A Crusader for Medicare Coverage of CGM

Please welcome Sue from Pennsylvania who will be a regular contributor to my blog. Sue is the wife of a Type 1 diabetic and a crusader for the coverage of Continuous Glucose Monitoring Systems by Medicare.  I will be Medicare age in four years and Sue is fighting the battle to help her husband and everyone like me who follows in his footsteps.


Sue B_Head SquareThis is my very first blog post, so here goes.  I am the wife of a diabetic.  My husband has had Type 1 diabetes for over 15 years.  He’s been on an insulin pump for most of that time.  About five years ago, he got his first Continuous Glucose Monitor (CGM) and it made a tremendous difference in his life.  He has brittle diabetes, hypoglycemia and hyperglycemia unawareness and before he got his CGM , would have episodes of very low blood sugar and in many instances, pass out because of this.  With his CGM, this no longer happened.

In June of 2012, he reached 65 and had to enroll in Medicare.  Since then, our life has been somewhat of a nightmare.  His CGM, at that time, was over 2 years old and starting to act up.  It no longer gave accurate readings and at times when he would go low or very high, it would no longer sound an alarm advising him to take immediate action.  When his endocrinologist wrote a prescription for a new CGM, his insurance company denied payment because unlike our private insurance, Medicare does not consider it a necessary device and in their words it is just a “precautionary” device. We have appealed the decision and had a hearing with an Administrative Law Judge on June 26, 2013 and are now waiting for the Judge’s decision.

For five years, my husband was able to lead a normal life without the constant worry of going into a state of confusion or comatose, especially when driving.  Now all that has changed and it’s put indescribable pressure on both of us emotionally and on him physically as well.  Having these peaks and valleys in blood sugars makes him tired and out of sorts most days.  Since he is gainfully employed and does quite a bit of driving in his job, it’s a constant source of worry that something awful will happen when he’s out on the road.

CGM CrusaderIt’s so hard to wrap our brains around the fact that something that is so lifesaving to my husband (and myself) is being denied by Medicare.  This is especially troubling in the face of the fact that our endocrinologist has gone to bat for us so many times during our quest to get a new CGM because she considers it of the utmost necessity for my husband.

Our hope is that our ALJ rules in our favor and that our insurance company upholds the Judge’s ruling.   After this happens, my mission in life is to have Medicare change their guideline for Continuous Glucose Monitors.

37 thoughts on “A Crusader for Medicare Coverage of CGM

  1. I love the illustration. Please let us know how this case goes. Are there ways we can ‘influence’ what Medicare covers, I’d love to work a bit on that. Medicare is less than 10 years away for me and I don’t want to live without my Dexcom.

  2. Indeed, it is agonizing to see a gigantic government agency try to decide what should or shouldn’t be paid for by taxpayer dollars – or, should I say, money borrowed from China.

    There are a lot of sick, desperate people out there begging for help; and we must all examine our consciences about whose needs are going to come first – and about sacrifices each of us is prepared to make to pay for health care.

    What do we deny to whom in order to pay for an insulin pump?

    • Do you know how important a CGM is to a diabetic who has hypoglycemia and hyperglycemia unawareness? It what keeps him alive. My blog had nothing to do with an insulin pump. However, both the CGM and the insulin pump are extremely important to a diabetic. If Medicare pays for erectile disfunction surgery and medication, then perhaps that is the question you should ask about what gets denied for payment.

      Laddie’s answer to you is spot on. I really don’t need to add to her answer. She did quite well.

      • I have been a juvenile diabetic (type 1) for 54 years, who also has hyper and hypoglycemia unawareness..Insulin pump was not advantageous for me, however dexcom CGM monitor is a lifesaver. I have no serious complications and have received a 50 year medal from the Joslin Diabetes Center. Problem I have not found Medicare or Supplemental plans that will cover even part of the costs. I am exploring the option of going to Canada to obtain sensors and replacement of transmitter and receiver when they fail. Has anyone had success in doing this.i .

      • From what I have been told, and I’m not entirely sure if I’m correct, but you can’t get the device or sensors from Canada at any savings. My husband’s diabetes educator says that they are distributed entirely through the company (either Dexcom or Medtronic), and you can not find them cheaper anywhere. I would love to speak to you further so if you want to contact me, you can email me at mmb47a@comcast.net. And if anyone can back up or dispute my facts, I would be interested in hearing from you.

  3. It is indeed a can of worms as to what gets paid for and for whom. I truly don’t know the right answer. It starts to be a very slippery slope when we start addressing these issues. Do you deny heart surgery to someone with Medicare because you can use that money to pay for flu shots for 10,000 people? How about a hip replacement because anyone over 65 can use a wheelchair or crutches instead?

    The device that Sue is arguing for her husband is a continuous glucose monitor (CGM). Insulin pumps are currently covered by Medicare for those with Type 1 diabetes and that is not what Sue is discussing. I currently use a CGM and it is covered by my insurance. By alerting me to lows below a specified range, it allows me to take corrective action while my blood glucose is high enough for me to function. Like many people with long-term diabetes, I don’t feel most of the symptoms that you would feel if your blood glucose went low. In my early years of diabetes, I would start sweating, shaking, etc. when I went low. Now I often feel perfectly normal at dangerously low blood glucose numbers. Undetected lows are particularly dangerous at night.

    So the argument and the justification for a CGM is that it protects me from severe lows that can lead to seizures and even death. It is expensive, but the annual cost is significantly less than one trip to the ER much less any hospitalization. The system also alerts me to highs so that I can reduce the time I spend at high blood glucose numbers that lead to long-term complications such as blindness and amputation. For those of us with all kinds of diabetes, it is a frustrating scenario that Medicare will pay for the treatment of the many devastating complications of diabetes such as dialysis, amputation, and strokes and will cover the ER visits for severe lows. But then it refuses to pay for the technologies and many of the supplies to prevent those things from happening.

    Continuous Glucose Monitoring is still an evolving technology, but I have been using a CGM for about 5 years and it is no longer a totally new and unproven technology. My current CGM system is incredibly accurate especially compared to the first system I used 5 years ago. Insurance companies are increasingly covering this device for people with Type 1 diabetes and recognizing it to be a proven technology and justifiable expense. When I reach Medicare age, I will have used this technology for almost ten years with full insurance coverage.

    Do you expect Medicare along with a supplemental insurance program to cover your justifiable medical expenses when you reach age 65? I assume that you do and so do I.

    • Whenever we can justify a treatment on a cost-benefit basis, that is very positive for public health as well as for our finances. These arguments should be brought to the table and readers of this blog appear ready to do just that.

      What do I expect from Medicare?

      First, I expect to spend a lot of my own money for health care in old age. For this reason, we will downsize, work longer, continue to drive 10 year old vehicles, and generally live *below* our means. We read in the press regularly that we should expect to spend $250K in addition to Medicare in old age, and that is for current retirees so should be multiplied by a factor of [?] – and that is without any luxuries whatsoever.

      Second, I have seen publicly- funded medical care in action in years of living in several European countries. It provides the basics, period. And so will Medicare, in the best case. For example, a dear friend in radiation therapy for lung cancer spent long months with catastrophic nausea and dwindled almost away before French doctors were allowed to prescribe the better, more expensive drugs that prevent nausea. Another French friend was diagnosed with Parkinson’s but denied an MRI because of the cost (and because it wouldn’t cure her!); she then went to another country where she was allowed to pay for her own MRI. My own father-in-law in Switzerland, a country with private insurance but tightly controlled medical costs, was denied an operation for an aortic aneurysm because it “wasn’t worth it” at his age and with his myriad complications – and then sent to a hospice where he died under palliative care.

      These are only anecdotes, but they tell me that no third party is going to pay for the kind of care I will WANT in old age, and that I had better live frugally and lower my expectations….and pray for the politicians who are going to have to play God.

      • In the USA our politicians have not been willing to take the huge step to approve National Health Insurance. I find it very ironic that we are fighting to maintain our health system which has both poorer health results and less satisfaction ratings by our citizens than those of the many other developed countries with national health insurance.

        Under our current system I will continue to fight for access to every technology, supply, and drug that will help me maintain my health and maximize my benefits.

        I think that it is only a matter of time before we join the rest of the world by having national health insurance that guarantees a certain level of health benefits for every citizen. But it is going to be a long drawn-out fight and I think that those of us with Medicare in the coming years are going to see the worse of both systems.

        So no, I don’t really expect Medicare to pay for everything that I want and/or need. But I will fight for myself and my fellow citizens with diabetes to have access to the supplies and technologies that will enable us to live our senior years in good health.

  4. Very well said Laddie!

    I would like to add one point. The Continuous Glucose Monitor keeps not only us safe, but others as well. Because we have a disease that affects our mind when blood sugar is low, we need to use whatever device we have available to protect us and others. When we are driving and our blood sugar drops rapidly and we aren’t aware of it, the monitor alerts us and we have time to take corrective action before an accident occurs. Common sense dictates that diabetics on insulin should have this device.

  5. Sue, your point is so valid. I know from first hand experience what can happen when you are driving and the blood sugar plunges. It is of the utmost importance for a diabetic on insulin to have the CGM, not only for safety on the road, but what about any type of job that could possibly involve injury to the diabetic or anyone around them when blood sugar goes so low that you have no control over yourself. I firmly believe that if your doctor thinks that it is of the utmost necessity (as our endocrinologist feels with reference to Marc), then it shouldn’t be up to any insurance company, whether it’s private or Medicare, to question the doctor’s request, especially in cases of brittle diabetes with hypoglycemia and hyperglycemia. When Marc got his initial denial from our insurance company and we started the Appeals process, Maximus Federal Services, the company that reviewed our case stated that they upheld the Medicare’s decision and that the case was reviewed by “an emergency room doctor”. Is that crazy or not. When Marc had to go into the hospital for a procedure, most of the doctors’ had never seen a CGM and were in awe of it and what it could do. Did this emergency room doctor really have knowledge of the CGM.

  6. Probably not.
    And you’re right about safety on the job. The boyfriend of a friend of mine, a type 2 diabetic on insulin, owned a logging company in Maine with his son. The boyfriend would operate a piece of machinery. His son became concerned that his father would become hypo and hurt someone, so he convinced his father to retire.

  7. I too am on Medicare, primary insurance, a type 1 diabetic and am trying to get my Dexcom CGM covered by Medicare. Dexcom billed them directly, of course it wasn’t paid. I’ve been paying upfront monthly for my sensors. My Endo wrote a letter, expressing the necessity of me having a Dexcom CGM (stating why, brittle, etc..) and I submitted it about a month ago to medicare. I haven’t heard anything yet.

    • I sent you an e-mail yesterday and hope you got it. If not, let me know. I would like to know more about you.

  8. After viewing my documentary film on the CGM. Sue contacted me to help with her husband’s CGM appeal with Medicare like I did for Jill Whitcomb. As most of you know Jill’s “FULLY FAVROABLE” decision and order for her CGM is being appealed by her Medicare provider “ United Healthcare”. People always ask me why are they appealing the decision for Jill’s CGM when it would save them money instead of paying for all of Jill’s emergency treatments due to her hypoglycemia events. Simply put, an insurance company is a business to make money. Medicare insurance providers charge the US taxpayers for these emergency services over and above their standard billing rate. In view of the fact that Jill’s Medicare insurance provider would cover the CGM if Jill were on their standard policy will make their appeal frivolous if this matter goes to federal court.

    • Hi Dan, I too am type 1 on medicare and they are not paying for my CGM. I have a final hearing in front of ALJ in Feb 2014. Is there anything you can tell me about Jill’s “Fully Favorable” decision, when and how it was obtained? I will pass info along to my attorney and perhaps it could help. I am looking for all the favorable decisions I can find. I have heard of two other favorable decisions prior to Jill’s.

      Rick W

  9. I have spent more than three years on this issue amd have posted on Insulin-Pumpers.org. I am not into blogging but have exchanged emails with Laddie and Sue. The bottom line is that the policy articles that have become Local Coverage Determinations (LCDs) throughout the country all use the exact same language: CGM coverage is denied because it is precautionary! This policy article (NHIC A33614) was written by a bureaucrat and became Medicare policy..

  10. add me to the group,medicare is my primary,blue cross my secondary.. bluecross aproved it in january ,i have my dexcom and now bluecross wont pay for it denied,over $8,000 due

    • I don’t understand how or why BC approved your CGM. The primary insurer is Medicare, Your secondary cannot pay unless Medicare first approves your claim. Medicare will not cover the CGM claim, therefore your secondary must follow Medicare guidelines. Your only hope is to to find a Medicare Advantage (Part C) plan that will cover CGM as an extra benefit. I live in Rochester, NY, and receive CGM coverage from my BC/BS MA plan with a 20% coinsurance.

      • I should correct myself it has not been denied from my bcbs, just has’nt been paid yet,.only been 8 months,. they are expecting to get paid,i don’t have a bill yet my prescription plan is through medco,,express scripts,

  11. Hi Sue, I WANT TO JOIN YOUR CRUSADE! I am a Type 1 diabetic for 31 years, using a insulin pump since 2000, and a CGMS since 2006. Private insurance covered the cgms – no problem, but of course Medicare has denied coverage. I am at the ALJ stage in the appeal process. I applied in August and am awaiting a hearing date. I would so like to hear about what information you submitted, and your experience at the hearing. I used the LCD/L11530 and NCD/40.2 language{ along with medical info, doctors med. necessity letter, etc). When you win your appeal and I win mine – I’m not stopping until CGMS is covered in the same way a insulin pump is – maybe we can work together on a standard package for submittal to share with others who are in the same position that we are. One last thing, can you tell me how to get in touch with Dan. I would like to ask him about his experience at the Whitcomb hearing, as well

  12. Can anyone report anything new on the appeals that have been filed? I’m assuming that no news is bad news.

    • It has now been 13 weeks and 1 day since the hearing and so far, all I know is that the Judge made his ruling and it’s in “que”. When I called about a month ago, I was told that they could tell me nothing. When I asked how high it is in “que”, I was told that they couldn’t tell me. When I asked if it would take days, weeks or months until we got notified of the decision, once again I was told that they couldn’t tell me. When I asked if they could tell me what the decision was, again I was told that they couldn’t tell me. So we wait and wait and wait. Everytime the mail comes, I zoom out to the mailbox hoping that there will be something and every day it’s the same thing. And every day I thank my lucky stars that we got through one more day without an episode of hypoglycemia. If anything, my husband has been too cautious and if he feels the slightest bit off, he takes immediate action even though it might not have been necessary.

      Thank you for asking and I promise that the second we get a decison, whether favorable or not, it will be posted immediately.

  13. Please add me to the list on the pursuit of Medicare coverage. My husband is almost 40 years Type 1 diabetic with hypogycemic unawareness. Medicare denied covered, but our BCBS of NE secondary plan has been covering his CGM and supplies after appeals and jumping through the hoops. As of 1-1-14 that policy becomes supplemental to Medicare and won’t cover the CGM. I have an appeal to Medicare’s denial in process that I sent on 8-20-13. I would appreciate any information that would help the appeal process. I also plan to continue to fight for others to be covered by Medicare. I’ve been told that some state’s Medicaid recipients have cgm coverage. I don’t know if this helps the cause at all. Sue, I am most interested to hear the results of your husband’s appeal.

    • Judy…
      Please get in touch with me at mmb47a@ comcast.net. I would love to speak to you further.

      • Hi Sue, I have ALJ hearing in Feb 2014 for same CGM issue. Have you heard anything yet. Also have you any information on “Favorable Decisions” from others. I am looking for cases to give to my attorney and bring up in my pending hearing.

      • Hi Rick:

        I sent you an e-mail but don’t know if you got it. I also posted a message on my blog. I would love to hear from you. Please get in touch with me either at mmb47a@comcast.net or if you prefer, you can call me at 717-652-0615 EST. I think that I have a lot of useful information to help you in getting prepared for your hearing.


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