I have been advocating for over two years for Medicare to cover a Continuous Glucose Monitor (CGM) for my husband Marc. Synopsis – he had been covered for the CGM when he had private insurance through his employer, but when he turned 65 and became Medicare eligible, and needed a replacement CGM, it was denied. Medicare considers the CGM precautionary and therefore, in their opinion, not necessary. Of course, those who desperately need one disagree with this. The first denial came in August of 2012 and shortly thereafter, we started the long and exhausting appeals process. When we got to Level 3, a hearing by an Administrative Law Judge (ALJ), it took almost nine months after our June 26, 2013 hearing for the Judge to render an UNFAVORABLE decision. We decided to go on to Level 4 which is a hearing with the Medicare Appeals Council (MAC). They have the power to overturn the Judge’s decision. This Appeal was submitted to them in April of 2014. We are now in the 5th month of waiting for the Council to make a decision. The Appeals process is almost like watching a tortoise cross the road. It’s very, very slow.
In the meantime, Marc, after 45 years, decided to apply for VA benefits. He had served in the United States Air Force for four years but had never thought of getting any benefits through the VA. From the time he submitted his first application to when they processed him in took almost two years (nothing we do happens quickly). Finally, in May of this year, he became a part of the VA. He had to go through all types of exams, one of which was with the VA endocrinologist. In checking his A1c and hearing about his problem with hypoglycemia unawareness, she definitely thought that he needed a CGM and prescribed one for him. However, as with Medicare, we were told that the wait to get one was 1 – 2 years. For some reason, and I can only guess it was because he had so many instances of blacking out, she went to bat for him and I can finally say, HE HAS A CGM! Two weeks after speaking to her, he received an email from Dexcom that his CGM was on its way. Four days later it came.
To say that we are thrilled is putting it mildly. Our two years without a CGM are finally over. For myself, I can now be at peace during the day when Marc at work knowing that if his sugar starts to drop rapidly, he’ll get those warning beeps. And I welcome those beeps at night (which used to drive me crazy) because now I can sleep better (in between the beeping) knowing that we’ll have time to correct the situation before I have to go running for the Glucagon.
When I became an advocate for his CGM, I made a commitment to continue to fight for Medicare to make a change in their guideline even if Marc did eventually get a CGM, whether through Medicare or some other source. I intend to keep that commitment and will continue to work towards that goal. To that end, we are letting the Level 4 Appeal play out even though, if we are fortunate enough to get a FAVORABLE decision, we can no longer get a CGM through Medicare. It is our hope that if anyone who is thinking of going through the process will see that it is possible (I hope) to get a good decision and soldier on. No one should have to go through what we’ve gone through in the past two years to get a piece of equipment that is so life-saving.
If you are a Veteran and have not joined the VA, you might want to consider applying for benefits whether you are a diabetic or not. In the past four months, not only have they covered Marc’s CGM and sensors, but also Symlin, which is a synthetic aid in lowering blood sugar and is quite costly, his cholesterol medication, syringes, etc. In a future blog, I will give you a few hints about joining that might make it easier to navigate the VA, one of which is to contact your local County Veterans Service Officers. They are most helpful.
Yay! So glad to hear this Sue.
So happy that you were able to get the CGM thru the VA. I continue to fight Medicare and have four appeal write-ups waiting to be done!
Dexcom is a life saver. I am glad they approved this through his VA benefits and I think it’s wonderful that you are continuing to fight for others. Thank you for doing this.
Yay, so happy for your husband (and you, for the improved peace of mind!) Still, the battle with Medicare will continue, so we are grateful to have you continuing the fight!
Glad to see some good press for the VA and the gift of CGM coverage for your family! Enjoy!
That is wonderful news, finally!!!!!!!!
Sue I’m so proud of you and your amazing energy in advocating for all type 1 diabetics who at some time will need a CGM paid through Medicare.
Great news for you! It’s too bad, though, that this doesn’t reflect a change in policy affecting the rest of us. We’ll need to keep on writing and campaigning.
Congratulations!!! I’m glad your husband was able to get his CGM through the VA. Thank you for the light that your shined on the issue and for continuing to fight for the community.
Thanks to all of you for your kind responses to my blog. I do have an update as of today. We finally got the decision from the Medicare Appeals Council and they upheld the ALJ’s decision. It’s a good thing that the VA is covering this because I really feel that the only hope we have of getting the CGM covered by Medicare is through the Senate, the Congress and the JDRF Petition. There is a case pending in the Federal Court system which is being handled by the same law firm that we used for our MAC case and they are being thwarted at every turn. and are starting to give up hope. I am now sure that going through the Appeals process isn’t effective, is time consuming and extremely frustrating. The only way to get this done is through our Senate and Congress….so we really have to band together and put the pressure on. I still plan on fighting on but will now put all my time and energy into getting the guideline changed, not through the appeals process.
Pingback: The Road to a CGM | Test Guess and Go