On October 14, 2009 – at seventeen-months old – Nicholas was denied the opportunity of a normal childhood when he was diagnosed with type 1 diabetes. After a four day pediatric ICU stay, we were given the daily responsibility of making 8-10 potentially life-threatening decisions about his health as we calculate and administer insulin to control his blood sugar levels.
As an active four-year-old, at any moment Nicholas is at risk of experiencing severe hypoglycemia which can lead to coma, brain injury and death. As parents we’re constantly on high alert and experience enormous stress as a result of living with this always-on, high-stakes lifestyle. The problem is made worse by a lack of information about what’s going on inside his body. Today, we test his blood sugar 8-10 times per day by finger prick. This is considered a very aggressive testing regimen, but still only gives us a limited ability to manage his health. On a daily basis we experience many test results that are in a normal range, yet he still suffers from wild swings that are too high or too low. These highs and lows affect his temper, personality, concentration, and can lead to many more severe health consequences. Fortunately there are tools that can help.
A continuous glucose monitoring system (CGM) is a sensor that tests his blood sugar every five minutes, 24/7. With a CGM his caregivers would know at all times what his blood sugar levels are, allowing for much better control as well as much less worry, distraction and stress. The system even predicts oncoming highs and lows and alerts in advance so we can take corrective measures before problems arise.
This fall Nicholas is starting in a full-time Kindergarten program. It’s critical to his health and success in school that we start him on CGM before then. Unfortunately, our private health insurer, Excellus BlueCross BlueShield of Rochester has denied him this medical necessity. Their policy provides CGM coverage for anyone with type 1 diabetes age seven or older and denies coverage to children under age seven. The basis for their decision to discriminate against the most vulnerable in our society is because CGM has not been clinically proven as an effective treatment for children under seven; however, it has been proven effective in every other age tested. The reason it hasn’t been proven for children under seven is because no CGM clinical trials have been conducted on children under seven, as clinical trials in children are extremely rare.
“Out-of-pocket” costs for CGM are roughly $4,000 per year, much more than we can afford on our own. For the last three years we’ve asked friends and family to forgo birthday presents for Nicholas, and instead have all participated in the local JDRF fundraising walk as “Team Birthday Boy” – raising more than $7,500 for diabetes research. This year we have a more pressing need for your help. Please consider contributing to this important cause today!
Thank you,
Michael (Nicholas’ Dad)