Persistence Triumphs: Getting Medicare to Cover My CGM

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My name is Laura Siner. I am 67 years old and live in Columbia, MD. I was diagnosed with type 1 diabetes in June 1970. When I first diagnosed some 45 years ago, the only tools available to people with type 1 diabetes were a very strict diet and exercise. The only clinic in the country at the time was Joslin Diabetes Center in Boston. The average life expectancy for someone with diabetes was 45—if you were lucky.

Over the years I’ve had many close calls, and it’s a little short of miraculous that I’m relatively healthy. I volunteered for many studies to try to find something that would control my diabetes. I tried the U100 insulin, the first blood glucose meters, and the earliest insulin pumps. I even was in a study 15 years ago for an internal insulin pump. When it worked it was great, but it was not ready for prime time—in fact it nearly killed me.

I wasn’t able to control my blood sugar until I went on the CGM in 2010. It is the best chance type 1s have of avoiding the complications that arise from uncontrolled blood sugar levels. It is truly life-saving and certainly worth fighting for.

It took three separate appeals, but on March 6, 2015, U.S. Administrative Law Judge Donna D. Dickens ruled:

“The (CGM) disposable sensors, external receiver, and external transmitter provided to the Appellant (Laura Siner) on October 11, 2013 are covered by Medicare. The Medicare Contractor (Liberty Medical Supply) is directed to process the claim in accordance with this decision.”

The current Medicare dogma as set forth in Local Coverage Determination (LCD) L11530 is that the CGM sensors, transmitter, and receiver are “convenience items” and therefore not covered. This LCD was cited as the reason for the unfavorable determination in our previous two appeals.

However, Judge Dickens wrote that while the LCD prohibits coverage of the Dexcom, “An administrative law judge is not bound by the determination and must only give it substantial deference. In this case,” she continued, “the ALJ finds the monitors are medically necessary given the Appellant’s condition. Therefore the items are covered by Medicare.”

I believe that the success of my appeal, conducted by telephone on March 4, 2015, was due entirely to the testimony provided by my knowledgeable endocrinologist, Dr. Nick Argento.

He was able to give the kind of expert testimony that I, for all my 45 years as a type 1 diabetic, could not provide. He was able to cite chapter and verse on how only by using the Dexcom had I been able to significantly improved my control over my blood sugar and how dangerous a lack of this control would be as I got older.

My doctor explained how the CGM fulfilled all the Medicare legal requirements for covered durable medical equipment and was now considered the standard for treatment of type 1 diabetes by major medical associations. The American Diabetes Association and JDRF have petitioned Medicare to cover CGMs along with many others, but so far to no avail.

He also testified that the CGM had enabled me and others to significantly reduce and control dangerous severe hypoglycemia, and how important blood sugar control was in preventing and controlling the complications that arise from type 1 diabetes.

But I believe what really brought it all home to the judge—the real turning point—came when my doctor testified about two Medicare patients who could not afford CGMs and who died from severe hypoglycemic attacks. That testimony brought the issue to a whole new level of reality. Hypoglycemia is not just an “inconvenience.” It kills.

So what does our success mean for other people with diabetes who are on Medicare, who should have CGMs (according to diabetes experts, this means almost all type 1s) and who have been refused coverage?

Most obvious—while there are no guarantees, an appeal can be successful. Make sure you appeal, and don’t take no for an answer!

It helps if you already had a CGM before you went on Medicare, or are using one on a self-pay basis while on Medicare. That way you can show how much the CGM has improved your control of hypoglycemic events, allowed you to lower your A1C, or both. You need to have a CGM before you can ask for coverage, as Medicare does not do pre-approvals.

Once you start the appeals process, you need to persevere. I went through three of the four levels of appeal after being denied coverage before I had success. The first level is an appeal to a Medicare contractor, in our case NHIC. The second level is the reconsideration of appeal to a Qualified Independent Contractor (QIC). Both these levels involve only filing papers. The third level is a hearing before an administrative law judge. The final level is a request for a review by the Medicare Appeals Council.

Make your case based on your personal experience is thoroughly documented, showing the improvements you have made in controlling your blood sugar levels, and especially in avoiding or reducing severe hypoglycemic episodes where your blood sugar level drops below 50 or when you need outside help. The more documentation you have, the better, so get copies of you medical files and tests that back your case.

thank you note final

Do not be discouraged and give up if your appeals at level one and level two are denied. I believe that it is too difficult on paper alone to make a persuasive enough case to have Local Coverage Determination 11530 set aside. Sworn affidavits that you might risk imminent death without a CGM certainly would help, but short of that I think you would have little chance of a favorable outcome at the first two levels.

I believe that only at the third level of appeal will you have a real chance of success, because at that level, you and your advocate will actually get to argue your case before a human being.

For success in the appeal, you need a good advocate, such as your doctor or endocrinologist. We had the best.

And be sure you keep complete records of your appeal and again: Don’t give up!

—Laura Siner

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