What’s your “why”?

I need your help, please.  I’d like to hear your “Why I restart my dexcom?” stories.  Can you please read this post and let me know your why?  Do you have examples to share?  I’m sharing mine.

This request for input is partly motivated by this article in Diatribe where they state:

“This [restart topic] is a complicated issue, since many people pay a lot of money for CGM and the ability to extend a single sensor’s wear time – e.g. to 14 days – makes CGM more affordable…We’d like to see an end to complaints about not being able to “extend” the system – or even whether it’s possible. It’s been decided, and we believe this decision is in the best interests of people with diabetes, the system, and providers.”

Here’s my problem with that…it’s not about money by and large.  Let’s expand our vocabulary as a community and take this as an opportunity to think about what CGM *really* means for us.  An expanded conversation may just help educate the CGM manufacturers and insurance industry to make changes so that restarting is indeed a thing of the past…WITHOUT sacrificing what we are really after…LESS downtime, LESS hassle, MORE reliability for our MEDICALLY NECESSARY equipment.

I’m a bit tired of the “restart conversation” being boiled down to money so very often.  Yes, money is a factor.  But…for so many of us…money is not the primary driver.  The real driver is about redundancy, dependability, and flexibility in our medically necessary equipment.

Medically necessary or Helpful tool?

Do you feel like your insurance understands how valuable this CGM is to you?  Or dexcom?  Do they understand?  Framed another way, do you think that insurance/dexcom kind of view your CGM as a “helpful tool” vs a “medically necessary” device?

For many in the community, we view this as a medically necessary device whereas insurance/dexcom view this as a helpful tool.  There’s a BIG schism between us and our supplies as a result.

Insurance approves, and dexcom builds, a CGM system that has gaps in my BG coverage.

  • A mandatory minimum 2-hour window without BGs.
  • Prescribed supply chain that has zero tolerance for inevitable equipment failure or travel.
  • No opportunities to take steps to provide a backup plan for truly CONTINUOUS glucose monitoring.

Why is that supply chain setup like that?  Because CGM is still widely viewed by outsiders as a “helpful tool”.  But, those of us on the inside of managing this disease who choose to use a CGM…it’s actually a medically necessary device.  CGM has shaped how we live our lives, and allowed us to live a life more closely mirroring those of our non-pancreas-challenged friends.  That’s not selfish or asking for too much…it’s actually also a good business decision for the medical community.  Win-win.

With the approval of the G6 for no-finger-check management decisions, this means more people are relying on the device for their medical safety.  Blood glucose meters are left behind more often.  BGs are checked quickly on a phone or watch so that other life decisions can be made more quickly.  Travel has become a bit less intimidating.

So yeah…it’s medically necessary.  It allows my daughter to not have to restrict her life or “take the blame” for having a disease…but rather she can be protected medically as she leads a normal life.  She can do the things that otherwise might be so difficult to traditionally manage BGs during (trampoline parks, long backpacking trips, stressful job situations) without having to put herself into medically-dangerous territory.

The Diabetes Burden

Living with diabetes brings all sorts of burdens…not the least of which is managing all the situations that you need to plan for backups.  Backups upon backups upon backups.  Because you can’t be at the beach one afternoon and tell diabetes “hey, I forgot to pack the glucagon this one time, so give me a hall pass today, ok?”  I wish it worked like that.  And you know what?  A person with diabetes shouldn’t have to be any more perfect than their non-diabetic friends.  They forget things too…it’s just not life-threatening when they do.  And a person with diabetes shouldn’t be blamed when things go wrong with all the spinning plates they manage…it’s just life that a plate falls once in awhile.

Let’s expand our thinking…in an ideal world, how could your diabetes burden be lifted if insurance/dexcom viewed the CGM as medically necessary?  Prescriptions could be written and filled so that you could:

  • have an extra sensor/transmitter in your work desk…no longer need to leave work because your CGM failed and you don’t have enough supplies to keep duplicates at home/office.
  • travel for an extended period without wondering how you are going to get your supplies while in the jungles of Costa Rica, for example.
  • have access to enough supplies that you could wear overlapping sensors to provide redundancy and overlap.

What’s your “Why”?

To end the “restart discussion”, we need to open the discussion about WHY we restart sensors.  It is not about money.  We do our community a disservice when our articles only discuss this as a factor.

It’s about being able to depend on a medically necessary device.  And a medically necessary device needs to have a robust backup plan and solid supply chain.

My “why” is because I am filling that gap.  Exactly 30-day supply leaves no room for error.  It doesn’t have to be like that.  There are things that the industry can do, if they can shift their thinking away from this restart issue being about money.  It’s about a medically necessary device in my daughter’s life and I need it to have backup and continuous operation.

As I sit on the phone now with Dexcom because our G6 sensor has failed (bent wire when it was inserted last night) and I have no G6 sensors on the shelf (it was the third in our box of 3 for the month…next one doesn’t ship out for 2 days)…I’m reminded of my why.  I’m filling a gap that doesn’t have to be there.  I should’ve been able to pull this sensor hours and hours ago when I knew it was bad and simply replaced it.  Instead, we’ve absorbed the burden that doesn’t need to be there simply because I have no backup on a shelf and I’d hoped a miracle recovery would’ve been possible.  We can do better than simply calling this a “money” issue.  It’s our medically necessary device that allows her to live a normal life safely. Today will be a medical burden and it didn’t have to be that way.  A small shift in thinking could make this go away and I wouldn’t ever have to write another post about restarting sensors.

 

Please share your why in the comments.  Please…I’d like to have this conversation.  It’s important.

33 thoughts on “What’s your “why”?”

  1. I almost always restart because the first day inaccuracy means I have to start it in the morning or untrue alarms go off all night. 7 days later, it’s not an opportune time to change sensor. That’s just how our life works. But really I wait because the sensor is always so much more spot on for day 5+ . Why would I want to change when things were just getting good? Two weeks is my max though.

  2. Our “why”…medical device insertions are painful and traumatic for our six year old. And have been every single time since her diagnosis 3 years ago. Anything to avoid an extra trauma… 🙁

  3. It’s wasteful to remove a sensor that is working perfectly fine. I feel the same way about wasting food- would you throw out half a loaf of bread because it reached the “sell by” date or would you continue eating it until it really was bad?
    As much as I enjoy the dexcom, I don’t enjoy jabbing a needle into my skin. So the less frequent that I have to do that, the better.
    Also, the first day with a fresh sensor is not as accurate and that’s annoying.
    So for me it’s not about money AT ALL. I have good insurance right now and my transmitters are cheap!

  4. I’m not on G6 yet, so my experience is limited to G4 and G5 and could change when/if I switch to G6.
    My G5 sensors start being very accurate after 3 to 4 days and loose that mostly after ~3 weeks. Why should I accept the troublesome first days with a lot of noise more often than I need to?
    Also, insertion is still a painful issue which does stress me. I don’t want to do that more often than I need to do it.

  5. There are a few reasons that we like to restart sensors.

    1. My daughter does not like the insertion. It is painful for her. We would like to reduce the number of times that she has to feel pain.

    2. The first 24-48 hours of sensor readings are less accurate for us. That means that for 24-48 hours of a week or 10 days we are having to test her manually more often to confirm readings. If we can stretch sensor wear, we are reducing the percentage of time that we receive inaccurate readings and also reduce the number of finger sticks.

  6. I use the Libre system in conjunction with the BluCon and payed out of pocket for the whole system. We use the BluCon for two reasons. 1. To get a 1 hr warm up time instead of the 12 hr with the reader. 2. Extend the use from 10 days to the approved “rest of the world” 14 days.

    This allows us to use a single sensor longer and not have to insert another sensor on our son. Price is not that large of a driving factor but it still is nice to be able to save the use of a whole sensor in 2 months time.

    Once switching to a CGM is like opening the door to new technology. Its hard to revert back. We went a day without the system and it was like the dark ages, having to check blood just to know where his BG is at. Down time is hard but a 1 hr window is easy to get by with, a 12 hour window is into the land of the unknown.

  7. Our feeling is for a child wearing potentially life saving devices are in part a scary thing. Not to mention the kids being pin cushions. So the less we have to put a needle through the skin is not only physically better but also emotionally, and mentally better long term. That’s one of the factors that resets are beneficial to kids and adults alike I feel.

  8. i dont fancy changing it too regularly (its sometimes painful and is just an extra thing to do) Its also about the waste of a perfectly accurate sensor and about cost. Cost is the biggest reason for me though as it is expensive, and although it is a ‘luxury’ item, i rely on it a lot!

  9. Hi Katie,

    The restart issue for us isn’t about money at all. We are very fortunate to have no out of pocket cost for DME, but we regularly restart sensors. Why? Two reasons:

    1. Less inserts = less trauma for our 5 year old T1 son.
    2. Allows us to build up an emergency stock of extras – for when there are delays. There was one time where our insurance was delayed in administrative backlogs (long, complicated story) and if we hadnt built up reserve by restarting (because you cant, if you dont restart) – we would have had no CGM which is quite frankly just not an option.

  10. Our why is primarily exactly the same. Insurance and DME processes are so incredibly frustrating and fraught with unnecessary delay that we have no choice but to extend sensors so we have a few extras for what I have to say is not even an emergency. It’s an entirely intention stall by the insurance company in order to lower the cost of my daughter’s supplies. They will not allow us to start an order one day sooner than 30 days. 4 sensors officially last 28 days. At 30 days the process only begins with insurance processes usually controlling the pace. A second issue is very poor processes at most durable medical companies. I could write a novel on their inefficiencies. Suffice to say, the industry almost entirely needs a serious overall. At a minimum they are poorly prepared for the roadblocks insurance put in place. Others are downright incompetent. Some of our CGM orders take about 2 weeks to arrive. Others have taken 10. If you’re using a closed loop pump that relies on CGM to function this is a serious disruption to diabetes care. As more people rely on closed loop systems and CGM sensors are “locked down” to prevent any extension of service, this becomes a real betrayal to the trust the T1 community puts in this broken system that literally keeps them alive. In addition, because of the recent backorder problems at Dexcom my daughter has already asked “What will I do if I run out of sensors for my AP and Dexcom can’t even tell me when they can ship sensors?” My daughter knows how to care for herself without a functioning CGM (barely ). But there are already parents and people with T1 who only know how to treat diabetes with a CGM. This will increase dramatically when closed loop systems become the standard of care.
    Finally on a more personal note, my daughter is a busy college student. As a nursing student her 12 hr clinical demands ,coursework, and nursing job don’t allow her to choose her own schedule for diabetes tasks. It is not always convenient to remove and replace a sensor at the exact moment it demands. And psychologically there are times she just can’t take one more complicated diabetes task. It’s much more convenient to push the restart button and get on with her life. Also she still prefers that I insert her sensors on the back of her arm. So sometimes she restarts until she can make a trip home for me to take care of it.
    Sorry for the much too long comment. You definitely struck a nerve with me. Cost is definitely not our primary concern for restarting sensors.

  11. On the issue of exactness: I have to say that Dexcom, at least, has been very good about replacing failed sensors for us. But of course we still like to have as much equipment on hand as possible to calm our always-slightly-agitated nerves a bit. The real reason we want to minimize sensor changes is that our 12-year-old daughter is very sensitive to pain. Changing the G4 has always been a traumatic event requiring coaxing, bribing, screaming, crying, comforting, resenting, and sulking. We were hoping the G6 would change all that – so far it’s not too much better but I’m still hoping that the issue now is the lingering psychological effect from the G4. Time will tell.

  12. Perhaps we could do a Monkey Survey to add statistical weight to each of the identified reasons, leaving room for “other”.

    1. It’s not the money. (I have 100% insurance coverage for sensors.)
    2. Is IS the money. (Insurance only covers so many per month, if I need more for a boatload of potential reasons that are not my “fault”, I would prefer not to pay cash out of pocket.)
    3. It is my time. (I don’t have time to report “failures” to Dexcom, await their determination of “fault”, and then wait to receive potential replacement, coordinate shipment…back to the burden.
    4. Being without it is a burden. (Safety with diabetes, loss of flexible lifestyle, having to deal with concerned family members, loss of confidence with insulin dosing, loss of excellent control provided by Looping.
    5. Replacement time is simply inconvenient. (Despite countdown warnings often occurring during the night, often the end of the 7 day wear comes at an inconvenient time. Either you don’t have another sensor with you, or just don’t have the time to replace.)
    6. The fist 24 hours may not be as accurate, especially when considering Looping. (I may restart just for a day or two sometimes so that the first 24 hours may fall during a time period where I have the time in my life to do more fingersticks, when I can keep a better eye on things, when I’m not on a business trip or athletic outing.)
    7. Human Nature, delaying having to endure the 2 hour warm up. (I’d rather this ever 14 days than every 7. OK, so 10 will be a compromise, but I may want 20, however I’m not sure it will stay stuck anyways.)

    I’ve been on CGM consistently since the DAY Navigator came on the market, and then Dexcom the DAY Dexcom received approval. (Literally Sales Rep at a diabetes event received approval news, Endo wrote me RX, Rep called into HQ and got permission to sell me starter kit for cash out of pocket, personal check. ) Now consider an unheard of (for me) 3 recent back to back Dexcom “failures”. (Not really “failures”.) A severely bent sensor wire upon insertion, removed, inserted new. The next day accidentally knocked off sensor from abdomen boarding a boat. (Dove while sensor “falling”, and managed to catch sensor / transmitter, not loosing it.) Inserted new, arm site. Developed sunburn on arm around Dexcom, needed to treat burn and itching near the tape was unbearable, removed, inserted new. Seems so silly, not Dexcom “failures” yet . . . MEDICALLY NECESSARY DEVICE !

  13. “So yeah…it’s medically necessary. It allows my daughter to not have to restrict her life or “take the blame” for having a disease…but rather she can be protected medically as she leads a normal life.”

    Absolutely brilliantly put Katie. Thank you.

  14. We do it to extend a good sensor and have reliable data. Every time we change a sensor lately, it seems to be luck of the draw if the sensor will be reliable enough for us, or even last the full 7 days (g5). If I extend the sensors that I can, then I can be more picky about the ones that are not giving good data, in addition to having more on hand in case of emergencies.

    Also, having to wait over he weekend for a new sensor or a new transmitter if it happens to die on a Friday, is like waiting a lifetime. I don’t want to be in that position. I have brought this up with several rep’s and they seem pretty tone deaf about that fact. Waiting a few days isn’t just a mere inconvenience. So until they have a more steady supply chain besides FedEx’ing from San Diego, I will continue to order our normal amount regardless of how many I have in house.

  15. Simple. We don’t believe in throwing things away “just because”. It’s about being a good steward with that you have (insert Christian beliefs about stewardship here also). Just because the milk is “expired”, we don’t throw it out, we throw it out when it’s spoiled. We understand the ratings of the sensors, the FDA requirements for reliability, etc… In fact, some sensors DON’T last the full week! (It’s rare, but it happens). So, if it’s still producing good, reliable numbers, let it keep working! It’s not about stockpiling or scamming insurance.

  16. My why…

    My current insurance pays 100% of diabetic supplies (except insulin)—so restarts are NOT about cost at all. I restart my G5 so I can build up a backup supply. I also do it because day 1 of the Sensor is crap. I also do it because insertion HURTS. And restarting the sensor is less overhead in my busy life. I really wish the 2-hour window was not a thing.

    I also restart my transmitter (does Dexcom know this is possible?) for the same reason. I am super OCD and on top of my schedule, and I have several reminders in my phone to call Dexcom for new transmitters as soon as I can get them because I don’t want to be without one. I can’t imagine living life without my CGM running for more than a few hours. It’s THAT IMPORTANT to me. It’s a safety net. It helps me pay attention to diabetes more and worry about it less. I’m an ICU nurse. Today we intubated a patient to try to save her life. I was chasing my tail all day. Having my G5 running allowed me to take care of myself and my patients at the same time. That’s a BIG DEAL.

    I now view my CGM as essential. I need to be able to build up a supply cushion. We can’t expect that everything will work flawlessly. Insurance companies and hospitals get mad at “noncompliant”, “irresponsible” patients who run out of insulin. Very seldom do I hear people ask if it’s the system that sets diabetic patients up for failure. We need to have adequate supplies (i.e. some extra) to stay safe.

  17. Our insurance plans covers Durable Medical Equipment at 100%. For us it is not about cost.
    We have had battles with preauthorizations and other HMO barriers that caused delays. Wearing the sensor for more than 7 days allowed us to build a back up stock pile that our insurance would have never approved.
    My kid pricks her fingers on a daily basis, gets site changes every 2-3 days (shots as needed), if she can avoid one more skin puncture she does.
    It’s an inconvenience. Taking time to change a sensor and peel off the one we had add extra adhesive so it could last all 7 days is not something anyone looks forward to. I will not even mention to 2-hour warm up.
    The end of the first session (day 4-7) and the entire second session (day 9-14) are much more accurate.

  18. This is a great discussion.
    1. Accuracy. This is my most important reason. I hate changing sensors. The new sensor might be slow to warm up to being accurate. It might fail completely. Or it might just remain marginally accurate for its lifetime. I absolutely rely on this data to adjust my between-meal blood sugars via temp rate, carb intake and activity. I cannot be without this data.

    2. I have limited “good” areas to use for sensor insertion. Abdominal sites get infected easily and have scar tissue. I have lymphedema in my arms. And I tend to catch leg sites and rip them out.
    3. Supply continuity. If I get less than 7 days, I have a spare. I don’t end up waiting for a shipment of a replacement. If I have “extra” because I am using fewer, I order a little less frequently and gift my extra to someone who needs them.

  19. I use my sensors beyond the 7 days because I need to be able to see where my BG is at at all times. I have much better management when I am able to wear this medically necessary device. Especially since I don’t always feel my lows. Not only do I extend my sensors, I am using a refurbished transmitter and xdrip. Especially since Dexcom hasn’t made their app available for all phones. I believe having CGM has been a life changer for me.

  20. Why do I restart my sensors? Because it still works just as well on week 2, and usually at least half way into week 3.
    Why else? Because its more steps to replace it every week. More things to carry, to count, to set aside time for. The actual physical act of changing a sensor might only take 5 minutes, but thats 5 MORE minutes I don’t get spend doing something else, in addition to all the other minutes I already “give” to diabetes every day/week/month/year. Restarting a sensor is less times a year I have to reorder, its less receipts I have to submit to my FSA, one less conversation to have with or about insurance coverage, its one more month I can get by without having to start chasing down a renewed prescription, its less boxes of supplies to try to take over my supply shelf and that much less garbage to throw away over the course of a year. I suppose its also less money I spend, but even if they were free, I would still restart each one as long as it works.
    Oh gosh, and then there’s the (small but real) anxiety of having to pick a new spot for a new sensor. Sure, they’re mostly painless to insert, mostly easy to keep attached, nearly easy to keep discreet if I so choose, but if I have a good spot currently that doesn’t hurt, didn’t bleed, doesn’t itch (bonus points if it picks up readings while I swim laps) *and*is giving me good numbers, I am surely not going to pull that one without a performance issue!

    If Nike said gym shoes had to be replaced every month, would I do it? Surely some people would, and maybe yeah, everyone would have less smelly shoes and better arch support, but in the mean time, those month old shoes will probably be fine for another month, and if the wearer doesn’t notice decreased arch support and doesn’t mind the maybe-smell, why not keep using them until they legit don’t work?
    I treat my sensors the same way I treat everything- I replace my car when it literally won’t go anymore, I use lancets until they feel dull, I replace my shoes when they are’t comfortable anymore, I eat expired peanut butter unless it seems funky, and I replace my sensor when it’s no longer performing up to my standards. Its a life choice, I guess, but in trying to do more with less, and trying to reclaim little bits of time back from diabetes when/where I can without ill result, restarting a sensor is one easy choice to make!

  21. I extend because the cost of changing on a weekly basis is too high. With limited funding in the UK for CGM through healthcare provision, the majority are in this position. Dexcom tacitly acknowledged that this was an issue in their pricing models as well, offering two models. One for “full” coverage, with weekly replacement and one for “50%” coverage. It’s notable that for the G6, they are offering “full” coverage at a lower cost than “50%” coverage with the G5. Even then, many in the UK find these costs too high and replace batteries in order to be able to continue to use CGM, which is why the Libre “CGM-isation” modules exist.

    As someone who is also a relatively fast reactor to the sensors, I find that day 1 accuracy is often a bit poor, but after day 8, accuracy drops off again, requiring more calibration to maintain good alignment and it’s very rare that I get beyond about 18 days use.

    When it’s all self pay, the robust supply chain and backup plan are in your own power to manage, at whatever cost the system comes to you at. There is no “30 days” or “45 days” supply. You choose that based on what you can afford.

    So why do I restart? To keep the costs lower. It means that my sensor is not as accurate, but it’s manageable. It’s not about supply chain or spare sensors. I’d love to see Dexcom drop their prices in the UK to £55 a month instead of £159 a month. That would massively change accessibility.

    Going back to the CGM use survey we undertook, cost of CGM was cited as the biggest issue with CGM by more than 69% of responders. Outside the US, the cost of CGM really is the biggest driver for extending the use of sensors.

  22. I was taken aback by that article in diatribe as well. I’m not sure why any diabetes blog would be interested in ending a conversation about diabetes. I understand disagreeing but not stopping conversations.
    The reasons I restart are
    I travel a lot for work which means that my prescription refills often show up when I’m gone.
    I find that the CGM is more accurate after the 1st week
    It saves me time and hassle and is one less diabetic thing I have to deal with
    Also I would have no problem paying more for sensors and transmitters that lasted longer.

  23. I received my first G6 on 6/4 and got one box of 3 sensors. I restarted my first sensor and got 19 days. Sensor 2 made it to Day 13. I just inserted Sensor 3 and hope to get at least 15-20 days on it, depending on how well it continues to read. So today is Day 31 of the G6 system for me.

    My insurance claim from my original order was denied on 6/12. I got no letters or calls from insurance or Dexcom, so finally on 7/2 I called insurance to find out what was up. Turned out that a new (yearly) pre-determination form was needed. Dexcom said nothing and has done nothing to get the form completed from my doc. So I printed the form, took it to my doc and they filled it out and faxed it to insurance the next day (7/3). Yay for me… Doing Dexcom’s job for them.

    Well, scanning and routing faxes takes 48 hours. With the holiday, insurance still didn’t have it visible as of 7/6. Then the review normally takes 14 days, tho I marked it as urgent, so now I have to call daily to see if the form has gotten scanned so they can actually *flag* it as urgent and move it along faster.

    I’m on day 31. If I hadn’t restarted my first two sensors, I would – right now – be without my Dexcom, and looking at 2 weeks (minimum) until the paperwork goes thru and the original claim gets paid and then the ordering and shipping of the new sensors gets done.

    Two weeks of trying to manage a pump using finger sticks. Two weeks of not knowing that my dawn phenomenon is kicking my tail and I’ll be fighting nausea and a headache all day because I’m running high. Two weeks of not knowing that I miscalculated that pizza and my sugar is bottoming out and I’m going to bed and may not wake up.

    This is my why.

    1. We have having a parallel issue. My wife has used the G3, G4, and G5. Insurance from work covers it. She was told that she was approved for the G6. We have tried for months to get Dexcom to process the paperwork. They don’t communicate anything. We watched the doctor’s assistant fax the forms (third time) and handed the phone to her to confirm that Dexcom got the papers – and didn’t need anything else.

      A week later, and Dexcom tells us that they don’t have something?! Chart notes, forms, authorization numbers, etc., etc. My wife just restarted her 2nd sensor, and has one more in the closet. The insurance company says they don’t need anything (since she was authorized before), and don’t have papers from Dexcom. The insurance company called Dexcom!

      Whatever they are doing with the papers is crazy, but it causes us lots of anxiety.

  24. I left this comment on your youtube channel today under “G5/G6 restart without 2 hour warmup”:

    “This is superb news!! After reading everything I could about the G6, I asked my Endo in April ’08 about the 10 day cut-off on the sensor and his response was “Well, the company has to make money; but since you have insurance, don’t worry”. I realized then and there that they (Doctors) are bought and paid for, just like our politicians. I vowed to take matters into my own hands.

    I’ve been using the G4 & G5 for about 5 years and after 20 yrs. as an uncontrolled T1.5, I finally got my A1c’s to 7 or a bit below. Insurance or ‘pre-existing conditions’ are no longer a sure thing in this country, so I’m always looking to the future. This method will allow me to buffer my choices going forward & maybe stockpile something for the future. Thanks for your wonderful work!”

    I have 3 “Homes”; The primary home my family has lived in for 32 years, an ‘inherited’ second home directly on a lake just an hour away, and a home we’ve had in Costa Rica since ’78 (curious that you mentioned Costa Rica in the blog). I need sensors at both my primary and secondary homes (mostly used during the summer) in case of failure. I need a box or two of sensors when I travel out of the country. Therefore, I work around the insurance (and now, Medicare) restrictions by using a sensor for a couple of weeks and building up a reserve to use in multiple locations.

    G4’s failed more often than G5’s; however, I have no experience with G6’s until the end of the year when I will be switched over.

    As to my comment “I vowed to take matters into my own hands”. I just want to say that I did a ton of research since April ’08 and finally switched to a LCHF (Low Carb High Fat) Ketogenic diet in May ’08. I’m now off all prescription med’s for Hypertension & Cholesterol and have lowered my Lantus/Novolog by 43%. My joints are improving and my estimated HbA1c is, after two months into this lifestyle (according to my Dexcom readings) looks like 6.3

    I NEED the Dexcom to warn me of high’s and especially low’s. Therefore, it is a medically necessary device as far as I’m concerned.

  25. Our “why” is money driven. We self pay and its frightfully expensive if you dont restart. With the cgm my husbands A1Cs are notably better. The last A1C was worse again because we were saving on the cgm… 🙁

  26. Good article.

    Medical necessity is not absolute, but on the curve, and the curve moves (for the better). When I was diagnosed (1967), daily NPH injections and urine testing were medically necessary. I did my first fingerstick over ten years later (Chemstrip bG — color matching) and first took Regular insulin 20 years after Dx. Went on Humalog when it became available. Humalog is now medically necessary, along with home bg testing (whether by strip or CGM).

    Do I want to go back? Hell, no. Is my life better because of these improvements? Hell, yes — I’ve lived over 50 years with t1dm, which no one in the world had done when I started. Was I lucky to do as well as I did in the early years? Yes, luck has played a major role; many cared for themselves just as well (or better) and did not fare as well.

    Insertion pain is a non-issue for me. Cost is minor, as Medicare pays 80% and Dexcom is way behind billing me for copays. I could build a backup while using each sensor for only 7 days, because Medicare allows me 5 sensors/month. First-day accuracy IS an issue, though trying to use a sensor for more than 10 days gets into issues with end-of-life accuracy (for me). The two-hour gap is annoying, but I’m retired and can generally schedule it with only minor inconvenience. Enabling sensor overlap to avoid the gap would not be rocket science.

    But I also restart sensors just because of the stupidity of the system. Dexcom could sell CGM as a service instead of a product; they would have a far more reliable revenue stream, while users would see predictable cost and less hassle. List price in the US is a bit over $5K/year. I don’t know the average actual revenue per user, adjusted for sensor restarts, insurance contracts, and usage gaps to save money. I’d guess they would bring in about the same revenue if they just charged $10/day and provided all the supplies needed at no additional cost. After all, their cost for the supplies are surely very small compared with the overall revenue stream — it’s the kind of business in which other costs predominate, and the actual volume of materials discarded is minimal.

    This isn’t a new idea. I used a Direct 30/30 meter for a few years back around 1990. Instead of strips, it had a replaceable sensor which cost $30 and lasted 30 days — put a drop of blood on the sensor, get the readout, clean sensor. For someone testing even 4x/day, that represented a major cost saving.

    The inventor — with whom I once had a phone conversation — had the idea of selling it as a service. His idea was that you make a phone call, pay by credit card for as many days as desired, get the meter activated for that time by connecting it to an acoustic coupler (this was the late 1980s, only people in universities and a few large corporations had Internet access), and you would get all the sensors you needed. Users would have no reason to restart; the supplier would have no reason to restrict restarts.

    He had to partner with Eli Lilly, and they wouldn’t have any of it. Instead the sensors were sold as a product, and of course users quickly learned the simple and obvious trick of restarting them to get two or three months from them. And guess what, it was a market failure despite its popularity and obvious advantages.

    Now, I’m sure one issue would be that insurance companies are also set up to cover products rather than services. Seems like it would be worth trying to get that changed.

    When will we ever learn …

  27. My “Why?” – I was diagnosed with T1D on my 7th birthday in 1968….50 years of diabetes has left me with NO hypoglycemia awareness, and a long list of complications. Okay, so how long? Laser surgery in both eyes for retinopathy, 6 cardiac stents and a triple by-pass, a kidney transplant, cataract lens replacements AND ablations in both eyes, 5 trigger fingers and the inability to fully open or close both hands, severe osteoporosis that has led to many broken bones, chronic nerve pain from a couple of broken vertebrae. I’m partially disabled and unable to work and I’m only 57. Guess I got the really unlucky genes.

    And yet, I get up every day and try to enjoy life in while striving to keep my diabetes “in control.” I’ve been using a Dexcom CGM and a pump for more than 15 years and without my Dexcom, I wouldn’t be here. I can’t even count the number of times my Dexcom has alerted me (when I was conscious) or my husband (in cases where I was unconscious or asleep_ and we were able to treat my low blood sugar with glucose tabs or glucgon injection. and on the other side of the coin, Dexcom is why I can now keep my A1C in the 4.8 to 5.0 range. I can see if I need to make adjustments to stay in range; I can see if my pump isn’t delivering insulin effectively; I can keep my glucose in range most of the time. If only I had this technology sooner, I might not have suffered from this plethora of complications.

    Do I restart my G4 sensors (I’m scheduled for a G6 upgrade tomorrow!)? Yes. Why? Because I can’t live without a live sensor. I restart so I can build a small reserve of sensors for those times when the sensor won’t stay calibrated, gets ripped off, falls off, or fails for some reason. I can’t wait even a day for resupply from Dexcom or my 3rd party supplier. What if that’s the day I go into convulsions and need a glucagon injection?

    Transmitters and receivers are a whole different ball game. I have to buy my insurance via the Affordable Care Act, which means I have a different plan every year. In the last 2 years, by luck and by clevery working the insurance system, I managed get a backup transmitter. Somehow, My last 2 G4 transmitter lasted a longer than a year , so each January, I schedule an appointment with my PCP on Jan 2 and with my Endo 4 days later. I get a referral from mt PCP to my Endo; I call the insurance company to get my referral approved in a couple of days vs. more than a week; I get my Endo to prescribe a G4 transmitter and sensors; I call my DME supplier to expedite the order; I get a new transmitter that I tuck away while using my existing one until it literally quits; and as a result, I have a transmitter on hand to restart my system. I spend 30 or 40 hours working the system to ensure that I have a working, medically necessary CGM. I do the same thing with my Omnipod system.

    WHY? WHY? WHY? should I have to go thru this demanding and complicated routine every year just to stay alive? Because Dexcom and insurance companies don’t think my CGM is medically necessary. Because Dexcom won’t provide a backup transmitter and/or receiver (by the way, they are going to send me replacements when they fail anyway). Because insurance companies won’t allow me to have even 1 spare sensor or transmitter or Omnipod on hand. Because companies and bureaucracies don’t care about me as a human being….they care about the bottom line. Always follow the money. And at the same time, I PAY about $10,000 a year out of pocket to get these devices and supplies. I don’t mind paying…..I’d like to pay for a system that doesn’t leave me unprotected on a regular basis.

    We are nothing but cash cows for the medical device industry and nothing but expensive liabilities for insurance companies. Dexcom will still have plenty of customers if/when I die from complications of diabetes and the insurance company will have better profitability when I kick off. That’s why.

  28. One more reason I restart sensors….after 50 years of T1D, injections, pump infusion sites, Dexcom sensor insertions, I am running out of usable real estate…..in spite of rotation, I have scar tissue and epidermal erosion in all of my “usable” site areas. Once my legs, arms, abs, back, butt and all the other places I have to use, things stop working. Insulin won’t absorb well and Dexcom won’t calibrate and read correctly if inserted in one of these heavily used areas. I find it harder and harder to get good results with my Dexcom and pump.

    This is WHY….Every time I can extend a sensor, I can save my body from more damage – I can extend my ability to use CGMs and pumps and injections to manage my diabetes. What happens when I run out of usable real estate….I really don’t want to know.

  29. Thanks for your job! It is really helpful!!
    .
    Let me share my little story. I’m from Ukraine (seems like it is the center of Europe, but not such a great country, unfortunately). My husband have type1 diabetes. Here in Ukraine we have no CGM approved by HEALTHCARE MINISTRY. So we can’t buy Dexcom or Libre here legally. Nevertheless we did this for about a year. But now there is no supply for this device anymore.
    I want to ask you kindly. Is there anyone who can sell Dexcom G5 with transmitters, or, even better – G6?
    If yes, please contact me!
    Skype angofang
    WhatsApp +380632038382

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