We’ve never met in person or crossed paths in the diabetes online community (DOC). I was diagnosed with Type 1 diabetes in 1976 at the age of 24. When my children were born 30+ years ago, I naively never worried about them getting Type 1. When I became involved in the DOC over 10 years ago, I quickly became a supporter of parents of children with Type 1. At the same time I gave thanks every day that I had diabetes instead of my children. Most of the parents whom I’ve met in the DOC would happily live with Type 1 if they could take the burden away from their children. I suspect that you feel the same way.
I recently listened to you and your husband talk on the Oct. 20 DSMA ‘Rents podcast about CGM in the Cloud. I have read many blogposts and listened to multiple interviews about the Nightscout system and am amazed by the #wearenotwaiting project. The technological support and peace of mind it provides for people with diabetes and their parents/families is wonderful. Although some adults with diabetes are using the system, I personally don’t need it at this time. As a diabetes tech junkie, I’ve been tempted to buy the gear and set it up, but so far I’ve resisted.
But Nightscout is not what this letter is about.
I am 62 years old and will be on Medicare in 2.5 years. I have used continuous glucose monitoring (CGM) for over five years and have found the Dexcom G4 to be a life-changing device for me. I am safer, my blood sugars are more tightly controlled, and I feel better both physically and mentally. When I reach Medicare age, I will have used a CGM for almost 8 years with full insurance coverage. I am terrified of the day that current Medicare policy will deny me that coverage. I am befuddled by decision makers who label CGM as “precautionary and without proven value” while this still-improving technology has a proven track record, can save money by reducing hypoglycemia-related ER visits/hospitalizations for seniors, and is a fundamental technology of the Bionic Pancreas.
Today I write to thank you for your closing remarks on DSMA ‘Rents:
“And the other thing I’ll add real quick as the Advocacy Team Chair for our Rochester Chapter of JDRF- None of this would be possible without the CGM technology and there’s a bill currently going through Congress right now to allow seniors on Medicare access to CGM. Most, I think it’s like 95% of private insurance, covers CGM’s whereas our seniors don’t have access to them. And I feel like just because our son [name withheld] is 6 and not 66 doesn’t mean he is any more or less deserving of this technology. So all these great things that we have because we have access to it, I think our seniors deserve as well. So I’ll just put that pitch in there.” (Loc. 55:07)
In the last year and a half, the issue of Medicare CGM coverage has moved to the front page of DOC advocacy. (One of the leading champions of this issue is my co-blogger Sue from Pennsylvania.) Those of us with insulin-dependent diabetes on Medicare or approaching age 65 have appreciated the support of parents, families, friends, medical professionals, and people with all types of diabetes. With the whole diabetes community supporting us, we have had and will continue to have a louder voice than we would otherwise.
But the fact that you took the time to conclude your interview concerning your project and your son with the importance of my issue is incredibly heart-warming.
So I thank you, Laura. If I ever had doubts that those of us affected by diabetes can be a united and supportive community, your eloquent remarks smashed them. I will sleep better knowing that you are on my team.
If you have not previously contacted your Senators and U.S. Representative to support CGM Coverage by Medicare, please click here to go to the JDRF page that contains links and easy-to- follow instructions to have your voice heard.
Great letter Laddie. My thanks go to Laura as well. Also, just a reminder that there will be another deluge of Twitter messages to Congress October 29 at 8:00 eastern time (US). Anyone (and everyone) can find their elected officials and tweet asking them to support CGMs for seniors on Medicare here:
Thanks for the reminder about the Tweet-In tonight, Stephen.
Senators done! Representative done! JDRF petition done! Posted on our Taking on Type 1 Together support page so we parents of younger-than-you PWDs can help you keep coverage on your CGM and pave the way for our kiddos. Done! Seriously…this takes 10 minutes. Thanks to StephenS for the reminder about twitter!
Nice letter btw.
Thanks for commenting and spreading the word, skchrisman.
Thank you so much for mentioning me. And for the reminder to contact Senators, Representatives, and the JDRF petition asking for support. The momentum has to be kept up. It takes a village and ours is getting bigger and stronger.
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