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Guest Post: Keep Calm Once They Cover Dexcom.

Today, Colleen is taking over my blog while I’m taking a few days off.  And I love her introduction bio so much that I’m pasting it in without edits.  Colleen is terrific, opinionated in a way I respect deeply, and today she’s talking about the importance of having access to a continuous glucose monitor (CGM) as she ages.  Take it away, Colleen!

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I signed up for Medicare this year. Deep breath. (I’m having a really difficult time believing that I’m 65.)

I’m not using Medicare (yet) because I’m still working. I like my job. I like my insurance. I like my five minute commute. But mostly, I like my Dexcom CGM (Continuous Glucose Monitor).

I always thought I’d be retired, lazing around, maybe playing some tennis.

Not really, I’m not lazy and I haven’t played tennis in a gazillion years. But, I really was looking forward to doing some volunteer stuff, especially working with kids who have learning difficulties. I’m a former Special Education teacher and I love seeing/helping kids to “get it.” Literally watching that invisible light bulb start shining when they would “get it.”

Instead, I’m working so that I can keep my Dexcom CGM.

Not to worry. I’m not suffering – I work as a church secretary, an absolutely delightful job!

Several years ago, when I started seeing a dermatologist, he explained that removing those things growing on me would be covered by my insurance because, “It’s covered by Medicare.” I was insulted and stated, “For heaven’s sake, I’m NOT on Medicare.” He then explained that if it was covered by Medicare, then insurance would pay for the procedure. “Oh…”

And now, turning 65 – my own light bulb has turned on. But it’s not going anywhere.

I remember talking with my primary care physician at an appointment once and saying how I work so hard to maximize my use of health insurance. I am careful to coordinate lab work with her and my endocrinologist. I keep up with scheduled appointments. I try very hard to be a wise consumer of health insurance. And she calmly replied, “You’re cheaper to Medicare if you’re dead.”

Well, that sucks.

Maybe – but – the cost of keeping me alive might be a sh**load more (Kerri said I could use bad words) [Editor’s interjection:  You can use all the words you’d like, Colleen.]  without my CGM.

And I truly believe that soon – Medicare will figure out that the expense of a CGM is whole lot less than the expenses of ambulances and ER visits and hospitalizations.

There is no public transportation up here in the woods so, I have to drive.

I almost always (I’m being honest) (95% of the time!) check Dexcom before I drive anywhere. I frequently have to make short trips during the day for work and Dexcom has certainly kept me in my office/the parking lot sipping on juice before leaving.

I hate shopping. Yes, really. Shopping irritates me. Shopping and going low is really annoying. The nearest real mall is over an hour away and there have been times that I’m pulled over at an exit or a rest area because Dexcom beeped at me. More juice … (Not easy in the winter when it’s frozen. Yes, I have glucose tablets, also.)

We get a whole lot of snow up here on our hill. And it’s not plowed every hour on the hour. There are times we literally cannot get out (or in). I’ve checked with our local police to ask – what would happen if I needed an ambulance in the middle of a snowy night? The answer – They’d hike up our hill with a sled to get me out if needed. Scares the sh** out of me.

Way back when I was diagnosed, I knew I would want a pump. At that time, you had to have been on MDI (Multiple Daily Injections) for a couple of years before they (insurance) would even think about approving a pump. By the time I was ready to start pumping, it wasn’t that difficult.

Thank you to everyone who advocated for pumps for all of us who want one.

Way back when, Kerri was one of those people writing about her fight to get a Dexcom CGM – with letters and refusals and more letters and more proof and finally – Dexcom. By the time I was ready to start using a CGM (I always swore there was NO WAY – have you seen the needle in those things?), getting a CGM wasn’t as difficult. (That needle? Not an issue.)

Thank you to everyone who advocated for CGMs for all of us who want one.

And now – those of us who are and will be the d-elders need to be able to continue using or begin using CGMs for better health and safer living. And your help is needed. You’re not just helping the older d-people. You’re helping yourself. Because you know what? We’re all leading healthier lives even with Diabetes because we work hard to stay healthy. If a CGM helps, we should all have access to that.

How can you help?

JDRF makes it easy. Go here:

Help others, and help your future selves –  and the children who will grow up – just by contacting a few of your state’s senators and representative.

It’s a win-win for all of us.

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From Colleen:  “I’m Colleen and I have type 1 LADA – Latent Autoimmune Diabetes in Adults. Diagnosed at the age of 55 (yes, really!), I was just a tad surprised. My husband and I live and work in New Hampshire and even enjoy the snowy winters. We could be retired but, the need for health insurance has us both working at a local church. Yes, together. Yes, we’re surprised. No, we haven’t killed each other, yet.  Hope you’ll introduce yourself and it’s nice to meet you!”

Please say hello to Colleen, either on this post or at her blog, D-Meanderings.  For more on the goal of covering CGMs for Medicare, check out these links:

12 Comments Post a comment
  1. Tim Steinert #

    Rock On, Colleen!

    We all should be lighting a fire under Medicare because we can save them so much money and save ourselves unneeded trips to the hospital. I was also gifted with diabetes later in life (43) as if being middle-aged isn’t bad enough!

    The truth is, as we take better care of ourselves, we’re going to live longer. So, I think it’s such an appropriate punishment to have a helpful tool yanked from us when we retire–not. The CGM is a medical device that is both maintenance and preventative. Arguments against it are as lame as the arguments against more strips for Type 2 diabetics.

    We should all crank up our crankiness to get this done. “Hey– you kids—get off my lawn!”

    08/25/15; 1:35 pm
  2. Bil #

    After 55 years with T1D, I’m about to join the (small) group of us who receive coverage from Medicare. Too bad CMS has labelled CGM “precautionary” and refuses to cover it.
    I’ve contacted my Congressman and both Senators to ask them to support legislation making it available to us and was disheartened by the response (from Rep. Cooper) and the total silence (from Senators Corker and Alexander). I guess none of them have ever experienced a BG of 33 at 2AM.. I suppose that one man’s “precautionary” is another man’s “preventative”, but getting into a war of words with politicos strikes me as a total waste of time. Let’s get somebody to put some data together.
    I didn’t get to this age without taking pretty good care of myself and it irritates the hell out of me that Medicare covers dialysis and prostheses, but not CGM. Let the complications get you and you’re covered. Survive a long time with a serious, but manageable, disease and you’re on your own.
    And while I’m ranting about ignorance in government, let me add a few words about Libre and the FDA. Abbott’s strategy to gain approval is an interesting one. Only a doctor can read the numbers off of it. Apparently, I’m not capable of reacting appropriately to real time BG data. Well, guess what.? Successful diabetics do exactly that every single day. End of rant.

    08/25/15; 1:46 pm
  3. Laddie #

    Thanks for the spreading the word, Colleen. Medicare is close for me and I dread the lack of CGM coverage and the battle for coverage of other supplies.

    (I had no idea that you knew so many bad words!)

    08/25/15; 2:26 pm
  4. Great post Colleen, I’ve already used DPAC to contact my representatives about CGM and Dexcom coverage. It’s not too far away for me now. Not covering it is so short-sighted that I’m amazed it hasn’t happened already. But of course politicians only respond to a lot of pushing.

    I think the DOC should make a concerted effort to contact their politicians (email, phone, in person) to let them know how they will be personally affected by this change.

    08/25/15; 2:31 pm
  5. Matt #

    I support coverage for the CGM but how is it that insulin does not have a generic alternatives only 3 companies competing if any drug should be available as a generic it should be insulin it’s been around for 100 years all the price matching between the companies seems to me that the market isn’t competitive & insurance companies dictating which brand I use based on coverage.

    08/25/15; 2:48 pm
  6. Dan #

    Hi Colleen,

    I have some information for you regarding the above postings. A recent Federal Court ruling was determined on May 26, 2015, approving coverage for CGM units. One way to find out the details of the case can be found on DiabetesMine. Check out the last link listed above, number six. Go to the bottom of the article and read the two postings by Dan Kraft, The first post can take you to the actual Court Case. The second post adds an additional cost for an EMS assisted hospital run for a hypoglycemic event.

    A door has been opened. The current process is difficult at best. However, the ability does now exist to be successful for approval for CGM coverage.


    08/25/15; 8:53 pm
  7. Thank you Colleen for writing this great post. I’ve been a Medicare recipient for the past several years and have found to my great disappointment how little coverage Medicare provides for essential diabetes maintenance. I would definitely welcome the use of a CGM.
    Life with type 1 for the past sixty years has taught me to never guess my blood glucose level, so I test often, but my ‘crystal ball’ has yet to warm me of trends.

    I’m working with you and many others to educate politicians that preventative care costs a lot less and should be the focus of Medicare services.

    08/25/15; 9:19 pm
  8. I am a strong believer in a PWD’s ability to receive the best quality care possible, and that includes CGM use for Medicare patients. Hi Colleen! I enjoyed this post and I will continue to fight for your rights!

    08/25/15; 9:34 pm
  9. Jaime B. #

    I’m only 27, but I am right there with you in the fight to get CGM covered by Medicare! I work for the state of PA and our insurance follows Medicare guidelines. No CGM coverage for me! I would love to be a mom, but I can’t seem to get my A1c below 7.0 and I haven’t been able to afford $350/mo out of pocket costs for the Dexcom sensors just yet. Keep fighting!

    08/27/15; 6:10 am
  10. Docket No. C-15-1021 Decision No. CR4596: On April 29, 2016, a judge in Medicare’s Civil Remedies Division struck down the policy that CGMs are precautionary and therefore not durable medical equipment (“DME”) eligible for coverage under Medicare. The judge noted:“The contractor [NHIC] and CMS have not produced any record in the form of peer-reviewed literature, medical opinions, or even an analysis from an individual with a medical background that supports a conclusion that CGM is never reasonable and necessary irrespective of the beneficiary’s condition. . . There is simply no evidence before me that explains how CGM does not meet DME requirements or why CGM cannot ever be reasonable and necessary under [the Medicare Act].” Accordingly, the judge found that the policy statement that CGM is precautionary and therefore not covered under Medicare’s DME benefit to be invalid under the reasonableness standard. The judge reviewed each of the statutory elements for DME and how CGM satisfied those elements. Neither the Medicare contractor nor CMS submitted a single document or proposed a single witness in support of the position that CGM is precautionary.

    05/6/16; 9:00 am
  11. Case No. 13-CV-990 Whitcomb v Sylvia Burwell Secretary of Health & Human Services. Medicare Cannot Deny Coverage for CGM …

    Not only has a judge in the Medicare Office of Hearings and Appeals found coverage for CGM was appropriate, but the District Court of Wisconsin has ruled that claims cannot be denied. A remand sentence-four 42 U.S.C. § 405(g) reverses the Medicare Appeals Counsel’s decision and is a “victory for the Plaintiff and terminates the litigation”. In the present matter the Federal Court’ ruling recognizes that goverment’s refusal to cover a Continuous Glucose Monitor for the management of Whitcomb’s diabetes was not supported in law or fact. 

    [Decision page 4] Determination regarding whether a certain item or service is covered by Medicare, coverage “decisions are made based on the individual’s particular factual situation,” 68 Fed. Reg. 63692, 63693 (citing Heckler v. Ringer, 466 U.S. 602, 617 (1984)), “and whether the item or service is reasonable and necessary, Almy, 749 F. Supp. 2d at 320.”

    [Decision page 7] “the Secretary, through the Medicare Appeals Council, erred when it concluded that A47238 is incorporated into LCD L27231. Nothing in LCD L27231 attempts to incorporate A47238”… which unambiguously states that continuous glucose monitors are considered precautionary and not covered by Medicare.

    [Decision page 8] “If the reference to the continuous glucose monitors contained in the Article had been included in the LCD, the outcome of this case likely would be different. But the fact that the LCD is silent as to whether continuous glucose monitors are covered is not a matter the court can overlook. Looking to Articles for coverage determinations would undermine Section 522 of BIPA, whereby Congress created the right for certain beneficiaries to challenge coverage language contained in LCDs. See 68 Fed. Reg. 63692, 63693”.

    On May 26, 2015, the District Court for the Eastern District of Wisconsin ruled that the Secretary of Health and Human Services cannot deny coverage of a continuous glucose monitor based on a statement in an Article that such monitors are “precautionary.” The case reflects the arduous path that Type 1 diabetic Medicare beneficiaries endure while trying to secure coverage for a medical device that is considered the standard of care for Type 1 diabetics with hypoglycemic unawareness – a device widely deemed necessary to prevent life-threatening hypoglycemic events. The Medicare beneficiary had sought coverage from United Healthcare’s Secure Horizon’s Medicare Advantage Plan. Although United Healthcare covers CGM on a limited basis for non-Medicare beneficiaries, it does not cover CGM for Medicare beneficiaries.

    Through every phase of the multi-step Medicare administrative appeals process, the Plaintiff appealed the denial of a CGM that she got in April 2011. Although statutory regulations provide that an administrative law judge should issue a decision within 90 days of a request for an administrative hearing, 231 days passed until the Plaintiff received a favorable administrative law judge decision, i.e., February 2013. United Healthcare appealed the favorable decision and the Medicare Appeals Council reversed the decision asserting that the Medicare contractor’s local coverage determination (“LCD”) incorporated a Medicare Article that deemed CGM to be “precautionary.” Although Medicare regulations require the Council to issue a decision within 90 days of a request for review, the Council took approximately six months to render a decision, i.e., August 2013.

    The District Court, however, found that the LCD did not incorporate the Article by reference nor vise versa. Further, the Court noted the distinction between LCDs (which indicate whether a device is reasonable and necessary) and Articles (which address non-coverage information such as coding and payment). The Court reasoned that if a Medicare contractor could issue a coverage decision in an Article, it would subvert the LCD development process and would undermine Medicare beneficiaries’ ability to challenge a non-coverage policy as envisioned by Congress under Section 522 of BIPA.

    The Court remanded the matter to the Medicare Appeals Council to determine the Medicare beneficiary’s need for CGM based on her individual medical condition, i.e., without reference to the Article. The case underscores the challenges faced by Medicare beneficiaries seeking coverage of a device that is the standard of care, and the Office of Medicare Hearings and Appeals’ and Council’s failure to meet statutory deadlines, even for Medicare beneficiaries.

    05/6/16; 9:01 am

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