a specific link but here is a screenshot of the email i received from Tandem. For sure you’ll hear more from me in the future about Control IQ–my opinions and those of my fellow seniors with diabetes.

 

Medicare and Dexcom G6: Yes!?!

There is a lot of discussion on social media this week about Dexcom G6 finally being available for Medicare recipients. Most of it is personal testimony along with a few links and guesses of what the story is. But some seniors are definitely ordering G6 systems and that is great news. I have heard from two sources that Dexcom will be sending current Medicare G5 users “A LETTER.” But now that the cat’s out of the bag, many of us are not patiently waiting for instructions from Dexcom.

The most information about G6 Medicare availability is on the Dexcom Provider website. This link details the steps a physician should go through to prescribe a G6 for Medicare patients:

https://provider.dexcom.com/support/medicare-coverage-and-prescribing-information

Interestingly Walgreen’s is being mentioned as the go-to supplier. Walgreen’s is licensed to dispense Part B DME for Medicare because that is how they have for many years provided test strips, insulin for pumps, and other DME products. Patients are also allowed to use other approved DME suppliers to get their Dexcom G6 and I have chosen to use Solara Medical which provides my pump supplies. Although I am mostly a satisfied Walgreen’s customer, they do periodically bill my Part B insulin to my Part D prescription plan and I don’t want to give them the chance to do the same with my CGM supplies. Hopefully the Dexcom-Walgreen’s partnership will be successful but I suspect it will take a while to work seamlessly.

Here are a couple more helpful links:

Medicare FAQ’s:  https://provider.dexcom.com/faqs-categories/medicare

DME suppliers other than Walgreens:  https://www.dexcom.com/medicare-coverage

I have no idea what the Dexcom letter will say or if there really is one. I do know that upgrade eligibility will require that it be at least 90 days since since the most recent G5 transmitter was shipped. I was somewhat concerned by the following statement on the provider FAQ’s webpage addressing existing Medicare patients: “New Medicare patients will have access to Dexcom G6 immediately, and we will begin upgrading existing Dexcom G5 Medicare patients soon.”

Since I have lived with Dexcom’s definitions of “soon” and “next quarter” for over a year, I was not willing to wait to see what happens. I called Solara this morning and a sales specialist placed my order. Solara will contact my endocrinologist for a prescription and the required chart notes. My last G5 transmitter shipped on August 6 and my G6 system should be eligible to be shipped on November 5. My G5 receiver is the old style and not able to be updated to G6. Therefore my initial G6 shipment will include a touchscreen receiver. Medicare regulations still require that a receiver be used occasionally to view Dexcom data although there is currently no enforcement of the policy. I think it is a “Don’t ask, Don’t tell” situation and a reflection of the fact that CMS has no interest in diving into the black hole of trying to update Medicare DME policies. Because Dexcom Clarity does reflect what devices I use to collect my CGM data, I try to use the receiver a day or two every couple of months. That seems “occasional” enough to me….

I am mostly happy with my Dexcom G5. But I use a Tandem pump and have been very frustrated at my inability to access Basal IQ because I don’t have a Dexcom G6. I truly believe that Basal IQ will improve my safety and sleep as it shuts off insulin delivery in response to predicted lows. Whether I use Basal IQ all of the time or just at night will be determined in the next couple of months. 

Nothing about this blogpost is official although it shares some legitimate facts through the Dexcom provider links. Other than that, it is what I have learned on Facebook from other Medicare Dex users and by talking with a sales rep at Solara Medical. Until a Dexcom G6 system arrives on my front porch, I will only hope that the road that I have chosen to G6 is a good one. If any of my readers has more information, opinions, or G6 experience, please share in the comments.

But I am smiling today because I was worried that today might never come….

Diabetes and Older Adults: Modifying Targets and Treatment?

I am 67 years old and have lived with Type 1 diabetes for over 42 years. In the last year I have read a lot about the possibility that I should consider modifying the intensity of my diabetes regimen and relaxing my targets. My endocrinologist suggested the same thing during my December visit saying that I have a lot of cushion in my numbers and could raise them without risking complications. Okay, she actually said I don’t have to worry about complications 20 years down the road…. Doesn’t she think I’ll be an active and vibrant 87-year old?

An article was recently published in The Journal of Clinical Endocrinology & Metabolism titled “Treatment of Diabetes in Older Adults: An Endocrine Society Clinical Practice Guideline.” The conclusions of the fairly long article were stated:

“Diabetes, particularly type 2, is becoming more prevalent in the general population, especially in individuals over the age of 65 years. The underlying pathophysiology of the disease in these patients is exacerbated by the direct effects of aging on metabolic regulation. Similarly, aging effects interact with diabetes to accelerate the progression of many common diabetes complications…. The goal is to give guidance to practicing health care providers that will benefit patients with diabetes (both type 1 and type 2), paying particular attention to avoiding unnecessary and/or harmful adverse effects.”

I was able to access the entire article online and was optimistic that I would find information relevant to my current age and diabetes status. The article addressed all seniors with diabetes which we know is mostly Pre-diabetes and Type 2. But Type 1 was specifically addressed in areas where our needs might differ from those with Type 2.

In general I found the article to be “unhelpful.” If you want to check it out, I suggest that you just read the first couple of pages which is the “List of Recommendations.” Most of the text after that was repetitive and didn’t provide specific guidance beyond the introductory list. 

Throughout the article the words and phrases that jumped out at me were heterogeneity, minimize hypoglycemia, simplify management, duration of diabetes, overall health, cognitive impairment, fall risk, and cardiovascular disease. Those are hugely important considerations for me and all people with diabetes. Unfortunately I have a hard time seeing myself in this article because the scope of the age and health status categories are too broad. Although the authors emphasized the heterogeneity of this population, I believe there was too little distinction between an active and relatively healthy 67 or 72 year old and someone in their late 80’s in a nursing home. But the authors specifically mentioned seniors who have lived with Type 1 for more than 40 years as a group that should be targeted for de-intensifying management. And that’s me.

Slightly off-topic:  As I was writing this blogpost, I read in the Minneapolis paper that Best Buy has purchased GreatCall to expand the “retailer’s connection to seniors.” As I was multi-tasking with my laptop, iPad, and iPhone, I shuddered at: “a diverse portfolio of devices tailored to older adults — including simple flip phones with large buttons and extra bright screens, wearable alert devices and a line of sensors for high-risk seniors that monitor daily activities at home.” Just as medical professionals need to consider seniors with diabetes who have come into the 21st century with pumps, CGM’s, low-carb diets, and the ability to maintain near-normal A1c’s, tech companies need to move beyond the stereotype of Grandma with a flip phone.

There may come a day when I need to simplify my diabetes regimen. But that is not today as I have recently ordered a Riley Link to experiment with looping using an Omnipod tubeless pump and my phone as the controller. I continue to be excited by new D-technology and don’t have cognitive impairment that limits my treatment options. Heck, the process of getting the medications and supplies that I need under Medicare require vigilance, organization, and super-cognition! I can still recite my 14-digit library card number and can easily remember 6-digit codes texted by Amazon and my bank.

My guess is that the “average” population of seniors who have lived with diabetes for 40, 50, and 60+ years is different than the seniors that I know online. Those of us involved in diabetes social media tend to be knowledgeable about our diabetes and highly motivated. Some of us have diabetes complications; some of us have other health issues; some of us struggle to get the care that we require. But as a group we are a bunch of opinionated, hard-headed seniors who battle for the medications and technology we want and need to keep us healthy. We are not ready to settle for high A1c’s and yesterday’s medications and tech.

And yes, I need to remember that someday I may need a flip phone with large buttons and an extra bright screen. I may be in a nursing home where I cannot care for my diabetes. Like many seniors who have lived a long time with Type 1 diabetes, I have no faith that anyone else will be able to care for me. Type 1 is really, really hard even with my experience, motivation, and access to current D-tools. I can’t imagine anyone else doing it nearly as well as I do. My aim is to maintain my health so that I can care for myself as long as possible. And then when I can no longer care for myself, I hope my sister will “do me in.” Okay, that is a warped family joke but my sister who also has Type 1 and I have long joked about and been terrified of becoming incapacitated seniors with diabetes.

I am aware that it might not be a bad idea to raise my BG targets. I have too many moderate lows and know that I am overconfident in the safety net that my Dexcom provides. I haven’t needed help with a low in years. But that doesn’t mean I won’t tomorrow.

But I don’t know how to do diabetes differently.

If I can’t get it right with a target of 90, why should I miraculously be able to get it right at 100 or 120? My diabetes problems are not 10-20 unit variations. I struggle with false occlusion alarms on my Tandem pump and often get skyrocketing numbers when the cartridge gets down to 30 units or less. I don’t go from 80 to 100. I go from 63 to 197 or 241. I am at an age where I don’t have a lot of hormonal excursions. But lately I am seeing lots of up and double-up Dexcom arrows from lowish-carb meals or 2 glucose tabs. Is my Dexcom wonky or am I? My meter would say that it is me. I think it is my pump. For sure my diet has had more carbs than I know that I can handle. The frustration is that I rarely know precisely what is driving my blood glucose aberrations.

Oh cr*p, it’s just diabetes.

At the moment I don’t see changing my diabetes care because of my age. At the same time there are studies indicating that I might live longer if my A1c was higher. But not too high. And not too low. I look forward to looping and hope that it will ease the burden of my care, especially overnight. If not, I don’t expect to be worse off. I look forward to the Basal IQ update with my Tandem pump but it has been delayed for 6-9 months due to Dexcom not supplying the Dexcom G6 to seniors on a timely basis. I look forward to the Tandem Control IQ update but am concerned that Medicare recipients will not get access to the software update due to the likelihood that there will be a charge for the upgrade. 

I know in the short run that it would be a good idea to reduce the number of moderate lows I experience but I am not convinced that can be achieved by relaxing my care and targets. Actually I believe that more intensive regimens like Looping, Basal IQ, and Control IQ can address hypos more effectively. And probably the best way to level out my blood glucose numbers would be to get back on the wagon with more disciplined lowish-carb eating.

So on to another day with diabetes….

March Miscellany

It is a new month and time for opinionated comments and updates.

It Shouldn’t Be This Hard:  Earlier this week I ordered my February Medicare bundle from Dexcom. I am also in the process of trying to get my 90-day insulin prescription under Medicare Part B. I’ll politely say with no curse words that none of this is going well. I am turning into the “Always-B*tching Blogger” because this stuff is so hard. And it shouldn’t be. I am just trying to do what I did last month and the month before with Dexcom and 3, 6, 9 months ago with Walgreens and insulin. 

I will eventually get out of Dexcom “Processing” limbo and my supplies will be  shipped. Some Medicare recipients have been told that shipments are delayed 7-10 days due to high volume. Long call waits, shipments delays, and moving Call Support to the Philippines have not made Dexcom a popular company in the diabetes online community. ‘Nuff said. And Walgreens will figure out how to get Medicare coverage for my insulin.

At the same time, I like the ring of Always-B*tching Blogger and you can just think of me as ABB!

The Weather:  I have spent winters in Arizona for 15+ years and have never seen snow. That changed last week with 3 inches of the white stuff. Fortunately despite a few downed tree limbs, we had little damage. 

Finally spring has arrived and the Arizona that I know and love is back.

Ground Squirrels:  Although my landscape and flowers survived the snow, I am totally losing the battle with ground squirrels. These horrible creatures are “protected” in Arizona and my exterminator isn’t allowed to poison them. Plantskyd which deters rabbits and deer in Minnesota is impotent. My normally gorgeous March geraniums are decimated. This photo is one day after replanting and an ample dosing of Plantskyd.

The Dog:  All of my readers are kind to read about my dog and her journey through aging and illness. I have come to terms with her limitations and the fact that we only walk half a block twice a day. Otherwise she is happy, eats well, drinks well, poops well, plays fetch with her Bouda giraffe, and wags her tail. Despite me being her caretaker, feeder, medicine dispenser, Bouda thrower, etc., she loves my husband the best and delegates me to #2. Like a teenager, she loves baking in the sun on our back patio.

Animas/Medtronic/Tandem: My Animas pump went out of warranty in late 2016, but I still get emails from Animas and Medtronic about switching to a Medtronic pump system. I am committed to Dexcom and see Tandem and maybe Omnipod as my future. Until Medtronic sensors are reimbursed by Medicare, there is no way that I will take a chance on a CGM that is out-of-pocket. At the same time I have struggled for 2+ years with occlusion alarms on my Tandem X2 and have been back using my Animas Vibe trouble-free for the last 3 months. 

Kinda Whole 30: I have written about Whole 30 and my imperfection at succeeding through 30 days. But I periodically go back on the reset diet and am amazed at how fabulous my blood sugars react to no dairy and no grains. I eat a ton of fruit on this diet and get no spikes. Because I have hosted two dinner parties in the last week, I have once again have strayed from perfect adherence and have had wine. But here is a 24-hour Dexcom tracing that speaks for itself.

Thank-you.  As always, I am grateful for my online diabetes contacts. Keep up the good fight, my friends, and keep in touch. Without you, my diabetes would be really, really hard instead of just really hard. Diabetes social media makes a difference. 

Days in a Month with Diabetes

30 days hath September,

April, June and November.

All the rest have 31.

And February’s great with 28

                                     And Leap Year’s February’s fine with 29.

Medicare rations diabetes supplies on a strict 30-day or 90-day cycle. My Medicare suppliers are even worse and tend to think that months have 35 days and quarters have about 95-100 days.

Unfortunately no one has communicated that to my diabetes which trucks along with a strict 24/7/365 (or 24/7/366 in a Leap year) schedule.

I continue to rejoice that my Dexcom G5 CGM is covered by Medicare, but it has been frustrating that Medicare currently requires Dexcom to send out supplies monthly rather than quarterly. The personnel and shipping costs for Dexcom for this monthly distribution are probably substantial and every month seems to leak a few days between shipments. In 2018 most of my shipments were a couple of days to a week late and over the course of 12 months, I only received 11 Dexcom shipments. My guess is that my experience is reflective of that of most Medicare beneficiaries. That means that Dexcom lost one monthly subscription fee for each of us and that is a lot of money for a small company. I was lucky to come into Medicare with a cushion of CGM supplies and I have been okay with constantly late deliveries. I also know about Spike and xDrip where you can reset G5 transmitters to last longer than the software-mandated death of 90-104 days. But some Medicare users have had to go without their CGM when sensors and particularly transmitters have been delayed. There is sometimes an excuse such as backordered transmitters or insurance verification. This month I placed my order on the designated day and the very nice Dexcom rep offered no excuse when she said it wouldn’t ship for another week.

I have been most impacted by pump supplies. I went on Medicare in April of 2017 and I received my 4 boxes of pump supplies like clockwork. Medicare strictly requires that each infusion set will last 3 days and allows no cushion for painful or failed sites. Or aging skin and tissue which require 2 day sets changes. Or steel cannula sets which mandate a 2 day change. In 2017 my doctor’s letter of medical necessity for 4 boxes instead of 3 was accepted and I got the needed supplies. My first order of 2018 was shorted a box and the supplier was unwilling to work with me to override the restriction. I switched suppliers and seeming the override was fine. But they sent the order 10 days late. In infusion set language, 10 days is half a box of supplies for me. Then 3 months later, they wouldn’t send my order until 92 days had passed. Then the next order was another 10 days late. 

I have recently switched to Tandem TruSteel sets and seem to have better insulin absorption than with my previous VariSoft sets. And guess what! You can move the needle part of the set, reinsert it, and tape it down to get another day or two from the set. After two days, 90% of my TruSteel sites are slightly inflamed. So you go, Grandma!. Pull out the needle and tack it into another location. So far I have had no real infections and fortunately am very pain-sensitive and don’t try to extend puffy sites. But we all know that one ER visit or hospitalization would quickly blast past my Medicare-approved cost of $5.91 per infusion set.

Meanwhile diabetes keeps trucking along.

1, 2, 3, 4…..90 days.

If I did not extend infusion sets and have a stash, I would run out of supplies. 

Medicare teaches you to lie. When you call your supplier to renew your 90-day supply, you can’t have more than a week (or is it 10 days?) worth of pump supplies in your D-tub. I would never in a million years be comfortable being down to 3 or 4 infusion sets before ordering more. With Dexcom the policy seem to be more liberal and I can get 5 sensors and 3 boxes of test strips if I am out of supplies. But even a failed transmitter doesn’t seem to get me better than 3-day shipping. My suppliers have failed me in the past and I don’t trust them to bail me out in an emergency. So I always tell them that I have fewer supplies than I really have. Because….

Diabetes keeps trucking along.

I have never sold excess supplies and I no longer share excess supplies. But as someone who has lived with Type 1 diabetes for 42 years, I know that I cannot risk being without insulin for 5 minutes or pump supplies for 5 hours or CGM supplies for 5 days. 

One of my Medicare diabetes online friends once told me that every 90 days she feels as though she is recreating the wheel and resetting her diabetes life. With Dexcom it is every 30 days.

I get it now. That’s the game. And that is the game I play.

Type 1 Diabetes and my Medicare Drug Plan

There is nothing special about today’s blogpost. It is just my experience choosing a new Medicare Part D drug plan. My only advice to you is to consider what you require in a drug plan and what the financial ramifications are. Don’t assume that what you used in 2018 is your best choice for 2019.

I now understand one way that Medicare drug plans make lots of money. I am only in my second year of Medicare and it is obvious that it would be easier to stay with what I am doing rather than make a change is logical and financially-expedient. Inertia. Yeah, it’s easier to do nothing than to do something. It can be laziness or just comfort in living with what you know. But you have to remember that doing nothing is a decision and that decision may not be the best decision.

My current drug plan has worked well since I went on Medicare in the spring of 2017. But I have recently started taking an arthritis drug that is not part of that plan’s formulary. It is not a hugely expensive drug; it is just a lesser-prescribed anti-inflammatory. I have received an exception-to-formulary approval for the medicine through 2019 but the monthly co-pay is almost as much as my monthly premium cost. 

So I have wisely gotten off my duff and gone to the Medicare Find-a-Plan website to compare 2019 Part D plans available in my area. I entered my zip code, answered some basic questions, and listed the drugs that I take. I only take 3 drugs under my Part D plan and it didn’t take long to enter the names and dosages. If you have a long list, you can save your drugs to a password-protected drug ID so that you don’t have to enter them every time you visit the website.

I entered my desired pharmacies and selected the option to look at drug plans. You can also use this option to compare Advantage plans.

The wisdom of examining my 2019 choices was immediately apparent. Having entered Walgreens, CVS, and mail order as choices, the cheapest option combining premiums, deductibles, and drug costs was $231 for CVS mail order and $233 for CVS retail. The tenth cheapest plan would be almost $900! Staying with my current plan would be almost $700. Formulary is the name-of-the-game in choosing a Medicare drug plan….

Sometimes money is not the only decision-making factor in choosing a drug plan. As mentioned above, my cheapest drug plan option for 2019 would involve switching to CVS and I have three reasons for wanting to stay with Walgreens.

One, I have used Walgreens for most of my adult life. It has always worked well and my philosophy is “if it ain’t broke, don’t fix it.”

Two, as someone who uses an insulin pump, my insulin is covered under Medicare Part B rather than through my drug plan. The savings are huge because Medicare pays 80% of the cost of my insulin and my Medigap policy pays the remaining 20% leaving me with no out-of-pocket cost for insulin. Due to Medicare regulations and unawareness of this coverage by many pharmacies, it can be difficult to establish and maintain Part B insulin coverage. Before I started Medicare, I was advised by several Type 1 friends that Walgreens and its national Medicare department is one of the best pharmacies for setting up Part B insulin. I have online diabetes friends who get their Part B insulin successfully from CVS, Krogers, and other pharmacy chains, but once again for me “if it ain’t broke, don’t fix it.” I could probably get Part B insulin at Walgreens and other prescriptions at CVS, but I prefer having my prescriptions with one pharmacy. Convenience for me and I think that the occasional glitches in receiving Part B insulin are more easily resolved because I am well-known at my local pharmacy.

Three, I am a snowbird and leave the cold and snow of Minnesota in late December. The idea of transferring my prescriptions in 2019 to CVS through a pharmacy in Arizona seems overly complicated. I am willing to pay a premium to avoid the potential problems of the switch.

I am mostly sure of the drug plan that I am selecting for 2019. It only has two stars out of five stars and at Amazon that might scare me. But my previous Part D plan only had two stars and it was fine. I am lucky that I do not take expensive drugs and even luckier that I do not pay for insulin through Part D. But even still, a wrong part D plan could be an expensive mistake. If I do nothing, I will be automatically enrolled in my previous plan and that would be an expensive default. FYI I do not have to cancel the old plan; that will happen automatically when I I enroll in a new plan.

This blogpost is certainly not a “how-to” post. However, it is a reminder that if you are on Medicare, don’t assume that what you did in 2018 is the best choice for 2019. I’ve gotten off my duff. Be sure that you do the same. You have until December 7 to make a change or confirm that your current plan is still your best option.

Lots of I Don’t Know’s

Okay. Let’s talk about Basic Medicare** and the Dexcom G6. Then let’s talk about Basic Medicare** and Tandem Basal IQ. And then let’s just admit that we don’t know the answers to our questions and that we’re not going to get answers in the next 5 minutes.

Who, what, when, where, why? 

Yeah, I don’t have a clue.

As someone on Medicare I’ve felt left out in some of my Facebook groups recently. In the Dexcom D5/G6 Users group and the DEXCOM G6 group, the vast majority of topics are about the G6. Do you like it? What is great? What is terrible? Adhesives, accuracy, and sensor longevity. Insurance and supply issues. The Tandem tSlim Pump group is all about Basal IQ with the majority of users stating that it is fabulous. There are questions about how it works and at what point basal insulin is suspended and then resumed. Stories about climbing Mt. Everest and others wondering about how to coordinate the prescription from their doctor, the training, and the software download. I don’t fit in anymore and I have no advice to give. In fact I am a little bored in these groups and mostly not checking in.

You see—I’m on Medicare. I don’t have the Dexcom G6 and my Tandem X2 t:slim pump is not updated to Basal IQ. I am not whining. Okay, maybe I am–just a little. But mostly I am just stating facts.

After weeks of rumors, it was officially announced on October 16 that Medicare will begin covering the Dexcom G6 for Medicare recipients. The nitty-gritty has not been worked out but it is estimated that April 2019 is a reasonable target date.

For those of us who have been involved in advocacy for CGM coverage by Medicare for years and who have been joyously receiving coverage since the second half of 2017, this announcement is welcomed but generates more questions than answers. I think that the more you know, the more questions you have. Addressing customers on the Dexcom G5, the news release states:

“Once G6 is available, Dexcom will be reaching out to current Medicare G5 customers when their transmitter is eligible to be replaced. Dexcom will also discuss the G6 and the Medicare beneficiary’s eligibility during routine monthly contact.”

That sounds very straight forward but I worry that it is not. The elephant in the room for those of us on G5 is The Receiver. In January 2017 after the initial approval of the Dexcom G5 by Medicare, I wrote a post titled “Medicare and CGM Coverage: Love Your Receiver!” and explained how Medicare justified the approval of the G5 as Durable Medical Equipment (DME) because the receiver had an estimated 3-year life. Therefore for those of us on Medicare, the G5 receiver has a 3-year warranty. Although we are now allowed to use our smart devices to read our G5 data, Medicare regulations still state that the smartphone is used “in conjunction with” the receiver. And FDA approval of both the Dexcom G5 and G6 requires a receiver to be provided as part of the initial bundle.

I have an old-style Dexcom G5 receiver that cannot be updated to G6 in contrast with the newer touchscreen G5 receiver that can be updated remotely to G6. Medicare through stupid regulations that I don’t understand does not allow Medicare recipients to participate in manufacturer upgrade programs. Thus Dexcom cannot give me the option of paying $100 or $25 or whatever to exchange my dated receiver for a touchscreen G5 or G6 receiver. 

Technically my G5 receiver is warrantied for 3 years and I can’t upgrade it. Am I going to be able to switch to the Dexcom G6? Interestingly, the Dexcom press release only addresses the transmitter and makes no mention of the receiver. Without knowing the details of Dexcom/Medicare negotiations, I have no way of knowing my status. Is everyone forgetting the FDA requirement of the G6 receiver? Is Dexcom going to provide G6 receivers to current G5 users at no charge? Will I get a G6 transmitter and sensors without a receiver? IMO there is no way in h*ll that Medicare will pay for another receiver. Because the Medicare/Dexcom relationship is on a subscription basis, will all of the previous rules about upgrades be thrown to the wind?

As I said above, the estimate is that Dexcom G6 products will be provided to Medicare recipients starting in April of 2019. I have neither seen nor heard of specifics regarding this rollout. There are lots of discussions and rumors floating around Facebook but no one really knows. I have been on Medicare long enough to live by the mantra: “When I know, I’ll know. Until then, I won’t.”

If I were not using a Tandem X2 pump, I would not care much about using Dexcom G6. I look forward to an easier insertion and no required calibrations with the G6, but neither is a huge deal for me. But I really look forward to updating my Tandem X2 pump to Basal IQ which automatically shuts off basal with predicted lows. And then the future Control IQ which will function as an early generation artificial pancreas. 

But if things are in the dark with Dexcom and Medicare, they are really in the dark with Tandem and Medicare. The last communication I had from Tandem regarding the use of my pump as a receiver for my Dexcom CGM was in November 2017. The webmail stated:

“Dear Customer: As someone who, according to our records, has a t:slim X2™ Pump and also has Medicare for health insurance benefits, you may be aware that Medicare coverage of continuous glucose monitoring (CGM) is limited to viewing CGM data only on a Dexcom receiver and NOT a smart phone or an insulin pump.”

Since then I have heard nothing.

Frankly I think that the current Tandem policy regarding Medicare is: “Live and let live.” Some people are being told by their Tandem reps that it is okay to use their pump with Dexcom. But I do not think that is true because there has been no official announcement allowing the pump as a Dexcom receiver. At the same time there is no enforcement of the policy and Tandem is not sending reminder emails about Medicare. Although one part of me thinks that it is poor customer policy that Tandem is not communicating with Medicare recipients, the other part is okay with just ignoring the problem.

Unfortunately the problem of Tandem and Medicare will come to a head when the Dexcom G6 is distributed to Medicare users. Will we be allowed to download the Basal IQ software update (which requires G6) to our X2 pumps? Tandem has said nothing and unfortunately IMO it would be a total violation of current Medicare policies to allow the update.

Once again we don’t know the answers.

No answers to who, what, when, where, why.

Just a reminder to be patient and go with the flow…

Of no information…

and…

Fingers crossed for the ability of those on Medicare to benefit from the latest and greatest in diabetes technology.

Until then, just remember the Medicare mantra:

“When I know, I’ll know. Until then, I won’t.”

*******

** Please note that although Medicare Advantage plans must cover everything covered by Basic Medicare, they may have more flexible policies than Basic Medicare and provide more benefits. Currently some of these plans are already covering the Dexcom G6, but most are in line with Basic Medicare.

Medicare-Dexcom-Smartphones:  Wait! Just Wait!

On 6/11/18 Medicare announced a change in policy to allow Medicare beneficiaries to use smartphones in conjunction with continuous glucose monitors.

“After a thorough review of the law and our regulations, CMS is announcing that Medicare’s published coverage policy for CGMs will be modified to support the use of CGMs in conjunction with a smartphone, including the important data sharing function they provide for patients and their families.

The Durable Medical Equipment Medicare Administrative Contractors will issue a revised policy article in the near future, at which time the published change will be effective.”

I have not blogged about this change for several reasons. 1) I am a lazy blogger. 2) I was quoted extensively in articles by Diabetes Mine and Diabetes Daily about my reactions to the announcement. 3) Most of my diabetes preaching these days takes place on Facebook. Today I decided to enter the arena with a blogpost because of the chaos on diabetes social media about what this announcement means and when it will be implemented.

Dexcom initiated the confusion with a 6/11/18 press release that states: “With nearly half of adults ages 65 and up using smartphones, Medicare diabetes patients are now able to use the Dexcom Share feature that allows users to share glucose information with up to five loved ones or caregivers.”

The problem is the word “now.” Now is not the near future as stated by CMS. Adding to the confusion is that a definitive policy was not communicated and standardized throughout the Dexcom organization and some Medicare beneficiaries were told by Dexcom reps that they could immediately begin using the G5 Mobile App. 

A couple of Facebook quotes:

“Damnit. Dexcom said it was good to go last night.”

“I called Dexcom support/app & software department again today they checked & confirmed that we could start using it as of June 11.”

“It would help us all if CMS or Dexcom would give a definitive statement about when. There is no hard statement about waiting.”

On top of that, Diatribe (whom I normally consider to be the Gospel of Diabetes) published an article that is not entirely correct. It states: “Like other users, G5 Medicare beneficiaries can now choose to view real-time glucose data on the G5 app only, the receiver only, or both devices.”

Christel Marchand Aprigliano of DPAC who has met extensively with Dexcom and Tandem in regards to the Medicare negotiations responded on Facebook: “The receiver will still be part of the system. It is still required as part of any Medicare contract. The usage of the app will be in addition to the receiver.”

She also stated:

“While I can’t speak for CMS (Who will obviously have the final say), the meeting on Wednesday was that it would be receiver + smart phone. The receiver is durable medical equipment and the modification of language will reflect the addition of smart device (but not the purchase of said smart device).”

The date of implementation for the policy change is somewhat murky. A Dexcom official confirmed with Medicare diabetes advocate, Larry Thomas, that: “It becomes official on June 21. The technical correction notice must be updated in 10 business days from the notice.” Diatribe also wrote: “According to Dexcom, the deadline for the Centers for Medicare and Medicaid Services (CMS) to update the coverage policy is June 21, if not sooner.”

But Christel cautions us that regardless of date: 

“Do NOT download the app until the actual physical ruling has been changed.”

The last quote that I will share is a June 14 Facebook posting by Larry Thomas about his conversation with a Dexcom Medicare representative:

“The old regulations regarding NOT using the G5 app for Medicare patients are still in place and Dexcom representatives are still required and instructed to report you to Medicare if you are using the G5 mobile app until the rules are changed. This means not only will you be back charged if you are not in compliance, but you will possibly lose future coverage for Dexcom CGM supplies in the future i.e. you will become a cash-only patient with Dexcom. These are her words not mine. If you doubt them please call and speak with a representative in the Medicare department at Dexcom. Remember, just because a tech support person or app support person gives you the okay to use the app, it does not waive your responsibility to abide by the written contract you signed in order for you to get coverage by Medicare for the Dexcom CGM system. I have again requested Dexcom to send out an email to all of us affected by this situation to clarify that it’s “not a done deal yet” (again her words not mine) and have also reached out (again) to the media release department at Dexcom to change the media release so that people are not confused by this.”

*******

What you need to know if your Dexcom G5 is being reimbursed by Medicare:

1)  You are not yet allowed to use the Dexcom G5 Mobile App. You must wait until the revised policy is issued by DME Medicare Administrative Contractors (MAC’s) such as Noridian. If you use your smartphone before this revision is released, you are in violation of Medicare policy and risk losing Medicare reimbursement for your Dexcom G5.

2)  It is highly unlikely that you will be able to your smartphone exclusively without some use of the receiver. “In conjunction” means “with” and “combining” not burying the receiver in a sock drawer. IMO it is best to refrain from sharing your receiver-avoidance intentions on social media until the final CMS policies are released. Don’t give CMS ammunition to contrive stupid roadblocks to reasonable CGM use by Medicare beneficiaries.

3)  Do not call Dexcom at this time. Christel Marchand Aprigliano of DPAC told me: “Tell everyone to wait for the policy change from CMS in writing – Dexcom will put out information when it becomes available. Please kindly also remind them that the customer service department at Dexcom is trying very hard to provide good customer service, but it is not in anyone’s best interest to call – wait for the announcement published by Dexcom on the website (and I’m sure we will be announcing this as well.)”

4)  Nothing about this recent change in policy affects the use of the Tandem X2 insulin pump as a CGM receiver. Although Tandem and Dexcom are in negotiation with CMS, the current policy is that Medicare beneficiaries are forbidden from using their Tandem t:slim X2 pumps as a Dexcom G5 receiver.

*******

Special thanks to Christel Marchand Aprigliano of DPAC and Larry Thomas, bulldog Medicare diabetes advocate, for giving me permission to share their words.

Note that all bold text in this post is my emphasis and not that of the organization or person being quoted.

One Year on Medicare:  Advocacy versus Acceptance

On April 1 I celebrated Easter, traded April Fools’ Day jokes with the grandkids, and acknowledged the festival of Passover. Although I didn’t think of it that day, it was also my one-year anniversary of going onto Medicare. Is that a Medicaversary???

In general Medicare has been okay. I think that I made the right choice going with Basic Medicare and a Supplemental plan rather than a Cost plan (Minnesota’s hybrid version of an Advantage plan). At the same time I have the nagging feeling that I should have put more thought into the possibility of remaining a dependent on my husband’s insurance.

Almost everything that I have needed medically in the last year has been covered by Medicare but it has been a lot more work than my previous interactions with private insurance. Initially a few of my providers and suppliers made mistakes filing claims with Medicare. My Welcome to Medicare visit and a few routine screening tests were denied because a front desk clerk scanned my Medicare card but did not enter Medicare as my primary insurance. Then they entered the wrong date for my Medicare start date. I received lots of denial of service notifications but never a bill and it took a bunch of phone calls to get everything worked out. It was a PITA but not stressful because I knew that Medicare was supposed to pay for everything. There is a reason that Medicare is primarily for retired people because sometimes you need lots of time to navigate the system.

I have had two other issues with Medicare. The first has been discussed extensively on my blog and is the Medicare ban on smartphone/pump use with my Dexcom G5 system. I truly believe that this will eventually be remedied and I have heard from a reliable source that it might be in late 2018. But I’ll believe it when I see it. The second is that starting in 2018 my pump supplier (CCS Medical) has refused to provide the number of infusion sets that I require and my doctor prescribes. Chart notes and letters of medical necessity have been submitted twice. CCS has continued to deny the supplies claiming a change in Medicare rules and has been particularly unhelpful in resolving the problem. Because I know others who have been receiving their prescribed supplies without problems in 2018, I have determined that CCS Medical is the problem and am switching to another supplier.

These days a lot of my diabetes support and information comes from Facebook and direct communication with personal and online D-friends. We each have our own journey through Medicare just as we do with diabetes. Some are satisfied. Others are sad, many are frustrated, and a few are down right mad. Those emotions can change daily.

There are definite pluses and minuses with Facebook. The pluses are that people are very generous with information and it spreads like wildfire. I get the latest diabetes news and learn a lot from other people’s experiences. I belong to about 20 groups but am most active in the Seniors with Sensors, Dexcom G5 Users, and Tandem tSlim Pump groups. There is not a lot of Type 1 diabetes-specific Medicare information on the web and other seniors on Facebook are my best roadmap to navigating Medicare. 

Some of my quandary with Facebook and Medicare is coming to terms with how much I want to live in fight-mode versus how much I should be realistic and accept what is covered by Medicare. Many things that frustrate me about Medicare probably don’t impact my health or life significantly. I think it is stupid that I am required to see my endocrinologist every 90 days in order to get pump supplies. But it’s not a big deal. Although I hate carrying a Dexcom receiver and miss seeing my BG numbers on my Apple Watch, I do not require the accessibility functions of a smartphone or a follower of my CGM numbers. But other seniors do and I might tomorrow or next week. By no means I have been silent on the smartphone issue but at the moment I am willing to let the process work out with Dexcom negotiating with Medicare. I feel somewhat guilty living in the advocacy shadows and am appreciative of others who are more actively fighting. 

But advocacy can easily morph into complaining and anger. I don’t want to spend my senior years whining and feeling deprived because I don’t have the newest and greatest diabetes tech. At the same time I don’t want to live in the dark ages and miss out on new medications and D-tech that can ease the burden of diabetes in my life. 

Today I am one year into Medicare and basking in the mostly “okay-ness” of it. The rest of the story is still to be written and we’ll see how the next year goes.

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.