Dear Senator Al Franken: Medicare and CGMS

Posted on November 30, 2015 by Laddie

I have had diabetes since 1976 and will transition to Medicare in early 2017. As most of you know, Medicare does not currently cover continuous glucose monitors for seniors with Type 1 diabetes.

There are companion bills in the U.S. House of Representatives and the U.S. Senate that would require Medicare to change that policy. My Representative Erik Paulsen is a co-sponsor of H.R. 1427: Medicare CGM Access Act of 2015 and one of my Senators, Amy Klobuchar, is a co-sponsor of S. 804: Medicare CGM Access Act of 2015. Unfortunately my other Senator, Al Franken, is not on board with supporting this bill.

Recently I was given the opportunity to work with a consulting firm, HCM Strategists, to share my story with Senator Franken with the hope of influencing him to support S. 804. This is my letter:

Franken Letter

I learned about the opportunity to work with HCM Strategists through a TuDiabetes forum post started by Emily Coles, the Community Director for Diabetes Hands Foundation. She writes:

“Diabetes Hands Foundation (parent organization to TuDiabetes) has connected with a group called HCM Strategists, which does public policy advocacy around health and education. They’re organizing advocacy for Medicare coverage of CGMs, and have asked me to identify some community members who are interested in, and passionate about, this issue. We’re particularly looking for folks who are willing to share their personal stories about how Medicare coverage of CGM affects them.

If you’re interested in sharing your story, or taking a more active role on this issue in some other way, please let me know in the thread below and I’ll connect you with the fine folks at HCM! They are seeking people of ALL ages for this effort.”

There are two ways to become involved. 1) Go to the TuDiabetes forum post and leave a message for Emily. You must be a member of the TuDiabetes community, but it is easy to join and a great place to hang out. 2) Or you can email me and I will share your contact information with the HCM Associate who worked with me.

You will then receive an email from HCM with a series of questions (name, age, diabetes story, CGM use, etc.). Your answers will provide an HCM Associate with the information to draft a letter to your elected representatives. With your approval they will also use your letter as part of their outreach to members of Congress.

This is a unique opportunity to have your voice heard in Washington, D.C. Working with HCM Strategists is straightforward and professional and I urge you to advocate for Medicare coverage of continuous glucose monitors by sharing your story.

****************

Letter to Al Franken

Corrections – Updates – News

Posted on November 23, 2015 by Laddie

After the deaths of two children from Type 1 diabetes in July, I published a letter To My Daughters-in-Law. I shared the stories of Kycie and David and provided information about an advocacy group – Test One Drop. I was recently notified that I got part of the story wrong and that some of the information I provided is now out-of-date. I have revised the blogpost with the following information.

Correction: From various postings on Facebook, I made the erroneous assumption that 4-year old David Brown lost his life as a result of a missed Type 1 diabetes diagnosis. That was not correct. When David was taken to the emergency room, he was immediately and correctly diagnosed with Type 1. Despite a proper diagnosis and intensive medical care, David died of multiple organ failure a few days later. David’s and Kycie’s stories are powerful reminders that despite improved treatments and technology in the 21st century, Type 1 diabetes continues to be a life-threatening condition.

Update: Test One Drop has updated both its mission and educational poster. The updated mission is:

“to bring awareness to the general public and the medical community of the similarities between the symptoms of Type 1 Diabetes (T1D) and common illnesses such as influenza, strep, and viral infections with the purpose of stopping delayed and misdiagnosed T1D which can lead to life-threatening DKA, permanent handicap, or death. Additionally, we are seeking a change in the Standard of Care Practices to require medical personnel to screen blood or urine samples for glucose levels before diagnosing sick patients with a common illness that might be masking or mimicking Type 1 Diabetes.”

Please check out the organization’s website and Facebook page. We in the diabetes community mourn the loss of children like Kycie and David. One purpose of Test One Drop is to keep the conversation going when the heartbreaking stories stop making headlines. Download the updated poster and share it with your friends, family, medical team, schools, and community.

**********

Update on my G5 Upgrade: In September I wrote about some of the pros and cons of upgrading from my current Dexcom G4 CGM to the recently released G5. Shortly after I signed up for the upgrade, Dexcom ran low on G5 transmitters. Instead of receiving mine in early October, I am still waiting. According to my Dexcom account, the expected ship date is December 1. So the update is “Still waiting. No news.”

**********

Update on Medicare Coverage of CGMS: Although not much has yet changed for CGM coverage by Medicare, some progress is being seen in the court system. Here is a link to a recent article at Medscape about Jill Whitcomb’s victory in Federal Court (Level 5 of the Medicare appeal process). I know of one person who won his Level 3 appeal based on the precedent of the Whitcomb case. Unfortunately Whitcomb is still at risk for further appeals by the insurance company.

**********

Update from the Unconference: At the Diabetes UnConference in March, I met Daniele Hargenrader. Daniele has lived with Type 1 diabetes for 25 years and is a diabetes and health coach as well as a personal trainer and nutritionist. If you are seeking a way to dig your way out of the diabetes dumps or need a stocking stuffer for yourself or a loved one, you won’t go wrong with Daniele’s new book: Unleash Your Inner Diabetes Dominator. Check out the book as well as the Diabetes Dominator™ website with Daniele’s blog and links to her YouTube interview series. I will be reviewing this book in a future blogpost.

**********

Last but Not Least News: I have recently been invited to share some of my blogposts at Diabetes Daily – a well-known diabetes community with 2+ million visitors a year, almost 300K Facebook fans, and 70,000 newsletter subscribers. The posts will be published first on my blog and those with interest to the larger diabetes community will be syndicated at Diabetes Daily. This is a huge compliment for me and I thank all of you who have encouraged me on my blogging journey.

November!

Posted on November 9, 2015 by Laddie

November is a month of change in Minnesota. We move from the somewhat warm days of late October to cold wintry weather by the end of the month.

It is also a busy month for me when it comes to diabetes. 1) It is Diabetes Awareness Month with special events and increased advocacy. 2) JDRF sponsors a TypeOneNation Summit in the Minneapolis area. 3) My diaversary is in November. 4) The Big Blue Test is in full swing and World Diabetes Day is coming soon.

Below you’ll find some outdoor photos that scream “November!”

I have been raking for a few weeks now, but one maple tree refuses to shed its leaves. Our last leaf pick-up is Friday and I am hoping that these leaves will drop before then. If that doesn’t happen, my fingers are crossed that strong winds next week will blow the delinquent leaves into my neighbor’s yard….

The signage at Hyland Lake Park Reserve where Abby the Black Lab and I walk several times a week has changed in anticipation of winter. The trail labeled for dog walkers, bikers, and rollerbladers in the summer is now marked for dog walkers and snowshoers.

Although I shudder at the idea of snow, we have already seen flurries this fall. Once it gets colder, the snowmaking machines in Hyland Park will start blowing snow for the nearby cross-country ski trail. Although I live in the suburbs, I can see downhill and cross-country ski trails from my house. Just barely out of sight is a 70-meter ski jump. And you wonder why I spend my winters in Arizona!

An apple on the ground and you question why I am showing you my garbage. My neighbors have apple and crabapple trees and fruit litters my backyard. The fruit-eating animals I have seen in the last week include coyotes, birds, deer, squirrels, and Abby the Black Lab. Who left the half-eaten apple? Probably Abby who really prefers deer poop. Yeah, we’ve got piles of that in the yard also.

Below you’ll find some November photos that scream “Diabetes!”

Diabetes social media has been saturated this month with blue photos as part of the JDRF T1D Looks Like Me campaign. I have a long history of hiding my diabetes, but thanks to my years in the DOC, I proudly share my photo.

TypeOneNationLogo Saturday was the JDRF TypeOneNation Summit for the Minneapolis area. Author and CDE Gary Scheiner (Think Like a Pancreas) shared his wealth of knowledge in both the keynote talk and a session about interpreting CGM data. I also attended a talk by the incredible Jay Hewitt. Jay is an Ironman triathlete who was a member of the U.S. National Triathlon Team and raced with Type 1 diabetes.

Don’t forget the Big Blue Test.

Remember to follow the hashtag #WDDchat15 on Saturday, Nov. 14 to participate in the World Diabetes Day #DSMA TweetChat. The schedule can be found here, but stay tuned to @DiabetesSocMed on Twitter for updates.

WDDCHAT2015

**********

And finally, today marks 39 years since I was diagnosed with diabetes in 1976.

Diaversary39

Balance

Posted on November 2, 2015 by Laddie

I wrote today’s post a year ago as part of D-Quote, an initiative created by Cynthia Zuber of Diabetes Light | My holistic journey to health. The purpose of her project was to give voice to members of the diabetes community and to increase advocacy and outreach during November Diabetes Awareness Month.

My diabetes quote is:

A well-developed sense of humor is the pole that adds balance to your steps as you walk the tightrope of life. William Arthur Ward

Type 1 Diabetes is the result of an autoimmune attack on our beta cells. We can talk about the many manifestations of that attack with mention of missing hormones (insulin and amylin) and malfunctioning GLP-1 (glucagon-like peptide-1). Or we can simplify the discussion and say that our bodies lack equilibrium. Our bodies lack balance.

Those of us with Type 1 try to manipulate insulin, food, exercise, stress, etc. in an attempt to balance our blood glucose. Too much insulin, we go low. Too many carbs, we go high. What is too much today might be too little tomorrow. Unable to quantify many of the things that affect our BG, we walk on a tightrope and do our best not to fall off despite our many wobbles. At the same time we try to find a balance for how diabetes fits into our lives. We search for the happy medium between managing our diabetes so that we can live our lives and living our lives just to manage our diabetes.

Tightrope Walker

We can never be perfect with diabetes and sometimes the only thing we can do is laugh at our imperfect attempts at perfection. Sometimes a sense of humor is the best way to get through the day. The best way to put diabetes into perspective. The best way to make sense of our lives.