Dear Senator Al Franken:  Medicare and CGMS

Laddie_Head SquareI have had diabetes since 1976 and will transition to Medicare in early 2017. As most of you know, Medicare does not currently cover continuous glucose monitors for seniors with Type 1 diabetes.

There are companion bills in the U.S. House of Representatives and the U.S. Senate that would require Medicare to change that policy. My Representative Erik Paulsen is a co-sponsor of H.R. 1427: Medicare CGM Access Act of 2015 and one of my Senators, Amy Klobuchar, is a co-sponsor of S. 804: Medicare CGM Access Act of 2015. Unfortunately my other Senator, Al Franken, is not on board with supporting this bill.

Recently I was given the opportunity to work with a consulting firm, HCM Strategists, to share my story with Senator Franken with the hope of influencing him to support S. 804. This is my letter:

Franken Letter

I learned about the opportunity to work with HCM Strategists through a TuDiabetes forum post started by Emily Coles, the Community Director for Diabetes Hands Foundation. She writes:

Diabetes Hands Foundation (parent organization to TuDiabetes) has connected with a group called HCM Strategists, which does public policy advocacy around health and education. They’re organizing advocacy for Medicare coverage of CGMs, and have asked me to identify some community members who are interested in, and passionate about, this issue. We’re particularly looking for folks who are willing to share their personal stories about how Medicare coverage of CGM affects them.

If you’re interested in sharing your story, or taking a more active role on this issue in some other way, please let me know in the thread below and I’ll connect you with the fine folks at HCM! They are seeking people of ALL ages for this effort.”

There are two ways to become involved. 1) Go to the TuDiabetes forum post and leave a message for Emily. You must be a member of the TuDiabetes community, but it is easy to join and a great place to hang out. 2) Or you can email me and I will share your contact information with the HCM Associate who worked with me.

You will then receive an email from HCM with a series of questions (name, age, diabetes story, CGM use, etc.). Your answers will provide an HCM Associate with the information to draft a letter to your elected representatives. With your approval they will also use your letter as part of their outreach to members of Congress.

This is a unique opportunity to have your voice heard in Washington, D.C. Working with HCM Strategists is straightforward and professional and I urge you to advocate for Medicare coverage of continuous glucose monitors by sharing your story.


Letter to Al Franken

A Chance to be Heard

Laddie_Head SquareOver the weekend I was asked by fellow Minnesotan Scott Johnson to write a statement about the value of continuous glucose monitors (CGM) for senior citizens, most specifically as it relates to  Medicare and CGM coverage. Rather than recreate the wheel for why he asked me, here is an excerpt from Scott’s email:

Scott Email Paulsen

Erik Paulsen (R-MN3) represents the Third District of Minnesota. He is a champion of fiscal responsibility and technical innovation when it comes to healthcare. Paulsen is a member of the diabetes caucus in the U.S. House of Representatives and is a supporter of “bipartisan, common sense solutions” for our healthcare crisis. Although Scott did not know this, I live in Erik Paulsen’s district and have previously contacted him by letter, email, and Twitter regarding diabetes issues such as federal funding for diabetes research and the need for Medicare coverage for CGMS. (I also voted for him in the recent November election.)

Luckily for Scott, I had an unfinished blogpost about growing old with Type 1 diabetes and it didn’t take long to draft a statement to be shared at the JDRF advocacy meet-up with Congressman Paulsen. This is my statement as submitted to Scott and shared with The Honorable Erik Paulsen, United States House of Representatives:

Paulsen Statement by Me

Thank you to Scott for sharing this photo from Monday, November 17, 2014. Left to right: Camille Nash, Debbie Evans, Scott Johnson, Rep. Erik Paulsen, Chelsea Grimes.  Camille, Debbie, and Chelsia are mothers of children with Type 1 diabetes and along with Scott, represented the MinnDakotas Chapter of JDRF to advocate for Medicare coverage of Continuous Glucose Monitoring.

2014-11-17 10.51.00


          Oh yes, I am awesome, Scott. And so are you!

Postscript:  The day after this meeting, Representative Erik Paulsen signed on as a Co-Sponsor of H.R. 5644: Medicare CGM Access Act of 2014.  Talk about concrete proof that our advocacy efforts can make a difference!  Thank you to Camille, Debbie, Scott, and Chelsea for representing JDRF and sharing your stories and my story with Rep. Paulsen.  And thank-you to Erik Paulsen for going on record as supporting Medicare coverage for CGMS.

A Thank-you Note to Laura C.

Laddie_Head SquareDear Laura,

We’ve never met in person or crossed paths in the diabetes online community (DOC). I was diagnosed with Type 1 diabetes in 1976 at the age of 24. When my children were born 30+ years ago, I naively never worried about them getting Type 1. When I became involved in the DOC over 10 years ago, I quickly became a supporter of parents of children with Type 1. At the same time I gave thanks every day that I had diabetes instead of my children. Most of the parents whom I’ve met in the DOC would happily live with Type 1 if they could take the burden away from their children. I suspect that you feel the same way.

I recently listened to you and your husband talk on the Oct. 20 DSMA ‘Rents podcast about CGM in the Cloud. I have read many blogposts and listened to multiple interviews about the Nightscout system and am amazed by the #wearenotwaiting project. The technological support and peace of mind it provides for people with diabetes and their parents/families is wonderful. Although some adults with diabetes are using the system, I personally don’t need it at this time. As a diabetes tech junkie, I’ve been tempted to buy the gear and set it up, but so far I’ve resisted.

But Nightscout is not what this letter is about.

I am 62 years old and will be on Medicare in 2.5 years. I have used continuous glucose monitoring (CGM) for over five years and have found the Dexcom G4 to be a life-changing device for me. I am safer, my blood sugars are more tightly controlled, and I feel better both physically and mentally. When I reach Medicare age, I will have used a CGM for almost 8 years with full insurance coverage. I am terrified of the day that current Medicare policy will deny me that coverage. I am befuddled by decision makers who label CGM as “precautionary and without proven value” while this still-improving technology has a proven track record, can save money by reducing hypoglycemia-related ER visits/hospitalizations for seniors, and is a fundamental technology of the Bionic Pancreas.

Today I write to thank you for your closing remarks on DSMA ‘Rents:

“And the other thing I’ll add real quick as the Advocacy Team Chair for our Rochester Chapter of JDRF-  None of this would be possible without the CGM technology and there’s a bill currently going through Congress right now to allow seniors on Medicare access to CGM. Most, I think it’s like 95% of private insurance, covers CGM’s whereas our seniors don’t have access to them. And I feel like just because our son [name withheld] is 6 and not 66 doesn’t mean he is any more or less deserving of this technology. So all these great things that we have because we have access to it, I think our seniors deserve as well. So I’ll just put that pitch in there.”   (Loc. 55:07)

In the last year and a half, the issue of Medicare CGM coverage has moved to the front page Dear Laura Cof DOC advocacy. (One of the leading champions of this issue is my co-blogger Sue from Pennsylvania.) Those of us with insulin-dependent diabetes on Medicare or approaching age 65 have appreciated the support of parents, families, friends, medical professionals, and people with all types of diabetes. With the whole diabetes community supporting us, we have had and will continue to have a louder voice than we would otherwise.

But the fact that you took the time to conclude your interview concerning your project and your son with the importance of my issue is incredibly heart-warming.

So I thank you, Laura. If I ever had doubts that those of us affected by diabetes can be a united and supportive community, your eloquent remarks smashed them. I will sleep better knowing that you are on my team.

Sincerely yours,

Laddie Lindahl

Test Guess and Go

If you have not previously contacted your Senators
and U.S. Representative to support CGM Coverage
by Medicare, please click here to go to the
JDRF page that contains links and easy-to-
follow instructions to have your voice heard.

The Road to a CGM

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.

More News on Medicare and CGM’s

Laddie_Head SquareOn Friday I received a copy of an email from a Medtronic spokesperson announcing an important development in the battle to have continuous glucose monitors (CGM) covered by Medicare.  This is an excerpt from her email:

We have some great news to share on the Medicare CGM Access Act! Late yesterday, Representatives Tom Reed, Dianne DeGette and Ed Whitfield introduced companion legislation into the House of Representatives.

As you’ll likely remember, back in July Senators Susan Collins and Jeanne Shaheen introduced nearly identical legislation to ensure access to CGM technology for people on Medicare. We can’t thank you enough for all the wonderful social media activity you’ve created to drive the community to urge their Senators to co-sponsor the bill. However, as you likely know, in order for a bill to become a law, it must be passed in both the Senate and the House before going to the President to sign or veto. So, this “companion bill”, which is nearly identical in content with a new number (HR 5644), is a key step in the legislative process.

Of course, this means it’s time to rally the community again, urging people with diabetes along with their friends and family to encourage their local Representatives  (as well as their Senators) co-sponsor the legislation.

Once again, JDRF has provided great resources where people can read about the issue as well as identify and easily contact their own Representatives and Senators.

You can find these resources here. You can also feel free to share our blog post.

For those on Medicare and those of us soon to be there, this is hugely important.  My CGM has been life-changing and I believe that it keeps me safe and improves my blood glucose profile on a daily basis.  My co-blogger Sue from Pennsylvania has repeatedly shared the nightmare that she lives in because of the non-coverage of her husband’s CGM by Medicare.

What can you do?

    1. Contact your U.S. Representative to ask him/her to co-sponsor H.R. 5644 and advocate for seniors with diabetes who require a CGM.
    2. If you have not already done so, contact your Senators to co-sponsor S. 2689 and advocate for seniors with diabetes who require a CGM.
    3. Sign the JDRF petition: Tell Medicare to Cover Continuous Glucose Monitors for People with Diabetes.  As of 9/21/14 the petition has 56,618 signatures and we hope to reach 100,000 signatures.
    4. Forward my blog to your friends and family urging them to take action.
    5. If you are a blogger, please share this with your readers.  If you would like to copy my blogpost word for word, please do so!

The links provided by JDRF make it simple to contact your Senators and Representative.  By filling in your name and address, your appeal is automatically sent to the correct government officials.  You are able to personalize your message by adding a few sentences to explain why this is important to you.  I used to be worried about trying to be an advocate.  JDRF has streamlined the process and made it “easy-peasy.”  You can complete Steps 1-3 in about 5 minutes.

I thank you for reading this.  More importantly, I thank you for contacting your elected officials to help ensure that your fellow Americans on Medicare have access to continuous glucose monitors.

If there is anyway that I can help you, please contact me.


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

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


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

Conversations: Two Type 1 Diabetics Have a Chat

Conversations Banner_T1T1My husband Steve and I just returned from a car trip to Maryland and West Virginia to visit relatives. On the way home I had decided I wanted to meet Sue from Pennsylvania, my fellow frequent guest blogger on Laddie’s Test Guess and Go blog. Sue and I had initially met on the ADA Type 1 board a year and a half ago, and since then we have talked on the phone twice weekly and become good friends. I live in a town called Farmington in the Finger Lakes region of western New York, and Sue lives in Harrisburg, the capital of Pennsylvania. While we were there Sue and her husband Marc took Steve and me to Hershey, where we took the Great American Chocolate Tour. A wonderful outing for diabetics, don’t you think? LOL

Sue and I came up with the idea of interviewing each other’s spouses while we were there, so we could each get the perspective of a fellow diabetic and supportive spouse. The following is a discussion between me and Marc, two Type 1 diabetics. As you will note, we have similar stories.

Sue: Marc, how did it come about that you were diagnosed as a diabetic?

MarcB_Head SquareMarc: I was diagnosed at age 49. I started losing weight very slowly but continuously. One day I realized my pants size dropped from a 38” waist to a 34” waist. Then a 32” fit well. As this was happening, friends were taking notice that I had lost a lot of weight. These same friends were asking me if I felt okay. My answer was that I felt fine. What really got my attention was a trip from Harrisburg to Atlanta. One day in the middle of our stay in Atlanta, I noticed that I was going to the bathroom approximately 4 or 5 times each hour. On the trip home (872 miles), I had to pull over at every single rest stop to go to the bathroom. I thought that I might have a urinary tract infection. I went to my doctor, where he pulled some blood and informed me that I had Type 2 diabetes.

Marc: Sue, how were you diagnosed?

Sue: In 1988 I lost several pounds over the summer with no effort. I also made frequent bathroom trips and was very thirsty, but I attributed it to the hot summer weather, and besides I was thrilled with my new dress size. In the fall I went for a pre-op blood test at the hospital. My doctor’s office called me the next day and told me that my blood sugar was 480. I replied that I knew what that meant, because my 17 year old son had been diagnosed as Type 1 at the age of 4. When I went to the doctor’s office, I was told that I was a Type 2 diabetic. I accepted this diagnosis because my mother was a Type 2 diabetic. My doctor gradually put me on various Type 2 diabetes pills and increased the dosages in an effort to improve my blood sugar, but it was never where it should have been. Eventually insulin was added to the mix, and I quickly regained the weight that I had lost. In 2000 my PCP referred me to an endocrinologist at the Joslin Center in Syracuse, NY. There I was told that like my son, I was a Type 1 diabetic.

Sue: How were you initially treated for your diabetes?

Marc: Initially I went to my family doctor and he put me on Metformin and instructed me to test my blood at least once a day. For the first year to year and a half, the Metformin seemed to work. I slowly gained back weight but at the same time, my diabetic numbers were escalating upwards. That is when the doctor recommended that I see an endocrinologist. When meeting with the endocrinologist he said to me, “You’re not going to like this. You need to be put on insulin as of today. Your family doctor did not do you any favors.”

SueNY_MarcPAMarc: How has your life changed since being diagnosed as a Type 1 diabetic?

Sue: As I transitioned from being a caretaker of a Type 1 to a Type 1 myself, I became more conscious and sympathetic of what my son goes through every day in trying to manage his diabetes. I used to think that if he did the right thing, his diabetes would be well controlled. I came to realize that there are very many variables to diabetes that we don’t understand such as how dietary fat delays the blood sugar in rising, and stress, a simple cut or a common cold could affect the direction blood glucose numbers go.

Sue: How has your life changed?

Marc: Luckily my wife is more energetic about things that I do, things that I eat, the amount of carbs I eat, etc. then I am.   I have to be more careful about what I eat. I am a person who likes pizza, ice cream, donuts, steak sandwiches, etc. Now because of diabetes, I have to think twice. My overall control of my A1C is not as good as I would like it to be (lack of CGM). When I had a functioning CGM my A1C was as low as a 6.9 and without it I’m up at 7.9. Of course my doctor wants me back at 7 or less.

Sue: Marc, please share why you don’t now have a functioning CGM.

Marc: I did have one. It was always covered by the insurance that was provided to me by my employer. When I turned 65 and entered Medicare, my existing CGM was in need of replacement. Medicare denied coverage and I am now at Level 4 in the appeals process, trying to get Medicare to cover this needed device.

Sue: How has your life changed without the use of your CGM?

Marc: I have been told by my present endocrinologist that I am a brittle diabetic and I have been suffering from hypoglycemia unawareness (the inability to detect when my blood sugar drops to a dangerous level making it possible for me to become disoriented, combative or in the most severe circumstance, blacking out). Basically, it affects every facet of my life.

Marc: Sue, I find it interesting that you are using an OmniPod pump. I use a Deltec Cozmo which I realize is an older pump. How would you rate your OmniPod?

Sue: Excellent question Marc. The OmniPod is my first and only pump since December, 2007. Like many people, I did not like the idea of having a device attached to me. I finally came to realize after reading discussions on the ADA Type 1 board that the pump was the way to go. I chose the OmniPod over the tubed pumps because I thought it would be more user friendly. I love it and have never looked back. My son has been on the MiniMed pump since January, 2008 and he loves his pump. Different strokes for different folks.

Thanks to Marc for joining the conversation at Test Guess and Go. Please join us tomorrow when Sue from Pennsylvania and my husband Steve have an honest and insightful conversation in which they compare their experiences as the spouse of someone with Type 1 diabetes. I hope you will read it.


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Out of the Box

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.


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.