Countdown to Medicare with Type 1 Diabetes: 12 Months

Laddie_Head SquareA year from today I will be on Medicare.

I have been one of the privileged. I have always had good health insurance and have never had to worry about running out of insulin or test strips. I have never had to choose between buying groceries and filling my prescriptions. I have had access to insulin pumps and full insurance coverage for a continuous glucose monitor.

I don’t exactly know what to expect with Medicare. Over time I suspect that I will figure out most of what I need to know. Right now I feel as though I am looking into the dark abyss of the unknown.

I know that there will be a lot of hoops to jump through to obtain a sufficient number of test strips and supplies for my insulin pump. I know that due to Medicare law I will no longer be eligible for medical device upgrade programs. I know that CGM’s are not covered by traditional Medicare and I will continue to advocate to have that changed. I know that a handful of Medicare Advantage plans cover CGM’s and I will have to do my homework to choose the best option for me. Because I use an insulin pump, I will purchase my insulin under Part B and I have heard nightmares about finding suppliers. The newly-instituted competitive bidding program for diabetes supplies worries me.

I currently pay a huge monthly amount for health insurance. It is possible that even if I must self-fund a CGM, Medicare will be a better financial deal than my current situation. I know that I will have a lot of decisions to make as I select my Medicare coverage and I suspect it will take many hours to figure out how things work. I know some people who have cruised into Medicare with few problems. I know others who have struggled to get test strips, pump supplies, and insulin.

There is a sadness in realizing that I will probably not get access to any or all of the new technologies and medications coming to market in future years. Things like the artificial pancreas, encapsulated insulin-producing cells, and smart insulin will likely not receive Medicare coverage for many years, if ever. At the same time I have to remember that I was diagnosed with diabetes in the days of one daily injection of a pork- or beef-based insulin. There was no home blood glucose testing and I peed on Diastix strips to get an approximation of what my blood sugar was several hours earlier.

The likelihood that I won’t always have the newest and greatest doesn’t mean that I won’t thrive under Medicare. Medicare is not something that I have a choice about and therefore I will make it work. I am expecting roadblocks and hassles in getting the medical supplies and medications that have always been easily purchased. I’ll probably scream as I navigate automated menu systems on my phone. I’ll probably rant and rave when things don’t go the way that I expect. But I will learn and I will be fine.

Many years ago very few people with Type 1 diabetes lived long enough to make it to Medicare in relatively good health. People like Richard Vaughn and Tom Beatson were a rarity. In coming years more and more of us with Type 1 will be reaching Medicare age. We have a lot of learn about Medicare and Medicare has a lot to learn about our needs.

My aim is to chronicle my journey as I countdown to Medicare. Over the last year I have occasionally grown tired of blogging. However, I have never doubted that I want to keep Test Guess and Go going as a storybook about Medicare with Type 1 diabetes. Right now I have no great words of wisdom to share. For better or worse I am on a one-way road to growing older with Type 1 diabetes and I don’t don’t plan to spend my senior years complaining or in poor health. So let’s get going….


Please note that Medicare began reimbursing the Dexcom G5 continuous glucose monitor  in 2017. Most of my concerns in the Countdown to Medicare series are still relevant. But the details may have changed by the time you read this post.   Laddie 6/28/18


11 thoughts on “Countdown to Medicare with Type 1 Diabetes: 12 Months

  1. You make it all so real. I’m grateful that you are chronicling this.

    The removal of a device you rely upon seems like an act of violence to me. I can’t imagine CGM will remain off the menu for long.

  2. Life continues after Medicare. I’ve been on it for 9 years, have a CGM (I pay 20%), have enough test strips ( PA is necessary) , although I’ve had to change Insulins and test strips based on changing formularies. Not smooth going but doable. Gather a support group of near Medicare and on Medicare T-1s and share experiences. That’s easier than going into it alone. Kinda like the old investment clubs where sharing and buying go together.

    • I go on Medicare in one month.I am worried and will definitely follow this blog. Here is one question that I have now .I dream of getting a CGM. My body is changing and my sugars are more unstable with aging. However, I understand that Medicare will not pay for one.You mention that yoiu have a CGM and pay 20% . What supplemental insurance do you have? My understanding is that supplemental insurance only covers what Medicare covers helping with co-pays. So how could your insurance pay for a CGM not covered by Medicare.I would love to use that company.Please reply to me .This is such a serious issue for me now.

      • Ruth, Al has CGM coverage through an Advantage Plan not a supplemental plan. My understanding is that Advantage plans have to cover everything that Medicare does, but they are allowed to add coverage for things that Medicare might not pay for. Advantage plans are offered on a local basis and unfortunately aren’t transferable from state to state. I have heard of a few people in several states (New York and Minnesota are two) getting CGM coverage through Advantage plans, but they are very rare.

  3. Thanks so much for doing this. I am two years out from Medicare so will follow you with great interest. Best of luck!

  4. We have little choice but to get older, But we do have a choice to advocate for the number one issue in my opinion which is CGM coverage by Medicare. Laddie, I doubt we will get it done in one year, but trust me D sister we will get there.

    I referred your blog to the TUDiabetes blog page for the week of March 28, 2016.

  5. I pray Medicare will cover it in 19 months as that is the plan for my official retirement. I have used it continuously now since 2007 and more than once it has saved me from paramedic visits and resultant ER trips. Those cost big bucks so it does save big time in that scenerio!

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  8. My husband has been a type 1 for 46 years he will turn 70 this sept. before going on Medicare his supplies (test strips)were covered no problem through our prescription coverage. He wears an omnipod insulin pump we are fortunate to have coverage for that and our deductible has gone up due to affordable care act which is okay. Medicare will not supply him with testing strip he must turn in a testing log and still it has been denied (not enough information) medicare says he tests six times a day ,he has not suffered the side-effects of diabetes as of yet. Interestingly enough his insulin is not regulateded by medicare because they do not recognize omnipod insulin delivery system,so our drug coverage pays for this.

    A type 1 diabetic does not need more stress in his life, it would be great if medicare would not interfere with diabetic supplies. And should be administered under medicare part d.

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