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.

The Crusade Continues

Sue B_Head Square

As 2013 comes to a close, I can’t help but think about all the ways that I’ve grown this year.

At the start of  the year, I was waiting to hear from the Administrative Law Judge’s office to find out when my husband was going to get a date for his Medicare appeal for his CGMS. Before we actually got the date, I saw a Letter to the Editor in Diabetes Forecast Magazine from Janice Allen in Foresthill, California asking why Medicare would not cover her CGMS. That prompted me to Google her name and attempt to find her address. Fortunately Google is an amazing tool and there is almost nothing that you can’t find on it. I wrote Janice a letter and was pleasantly shocked when she called me within a few days of mailing it. That was the start of my advocacy. After I spoke to her, I decided that something needed to be done to change the Medicare CGM guidelines and if not me, who else? I was really tired of sitting on my hands and taking chances day-by-day with my husband’s life because he didn’t have a working CGMS.

I started surfing around the internet and came upon the American Diabetes Association Forums.  I found a post there from a woman in New York with a reference to CGMS. So I put a comment on the post and that started a wonderful friendship with Sue from New York. We quickly became fast e-mail friends and that translated a short time later into phone friends. Through her, I met Laddie who graciously offered me the opportunity to guest blog on her site. Laddie is one terrific person. Aside from the fact that she’s a gifted writer, she’s a good friend as well. She’s my go-to person for education about diabetes since I am not a diabetic and there is so much that I don’t know about it. She has also helped me tremendously as I navigate the blog world as a regular contributor to Test Guess and Go.

After my first blogpost I started hearing from others who were experiencing the same problem as my husband. They also were denied coverage of the CGMS. All are on Medicare; some are paying for their CGMS out of pocket and others, like my husband are going without. All are suffering in some shape and form because of Medicare’s decision not to pay for the CGMS.

Recently I was fortunate to connect with a Massachusetts woman, Carol Lewis, who shared the information that on December 11, 2013, Congresswoman Carol Shea-Porter of New Hampshire introduced a bill into Congress addressing the problem of CGM coverage by Medicare:   H.R. 3710: Medicare CGM Coverage Act – to amend title XVIII of the Social Security Act to provide for coverage of continuous glucose monitoring systems (CGMS) as durable medical equipment under Medicare, and for other purposes.  In this bill, CGMS coverage will include a transmitter, receiver, sensors, and test strips required for use. This is the first time, to my knowledge, that anyone in either Congress or the Senate has attempted to do anything about CGMS coverage. In early 2014 I will be posting more information about this bill and asking everyone to contact their Congressperson to request that they support this bill.

I have always shied away from calling attention to myself, but over the past year I have found that this is no longer possible. I have a husband who has a specific need and that need is a CGMS which for him is lifesaving. I can’t sit around and watch while he goes day in and day out without one. I also can’t sit around and watch anyone in the future who might need a CGMS go through the same process that we have been going through. It’s long and arduous and there have been many times when I’ve felt like throwing up my hands and packing it in. But each time I’ve felt this way, someone has been there to encourage me to continue.

New Year Crusade

I say that it’s my year of growth simply because along the way, I have learned so much about diabetes. I know that I have much more to learn. Along the way, I have met many people who have now become a part of my life. I have blogged. I have developed a relationship with Jim Bock of Diabetes Forecast. He has been a great source of help in having our story told in the magazine in the December 2013 issue. And recently I have developed a relationship with Congresswoman Shea-Porter’s legal assistant as well as Amy Wotring of the American Diabetes Association.

I thank each and everyone who has read my blogs and responded with a comment. I thank Sue and Laddie who have been an integral part of my journey. Most of all I thank my husband Marc who has been my life partner for the past 44 years and who is the reason why this is so important to me. I hope someday in the near future that Marc will open our front door to find a box containing a brand new CGMS that has been paid for by Medicare.

To everyone, I wish you a Happy and Healthy New Year.  You will be hearing more from me in 2014.



My Eight Days of Chanukah Wish List

Sue B_Head Square1.   I wish that frying potato latkes wouldn’t mess up my entire kitchen. The oil gets all over everything and grating potatoes is a hard thing to do.

2.   I wish that I lived part time in Atlanta so that I could see my two children, my son-in-law and granddaughter more often.

3.  I wish that in my retirement years I didn’t have to spend so much time trying to fight Medicare for a CGM for my husband.

Menorah4.  I wish I could be a kid again for the 8 days of Chanukah so that I would get 8 gifts, one each night.

5.  I wish that Laddie, Sue from New York and myself could sit down together and have a cup of coffee.

6.  I wish I could eat anything that my heart desired and not gain any weight.

7.  I wish that I could tweak my nose and have my house magically get cleaned.

8.  Most of all, I wish the decision from our Administrative Law Judge would get here. Waiting for over five months…and still waiting…is way too long.

Dear Judge Smith

Sue B_Head SquareDear Judge Smith:

It has been over four months since June 26, 2013 when my husband had his Administrative Law Judge hearing with you in order to appeal Freedom Blue’s denial of coverage for his Continuous Glucose Monitor (CGM).   My husband, his endocrinologist and I all testified regarding the necessity of him having a CGM to prevent a catastrophic episode of hypoglycemia that could cause him to lose his life because of extremely low blood sugar.  We presented you with numerous charts and exhibits so that you would understand how quickly his blood sugar can plunge from normal to low with the result that he can’t make the necessary corrections by himself.  In some cases, he has had to be revived by the EMS.

To date, we have heard nothing from your office.  We are anxiously awaiting the determination and thought that it would come in a timely manner due to the seriousness of the situation.  We were originally told that we would get the decision in four to Mailboxsix weeks.  After four months we are now well past that period of time.  I called your legal assistant and was told that we could not get any information until the decision was mailed.  All he could tell me was that it was “in queue.”  What does that mean?  Do we have to wait weeks, months or even longer to find out whether we got a favorable or an unfavorable decision?  In the meantime, each and every day of my husband’s life, I worry.  From the time he leaves the house for work until the moment he gets home at the end of the day, my mind is constantly wondering and praying that he’ll come home to me safely.  Our frustration is at an all time high.

There is something so wrong with the entire system.  There are many men and women in the same position as my husband who desperately need the CGM and sensors and can’t afford them.  There are many men and women who have gone through or are now going through the Medicare Appeal process who will have to wait for many months in order to get their decisions.  Does someone have to die before any of this changes?   I sincerely hope not.  In the meantime, we wait and wait and wait each day for the mail in hope that the decision will finally be here.

Very truly yours,

Sue from Pennsylvania