Who 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 pharmacy 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 immediately 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.

As 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.