Not Another 1 in 20
Organized by: Eric Tivers
Eric Tivers via Crowdrise
February 05, 2016
Our goal has been met. Thank you to everyone who donated to this cause.
On Episode 62, I talked with community member and ADHD coach Carolyn D’Argenio about what it’s like for families affected by ADHD and Type 1 diabetes (T1D), a life-threatening autoimmune disease that requires constant monitoring. Carolyn started the Facebook group Shiny and Sweet to support families like hers. Carolyn’s son Alex was diagnosed with T1D when he was two years old. He turned 7 in March and doesn’t remember what it was like not to have his finger pricked for blood 10 times a day, not to have every activity monitored, and virtually every meal or snack followed by a dose of insulin. For the first four years of his T1D, this meant multiple daily injections. He now wears a pump, a computerized device that delivers insulin through a tiny tube inserted under his skin.
This was an especially sensitive conversation. Just days earlier, I received the news that one of my clients had tragically passed away due to diabetic hypoglycemia. He was 25 years old.
Like Alex and other Type 1 diabetics, his pancreas stopped making insulin, the hormone that turns food into fuel for the body. Like Alex, each day was filled with blood tests, carb counting, insulin dosing, and worry. Like Alex, he had a targeted blood glucose level to maintain. Like Alex, the risk of too many high blood glucose levels (hyperglycemia) included blindness, nerve damage, kidney failure, heart problems, changes in brain development, and more. Like Alex, the immediate risk for blood glucose levels that go too low (hypoglycemia) included seizure, loss of consciousness, and death; repeated hypoglycemia causes changes to the developing brains. These risks are very real. Sadly, my client was the one in the estimated “one of twenty” T1 diabetics who will die from hypoglycemia.
There is no cure for Type 1 diabetes, though there has been significant progress toward the day when Type 1 becomes Type None, as the popular JDRF slogan says. Changes in technology provide ways to help families manage the disease, like the insulin pump that can deliver the most precise doses of insulin and the continuous glucose monitoring (CGM) system that can provide an alert when numbers start trending toward hyper and hypoglycemia. These technologies can save lives!
Carolyn explained that Alex has had times when his blood glucose levels have dropped very low. He has had frequent nocturnal hypoglycemic readings, which were corrected ONLY BECAUSE one of his parents woke up to take blood from his finger while he slept. For five years, he has been checked at least twice a night. Alex is hypo-unaware. He cannot feel himself going low, so he doesn’t express it to others. He doesn’t display outward symptoms of out-of-range blood glucose levels. He is too young to test and treat himself.
The Dexcom G4 Platinum CGM with Share would provide Alex’s family the ability to notice trends in glucose levels and respond to them before they reach dangerous levels. This new technology would place a sensor under Alex’s skin that would read the glucose levels every five minutes. The sensor is connected to a transmitter that sends the data to a receiver that has built-in Bluetooth technology then take that data and send it to up to five iOS devices. The receiver is highly customizable. It will emit an audible alarm when blood glucose levels start trending out of range. Through the apps, an out-of-range reading would send text messages and audible alerts to all who are securely connected to Alex’s receiver. This means that if Alex is sleeping, and he begins to trend low or high, an alarm will sound to wake his parents up to respond to his needs. If Alex is on the school playground and begins to trend low, his parents will receive real-time notifications and can call the school. There can be someone in the school who can be alerted as well.
Can you imagine the weight this device would take off of his family’s shoulders? This device is life-changing. This device is life-saving. This device is FDA-approved for children as young as two. Despite these factors, the insurance company denied its approval for Alex. The family is appealing the decision.
The initial startup cost for the Dexcom G4 Platinum receiver, transmitter, and four sensors is $1,497. Each sensor may be worn for 7 days. Ongoing per-month costs would be $304. After the initial cost, it will cost $4,839 per year for this technology.
I am asking the ADHD reWired community and supporters to contribute to this fund to provide Alex with the Dexcom G4 Platinum CGM system and assistance with his family’s out-of-pocket costs for monthly maintenance. This is a small price to pay for saving a life. Technology like this would have made a difference to my client’s life, and it is in his honor that I ask for support. I ask this because together we are stronger than we are alone.
As mentioned, in the event that the insurance company reverses its decision and covers Alex’s CGM, the money raised will be used to provide a continuous glucose monitoring system for another person in need.
Eric Tivers, LCSW
Host of the ADHD reWired Podcast