Dear Judge Smith

Posted on October 28, 2013 by Sue from Pennsylvania

Dear 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 six 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

A Frightening Lesson for a Spouse

Posted on August 8, 2013 by Sue from Pennsylvania

In 2000 after my husband Marc had knee surgery, I experienced for the first time what severe hypoglycemia looks like. After being cooped up in the house with Marc for over a week, our son came for a visit and I decided to take the opportunity to visit a friend who lived a few houses from ours. When I left the house, both my husband and son were sitting on our family room sofa watching television.

I was gone for no more than an hour. When I came home, only our son was on the sofa. I asked him where his dad was and he said that Marc had gone upstairs. I went to check on Marc and found him face up, half on and half off the bed. He was drenched in sweat and his eyes were fixed and staring. I tried to speak to him and got no response. I had no idea of what was happening. I yelled for our son who came bounding up the stairs and was as shocked by what he saw as I was. I reached for the phone and hysterically called 911. I was told that the EMS was on their way and I should stay on the phone with the 911 operator. I can remember yelling at Marc not to die on me because I really thought that this was happening.

I know the EMS came quickly, but to me it seemed like forever. They took one look at Marc and said that he was having a very low blood sugar episode. They gave him an IV and within a few minutes, Marc started to come around. He didn’t remember one thing about what had happened…he didn’t even remember going upstairs to our bedroom. This is what can happen when blood sugar dips so low. The EMS said it was at 39 which is dangerously low.

Until that day I never even knew that there was such a thing as hypoglycemia. Marc’s sugars had pretty much been under control since he was diagnosed in 1996. He might have had a mild low here and there, but nothing that incapacitated him. I can only say that my scare level was at its highest peak during this episode.

Needless to say, this terrifying incident was only the beginning of a long, long journey into the world of being the spouse of someone with Type 1 Diabetes and hypoglycemia unawareness. Over the years since this first episode, we have gone through many times when my panic level rose above and beyond anything that I have could have ever imagined. Matter of fact, there have been many instances when this first episode paled in comparison to what was to come. That will be a blog post for a later date.

My Insurance Appeal for Dexcom Coverage

Posted on August 2, 2013 by Sue from New York

In January 2010 I started using the Dexcom Seven Plus Continuous Glucose Monitor (CGM). I had wanted to go on the FreeStyle Navigator CGM System because of its reputation for accuracy, but I went to the Syracuse Joslin Center to meet with the certified diabetes educator, she advised me to go on the Dexcom Seven Plus instead. I reluctantly agreed. Of course it turned out to be the right decision because not long after that Abbott stopped selling the Navigator in the U.S.

Anyone who uses the Dexcom knows what a life changer it is with controlling blood sugars. I used to have at least two severe overnight hypoglycemic episodes every month. I’ve only had one since going on the Dexcom. Yes, there are nights when my husband and I are woken repeatedly by Dexcom alerts for high or low blood sugar. However, that is a small price to pay to avoid waking up wet with sweat and seeing my husband sitting next to me with a concerned look on his face. What he went through to bring me to back to consciousness was much worse. I know that experience because our son also has Type 1 diabetes and I have been on the caregiver side of severe hypoglycemia.

A year after going on the Seven Plus, my personal diabetes manager (PDM) that controls the sensor went out of warranty. In February 2011 Dexcom sent me a new one. I had changed from one Blue Cross insurance plan to another during the year, and although my new company had been paying for the sensors, they sent me a letter of denial stating the following:

“According to Corporate Medical Policy and peer-reviewed literature, continuous glucose monitoring systems are medically appropriate for patients who are currently using an external insulin pump and, for patients over 18 years of age, diabetes is poorly controlled as evidenced by unexplained severe hypoglycemic episodes defined as an episode of low blood sugar resulting in a profound degree of cognitive dysfunction (e.g., stupor, seizure or unconsciousness) which requires external assistance for recovery. The medical records submitted by Dexcom do not indicate any of the above conditions. Therefore, these services are not medically necessary and are ineligible for coverage for DOS 2/15/11.”

I immediately called the insurance company and was told that I could appeal the decision. I composed a letter of appeal stating that both Dexcom and I had called to get authorization before the replacement PDM was shipped. Dexcom had sent them records of my blood sugars and my endocrinologist’s letter of medical necessity. When I had called, I was told that no pre-authorization was needed, just the letter of medical necessity. So we both thought we were good to go. In the letter, I detailed numerous episodes of severe hypoglycemia, one resulting in cuts after falling into a glass table (luckily it was safety glass), and sometimes needing assistance from medics or transport to the emergency room. I provided them with a copy of the bill from the hospital, as well as printed reports showing numerous blood sugar readings below 50 from my Dexcom and OmniPod pump. In my final paragraph, I stated:

“In consideration of the fact that I am using an external insulin pump, over 18 years of age, and I have poorly controlled diabetes as evidenced by unexplained severe hypoglycemic episodes resulting in a profound degree of cognitive dysfunction, I believe that the CGM provided by Dexcom is in fact medically necessary for the effective management of my blood sugars. In the event that I were to discontinue use of the Dexcom, I believe that I would resume having severe hypoglycemia episodes that would require outside assistance, i.e. a 911 call for assistance and/or emergency room hospitalization, and have higher A1C’s and increased variability in my blood sugar ranges.”

In June they reversed their decision and paid Dexcom.

I have since transitioned to the Dexcom G4 Platinum CGM and now enjoy increased accuracy and ease of use.

In two years I will be of Medicare age and I know that all the rules regarding continuous glucose monitors will be different. I am thankful for people like Sue from Pennsylvania who is assisting her Type 1 husband in appealing Medicare’s denial of payment with an administrative law judge. I pray that they and others will pave the way for Medicare to change their policy of nonpayment for CGM systems so that Type 1’s can continue to stay safe in their retirement years.

Hiking with Diabetes Part 1

Posted on July 29, 2013 by Laddie

I am lucky to be able to escape winter in Minnesota and spend several months in Arizona. Although I’ve always been active in sports such as tennis and golf, I have expanded my athletic repertoire to include hiking. I belong to two women’s hiking groups in Arizona. My primary group is a serious gung-ho group that hikes 8-12 miles with significant elevation changes on a typical Friday. Many of the places we hike are in mountainous areas where we have no cell phone coverage. My second group is more casual with shorter hikes on more populated trails. Although I certainly carry food, glucose tabs, and water with my casual group, I am not too concerned with diabetes causing a problem. So most of my comments below are related to my more rigorous and remote hiking excursions.

Although I’ve always made sure that my hiking companions know that I have Type 1, I’ve never done much else except ensure that my pockets and backpack have plenty of glucose tabs, granola bars, juice, and other food. This year it finally struck me that it was absolutely insane to repeatably go out into the no-wheres of Arizona without a Glucagon kit.

I stopped getting Glucagon kits years ago because I’ve never needed one and they expire so quickly. My husband would call paramedics 100% of the time before he would ever give me an injection. If I’m low at the grocery store or mall, no stranger will know to find the orange kit in my purse.

This hiking season I finally got a new Glucagon kit. Fortunately my hiking group includes a former RN and a former school principal who has a sister with Type 1. Even if they weren’t along, the others in my group are strong and confident women who would take control if needed. I wrote up a sheet to share with everyone describing the levels of hypoglycemia and directions to use the glucagon kit. I indicated that I would handle mild lows myself and they would probably never be aware of them. I wear a Dexcom G4 which gives me some guidance as to what is going on with my blood sugar. I also have a One Touch UltraMini attached to my belt and I have perfected testing while walking without falling off a cliff.

My favorite advice for moderate hypoglycemia is if they ask me if I am OK and I say “yes”, don’t believe me. I am getting better about admitting that I am low when asked. But old habits die hard and I don’t want my false bravado to fool anyone into thinking I’m safe when I’m rapidly getting into trouble. I also described symptoms that they might notice such as slurring of words and vacant eyes.

I discussed severe hypoglycemia and indicated that at this point I would be unable to eat food or drink juice. Although the Glucagon kit comes with instructions, I wrote up a clear and more succinct page of instructions using some of the images from the Glucagon website. I also mentioned that Lilly has an iPhone/iPad app if they want to review that. The weakness of that app is that the instructions are just a copy of the printed material that comes with the glucagon kit. Too wordy for an emergency situation IMO.

I feel confident that I will never be in a situation hiking where a Glucagon kit will be needed and I hope that my confidence is not misplaced. I am very aware that if I experience severe hypoglycemia, Glucagon will be only part of the solution. My hiking companions will still have to arrange for emergency help to evacuate me if I am sick from the Glucagon or the effects of severe hypoglycemia. In areas where there is no cell phone coverage, that might mean spitting our group with some hiking out for help and some staying with me. This whole scenario is something that I never want to visit, but my safety motto is to be prepared.

I often joke with my hiking companions that my aim every Friday is to not end up on the evening news. Unfortunately lost and injured hikers are a regular occurrence on Arizona newscasts. So far I have succeeded in that goal through hundreds of miles of hiking. I’ve been sore, dirty, and exhausted many weeks, but never on the news. Hallelujah!