Although those of us on Medicare are thankful that CMS now covers the Dexcom G5, many online discussions are angry and focused on the frustrating regulation that we are not allowed to use our smartphones, smart watches, and pumps as receivers. I wrote a blogpost about this in August and unfortunately there have been no changes to the policy. In fact the most recent news indicates that legislative action might be required to pull Medicare into the 21st century and mobile health technology.
Today I don’t want to write about gloom and doom. I want to focus on good things and how CGM coverage is improving the lives of many Medicare beneficiaries with diabetes. Without fail D-people are finding the Dexcom G5 to be a life-changing device that helps them monitor blood sugar trends along with receiving warnings of highs and lows. Universally CGM users are learning new things about their diabetes and several have experienced huge improvements in average blood glucose levels and A1c’s. Those who are using a Dexcom CGM for the first time mention a reduction in fear and a new ability to feel “almost normal.”
One thing that I have learned in recent months is that I need to stop saying “seniors” in connection to Medicare. Several people I’ve communicated with about this article are on Medicare due to disability and are not yet 65 years old. At the same time, most of us in the Seniors with sensors (CGM’s) Facebook group are 65+ and have lived with diabetes for a long time.
Here are some stories.
Carol W and I are email friends—the digital age version of pen pals. She has had Type 1 diabetes for 55 years since age 5 and qualified for Medicare 12 years ago due to diabetes-related vision loss. For many years Carol has lived in the no-win zone where she needs tight control to manage current and avoid future complications while trying to avoid life-threatening lows. Carol lives alone and in February had a severe overnight hypo resulting in a hit to her head, two black eyes, and severe leg seizures. She doesn’t remember the fall. Her only recourse at that point was to begin setting an alarm for 3 AM to ensure that she was okay. Although Carol and her doctor knew that a CGM would greatly benefit her, she was unable to afford the device without coverage by Medicare.
Fast forward to today. Carol received her Dexcom G5 kit in September. Unable to get training at her diabetes clinic for at least two months, she overcame her fear of the insertion needle and started her first sensor with a Dexcom trainer coaching her over the telephone. Some of Carol’s remarks illustrate the life-changing benefits of CGM coverage.
In Carol W’s words: “Tiny victory yesterday doing all the things I always need to do and made it through the entire day without any lows/highs or ALL THE TESTING with the meter. Glorious to feel more “normal” – like the days when I didn’t have to test so often. I paid dearly for those days before tight glucose control though. I lost most of my eyesight…. I was able to go play with my neighbor’s one year old yesterday and didn’t have to think about testing. I just checked the receiver. It is truly amazing! I can go outside and garden and just check the receiver. So happy.”
I met Nolan through Facebook and we chat periodically through Messenger. Nolan has had Type 1 diabetes for over 50 years. He has used an insulin pump for 25+ years and a CGM for 8+ years. CGM’s have protected Nolan from severe overnight lows and allowed him to sever his relationship with the local EMS and fire department. Because of the importance of a CGM for his safety, Nolan was self-funding his Dexcom for the last two years. This was stressful for the household finances because he is retired with a limited income.
Nolan has experienced the gamut of Medicare CGM experiences. He was one of the few seniors who received G5 supplies from Liberty Medical in the few months that it was the Medicare supplier. Because of no Medicare reimbursement for the starter kit, Nolan was afraid to use the supplies until October when Liberty assured him that he would not be responsible for the cost. A few weeks later Nolan sounded the alarm that “Big Brother is watching” as he got a call from Dexcom indicating that he was on the list of non-compliant seniors using the G5 mobile app. Although he had been using supplies purchased prior to Medicare coverage and thought that was allowed, Nolan learned that we must delete the G5 app from our phone as soon as our Medicare G5 kit is shipped. Violators were warned that if they were flagged again, Dexcom would no longer provide them with Medicare supplies.
In Nolan words: “Some of the CMS / Medicare bureaucratic issues are just plain ‘non-sensical’ but it certainly is not the end of the world…. Due to my age, length of time I’ve had T1D I just can’t sense the very low BG situations and my CGM has been simply a Godsend for me and my wife in that regard. Simply put I consider the G5 CGM to be a lifesaver for me.”
Diagnosed at age 41, Carol G has lived with Type 1 diabetes for 31 years. She uses multiple daily injections and had never used a sensor prior to Medicare CGM coverage. She knew that she was losing her ability to sense low blood sugars but was uncomfortable with paying out of pocket for a Dexcom.
Carol has been blown away by what she has learned since starting to use a Dexcom G5 in late August. She immediately began to see rollercoaster highs and lows that she had no idea were happening between finger pricks. Although disappointed that the Omnipod is not covered by Medicare, she is seriously looking at pumps as the best way to smooth out her blood sugar. Carol had an unhappy learning experience twelve days after starting her CGM. She accidentally dropped her receiver into the dishwasher where it irreversibly died! Dexcom offered a one-time receiver replacement cost of $200 and after nine very anxious days, she was back to using her G5.
In Carol G’s words: “My first few days with the G5 were a real eye-opener for me. I couldn’t believe how many spikes and dives my receiver was showing. And how many alerts I received—at all hours of the night. My mind was going a mile a minute. What changes could I make to stop the alerts, and even-out my “hills and valleys”? I had a long phone conversation with my Dr., but realized that I was mostly in charge of this journey…. I met with my PCP recently—the first appointment since getting the G5…. I was thrilled my A1c had dropped two points since my last appointment.”
Lloyd, Kathy, and Sharon
Lloyd has had Type 2 diabetes for 23 years and I shared his story in an October blogpost. Lloyd has been amazed at the accuracy of his new Dexcom G5 and has identified previously unrecognized lows. He finds that the “load” of managing diabetes seem heavier as a senior.
In Lloyd’s words: “Decades of experience, great tools, and the load seems heavier to me. I really wasn’t frustrated when you interviewed me, BUT I AM NOW!… I used to be able to manage D in my sleep, now I’d settle for being successful period.”
Kathy is on Medicare due to disability and has lived a nightmare trying to get CGM coverage since Dexcom does not have a contract with her Advantage plan. She is grateful to have access to supplies comped by Dexcom and is looking for a new insurance plan for 2018. Kathy is the poster child for learning a lot about “her diabetes” through CGM use.
In Kathy’s words: “As a benefit, my bs has dropped from avg 166 down to 127 in 30 days, pretty exciting. The numbers are not as significant to me as the trends: how much to correct highs, dose correctly at the start, toss problem foods, add more protein to each meal. Also a walk uphill drops me 70 points on a straight down double arrow, so its good for me to start a little high.”
Sharon lives with diabetes because of the surgical removal of her pancreas 20 years ago. It took 3 months for her to receive a Dexcom due to the distributor asking for BG logs and doctor notes, then signed logs and signed notes, and finally dated signed logs and dated signed notes. After starting to use a G5, Sharon quickly lowered her A1c from 8.3 to 6.8. She personally is not bothered by the inability to use a smartphone but feels strongly that Medicare beneficiaries deserve access to current technology.
In Sharon’s words: “But there are people who are reliant on family and friends, although going into a nursing home is not a good alternative, cause they’ll just take away our pumps and cgms and put us on a sliding scale. I hope Medicare will get enlightened about Diabetes so we can get to a closed loop solution. Older people can really benefit from this coverage. It is a life-saver.”
Medicare coverage of continuous glucose monitoring is not perfect. There are wrinkles and delays in obtaining coverage. The inability to use mobile technology is nonsensical. It is frustrating not to be able to use a Tandem X2 pump as a receiver and to not have access to the Dexcom touchscreen receiver. At the same time CGM coverage is life-changing for Medicare beneficiaries with diabetes. Every person who contributed to this post is living with less fear, more safety, and the ability to live a more normal life. Many people are seeing immediate improvements in their diabetes numbers along with a new understanding of the journey that is “their diabetes”.
Yes, there is work to be done. But we are on the right path.