Sue B_Head SquareUNFAVORABLE….a word that I really didn’t expect to see. Eight long months of waiting for a decision and when it finally came, it was UNFAVORABLE.

In June of 2012, my husband Marc, a Type 1 diabetic with hypo and hyperglycemic unawareness, entered the Medicare system. A few months later, his Continuous Glucose Monitor (CGM) malfunctioned and needed replacement. His private insurance had always paid for the CGM and sensors without any question, and it never occurred to us that Medicare wouldn’t pay as well. We were wrong. Soon after his endocrinologist sent in the prescription for a new CGM, we were notified that our supplemental insurance, Highmark Freedom Blue, had denied coverage because under Medicare guidelines, CGM is “precautionary” and not covered. Thus began the long road through the Appeals process.

I have been writing of this journey for the past eight months on this blog site. We went through Levels 1 and 2 rather quickly, but Level 3 with an Administrative Law Judge (ALJ) was frustrating to the point of wanting to pull out our hair. There are approximately fifty-six ALJ’s spread throughout the United States and most of the hearings are by telephone. Our telephone hearing was on June 26, 2013. Prior to that date, we sent the ALJ documentation that included a graph of Marc’s blood sugar over a period of a month and various research articles from experts in CGMS. Also included were our statements explaining how our lives had been before the CGM and how they had improved once Marc had a CGM. And then of course, we described how our lives had reverted back to what it was in the pre-CGM days. We also sent a letter from Marc’s endocrinologist explaining how the CGM works and the importance of Marc having one. More details of this story are outlined in my blogpost “A Crusader for Medicare Coverage of CGM”.

We had our telephone hearing in Marc’s endocrinologist’s office. Marc, his endocrinologist, and I all testified. I wrote about this in my “Dear Judge Smith” post and described the frustration we experienced in the months waiting for the Decision to be made. When I wrote that blogpost, we had already been waiting four months. During the next four months, I periodically called the Judge’s Legal Assistant and practically begged for help. Each time I was told that he was not able to divulge any information, that it was on a first come, first serve basis, and that our decision was in “queue” waiting to be drafted.

On Tuesday, February 25th, after eight very long months of waiting, the decision finally came. I was expecting a FULLY FAVORABLE DECISION. I had seen at least five FULLY FAVORABLE DECISIONS from other people whom I had been in contact with over the past months. Their cases were so similar to my husbands that I thought there could be no other decision. Much to my surprise, when I opened the envelope and pulled out my husband’s decision, it was an UNFAVORABLE one. The Judge stated:

While very sympathetic to the appellant’s medical conditions, the ALJ finds that in accordance with guidelines presented in L11520 and Medicare Advantage Medical Policy Bulletin Number E-15, the plan is not required to preauthorize or cover a continuous glucose blood monitor and accessories, because the device is not covered under Medicare’s rules and regulations or otherwise under the EOC.”

The Judge acknowledged that the “appellant has brittle diabetes, and hypoglycemia and hyperglycemia unawareness. His diabetes is difficult to control and his blood glucose fluctuates widely. He has used a continuous glucose monitor for several years prior to enrolling in Medicare. The appellant’s glucose monitor was covered under his private insurance policy with Highmark Blue Shield prior to enrolling in Medicare”.

I understand his statement. However, I have a copy of a different Judge’s decision in a similar case and his ruling was:

“Policy Article A33614 calls continuous blood glucose monitoring “precautionary. The logic of this Policy Article is flawed in this respect and I decline to follow it”. He then goes on to say that “After all, isn’t all blood glucose testing precautionary whether using a continuous blood glucose monitoring system or glucose meter and test strips—as both methods can only tell you that your blood sugar is too high or too low or normal.” He continues “Still further, while the device could arguably be classified as “precautionary” (at least in those instances where the reading is not hypoglycemic or hyperglycemic) they are no more precautionary than standard blood glucose monitors and test strips that are covered my Medicare”.

Furthermore, this gentleman’s hearing was on October 29, 2013 and the Judge rendered his decision on November 6, 2013, just a week after the hearing…not eight months after the hearing.

Two Judges hearing very similar cases and two different opinions. I guess we got the wrong Judge.

Unfavorable_3We are going to soldier on and are now preparing for Level 4.  We will draft an argument explaining why we disagree with the Judge’s decision and present it to the Medicare Appeals Council (MAC). I don’t know what to expect from this. In my perfect world, they would overturn the Judge’s decision. But I am not so sure there will be a perfect world for this. Still I have hope—-or at least try to have hope.

I hope that you have read my blogpost “Join the Crusade”. If you haven’t already done so, please follow the links in the blog and write your Congressperson to let them know how important a CGM is to the health and safety of any diabetic with hypoglycemia unawareness. We need to show our support for H.R. 3710, the Medicare CGM Coverage Act that was introduced into Congress by Congresswoman Carol-Shea Porter. Also, you can go to https://www.popvox.com/bills/us/113/hr3710 to quickly vote to support this bill. It only takes a few minutes and if you fill in the general information, your Congressperson will be notified of your support.

As I have said repeatedly, this issue is not only important to those on Medicare now, but also to the vast number of people who will be entering Medicare in the future. Believe me, you don’t want to have to go through the frustrations that we have experienced fighting for Medicare coverage of the CGM. It’s 100% exhausting, time consuming and frustrating.

UNFAVORABLE….a word that I really didn’t expect to see.

15 thoughts on “UNFAVORABLE

  1. This is so disheartening…I posted and boosted a link to this on my Facebook page today. ALL of us need to join in the fight to help you help your husband…..because one day in the near future, it could be us, too!!!

  2. Sue, I am so sorry (and so angry) that this decision was made, especially after it appears that it’s all based on the subjectivity of a judge. You’ve got my support and voice…

  3. Sue, I’m very sorry to hear that your ALJ was neither sympathetic nor timely. When you go before the Medicare Appeals Council, I would definitely have evidence of any favorable decisions made in cases similar to yours. Precedent sometimes helps. Good luck.

  4. Thank you to all who responded to my blog. It was such a disheartening moment when I opened that envelope and saw the decision. I will definitely make sure that I send all the FAVORABLE decisions to the Medicare Appeals Council but have a strong feeling that they will uphold the Judge’s decision. I wish there were an easy way to solve this but it seems that it’s going to be a long and ardous fight…and it shouldn’t be. If they only understood exactly how important a CGM is…or if they could see in real time how a person is when they have a hypoglycemic episode, maybe that would persuade them. In any event, we plan to continue on to Level 4 and see how that goes. It’ll be a huge decision if we have to go to Level 5 and Federal Court but will cross that bridge when we come to it.
    In the meantime, the support we’ve been given is truly appreciated and I thank everyone from the bottom of my heart.

  5. I’m really sorry to read this – for your sake and mine. I’m a year away from Medicare and like others, will join your struggle to get this changed.

    • Like Colleen, I’m a year away from Medicare. This was a very disheartening decision by the ALJ for Sue and her husband. We all need to work to get the law changed.

  6. It’s so sad that Medicare hasn’t caught up to the technology and NEED for these devices. It scares me because even though I’m many years from Medicare age, I may one day be in the same situation. Keep fighting. You’re doing it for you, but also for so many others on Medicare (and those who will be in the future).

  7. Umm…what can I say? This absolutely stinks (I’m choosing my words politely). With that said, I can’t say that I’m entirely surprised. A judge’s role is to interpret existing laws, and as he stated, the rules – as written – do not cover CGM. Judges are supposed to disregard emotion or sentiment.

    Some judges, like the other one you mentioned, will dig deeper to see if those rules are contrary to the spirit of other rules on which they are based. Thankfully for you, he did that. I don’t know if you cited that other ruling in your plea (or if it chronologically was even possible), but I’d suggest finding legal representation for your next appeal who will grab hold of that other ruling and pursue it further. Some judges can be lazy, and it takes the appelant to tell them what choices they should make and why — they won’t do the research themselves.

    I’m sorry if this sounds “cold” and lacking emotion, and I hate that a timely (and costly) legal proceeding could be ahead of you. But I want to make sure your husband ultimately gets the coverage I believe he SHOULD get, and hope this helps towards that path.

    Best of luck to the both of you.

  8. Doctors and people listen to numbers. Time to start finger pointing at hba1c. In Europe I have to pay for everything. BUT since I have Dexcom (like 3y) my hba1c is on high edge of healthy person. Without it no way to be in that range.

  9. This is unbelievable. We will keep fighting as long as it takes! When I first tried to get my CGM they told me no one in my state had ever been approved. When I tried again a year later, there wasn’t even an appeal needed. We can do this with Medicare too! I have to believe that!

    • Once again, thanks to everyone who has read and made a comment on my blog. All the positive feedback I’ve been getting gives me the incentive to keep on fighting for changing the guideline for the CGM. It’s somethign that needs to be done.

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  11. Sue,

    I went through the process, 4 levels of appeal, and received UNFAVORABLE decisions each time. When I filed my appeal with the MAC, I included a FAVORABLE decision from an ALJ in a case very similar to mine. The MAC judge stated that one case was not a precedent for another. It all depends on the judge who is assigned to the case. This is all very frustrating! Have you heard anything from The Level 4 MAC appeal by United Health, contesting the FAVORABLE decision in the case you cited? The odds are stacked against us. HR 3710 is our only hope and that is a long shot.

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