Medicare and Type 1

I have been a Type 1 since long before they ever called it that. It's been 54 years now. Through no choice of my own, I have just learned that I am now on Medicare Parts A and B. This happened because I, at 61, get Social Security disability funds based on the fact that I am legally blind (very little peripheral vision). I will keep the prescription drug benefit offered by my former employer, but Medicare is to be my primary coverage. It seems to me I've read and heard all sorts of stories about problems Type 1s have had with Medicare, but I can't seem to find any of those stories now that I'm "doing" Medicare myself.

So I am seeking any information/thoughts/ideas anyone can share with me concerning how best to deal with Medicare and Type 1. Would like to hear positives as well as negatives. Thanks in advance.

Hi Mary Jo! I just started medicare last November so it's all pretty fresh. I have an integrated form of insurance that combines Anthem with Medicare and ends up with excellent coverage. (meds same as they were before which was pretty good, everything else including pump supplies 100%). So I was very excited to go on Medicare. I DO have very good coverage so I'm happy in the long run, but the short run can be frustrating. There is a LOT of paperwork; they will send you blood sugar logs and ask you to get A1C and c-peptides on a regular basis. (I've heard 6 months but haven't had my second requests yet). You are required to see your doctor every three months (something I didn't do unless I needed something, I'm pretty self sufficient with my Type 1 management). The other thing I didn't understand was what it meant that they are my primary. Even though they cover 80% and Anthem covers the other 20, Medicare can deny something and then Anthem won't pay. So they have too much control, imho. That's the bad news. The good news is that I saw several "denials" and they were all solved easily by either calling the doctor and having them resubmit (a lot of codes and dotting your "i" type silliness). For a couple things I had to work with a Supervisor at Anthem to straighten it out so I really recommend asking for a Supervisor at your other employer insurance when you run into a snag and developing a relationship with him/her. But just don't freak out when you see they are "denying" something because it seems pretty typical and it (so far) has always worked out for me.

One thing to know is that your test strips are covered on Part B, not your regular prescription drug benefit. (For me that means they are free! Yay!). Also, since you are on a pump, your insulin is also covered on part B. The pharmacy may be confused by this because insulin is only covered on part B if it is "insulin for use in a pump". Also, you can only get your Part B strips and insulin at places with contracts. For me that means I can no longer use Caremark mail away as I do for my other drugs but have to go to CVS. I hate CVS! I believe it is either CVS or Walgreen's but it may vary by state.

Oh yes, when you fill out your blood sugar log, be sure and have it come out to the amount you are used to getting because that is what they base it on. So if you do 8 regular tests but have it written for 10 to cover extra needs (like highs, lows, driving, etc), be sure each day is 10 or it at least averages out to 10.

I am on a pump, not a CGM (nor do I want one) but I have heard talk on here that Medicare does not cover CGM's and people are signing petitions and trying to change that. (We all know how long that could take!). But I did hear a couple people say they had their doctors write letters describing the circumstances that made it medically necessary for the patient to have a cgm and some did get one paid for. So if you can't find the threads you might want to post your own. Your pump should be fine as a Type 1 and someone who has been on it for awhile (and I assume you have a low c-peptide). But I would do more research on CGM's and don't have your hopes up too high.

Other than that last bit, hopefully this has been helpful. Don't hesitate to ask more questions.

Oh yes, and the thing I had the most trouble with was the first time I went for my test strips and insulin it was early in the year and they told me I had to pay a deductible on Part B. I had been thinking of my insurance as one combined system and told them "I didn't have a deductible". Well, turns out even though Anthem pays Medicare the deductible CVS wasn't willing to bill both and I had to lay it out. It took me months to get reimbursed (that's when I made my friend at Anthem and was in on lots of three way conversations that this intelligent woman found incomprehensible! Solution? I will time it next year so my deductible gets paid before I need my insulin and test strips. (Other doctors visits, tests, etc all paid the deductible with no input from me!)

Thanks for the insights. Under my current prescription plan (my employer's, offered through Blue Cross/Blue Shield of Texas, I have to get ALL my pump and CGM supplies through Liberty Medical, but I get my insulin from my local pharmacy. First thing I need to do the next time my driver is here is go and talk to my pharmacist in person.

Thing that worries me most about what you've written is the info about blood sugar logs. I haven't kept an actual logs since I started wearing the pump and CGM in January of 2012. In fact, I don't think I've kept an actual written log since I started using a meter sometime in the mid-1980s.

The other problem I see coming is that my endocrinologist started a concierge practice in January of this year, which means I don't pay for office visits--I pay once a year for four 40-minute office visits, 24/7 access by cell phone and text, a guaranteed appointment whenever I need it, and my A1cs. His office is no longer submitting anything to either regular insurance or Medicare. Don't know how that's going to work out in the long run, but I have a feeling I'll find out soon.

Guess all I can do is wait and see what happens next. Not looking forward to a ton more paperwork, but I'll cope. Again, thanks for your insights.

The blood sugar logs aren't something they expect you to have on hand, but they give you enough time to do 30 days of logs and a form to do it on, then you submit it to your doctor, and he puts it in your file.

I don't know how that concierge practice would work with Medicare (it probably wouldn't!) But I assume you are paying a fair amount for that, and even if you like your endo, it would be worth it to switch to a doctor who would bill Medicare and get your medical care fully covered!

Except I really like my endo (and really dislike the other "best" endo in our town). This is the first time I've ever had an endo who is actually a Type 1 and is married to a Type 1, who is also one of his office nurses, a CDE, helps train diabetic alert dogs, and is a big time participant in the Diabetic Online Community. So I'm going to stay where I am until I have evidence that the concierge model absolutely won't work for me.

Definitely sounds like a winner, and one which it would be hard to give up!