Using the form available on the JDRF Advocacy page, I contacted my senator earlier this month. Let’s keep the #MedicareCoverCGM process moving forward!
I have an appointment with the eye doctor this afternoon. More than any other appointment, this one always makes me nervous. Last year I had a bit of a scare during the appointment.
I have “squiggly vessels” in my eyes – not related to diabetes – so it always takes the eye doctor a little extra time to check everything out. Squiggly vessels are also more likely to bleed than non-squiggly ones since the twists and turns offer more places to break.
I am trying to focus on the positives like getting an updated prescription and possibly new frames.
And more importantly, getting an awesome updated picture of my excessively dilated squiggly vessel eyeballs.
I was in my primary care provider’s office the day before I ended up in the ER with DKA at correct diagnosis. He was busy that day so my appointment was not actually with him. He had (mis)diagnosed me originally a few months earlier, so he probably would have spotted the DKA a little easier than his assistant. When I left my appointment I passed him at the nurses’ station and waved so I was sure he knew I was there. But when we called to update him on my hospitalization the next week, he said he hadn’t seen me.
It’s the hair, right? I’m guessing it was the hair.
This is a screenshot of the website displaying my data from my CGM in the cloud. I tend to be a side-sleeper and as much as I try to avoid sleeping on the side with the sensor, sometimes it happens. Because of the additional pressure on the sensor, it often displays incorrect readings as a result. Last night I woke up to the in-app alarms of Nightscout letting me know that my blood sugar was predicted to be below 80 mg/dL for the next 30 minutes (the blue line).
Even half-asleep and with only one eye open I could tell that the sudden drop could not have been accurate. I silenced the alarm, rolled back over, and got another successful hour of sleep.
Side note: I have seen a few search terms on my blog related to where someone can “get” or “purchase” CGM in the cloud. The easiest place to start is the Facebook group or the support forum. People there are very helpful identifying the pieces that need to be purchased and how to set up the system.
In other news…
Team TriSaraTops Diabetes is back from extinction and back to fundraising.
I certainly don’t want to end up on the tricera-bottom of the team fundraising list.
What do you call a dinosaur who never gives up on collecting walk donations?
I remember when I first tried to get a Dexcom continuous glucose monitoring system. My insurance company quickly denied it and I was told no one in the state had been successful on appeal. I did not have a history of hypoglycemic unawareness or any emergency interventions for a low blood sugar so I determined my chance on appeal was not worth the effort. A few years later, continuous glucose monitors were added to my insurance plan and I was able to purchase the device. There are still private insurance companies that deny access to continuous glucose monitors but those are becoming increasingly rare.
I know there are plenty of people who have no desire to wear a CGM device. They do not want to wear a second device. They are happy with their management without the hassle that can come with bad sites, bed sensors, repeated calibrations, and interfering alarms. But then there are also people with hypoglycemic unawareness, who live alone, or who are extremely sensitive to insulin.
Just like juvenile type 1 diabetes does not go away when a person turns 18, it also does not go away when they turn 65. If a doctor and an insurance company can conclude that a continuous glucose monitor is medically necessary at 64, then I wonder what is clinically different at age 65.
There is now an opportunity for the diabetes community to have our voice heard on this issue. Yesterday, Senators Susan Collins (R) and Jeanne Shaheen (D), who are co-chairs of the Senate Diabetes Caucus introduced S. 2689, The Medicare CGM Access Act. Access to continuous glucose monitoring systems for Medicare participants is supported by JDRF, AACE, AADE, Dexcom, Johnson and Johnson (home of Lifescan and Animas), and Medtronic, among other organizations.
Please read more about the CGM coverage bill and the study data supporting the bill ***at this link*** and considering adding a voice to this important issue. Diabetes technologies continue to grow, develop, and improve, and people with diabetes continue to live longer, healthier lives. Unless there is a cure, access to appropriate diabetes technologies as part of Medicare is an issue that will eventually affect everyone in the diabetes community.
(Petition part 1)
Edited to add: It is also important to add a signature to ***the petition located at this site***. The goal right now is 10,000 signatures but expect that number to change as each goal is reached. The signatures from this petition will go to the Centers for Medicare and Medicaid Services.
I’ve has several great opportunities to stand in the You Can Do This Project booth at several different diabetes conferences. Since videos are difficult to record in the loud exhibit halls, we ask people to write down the thoughts that they would like to share with other people living with diabetes.
I love that families visit the booth together. I love how a little kid with diabetes shares advice that can help even the most seasoned veteran. I love that a few kids visited the booth to share how proud they were of their sibling with diabetes. I love the range of responses from funny to serious and now seeing some familiar faces return from year to year.
Please check out both of the videos from the Friends for Life conference this year. I know I’ve got a few favorite pictures in each video.
P.S. A few days left to nominate posts for the Best of the ‘Betes Blogs for July posts. The list will be posted on August 4th by Kelley over at Below Seven.
Disclosure: The ONLY reason I was able to attend the Friends for Life conference this year was due to a scholarship from the Diabetes Hands Foundation to the Diabetes Advocates. The scholarship covered my airfare, hotel, and conference registration. All opinions continue to be my own.
A few weeks ago when I picked up my personalized plates at the DMV, there was a guy sitting under a tent out front with a petition. There was nothing under or around the tent advertising the cause for which the man was soliciting. All that anyone who passed by the area could see was a pop-up tent, a six foot table, and a guy sitting behind the table in a folding chair looking at his cell phone.
I couldn’t drive away without putting the new plates on my car, so while I was working I was able to observe the man for a few extra minutes. Every so often, he would yell at the people passing by to sign his petition to (fill in the blank). He never stood up. He never explained WHY anyone should sign the petition. He just sat back, reclined as far back in his folding chair as possible, and yelled at people to sign his clipboard. Not a single person stopped by his table in the time that I was there.
Now I realize it’s summer in the desert so it was pretty hot out that day. I have no idea how long the guy was there or how engaging or excited he may have been earlier in the afternoon. Advocacy can be exhausting. However, having no perspective on any research the man may have done for his cause or any background information on why he wanted me to sign his petition, the last thing I wanted to do that afternoon was respond to his shouts.
In order to avoid becoming “that guy” for causes related to living with diabetes, I am excited about the information provided in the Diabetes Action Hub contained on the Diabetes Advocates website, which I heard about for the first time at MasterLab earlier this month. It has information about the latest advocacy efforts available for people related to the diabetes community. This includes information about legislative action, the sponsors and supporters of the bills, and the position statements of major diabetes organizations regarding the legislation. The site also includes information about how to continue to engage in the diabetes community (online and offline) and how to become a better advocate.
I never want to be the person holding a clipboard yelling in a parking lot who everyone ignores. I am hopeful that the Action Hub will help the voices of people with diabetes not only become louder but also connect with the stakeholders (policymakers, pharmaceutical companies, insurance providers, people with diabetes, etc.) necessary to move the efforts forward to our goals.
Disclosure: I was able to attend MasterLab and the Friends for Life conference this year as a result of a scholarship from the Diabetes Hands Foundation offered to the Diabetes Advocates. The scholarship covered my airfare, hotel, and conference registration. All opinions continue to be my own.