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Guest Post: Crusading for CGM Coverage.

I’ve used a Dexcom continuous glucose monitor (from the 3-day STS system to the G4 Platinum) since 2006, and the positive influence it has had on my diabetes management and overall quality of life is undeniable.  But as it stands now, when I reach the Medicare age, my coverage for CGM use will be denied.  Susan Berger, an advocate and caregiver for her husband (who has diabetes), is working to change that fact.  Today, Susan is guest posting about why CGM coverage is important, and how we, as a community, can help ensure that coverage.

*   *   *

Marc and I were high school sweethearts.  He was a year ahead of me.  When he graduated, he did a four year stint in the Air Force, 18 months of which were spent overseas in Okinawa.  Two months after he was discharged, we were married.  We lived in California for five years and this is where our daughter was born.   We returned back home to the east coast – Philly to be exact, where we lived for one year before moving to Harrisburg, PA and opening up a Hobby and Craft Shop.  We operated that business for 19 years, working side-by-side daily.  We also had a son during this period.  In 1996 we decided to go in a new direction and opened an Italian Ice and Ice Cream Shop, once again working side-by-side.  It was just a few months after we opened this business that Marc was diagnosed with type 1 diabetes.  What an irony to be in a business where you’re surrounded every single day with sweet ices, creamy ice cream and all types of toppings needed to make sundaes, shakes, etc., and being a diabetic.

His diabetes has impacted us in so many ways, probably too numerous to mention in one blog post.  Before he was fortunate enough to have a continuous glucose monitor (CGM), there were many times when his sugar would plunge downward so rapidly that I would either have to rush to get some juice into him if he was still conscious, or if I couldn’t catch it in time, use the glucagon to revive him.  Once he got a CGM (paid for by private insurance) I would describe our life as becoming pretty normal, practically back to prediabetes.  Much of the worry dissipated because we knew that the warning would go off he his blood sugar dipped too low.  When the CGM stopped working, and Medicare disallowed payment for a new one, life became extremely difficult once again.  We were back to all the fear and worry.

Marc has had some pretty close calls and it’s only either by luck …  or God watching over him that he hasn’t caused harm to either himself or anyone else.  There have been two incidences where he became completely disoriented while driving.  Both times he had been stopped by the police and fortunately for Marc, who makes his living by doing quite a bit of driving, his license wasn’t taken away.  When they realized he was diabetic, EMS was called to revive him and once he became cognizant, he was sent on his way.  Then there have been those times when I’ve had to revive him in the middle of the night.  I have used the glucagon many times over the past 15 years but my hands still shake when I have to give Marc a shot.


Our children live in Atlanta and I used to be able to visit them on a fairly regular basis, but now, I never leave Marc alone at night.  If he can’t go, then I can’t go.  I missed a wedding in Los Angeles because he couldn’t take the time off.  And I can’t have weekend get-a-ways with the girls because of the fear of leaving him alone at night.

Medicare guidelines do not provide for coverage of Continuous Glucose Monitors. I am an advocate for my husband who desperately needs a new CGM and previously received CGM coverage under private insurance before reaching age 65. I am a crusader for the entire diabetes community, whether you are on Medicare, will soon be on Medicare, have a Continuous Glucose Monitor presently, or might need one in the future. In December 2013 Representative Carol Shea-Porter [D-NH1] introduced a bill into Congress, H.R. 3710: Medicare CGM Coverage Act, which provides for coverage of Continuous Glucose Monitoring Systems by Medicare if recommended by a doctor. My recent post Baby Steps talked about the bill and many members of the Diabetes Online Community (DOC) asked how they could become involved in this crusade. I have just received an email from Congresswoman Shea-Porter’s Legislative Assistant, Marjorie Connolly, and she suggested the following:

  • The most effective step you can take is to ask your own Representative to cosponsor the bill.
  • Call your Congressperson’s DC office and ask for the email address of your Congressperson’s Legislative Assistant for health issues.
  • Email the Legislative Assistant the text of Shea-Porter’s Dear Colleague letter (link) along with a personal note. That way they will understand why the issue is important to you, the constituent, and they will also have the Dear Colleague to show their boss so that he/she will know how to sign on. The roster of the House of Representatives along with phone numbers is available here.

There are many diabetics such as my husband who never realized that when they went on Medicare, their CGM would no longer be covered. When the denial for coverage comes, and it inevitably will because Medicare considers the CGM a precautionary device, the arduous journey through the Appeals system is daunting, exhausting and psychologically taxing. The wait for a decision is beyond description and we have waited for 8 months. The entire process will only get harder as baby boomers become Medicare-age in greater numbers. We need to do something about this sooner rather than later. The only way to fight Medicare’s denial of the CGM is to get the guideline changed.

The best thing that we can do now is to let our voices be heard and join with Congresswoman Shea-Porter and her new cosponsor, Congressman Matthew Cartwright [D-PA17] in asking Congress to pass H.R. 3710, the Medicare CGM Coverage Act of 2014. Here is the Sample Letter and a copy of Shea-Porter’s Dear Colleague email blast. Don’t delay because the sponsors of this bill have begun their full-on push for support and every voice is important. If you are a fellow advocate and want to know how to help, click to download this document.

Please leave a comment on this post or email me [email in the advocate letter] if I can assist you in any way. You don’t have to be a person with diabetes to write the letter. You can be the son, daughter, mother, father, friend or as myself, the spouse of a diabetic. Please do this for all of those who so desperately need a CGM and can’t afford to pay for it out of pocket.

I love my husband and want him to be around for along time.  This is the reason why I became an advocate.  But just as important, in the time that I have been blogging, I have met many men and women who like Marc need a CGM and can’t afford to pay for the device and the sensors out of pocket.  And I have also been contacted by many who are worried that when their time comes to go into the Medicare system, they will experience what we are experiencing now.  I know that together we can make sure that Congress hears our voices and supports H.R. 3710.

*   *   *

Thank you, Sue, for speaking up on behalf of PWD.  (And for more on this issue, check out Kim’s post at Texting My Pancreas, and look through these discussions on TuDiabetes about CGM and Medicare coverage and on the ADA website.)

28 Comments Post a comment
  1. Deb #

    Wow, just wow! My T1 son is 40 years away from needing Medicare, but I never knew this information…

    02/19/14; 10:59 am
  2. Laddie #

    Sue, as a Type 1 who will reach Medicare age in 3 years, I thank you for all of the advocacy work that you are doing on behalf of your husband and for everyone like me. When I turn 65, I will have been on a CGM for almost 10 years with full insurance coverage. The thought of being without one is terrifying.

    Kerri, thanks for sharing Sue’s story.

    02/19/14; 11:04 am
  3. k2 #

    Sue – You’re amazing! I will be sending my letter, ASAP & I will be calling my Rep in Congress, .
    PLEASE Let me me know how else I can help!
    Kelly K

    02/19/14; 11:23 am
  4. Judi #

    Although basic Medicare doesn’t cover a CGMS, depending on where you love, you can sometimes get coverage for them. Just like with private insurance, the blanket statement “they are never covered” only applies to applies to basic Medicare, not to every option you can get.

    I have been under Medicare for years and have had a Medicare Advantage plan offered in my area. It purchased me a Dex 7plus when my Navigator failed, and a G4 when my 7plus stopped working. It allows me one box of sensors every month. All of these had no copay at all.

    In addition, a new pump was just purchased for me, covered at 100%. All my test strips are covered, for the number the doctor orders, way more than 4 a day, and I do not have to produce logs. All pump supplies are covered. Strips and pump supplies are also covered at 100%.

    So, it would be nice if basic Medicare covered CGMS. But since it doesn’t, people need to be aware that in some areas, there are other options available. Just like with private insurance, you need to check all your options before you purchase a plan.

    02/19/14; 12:30 pm
    • Sue Berger #

      Judi:

      I would be very interested in speaking with you. In speaking with my husband about your post, he said that in the booklet that we have on Medicare, it specifically says that if you have an Advantage Plan, you cannot purchase any other coverage. I believe we were also told the same thing by the Department on Aging where we went to discuss our options when the time for the roll over came. We had an Advantage Plan and this is the plan on which he was denied coverage of the CGM which led us to Appeal the decision since he had a Medical Necessity form from his endocrinologist. I’m totally baffled by your post so if you would be so kind as to contact me at mmb47a@gmail.com so that I can discuss this further with you.

      02/21/14; 6:48 am
  5. Sue Berger #

    Judi: My husband had an Advantage Plan and it definitely did not cover the CGM. The only people I have found who have been able to been to get their CGM and sensors covered are those people who have been able to have their insurance through their former employer. There never has been a problem getting a pump.

    Believe me, we investigated every Medicare plan available and could not find any that covered a CGM. I am in touch with people all over the U,S and they all have the same problem.

    Thanks for your comment and to the others who also commented. And many thanks to Kerri for getting my story out.

    02/19/14; 1:04 pm
  6. Alyssa Foxx #

    Hi Sue!

    I have no idea if you remember me, but I when I was a child I lived in Harrisburg and my sister, Bethany (the lover of vanilla water ice) and my family would often visit both of your shops: Joe’s and then Susie’s. I have Type 1 and wear a pump and I know that Marc and I often chatted about how amazing pumps were. I can’t believe what wonderful work you are doing!

    I was so excited to see your guest post, as I read Six Until Me religiously. I’m currently a graduate student at Yale in health policy and I would love to help in any way possible. I would love to chat further about your advocacy work; much of my research is in regulatory affairs.

    Alyssa Foxx
    alyssa.foxx@yale.edu

    02/19/14; 3:11 pm
    • Sue Berger #

      Am sending you a reply via your email address. Am thrilled that you responded to my post.

      02/19/14; 7:37 pm
  7. Judi #

    Sue, that isn’t true. The plan I have I found myself and purchase on my own. I do not get it through an employer. It is an individual plan that anyone in the area of where I live can purchase. They offer a few different plans and options and all the plans do have CGMS coverage because I looked into it. It is a feature the company believes in. I know that not all Advantage Plans cover CGMS but some do. It’s worth checking all the options in your area is all I’m saying. This plan also covers OmniPods, which someone else told me are not a Medicare covered benefit. I don’t have one, but a friend does with this plan, and they cover them.

    02/19/14; 5:40 pm
    • Sue Berger #

      Judi, you are fortunate that this is plan that you can purchase in your area. We live in Central Pa and I spent days and days calling all the companies in this area that offer Medicare plans and no one would cover a CGM. So you are very fortunate you live in an area where you can do this. And what is the cost of the plan? I know of a woman in California who, when she retired, was able to keep her insurance through her former employer but she paid almost $400 for this plan. That is over and above the cost of Dexcom sensors. Add that to what is taken out of SS each month for Medicare and she was paying $500 plus a month.

      I just know for us, this has been impossible.

      02/20/14; 7:09 am
  8. Carrie Flood #

    I am on Medicaide and my doctor was able to get a CGM for me by submitting a “prior auth”. I wore it for one week. I hated it and it has been sitting in my closet ever since. It was soooo painful to insert and uncomfortable to wear. I am sensitive to my blood sugars, so it never alerted me before I could feel it myself. It lost signal overnight and rarely worked properly. It did nothing to help me and only made my life more difficult. This was the newest version from Medtronic; I got it about 6 months ago.

    I can see from this article how other people may need this device. Am I allowed to sell or donate this system? Is it legal? Are there places to do that?

    02/19/14; 5:40 pm
    • Sue Berger #

      I have no knowledge of the Medtronic system. My husband, when he was able to have a CGM, used a Dexcom and I never heard any complaints about it hurting him when he inserted it or wore it. And I haven’t heard of anyone else having the problem that you have had.

      I have no idea of whether it’s legal to sell it or not. I would assume that you could donate it, but maybe someone with more knowledge on this subject will answer your questions.

      02/20/14; 7:13 am
  9. david wilson #

    About Crusading for CGM I am so glad I live in Melbourne Australia. Very briefly, Australia has always looked to the US for support and ideas stretching back to WW2 when without the US things would have been very different.
    But there are some things that Australia does that would help the US even though lots of people in the US think things are ok.
    The first is our medical care system which is wonderful. The second dare I say it – is a lack of gun availability – confined only to the police and criminals.
    I am off topic but maybe I should lobby my local member – Minister Kevin Andrews so that he can lobby your Congress – that is our Parliament lobbying your Parliament. This is what friends are for.
    I have type 2 diabetes and it is a bugger.
    david wilson
    melbourne
    ps – thanks a lot Kerri hope you come back down under soon

    02/19/14; 6:03 pm
    • Sue Berger #

      David: My aunt lives in Carlton, Victoria and has always said that Australia’s medical system is so much better then ours is here. She lived in the States for over 20 years and is now back in Australia where she says all of her medical needs are covered.

      As for your stance on gun control, I won’t get into that with you here but I am a staunch supporter of gun control. I shudder each and every time there’s gun violence and it seems to be escalating.

      Any means that you can use to help us would be very much appreciated. Thanks for posting a comment.

      02/20/14; 7:16 am
  10. Carol #

    Hi Sue,

    Thank you for writing this post and for sharing your story and your experience. I am a type 1 PWD (insulin pump for 19 years, MDI prior to that) and on Medicare for the past 10 years.

    I will be following your direction to contact my representative. And will share your post with my endocrinologist. Thank you for advocating for us – it means so much.

    02/21/14; 1:58 pm
  11. Cindy #

    Way to go Sue!

    Marc, I have been an insulin dependent PWD for over 30 years. It happened to me when I was 26. You were older when you were diagnosed. What I don’t understand is Sue having to deal with your lows…. Where were you? My own experience was…. I must learn the warning signs that my body gives me during plummeting blood sugars and deal with it, so the ones I love and the rest of the world do not have to worry about me so much. I have also had lows that happened without warning, but that made me test more often, especially before driving, or running errands, or going to bed….Also always having quick sugar with me at all times keeps me from wasting the time, anxiety and money of others.
    CGM is great, and I would love to have it… However, PWD’s have to be responsible for themselves and their disease.

    02/22/14; 4:30 pm
    • Sue Berger #

      Cindy: There is no way that Marc could do the amount of testing that would be required to make sure that he doesn’t experience a severe low. His lows come on so suddenly and without any warning, and because of his occupation, he’s in the car a good part of the day, and in order to ensure that he doesn’t have a low while driving, he would be testing his blood sugars 20 times a day. That would not only be impossible, but also impractical. He is for the most part responsible for his diabetes and requires very little of me to help manage it….his hypoglycemia unawareness makes it virtually impossible for him to have a productive life without a CGM. You are fortunate that you can manage yours without burdening your loved ones or the rest of the world but this is not the case for everyone. This is why I became Marc’s advocate. I know he would be doing the same for me if the circumstances were reversed.

      02/23/14; 6:23 pm
      • Cindy #

        I would be interested to know how many times a day Marc is testing his blood now. My job required that I drive a car to see customers. I would test before driving it takes 30 seconds. And it is considerably cheaper that CGM. I know, I’ve tried it. I believe you may be blowing things out of proportion saying Marc would need to do 20 tests a day. Perhaps 7 a day while practicing good diabetic management would suffice. Been there done that… It’s not easy, but the responsible thing to do. Lobbying to get tax payers to foot the bill for a very expensive way to NOT be diligent about diabetes management is going in the wrong direction. Lobbying to help people understand the importance of healthy choices when dealing with disease… Would ultimately end diseases of all sorts.. Especially auto immune ones like diabetes.

        02/24/14; 2:55 pm
  12. I understand that Medicare will NOT cover a CGM, but will continue to cover a
    penis pump.
    I have been Type 1 for 55 years, and I have had many seizures due to low blood sugar. I continue to suffer lows, and I am not hypoglycemic unaware, but, if I’m asleep, I do not necessarily awaken.
    My endo pushed me to get a CGM, but I can’t afford one.

    02/23/14; 11:42 am
    • Sue Berger #

      I so agree with you Linda. What makes a penis pump more important then a CGM. I don’t have the answer for that. You are one of the reasons why I’m fighting so hard to get the guideline changed. There are so many people out there, like my husband and you, who so desperately need a CGM and can’t afford the cost of the device much less the sensors needed. I’m hoping that everyone who reads all the blogs that we’ve contacted and asked them to put something on their sites, will write their Congressperson and request that they support H.R. 3710. We need to do this.

      02/23/14; 6:26 pm
  13. Cindy #

    I just need verification about a few things described in the comments. I am definitely on board with CGM as a viable part of good diabetic management. However, I also need to know if the people who have rapid onset lows with no warnings and seizures etc. have been diligent about looking after themselves and their diabetes. I can only go by my own experiences and what my endocrinologist told me. Example.. When I had lows that I was not aware of… My doc asked how well I was controlling my blood sugars.. And I had to admit… Not very well.. I was told if I get back to caring… Then I will start to feel them again… He was right. I also had a scary driving incident on my way home from work… But again I had been eating all the sugary Christmas goodies all over the office… And thinking my blood would be high… But it went low at the end of the day and I was lucky I did not kill anyone… It was MY behavior that caused the problem… My point is… Really? Do these awful things happen to diabetics who are managing their disease? I really don’t think so. If I am incorrect please let me know. Thanks.. PS one exception may be the disease had been destroying someone’s body who can’t or won’t go to the doctor until it’s way too late …

    02/24/14; 1:37 pm
    • Hey Cindy – Just to jump in, I’ve had very low blood sugars without symptoms as a result of running my blood sugars tighter. It was as though my body was used to 80 mg/dL, so I didn’t feel my low symptoms until I was in the 50′s. For me, this is dangerous and I’m safer with a CGM. So your assumption that “awful things” don’t happen to people who tightly manage their condition is incorrect, at least from my personal experience. (I say this as a person with type 1 diabetes for 27 years who goes to the doctor on schedule, exercises regularly, and eats well overall.)

      02/24/14; 5:07 pm
      • Cindy #

        Thanks Kerri, I follow your blog faithfully, and I have been a diabetic for 30 years and had three healthy kids etc. so you are saying you lost the ability to feel lows because of tight control? Okay… I did not realize that could happen. I guess what I am trying to say is… I wish PWD would tell the whole truth about what is happening to them and why…. This disease can be annoying, troublesome, expensive, dangerous… BUT … Talking about all that is therapeutic for some.. But what really would help is talking about the good things that can come from being diagnosed.. Like learning how to take good care of ourselves. Helping each other with ways to stay on top of the daily struggles with tips and tricks and not being a victim. There are plenty of people who can afford pumps and CGMs and then there are those who are in real need of help financially and need life coaching. Spend money on teaching PWDs that really can’t afford even meters, test strips, and syringes… They are the ones in need… Not someone who already has a pump and now wants (needs, in your case and maybe Marc’s) CGM. I hope u understand what I am trying to say. And if not … I guess I am a person who believes in taking a positive approach to whatever comes and wants to show others how it’s done.

        02/24/14; 6:24 pm
    • Nolan Kienitz #

      Cindy – Ditto what Kerri has noted about keeping tight control and not being able to always notice the lows.

      I was diagnosed T-1 in 1967 and I’m currently 64. Been wearing pumps for 25+ years and CGM devices for 5+ years.

      Over time the receptors that ‘sense’ the low blood sugars don’t work as well as they used to. I can drop in a heartbeat and have had a history of passing out overnight and my wife has made use of the Glucagon kits more than once or twice. Visits from EMS folks at 2:00A are not fun either.

      I currently wear my Dexcom G4 24/7 and am quite concerned about going on Medicaid/Medicare when I turn 65 (next year … 2015) and how I’ll be dealing with that.

      Back to the receptors … the longer one has diabetes the more likely the patients receptors will be less than effective when needed … thus one of the problems related to our management of diabetes.

      Cheers,

      Nolan K.
      Plano, TX

      03/1/14; 10:35 pm
  14. Allison #

    Kerri: As always, thanks for everything you do and for posting this guest blog.
    Sue: Thank you so much for your advocacy. I have contacted my congressman and included a very detailed description of what CGMS means to me, and to the financial health of the healthcare system overall. I am going to ask all of my family members to do the same and they will. Also, thank you for stepping out into the limelight and sharing your experience. My heart broke a bit when I read some of the comments. I am heartened by your steadfast and reasoned response. My doctors routinely tell me that I am the best diabetic patient that they have. I say that to specifically follow it up with pointing out that I get unpredictable lows (and highs) routinely and thank goodness I have the additional safety measure of CGMS. This is not a “set it and forget it” disease and never will be which is why CGMS is so important. Thank you for advocating, sharing, and laying great groundwork upon which others can hopefully help with a collective push.

    02/26/14; 1:11 pm
  15. Sue Berger #

    Final Reply to Cindy:

    Much the same as Kerri says, my husband tries to do the right thing to control his blood sugars. He can eat the same thing for days in a row and everything is fine. Then all of a sudden, the same thing that he’s eaten so many times before could cause his sugar to drop rapidly. It can be due to having a sleepless night, starting to get a cold…maybe even a sore somewhere on his body. He had surgery in September of 2013 and his sugars were all over the place for days. And he had a cortisone shot in his foot and once again, it took days for him to get his sugar back to a decent level. There are so many variables. He also goes to his endocrinologist regularly and really tries to take care of himself. I can only say that you try to be perfect, but perfect doesn’t always work.

    I can’t answer all your questions because I am not the diabetic. I do the meal preparation in our family and I can only do my best to make sure that he’s eating as healthy as possible. I leave the rest up to him and to his doctor. Together they devise the best way for him to manage his diabetes. And as Kerri also says, having a CGM is safer, especially when you can’t feel the lows coming on.

    I would like to put this to rest now as I am very busy trying to get H.R. 3710 out there in the DOC in hopes that it will receive a great deal of support.

    Again, I thank you for your comment, but I think we have to agree to disagree.

    02/27/14; 3:28 pm
  16. Sue, thank you for your tireless work and advocacy on this issue. I am grateful for your spirit and energy, and really appreciate all that you are doing.

    03/20/14; 1:01 am

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