Author Archives: Sue from Pennsylvania

My Fours Meme

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Sue B_Head SquareSince I have run out of things to say on a blogpost, this is a great way to let everyone know that I’m still here. Thanks to Laddie who sent the idea to me and Kelly Kunik of Diabetesaliciousness from whom I got the questions. Kelly mentions other D-bloggers who posted a Meme of Fours and be sure to follow those links to read their blogposts.

1. Four names people call me other than my real name:

  1. Mom
  2. MomMom
  3. Susie the B
  4. Susie Q

2. Four jobs I’ve had:

  1. Legal Secretary
  2. Owner of a Wig Shop
  3. Owner of a Hobby Shop
  4. Owner of an Italian Ice and Ice Cream Shop

3. Four movies I’ve watched more than once:

  1. Dirty Dancing
  2. Top Gun
  3. Waterboy
  4. Die Hard

Meme of Fours_SueB4. Four Books I’d Recommend:

  1. Roots
  2. A Time to Kill
  3. Anything by Faye Kellerman
  4. Sotah

5. Four Places I’ve Lived:

  1. Philadelphia, PA
  2. Los Angeles, CA
  3. Trenton, NJ
  4. Harrisburg, PA

6. Four Places I’ve Visited:

  1. Nassau
  2. Puerto Rico
  3. Grand Cayman
  4. Grand Turks

7. Four Things I Prefer Not to Eat:

  1. Ham
  2. Sushi
  3. Salmon
  4. Frog Legs

8. Four of My Favorite Foods:

  1. Spaghetti & Meatballs
  2. Hot and Sour Soup
  3. Boneless Spareribs
  4. Peanut M & M’s

9. Four TV Shows I Watch:

  1. All the NCIS shows
  2. Law & Order SVU
  3. Revenge
  4. Walking Dead

10. Four Things I’m Looking Forward to This Year:

  1. Seeing my kids in Atlanta
  2. Lunching with Friends
  3. House Hunting with my son
  4. Spring (this winter has been the pits)

11. Four Things I’m Always Saying:

  1. I love you
  2. Isn’t it a good day
  3. I’ve never felt better
  4. Geez, it’s so cold outside

Making Memories

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Sue B_Head SquareMy husband Marc is a Type 1 diabetic with hypoglycemia and hyperglycemia unawareness. Before going on Medicare in June of 2012, he had been using a Continuous Glucose Monitor (CGM) with full coverage by private insurance. As most of you know, Medicare does not cover the CGM. We spent almost two years going through the Medicare Appeals process and lost at every level. As we were deciding whether or not to go further (Federal Court), a night in shining amour came through for Marc in the form of the Veterans Administration. He had applied for VA benefits two years ago and that’s how long it took to get his application processed. Once it was processed, things moved quickly and in less then a month after his initial meeting with an endocrinologist, Marc was notified that a CGM and sensors were on their way. Since that day, the VA has sent all the supplies free of charge and for that we are very grateful. I use the word “we” throughout the blogs that I’ve done on our two year journey to get the CGM because I became Marc’s advocate and did all the blogging, letters to everyone I thought could help us, and made many connections with other people with diabetes. Although I do not have diabetes, I immersed myself into the cause to get Medicare to change their guideline for the CGM and will continue to do so.

The intention of this blog is not to be about diabetes. It’s about making memories. On Friday, December 19, Marc and I will leave for Florida. On Saturday, the 20th, our children and grandchild will meet us in Florida and on the 21st, we are going to board the Carnival Conquest for a 7-day cruise. This is in celebration of Marc’s and my Making Memories45th wedding anniversary. Marc and I did the same thing for our 40th anniversary and the memories we made during that cruise were invaluable. My daughter Robin, her husband Greg and our granddaughter Bailey live in Atlanta, as does our son Jason.  Marc and I live in Pennsylvania. There are over 800 miles between us and we don’t get to see our Atlanta family as often as we would like. When we did our 40th anniversary cruise, Bailey was only 5 and it was priceless seeing her delight during the entire cruise. She, as well as all of us except Greg, did a zip line. Together with her parents she went on a riverboat ride, and we all enjoyed the beaches in all the ports we went to and life aboard the ship. Bailey had ice cream for breakfast, lunch and dinner which is something that would never be allowed at home. Marc and Jason snorkeled and Jason jet skied. We all had new and adventurous experiences and had a great time being together. Now that Bailey is 10 and we are so looking forward to her new experiences and ours as well.

In the past few years, we have lost many friends to various diseases. One passed away from ALS and another died after a major heart attack. A few friends died from various types of cancer or have cancer presently and are going through treatment. My brother has had health issues and recently had two surgeries. And of course, for us, living with diabetes is always a presence in our lives. It’s a blessing when we have the opportunity to do things with our family and create memories that we can always pull out when times get rough.

At the age that Marc and I are at now, we want to make memories with our children and granddaughter that we can all cherish for many years to come. We know they also feel the same way. This is what is really important in life. The love you have for your family. The love they feel for you and all the happy moments that can be captured. It’s what makes life worth living.

Eight Days of Hanukkah

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Sue B_Head SquareSince I celebrate Hanukkah, I decided to take each day of our eight day celebration and write what I am most grateful for.

On the 1st day of Hanukkah, I am very, very grateful for my husband Marc.  He is my rock and has been for over 45 years.

On the 2nd day of Hanukkah, I am grateful for my children: my son Jason, my daughter Robin and her husband Greg and my granddaughter Bailey.  They are the loves of my life.

On the 3rd day of Hanukkah, I am grateful for my friends.  Most of them have been in my life for over 35 years and since most of us live away from our immediate families, we have become family to each other.

On the 4th day of Hanukkah, I am grateful for my love of doing things with my hands.  I Menorah2014love crafting especially knitting and beadwork.  I especially love knitting afghans for our friends’ children who are getting married and for the babies when they come.

On the 5th day of Hanukkah, I am grateful for my love of reading.  I have traveled to different places and learned so much because I love to read everything and anything and have always, since early childhood loved the written word.

On the 6th day of Hanukkah, I am very grateful that we have a wonderful Hanukkah gift of a cruise for our entire family.  Since we haven’t seen sun here for the past five days (Harrisburg, PA), it will be wonderful to be in the sunshine and warmth of the Caribbean.

On the 7th day of Hanukkah, I am extremely grateful to the Veterans Administration for supplying a Continuous Glucose Monitor  (CGM) to my Type 1 diabetic husband Marc.  After a 2 year fight with Medicare that was frustrating and going nowhere, the VA is supplying the monitor and sensors free of charge.

On the 8th day of Hanukkah, I am very grateful to myself for having the tenacity to decide to fight for the CGM.  I learned so much about myself during this journey.  I never knew I had it in me to blog, to do a Podcast, to speak to so many people across the United States who were in the same predicament as Marc and make so many new friends.

So to everyone who reads my blogs, I wish you all a Merry Christmas (or Hanukkah) and a very Happy and Healthy New Year.

Yellow Dot Program

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Sue B_Head SquareWhat happens if a traffic accident leaves you unable to speak? For that matter, what happens if you are a diabetic with hypoglycemia unawareness and suffer a severe low while operating a motor vehicle? I can go even further and ask what happens if you have a heart condition and suffer an incident while driving your automobile? There are many what ifs. I recently found out about a program called the Yellow Dot Program. I learned of this program when my fellow blogger Sue and her husband Steve were visiting us from New York during the summer. Somehow we got into a diabetes discussion, and the subject of this program came up because they had a Yellow Dot on the driver’s rear windshield of their car and the Yellow Dot booklet in their glove compartment. I googled my Pennsylvania State Department of Motor Vehicles and found out that Pennsylvania had the program and immediately sent away for the booklet which contains the Yellow Dot and information about using the booklet to inform police and first responders in the case of an accident.

So, what is exactly is the Yellow Dot Program? This program was created to assist citizens in the “golden hour” of emergency care following a traffic accident when they may not be able to communicate their needs themselves. Placing a yellow dot on your Yellow Dot Examplevehicle’s rear windshield alerts police and first responders to check your glove compartment for vital information to ensure you receive the medical attention you need. While it was specifically created for traffic accidents, I have been told by my Department of Motor Vehicles that they are now adapting it to include any type of medical issue including diabetes. That wonderful yellow dot on the rear driver’s window of your vehicle will alert the police or first responders that you are not drunk…you are having a diabetes-related incident.

I sent away for the pamphlet immediately and received it within 10 days. If you have read my blogs on this site, you will know that I write extensively about my worry for my husband, Marc, when he is not with me. His hypoglycemia unawareness has caused many frightening moments in our lives and my constant worry was always that he would be in the car and be stopped by the police and they wouldn’t realize that he was having a diabetic incident. This simple Yellow Dot gives me some peace of mind.

It’s very simple to start using the Yellow Dot Program. All you need to do is contact your Department of Motor Vehicles and request the Yellow Dot Kit. When you receive it, fill out the information booklet, put the yellow dot on the bottom of the rear driver’s side window and the information booklet in your glove compartment. The information booklet has a place to put your photo, all your medical information including medical conditions, emergency contacts, medications, allergies and physician information. You can also indicate your hospital preference. When the police or first responders see the Yellow Dot on your car they know to look in your glove compartment immediately. It couldn’t get any easier.

According to Peter Kissinger, president and CEO of AAA Foundation for Traffic Safety, “older individuals tend to have more medical conditions, are on more medications and are generally more fragile. This well-justified program, especially in light of the growing number of older Americans, is innovative and addresses the unique risks associated with older Americans”. While he specifically targets older Americans, it gives anyone, whether young or old, with specific medical conditions, the ability to telegraph to police or first responders that there is information in the glove compartment that will help in the event of an accident or other incident. This information is invaluable.

The Pennsylvania Department of Transportation supplies the Yellow Dot and Booklet at no charge. On some websites, I have seen places that do charge for the materials. And I also saw that every state has a Yellow Dot Program. In asking around, I found out that with the exception of Sue from New York and her husband Steve, no one else knew about this program and I truly believe it’s vital that the information be passed around. Because of this lack of knowledge of the program, I called my Department of Transportation and found out that they actually have a special department for the Yellow Dot Program and are aware that they need to do a better job getting information out to their various police departments, first responders and fire departments in my State of Pennsylvania and also to all the citizens of the State. They are having meetings with these groups in order to promote awareness.

I hope that after reading this blog, you the reader will contact your local Department of
Transportation and request your kit and also find out how much they are doing to promote this very, very important program. It can definitely save your life.

The Road to a CGM

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Sue B_Head SquareIf you have been reading my blogs, you will already know who I am. If you have not, here is what I have been doing for the past two years. In June of 2012 my husband Marc became eligible for Medicare. He is a type 1 diabetic with hypoglycemia and hyperglycemia unawareness. Prior to entering the Medicare system, his Continuous Glucose Monitor (CGM) was covered by his private insurance company. Once he went on Medicare, this was no longer true. He was denied coverage of a new CGM when his old one stopped functioning.

We decided to fight Medicare because we really believed that the guideline should be changed for this piece of equipment. There are four levels to Medicare’s appeals system. Levels 1 and 2 are basically rejection letters from the insurance company and an independent company hired by the insurance company to review the insurance company decision. Level 3 is a hearing with an Administrative Law Judge (ALJ). I blogged about the 9-month wait for his decision in a mid-March 2014 blogpost. Unfortunately, that decision was UNFAVORABLE.

We decided to go on to Level 4 which is a hearing with the Medicare Appeals Council (MAC). Sadly, after a 5 month wait, we got a decision on Saturday, September 20 and the MAC upheld the ALJ decision. Previously we had thought that we would go to the next Level which is an appeal to the Federal Court System. Fortunately this was unnecessary because three weeks ago, the Veteran’s Administration (VA) supplied Marc with a CGM and sensors. My blogpost titled He Finally Got One! give the details of that wonderful milestone.

The Road to Getting a CGMBecause of Marc’s new situation with the VA supplying the CGM and sensors, even had the MAC given us a favorable decision, we would not have been able to accept the CGM though Medicare. But that doesn’t mean that I’m done with my advocacy. I am now going in a different direction and am going to do whatever I can to encourage everyone I know (and don’t know) to please sign the letter urging their Senators to support the Senate bill S. 2689 introduced by Senators Susan Collins and Jeanne Sheehan and the new companion bill H.R. 5644 introduced to Congress by Representatives Tom Reed, Diana DeGette and Ed Whitfield urging support from their colleagues in the Congress. Both of these bills are called the Medicare CGM Access Act of 2014. At the same time, please sign the Petition put forth by the Juvenile Diabetes Research Fund (JDRF) that will go directly to Medicare. Currently there are over 57,000 signatures but we need many more.

Please check out Laddie’s recent blogpost which gives links to easily contact your Senators and Representative and to sign the petition.

Over the past two years that I’ve been advocating for the CGM, I have met many wonderful people. It is because of them (Janice, Mig, Debbie, Dan, Judy, just to name a few) that I have continued on despite being so frustrated at times that I literally felt as if I could not go on any further. I would be totally remiss if I didn’t thank Laddie and Sue for their support as well. Both of them have been my teachers since as I’ve often said “I am not the diabetic”, and I had a lot to learn. I will keep on advocating and doing whatever is necessary until we collectively reach the goal of getting Medicare to change their guideline. I knew this wasn’t going to be a sprint. I knew this was going to be a marathon. And I knew I was in it for the long run. And I will continue to keep on blogging and working to get the guideline changed until the day that I can finally say WE GOT IT DONE.

HE FINALLY GOT ONE!

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Sue B_Head SquareI have been advocating for over two years for Medicare to cover a Continuous Glucose Monitor (CGM) for my husband Marc. Synopsis – he had been covered for the CGM when he had private insurance through his employer, but when he turned 65 and became Medicare eligible, and needed a replacement CGM, it was denied. Medicare considers the CGM precautionary and therefore, in their opinion, not necessary. Of course, those who desperately need one disagree with this. The first denial came in August of 2012 and shortly thereafter, we started the long and exhausting appeals process. When we got to Level 3, a hearing by an Administrative Law Judge (ALJ), it took almost nine months after our June 26, 2013 hearing for the Judge to render an UNFAVORABLE decision. We decided to go on to Level 4 which is a hearing with the Medicare Appeals Council (MAC). They have the power to overturn the Judge’s decision. This Appeal was submitted to them in April of 2014. We are now in the 5th month of waiting for the Council to make a decision. The Appeals process is almost like watching a tortoise cross the road. It’s very, very slow.

In the meantime, Marc, after 45 years, decided to apply for VA benefits. He had served in the United States Air Force for four years but had never thought of getting any benefits through the VA. From the time he submitted his first application to when they processed him in took almost two years (nothing we do happens quickly). Finally, in May of this year, he became a part of the VA. He had to go through all types of exams, one of which was with the VA endocrinologist. In checking his A1c and hearing about his problem with hypoglycemia unawareness, she definitely thought that he needed a CGM and prescribed one for him. However, as with Medicare, we were told that the wait to get one was 1 – 2 years. For some reason, and I can only guess it was because he had so many instances of blacking out, she went to bat for him and I can finally say, HE HAS A CGM! Two weeks after speaking to her, he received an email from Dexcom that his CGM was on its way. Four days later it came.

To say that we are thrilled is putting it mildly. Our two years without a CGM are finally over. For myself, I can now be at peace during the day when Marc at work knowing that if his sugar starts to drop rapidly, he’ll get those warning beeps. And I welcome those beeps at night (which used to drive me crazy) because now I can sleep better (in between the beeping) knowing that we’ll have time to correct the situation before I have to go running for the Glucagon.

Dex Box Hooray

When I became an advocate for his CGM, I made a commitment to continue to fight for Medicare to make a change in their guideline even if Marc did eventually get a CGM, whether through Medicare or some other source. I intend to keep that commitment and will continue to work towards that goal. To that end, we are letting the Level 4 Appeal play out even though, if we are fortunate enough to get a FAVORABLE decision, we can no longer get a CGM through Medicare. It is our hope that if anyone who is thinking of going through the process will see that it is possible (I hope) to get a good decision and soldier on. No one should have to go through what we’ve gone through in the past two years to get a piece of equipment that is so life-saving.

If you are a Veteran and have not joined the VA, you might want to consider applying for benefits whether you are a diabetic or not. In the past four months, not only have they covered Marc’s CGM and sensors, but also Symlin, which is a synthetic aid in lowering blood sugar and is quite costly, his cholesterol medication, syringes, etc. In a future blog, I will give you a few hints about joining that might make it easier to navigate the VA, one of which is to contact your local County Veterans Service Officers. They are most helpful.

Conversations: Two Spouses of Type 1 Diabetics

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Conversations Banner_T1Spouse

Sue B_Head SquareSue from New York and I first came into contact with each other through the American Diabetes Association message board. My husband had gone on Medicare and discovered that his Continuous Glucose Monitor (CGM) would not be covered by Medicare, and I needed to get in contact with someone who might answer some questions as to what I needed to do to fight the guideline that Medicare had that prevented the coverage of the CGM. Sue from New York posted an answer to my CGM inquiry even though she wasn’t on Medicare as yet. I think that we may have chatted very briefly on the forum before I asked her for her email address so that we could communicate privately. After emailing for a month back and forth, I asked her for her phone number. I thought it would be easier to speak on the phone. She sent me her phone number and we started talking on the phone a few times a week and really became good friends. At some point, she suggested that I contact Laddie about doing some blogs on Laddie’s Test Guess and Go site.

Sue and her husband decided to take a road trip last week. They started off in Maryland, then went to West Virginia, and on the final leg of their journey came to Harrisburg, Pennsylvania, where I live and spent a few days with my husband Marc and me. We had a great time meeting in person and being able to speak to each other face-to-face. Sue and I thought it would be interesting for me to have a conversation with her husband Steve as spouses of diabetics. She, in turn, had a conversation with my husband Marc. The following is a result of my conversation with Steve.

Sue from PA: What was your reaction when Sue was diagnosed as a diabetic?

SteveS_Head SquareSteve: I thought that since we had gotten through it with our son Steve, who was diagnosed as Type 1 at age 4, that hers wouldn’t be as bad because she was diagnosed as a Type 2. I was worried, but I knew I could handle it.

Steve: How was it when Marc was diagnosed for you, because you hadn’t been through it?

Sue from PA: Initially when Marc came home from the doctor and told me he had diabetes, I was pretty shocked. Then I started to educate myself about diabetes and I realized that I had a misconception of what it involved food-wise. I always thought that you couldn’t have sugar. I soon learned that sugar was the least of my worries. It was actually carbohydrates that were the real villains since they turn into sugar.

Sue from PA: What do you do to help Sue with her diabetes management?

Steve: I keep track of her monitoring, make sure that she is taking her medications, help her with her placement of her pods (OmniPod is the pump that she uses to deliver her insulin), help her when she is hypoglycemic and make sure she gets something to eat or drink to bring her blood sugar back to normal. At times I have taken her place in watching the grandchildren and have taken them places where she would have taken them normally, and at times I have driven her to the store when she has needed to get something and didn’t feel as though she could drive.

Steve: How long has Marc had his diabetes, and how have you taken care of him?

Sue from PA: Marc has had his diabetes for approximately 19 years. I am very fortunate in that he can do his everyday care by himself. He is totally responsible for his insulin pump and when he had a CGM he was totally responsible for changing his sensors. Basically, I manage his food by counting his carbs for each meal that I prepare. I am responsible for saving his life when he gets hypoglycemic, and I am constantly reminding him that he owes me big time since I’ve had to save him more times that I can count of my two hands. I have learned to give him the glucagon when he blacks out and I have leaned to recognize the symptoms when he starts to go low.

Steve: Sue has also told me that she doesn’t know what she would have done without me and how grateful she is that I have been able to help her through this.

SuePA_SteveNYSue from PA: Emotionally, what’s it been like to live as the spouse of a Type 1 diabetic?

Steve: At times it has been very stressful. At times I am truly emotional over it. Sometimes I have been scared but I made a commitment in my wedding vows, in sickness and in health to love her always and I would never leave her because of her health.

Steve: On that same topic, how has it been for you?

Sue from PA: (Heavy sigh). It’s been a challenge. I don’t think there is ever a day when I don’t worry about him. One of the biggest issues for us is the lack of his having a CGM due to being on Medicare and them not covering it. When my children became independent and were able to be out on their own at night, as most mothers do, I never truly fell into a deep sleep until they were home and the house was locked up. Now I never fall into a deep sleep even though my husband is right beside me. I am always aware that in the snap of a finger he can go into a hypoglycemic low, at which point I might have to jump out of bed, and I literally mean jump, to make sure to get juice or a soft drink into him to prevent him from going unconscious. During those times when it’s happening so fast that he does become unconscious, I need to give him the glucagon. Even though I’ve done it numerous times, my hands still shake and my heart beats almost out of my chest. I’m just always worried when I am not with him. I can understand how you feel, Steve, because I feel the same way. I will always honor my wedding vows. But you have to make light of it sometimes to be able to live with the situation. I can truly say that seeing someone you love having a hypoglycemic low is something you never forget. They are drenched in sweat, their eyes are unfocused and they have no idea of what is happening. It’s frightening.

Sue from PA: Steve, do you have anything else you want to add to this conversation?

Steve: In less than a year Sue will turn 65 and will go on Medicare. I hope and pray that when her insurance no longer covers her, Medicare will be there to cover her with her diabetic supplies and necessary devices that she needs, i.e. her CGM.

Sue from PA: Diabetes had been a true education for me. Because of Medicare’s lack of coverage of the CGM, I have become an advocate. I have done things I would have never thought I could do. I blog, I did a podcast, I wrote an article for my local newspaper, and recently I have become involved in S-2689, the Medicare CGM Access Act that was introduced into the Senate on July 30, 2014 by Senators Susan Collins (R-ME) and Jeanne Shaheen (D-NH). It addresses the growing concern that people with Type 1 diabetes who are over the age of 65 cannot obtain coverage for the critical and potentially life-saving Continuous Glucose Monitor (CGM) through Medicare, even if they used these technologies successfully prior to becoming Medicare eligible. A few weeks ago I sat in on a telephone conference with representatives from Dexcom, Medtronic, J & J and Animas and also a representative from the endocrinologists association, among others. I was one of just a few to be invited to sit in on this telephone conference.

Sue from PA: I thank Steve for having this conversation with me. Most of the people I come into contact with are the diabetics. I’ve not had much contact with the spouses and it’s good to be able to speak about what it’s like for us, the caretakers. I hope that we can have more conversations in the future.

In closing, I would like to ask everyone reading this who has not yet signed the JDRF Petition or clicked on the link that asks their Senators to support S-2689 to please do so. It’s so important to the many diabetics on Medicare who cannot get a CGM because it isn’t covered by Medicare. So many are on fixed incomes and can’t afford the cost of the CGM and the sensors.

• Click here to email your U.S. Senators to urge them to co-sponsor legislation that would ensure Medicare covers CGM
• Click here to sign a petition to urge Medicare to act now to cover CGM

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If you are interested in participating in the Conversations project, click here for information.

Out of the Box

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Sue B_Head SquareMany times over the course of this past year since I’ve starting blogging, I’ve made mention of the fact that for the most part I’m a very private person. I’ve never liked calling attention to myself and more then anything, after having worked for over 40 years outside of my home, I’ve enjoyed being a homebody. I love to do anything with my hands. Knitting is one of my favorite hobbies as is doing very intricate beadwork. The tinier the beads, the more I enjoy working with them. I love to read and delight in spending time in the kitchen playing around with new recipes.

When I got the opportunity to start blogging on Test Guess and Go, I realized that writing about the problems that my husband and I were experiencing getting Medicare coverage for the Continuous Glucose Monitor (CGM) was therapeutic. Before I started doing this, I often felt very alone. I have friends who have diabetes but they are all Type 2 and don’t understand the problems that my husband Marc has experienced being Type 1. Through my writings, I have had the opportunity to be in contact with many people who are dealing with the same problems Marc and I are faced with on a daily basis. For me, who had become his advocate in this quest, writing became a great way to get out my frustration at a system that does not recognize the importance of a device such as the CGM. A diabetic with hypoglycemia unawareness needs this in order to feel safe and keep others safe.

On May 1 I took a huge step towards coming out of what I refer to as “my box”. I did a Podcast on DSMA Live. For those of you who don’t know what DSMA Live is or what a Podcast is, it’s an hour long program that is similar to a radio broadcast except that it’s done through a computer and in the comforts of your own home. DSMA stands for Diabetes Social Media Advocacy. Cherise Stockley is the creator and the co-hosts are Scott Johnson and George Simmons. The mission of DSMA Live is to “promote social networking in all its forms (Facebook, Twitter, YouTube, etc) in order to educate and support all people affected by diabetes”. Cherise, Scott and George interviewed me and I was able to speak about my experience as the spouse of a diabetic and my journey during the past year fighting to get a Continuous Glucose Monitor covered by Medicare. The interview is available on iTunes under Podcasts and using the search words DSMA Live or by going to this link.

I was pretty calm leading up to the day of the interview until about an hour before I was to go on the “air”. Then the nerves started to kick in. I am not and never was a public speaker. The thought, to be honest, was pretty frightening; however I felt that it was something that was necessary if I was going to inform as many people as possible about H.R. 3710, the Medicare CGM Coverage Act. This bill was introduced to Congress in December, 2013 by Representative Carol Shea-Porter and asks for coverage of the CGM if recommended by a physician. I feel that this bill is extremely necessary for diabetics with hypoglycemia and/or hyperglycemia unawareness. I will do whatever is necessary to inform the public about H.R. 3710. I am asking everyone to write to their Congressperson and request that they co-sponsor the bill so that it can be brought to the floor of the House. Please read my Join the Crusade post to find out how you can make a difference in the fight for CGM coverage by Medicare.

The Podcast started and Cherise introduced me and much to my surprise, once I started speaking, my nerves dissipated and it was smooth sailing from then on. I I give credit to Cherise, Scott and George for putting me at ease. I was pretty surprised when I looked at the clock and saw that I had already spoken for 30 minutes and hadn’t covered half of what I wanted to cover. The second half went even faster and before I knew it, the hour was up and I still had more to say. But alas, you only get an hour and my time was up. I hope to do a Podcast again in the future. This very private person definitely came out of the “box” and enjoyed doing so.

Out of the BoxA few months back, I wrote a blog about my year of growth, first deciding to advocate for my husband and then starting to write on Test Guess and Go. My experience has taught me that growth can happen at any age (even for a Senior Citizen). It is my hope that with all the effort put into getting the CGM covered by Medicare that I will one day be able to stop blogging about the CGM and go onto other issues that diabetics deal with on a regular basis in getting coverage for much needed items. Until then, I will continue doing whatever necessary to get the guideline for the CGM changed.

IF ONLY

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Sue B_Head SquareFor the past few months, I’ve been working on Level 4 of the Medicare appeal for my husband’s CGM. It finally went in the mail to the Medicare Appeals Council (MAC) at the beginning of April but I needed a few weeks to clear my brain after weeks of trying to get this appeal in order. Fortunately, for this level, I was able to find an attorney who drafted the appeal. There was a lot of back and forth to get it right and I was thrilled with the end results. The argument is that Medicare’s regulations clearly indicate that blood glucose monitors are covered if (1) the patient has diabetes; (2) the patient has been trained in how to use the device and is capable of the same; and (3) the device is designed for home rather then clinical use.  Included in the appeal letter were 130 pages of attachments displaying that CGMs are recognized as the standard of care for brittle diabetics not only within the United States, but internationally. I have been told that the wait to hear from the MAC can be anywhere between three to six months but our attorney has indicated that if the wait is longer then three months, we’re going to escalate it to District Court. Future blogs will keep you informed of what’s happening.

But now onto an interesting article that was recently in the Tampa Bay Times. The headline was “Low blood sugar cited in death of prominent community leader’s husband after Tampa police traffic stop.” If you would like to read the entire article, you can follow this link.

To give you a synopsis of the article, Officer Anthony Portman received calls of an erratic driver who was swerving onto the sidewalk and into a stop sign. When Officer Portman arrived at the scene and asked the driver, Arthur Green Jr. 63, to hand over the keys, Mr. Green became combative. Officer Portman called for backup and then called for Tampa Fire Rescue to send medics. When Cpl. Matt Smith, the backup officer arrived, he indicated that he had seen diabetic incidents before and suspected that this what Mr. Green was having, but because Mr. Green was resistant, the officers restrained him with handcuffs. At that point, Mr. Green stopped breathing. The officers attempted to give Mr. Green CPR but when the Fire Rescue arrived at the scene, Mr. Green had no pulse. He was transported to St. Joseph’s and after 19 minutes of trying to resuscitate Mr. Green, he was pronounced dead. He had a blood sugar of 29.

A few days after receiving the article, Laddie, my fellow blogger, sent me an email and asked what I thought about the incident. Both Laddie and I agreed that we had no idea of what Mr. Green’s diabetes history was. In pulling up whatever information I could about this incident, I do know that Mr. Green was not wearing a medical bracelet. There is no mention in any of the articles that I’ve read that Mr. Green had a CGM so I am assuming that he did not have one. The main issue of most of my blog posts is Medicare and their denial of coverage for the CGM. Mr. Green does not seem to fit in with this since he was 63 years of age and unless he was on Social Security Disability, he obviously wasn’t on Medicare.

Tampa StoryAfter thinking about this situation for a few days, I decided that the broader issue is that this man died because he didn’t have a CGM. Had he had one, he would have been alerted of his falling blood sugar in enough time to make a correction to get his blood sugar elevated. The reason why he didn’t have one isn’t the important part of the story.   It’s the fact that he didn’t have one. It proves the point that the CGM is a lifesaving device and that anyone, whether young or old, on Medicare or not, could be saved from a preventable death with the use of this device.

This could have been my husband. He’s had quite a few incidents where the same thing could have happened to him as happened to Arthur Green Jr. Call it luck or a higher power. My husband has been fortunate enough to have been stopped by officers who recognized immediately that he had a medical problem (he does wear a medical alert bracelet) and notified EMS quickly enough for them to get to the scene and administer glucagon (a hormone that stimulates your liver to release stored glucose into your bloodstream.  It is used as medication to treat someone with diabetes that has become unconscious from a severe insulin reaction). He does not have a CGM presently. This has been what our 1 ½ year long appeal has been about.

Entertainment people always say that any press is good press whether it’s positive or negative. So in this instance, The Tampa Bay Times calling attention to the unnecessary death of Arthur Green Jr., as sad as this death is, calls attention to the fact that this can happen to any diabetic at any time. If only Medicare would be aware of this incident and understand that those people who are asking for coverage for their CGM are not doing it because they want another piece of equipment to attach to their bodies. They just want to assure themselves that they are safe and able to keep others safe as well.

It’s so difficult to understand why Medicare just doesn’t get it.  IF ONLY they did.

 

UNFAVORABLE

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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.