Countdown to Medicare with Type 1 Diabetes: 6 Months / The Journey

Laddie_Head SquareI occasionally have readers who contact me by email rather than leave comments on my blogposts. Kathy K from New York is one of those readers. She and I have an amazingly number of things in common. She was diagnosed with Type 1 diabetes in 1974 at age 23 after recently graduating from school and getting married. I was diagnosed in 1976 at age 24 after recently graduating from school and getting married. She has 2 children and 5 grandchildren. I have 2 children and 5 grandchildren. Do you see a pattern here?

Kathy is a few steps ahead of me in the Medicare process. Today she has written about some of her experiences as a newcomer to Medicare. There is no doubt that she knows “diabetes.” In addition to living with Type 1, she is a retired RN and BSN Certified Diabetes Educator.

Welcome, Kathy K from New York, and I hope that this is the first of many guest posts!


The Journey that is Medicare

kathy-krieg-headshotThank goodness that I found Laddie. I was fuming with frustration trying to get my first prescriptions, pump supplies and strips through Medicare. Even though Laddie is not quite there yet, her blog regarding her journey toward Medicare eligibility sounded exactly like mine.

The  psychological profile of most persons with Type 1 diabetes who use an insulin pump probably include such traits as independence, controlling, problem solving and motivated. (well maybe that’s just me!) I have lived with Type 1 diabetes for 42 years and thankfully had excellent health insurance and a wonderful physician willing to let me “run the show”

What a shock to realize that Medicare regulations takes all that away. You all know how we make sure we have enough pump supplies on hand, strips to cover frequent testing and insulin. I am here to tell you to be sure to have enough on hand to withstand ins and outs of new insurance rules.

Some of the biggies are Medicare does not cover CGM. Only 100 test strips are allowed if you take insulin and calculating your individual costs for medications is an accounting nightmare! But wait, there’s more to share. Do not take any of those restrictions at face value. My motto “Never take NO for an answer.” As many people that you call looking for help, that’s as many different answers you can get for the very same question.

Here is what I found out along my journey.  I am now knee deep in the muddy waters of Medicare coverage. Medicare has been approving some CGMs. A very specific appeal process needs to be followed but even courts have directed Medicare to approve of these devices. With that said, contact your supplier for help. They will probably offer you a decreased price for persons who have to pay out of pocket. My experience with Medtroniccountdown-to-medicare-6-months is that before you order supplies, you have to sign a disclaimer that states:  1) bill Medicare the full price and you will proceed with the appeals process to get the bill for $473.00 for a box of 5 sensors. If the appeal fails, you are responsible for the entire amount. Or 2) I want the sensors but will pay a decreased price up front now and cannot then bill Medicare and go through the appeals process. This price is about 45% off or approximately $260.

Another fact to keep in mind for those on an insulin pump, the insulin used in the infusion device is covered under Part B of your Medicare health insurance. Do not back down on this one. Find a pharmacy that has experience billing this way and use them. For me that was Walgreens. My Walmart pharmacist looked at me like I had two heads when when I was trying to explain this. I have a Medicare supplement policy that picks up all costs that are not paid by Medicare. So my cost $0!! Yep, that’s right—$0 for my Humalog insulin. My infusion sets and reservoirs are also covered under this same policy. That is one of my biggest successes in this journey. A new order for pump supplies, for me reservoirs and infusion sets, cannot be started until you only have 5 sets left!!! or 81 days from the previous order.

Another change I encountered is that I can no longer get my test strips from the pump company. There is a bidding process for providers in some areas and whomever Medicare chooses as the winner of the bid is the type of strips and the place where you need get them. Additionally, you will only be allowed 100 strips per month. Not nearly enough for me and probably you too! Once again Medicare also known as CMS, has a process for appeal. You need to supply a log of your tests and a physician note documenting the need. I have yet to submit for strips. I am not due to reorder yet.

Lastly, at least for now, is drug coverage. This is the biggest stumbling block for me. I tried the mail order supplier the insurance company suggested. I am quite dissatisfied with this company and that is another long story. I am finding it difficult to follow how much each of my medications cost and how far down the line to the donut hole I am. Hopefully, that’s a learning curve I will master soon.

DISCLAIMER:  Please do your own research into your specific state and insurance companies regulations. This is just my experience in the journey that is Medicare.

ONE MORE THING:  I have an additional psychological trait. I am so stubborn with a 2 year-old’s “ME DO IT!” attitude. Hummmm… A 2 year-old battles Medicare! Stay tuned.

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


Hey, He Needs his Insulin!

Sue B_Head SquareWho would ever think that it can be difficult to get insulin for someone on Medicare?

For the past 15 months my husband Marc has been on Medicare. During most of that time we have been fighting for Medicare coverage of a CGM because he has hypoglycemia and hyperglycemia unawareness. We thought that the CGM would be the biggest obstacle that we would encounter in dealing with diabetes under Medicare. It turns out that while a CGM is an extremely important device for Marc, insulin has turned out to be an even bigger obstacle.

Under Medicare Marc previously got his insulin with no problems because it was being billed under Part D. As a result of the deductible on his supplemental insurance policy, he had a substantial co-pay for the insulin. Recently he found out that his insulin should be billed under Part B of Medicare because he uses an insulin pump. Insulin under Part B provides significant savings because there are no co-pays and the cost is excluded from the donut hole gap in coverage. The Part D billing was partially our mistake because we didn’t understand Part D, Part B or any other parts for that matter.

Now we come to these past few weeks when once again Marc needed insulin. We were told that CVS Pharmacy has a contract with Medicare for insulin.  Marc took his prescription over to CVS which is only 3 minutes from our home. The pharmacist told him that she would run it through to see what the charge would be under Part B. After three days, Marc received a call from CVS saying that his co-pay would be $1900 for a three month supply. We could get no answer as to why the charge was so much.  Can you imagine how quickly Marc sent me to the pharmacy to pick up the script?

Because he’s a working stiff and I’m a stay at home person (I can’t say mom because the kids are grown and out of the house), I was assigned the task of trying to get insulin. I first called CVS’s customer service line. The wait to speak to a customer service representative was approximately 30 minutes. When I got through and explained what the situation was in trying to get the prescription covered by them under Part B, she put me on hold for another 30 minutes while she tried to contact the CVS Running into brick walls_2pharmacy that we use. She was told that they couldn’t tell her anything because they didn’t have the insulin script in their possession and there was nothing in their computer system. So much for the waste of 1 hour. I did straighten up the house during the long wait so at least some good came out of the call. Thanks to the person who invented the cordless speaker phone.

My next call was to Medicare. Again, I had to hold on for about 10 minutes until someone came on the line. My question to Myra (we got to be good friends during this conversation) was whether a diabetic on an insulin pump would be covered 100% for insulin under Medicare Part B. She asked me to hold while she did her research and when she came back on the line, she told me “most definitely” the insulin would be covered and the cost would not go towards the donut hole. Glory be. Finally concrete information that confirmed what I had been previously told. Maybe Marc would finally be able to get his insulin.

I asked her if she could give me the name of Medicare Providers who dealt with Part B insulin and once more I was asked to hold. When Myra came back on the line, she said there were at least 20 providers for insulin and she proceeded to give me a list of the names and phone numbers. I thanked her profusely and after an hour on the phone with her, I hung up thinking that finally, finally we had hit pay dirt.

I called each and every one of the so-called providers of insulin on the Medicare list and not a single one of them provides insulin. One pharmacist told me that they don’t handle insulin for Medicare because Medicare doesn’t reimburse them enough money to make it worthwhile. Now, I ask, what is wrong with this picture?  How can Medicare not know who supplies insulin? More importantly, how can the reimbursement be so low that pharmacies won’t supply it for Medicare recipients? I was at my wits end after all these calls. Marc needed insulin and I didn’t know what to do next to get it.

Suddenly, a light bulb went off in my head and I decided to call Walgreens.  Somewhere I had heard that they supply insulin to Medicare recipients under Part B.  Mind you, I have no Walgreens in my area and the closest one is 45 minutes away. But at this point, I probably would have traveled two hours to get the insulin. The call was answered immediately by a pharmacist who confirmed that Walgreen’s is a Medicare Provider for insulin. I felt like jumping for joy. I was told what was needed to get an approval from Medicare:  things like my husband’s height and weight, (thought this was strange), pump manufacturer, serial number, date it was purchased and whether it was a private purchase or an insurance company purchase. We faxed the information Running in circles_2immediately and were told by the pharmacist that she didn’t see any problem in getting Medicare to approve the insulin, and we should be able to pick it up on Sunday. Three days later I received a call from the pharmacist informing me that they could not supply the insulin. She said that when he signed up for Medicare, my husband waived his right to certain things. She couldn’t explain what those things were.

Now we were back to square one. Once again I called Medicare. When I mentioned what Walgreen’s had told us about waiving rights, Fred (I was establishing quite a lot of first name relationships with Medicare reps) said there was no such thing.  You don’t waive any rights when you sign up for Medicare. He said I should call Freedom Blue, Marc’s supplemental insurance company. I’m thinking “here we go again.” This whole thing was becoming like the movie “Groundhog Day”.

Nevertheless, I called the insurance company and was told that the only approved supplier under our contract was Liberty Medical. I don’t understand why I wasn’t told this a week ago. Liberty Medical was one of the suppliers that we had originally called when we started this whole process and they gave us a quote of $1100 for the co-pay. Now I was placing another call to Liberty Medical and after holding for 20 minutes, the customer service rep looked up my husband’s records and said that they could foresee no problems with supplying the insulin. So with fingers crossed, I ordered the insulin and hoped that this time we would get it.

One day later, UPS knocked on our door with a boxful of insulin. I felt like I had won a huge battle but was continuing to holding my breath hoping that we wouldn’t get a bill for a co-pay. Last week we got notification that Freedom Blue has accepted the amount that Medicare paid for the insulin. What a thrill that after a harrowing week of spending more then 11 hours on the telephone (most of it on hold), the insulin is finally in our fridge and we don’t have to worry about a large co-pay.

Success_3As a non-diabetic spouse of someone with Type 1, I give thanks to those in the diabetes online community who have guided me in my daily journey to learn more about diabetes. Because of you I now know that insulin for an insulin pump is considered durable medical equipment under Medicare and is covered under Part B.  There is no co-pay and it doesn’t go towards the donut hole…which thankfully will be eliminated in 2014. I hope that this information will be helpful to anyone reading this blog who might not understand Part B.

My whole reason for writing this blog post is to say once again that “diabetes is a challenge in and of itself.  There shouldn’t be these issues that make a diabetic jump through hoops to get what he or she needs.”  I seem to use this quote in almost everything I write and everything I say.  Let’s face it…a person can live without many things. One of those things is not insulin.

There is something horribly wrong with the system.