by Joanne Milo
www.TheSavvyDiabetic.com
16 July 2014
Medicare (except in Advantage HMO plans) does not cover any CGMS. There are codes for sensors, receivers and transmitters! But their ruling, in 2008 (when they just came on the market), deemed them “precautionary.”
How is “precautionary” defined? Who knows … it’s certainly not a term one can find in all the Medicare formulary data. So this becomes circular logic. No one knows what “precautionary” means but because Medicare cries, “PRECAUTIONARY,” CGM is NOT COVERED.
I just couldn’t believe that I couldn’t somehow convince Medicare that CGM was not only critical to my life and my long term well-being, it was also cost-effective over multiple daily test strips. I threw my heart and soul as well as hours of research and letters from my doctors.
First Level Appeal: DENIED because CGM is PRECAUTIONARY.
Second Level Appeal: DENIED because CGM is PRECAUTIONARY.
Third Level Appeal and phone hearing with Administrative Law Judge, whose 50 year-old son has
diabetes (probably Type 2) and does just fine testing 2-3 times/day. DENIED because CGM is PRECAUTIONARY. The ALJ even wrote that I proved medical necessity and I proved cost efficiency! But still denied!
Fourth Level Appeal: DENIED because CGM is PRECAUTIONARY.
My next step, if I had the time and money, was to sue Medicare. Don’t have the money or time. Asked for support from a CGM company … again DENIED.
CGM has been available to the diabetes market since 2008 … and been improved and revised. According to Dr. Steve Edelman, UCSD and a T1, the best strategy for avoiding sudden death in bed is to use a CGM. This is an essential medical device in the treatment of Type 1 diabetes!
Why is it taking so long? Why isn’t Medicare listening and revising their policy? What about Congress? What about ADA and JDRF? AARP? Insulin pump and CGM companies?
Well, there is a bill in Congress that I have been tracking: HR 3710: Medicare CGM Coverage Act. It was introduced December 11, 2013. You can read about this bill at: http://tinyurl.com/n2taouk
But the bottom line, the prognosis:
1% chance of getting past committee
0% chance of being enacted
REALLY?????? WHAT DOES IT TAKE???
A friend who serves on the Board of the local JDRF chapter and whose wife is a T1, approaching age 65, has taken it on as his mission to effect a change in the Medicare policy regarding CGM. His approach is to change the definition of Durable Medical Devices as defined by CMMS. But he is finding it difficult to get a focused effort among all the organizations. Insulet is focused on coverage for Omnipod. JDRF is focused the artificial pancreas, AARP cares about Medicare cuts, ADA is not very involved. He says that the best bet is to petition Congress because all they listen to is money and votes. I understand that Medtronic and Dexcom have approached Medicare but thus far, have been totally ineffective.
I don’t have the answer … but I do have plenty of frustration. I would gladly participate in a concerted campaign to Congress but feel discouraged that our voices don’t matter enough to them. I absolutely welcome any feedback and suggestions on how to really make Medicare see the light. And I thank you for reading along.
Hi Joanne:
I’m not sure if you know who I am. I blog on testguessandgo.com under the name Sue from Pennsylvania. Quite a few months ago, I did a blog on H.R. 3710. Laddie and I sent the blog to about 50 different bloggers asking them to put my blog onto their blog site. I don’t know if you were one of the bloggers that we sent the blog to. We had a sample letter asking everyone who reads this blog to send a letter to their Congressperson asking them to write their Congressperson and ask them to Co-sponsor H.R. 3710. Very few Congresspeople did this. To date, only 8 have adn they are all Democrats. Even my own Congressperson, a Republican, wrote me back and said that if the bill comes to the floor, he would consider supporting it. To this, I replied ” I did not ask you to support H.R. 3710; I asked you to co-sponsor it. ” and I finished off the letter saying “wouldn’t it be nice of one Republican supported it and start the ball rolling so that others would step up to the plate”. It’s very disconcerting that my Congressperson has never replied to this letter and only 8 Democrats have co-sponsored it.
As for the word “precautionary” I am so sick of hearing that word used. I too wonder how it is defined.
I am not the diabetic. I am my husband’s advocate. I have tried for the past two years to get Medicare to change it’s guidelines. His Level 1 was denied. His Level 2 was denied. His Level three was Unfavorable even though we had all the necessary documentation and did it in his Endocrinologists office. We are now at Level 4 and are waiting for the Medicare Appeals Council to render their decision. The only reason that I have hope that we’ll have a positive outcome for this level is because we used an attorney who submitted 130 pages of documentation from experts from all over the world in the Appeal plus all the Medicare rules that point to coverage of the CGM if “you are diabetic; if your physician recommends it; if you are properly trained in how to use the device”.
Like yourself, I am disgusted by the fact that neither of the two companies, Dexcom and Medtronic, are working as hard as I think they can fighting to get CGM coverage. When I called the ADA, they told me that they basically work on Research and Juvenile diabetes. I think the same is true of AARP. I don’t know what the JDRF but I’m thinking that they discount the Senior citizens because they are not Juveniles.
One good thing on the horizon is Whitcomb vs. Sylvia Burwell, the Secretary of the U.S. Dept. of Health and Social Services. Jill Whitcomb won a Favorable Appeal in her AJL hearing but United Healthcare appealed the Judges decision. The case was then appealed to the Medicare Appeals Council and they upheld United Healthcare’s Appeal. They are now in Federal Court (and are using the same attorney that I used (whose name was given to me by the Vice President of Global Marketing at Dexcom and are now waiting for a determination on a brief that was submitted. If they win this, it might change the CGM coverage of the CGM for all those who meet the criteria that Medicare set forth in their guideline.
From the two years of advocacy that I have been going through, I think that there are so many petitions out there and so many small groups trying to effect the change. I would like to see everyone merge into one large group because I truly believe that there is strength in numbers. In the meantime, I speak to many, many people each week who have read my blogs or have read a sidebar in Diabetes Forecast wherein I was interviewed about my husband’s plight and for which I have written a few Letters to the Editor. I even did an hour long interview with DSMA Live. Oh, I wrote an article for my local newspaper about my husband’s plight and exactly what H.R. 3710 is. And I will continue to bug my Congressperson about co-sponsoring and to ask everyone I know to contract their Congressperson as well and to pass on the information to all their family and friends. Beyond this, I can’t figure out how to try to get all the splinter groups to unite into one large group.
If you ever what to speak to me, I would love that. Maybe we can bounce ideas off of each other. My phone number is 717-652-0615. I live in Harrisburg, PA and we’re on EST.
Keep on posting such a great blog.
Hi Sue … yes, I saw your post and forwarded to the support group that I run in Orange County CA. And YES, we need a consolidated effort. I’ll copy you on a letter I’m sending (including your response) to the lawyer that I dealt with in Los Angeles, also a T1. BTW, did you interact with Claudia Graham? I was so frustrated at their lack of concern and effort … just stunning!
Maybe we can pull this together, between you, Jean, me and a few others … into a strong front (even stronger than the gender reassignment lobby! 🙂
Off to do some blogs tonight … I’m also guesting with Asante (makers of the new insulin pump, the Snap) … and talking with George Simmons on DSMA. BTW, are you going to AADE in Orlando? Maybe we can consolidate there?
Happy Saturday … joanne
I think it’s terrible that Medicare is denying coverage for CGMs. But I know for a fact that JDRF is working on this. They have been working with the Centers for Medicare & Medicaid Services for over a year. Don’t give up fighting and don’t give up hope!!