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 I was recently notified that I got part of the story wrong and that some of the information I provided is now out-of-date.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.