Every now and then I have a conversation as part of this job that sets me back just a bit.
I had one of those conversations on Friday with a 16-year-old girl whose life was flipped upside down 10 years ago.
She flipped it back.
Her name is Lucy Arevalo and she has Type 1 Diabetes. The same freaking autoimmune disease that tackled my daughter and killed my father.
But this girl who plays golf, participates in show choir, and is in leadership training at Diabetes Camp for children not only refuses to let diabetes define her, she’s going to Washington to advocate for more funding in the fight for a cure.
Lucy and her mother Allison sat across a large walnut dining room table and Lucy flopped out her Tandum insulin pump, that talks to a Dexcom glucose monitoring system.
The two pieces of wonderful equipment talk to each other through algorithms, in essence becoming an artificial pancreas.
The pancreas is the organ that produces insulin. Insulin unlocks blood cells to process sugar in the body. When those cells stay locked, the sugar builds up in the body and a girl like Lucy can go into what’s called Ketoacidosis. In essence, the body poisons itself because the damned pancreas refuses to produce insulin.
Type 1 diabetics have to inject insulin, or infuse it through the pump, because the stubborn pancreas won’t do its work. It has a lot to do with T-cells and the body attacking itself, but we don’t need to go that deep.
If you have Type 1 diabetes, you know all about it.
Lucy’s a top-notch student and holds office in her class. She has been accepted to be part of what’s called the Juvenile Diabetes Research Foundation (JDRF) Children Congress of 2023.
These kids can’t eat a freakin’ ice cream cone without figuring out how much insulin they need to counter the carbs in the dessert. A necessity that I can personally guarantee is taken totally for granted by every non-diabetic family in the world.
And diabetics are families. Make no mistake about that. It’s a family disease because it usually hits children.
Parents will see children losing weight, urinating in their sleep and sometimes when they aren’t asleep, consuming excessive amounts of water, complaining of headaches. Doctors' visits for children not feeling well with those symptoms usually end up with a transfer to the University of Iowa and a diagnosis of diabetes.
Then there is a new normal. Checking blood sugars through finger sticks 6-8-10 times a day if not more. Try that with a six-year-old, or a 10-year-old. Then giving a shot of insulin in the arm or abdomen or on the top of your hip. Making sure you move it around so you lower the chances of scar tissue which can reduce the affect of the insulin.
So after the family is trained on administering insulin and the usage of a glucagon injection for when blood sugars go so low the child goes unconscious, they then have to figure out the finances of disease.
The price of insulin is one of the biggest shams in the medical industry. Drug makers are using that much-needed insulin as a profit pad because of the demand of the drug.
While families, some not so well off, have to decide on what dollar goes to what need, they have to make the difficult decision of whether to buy insulin or the food that makes it necessary.
Artificial insulin is produced quite inexpensively, but the markup is massively out of proportion.
So Lucy and about 25 other kids are going to Congress to talk about continuing to fund the Special Diabetes Program, a program under the National Institute of Health that channels federal dollars into research that has produced current things like insulin, insulin pumps, on-board glucose monitors, as well as future weapons like nanotechnologies, inhaled insulin, and phones and watches that just read blood sugars through the skin – without a poke.
Arevalo is part of a special annual trek to Washington to meet with State Rep. Mariannette Miller-Meeks and U.S. Sens. Charles Grassly and Joni Ernst. Some of the students will actually speak to a Congressional committee about continuing to help fund research that will inevitably save lives.
I don’t know. Sitting with Lucy and her parents, Allison and Alfonso who own Rev Fitness in downtown Fort Madison, it freshened my mind about the battles these families face. The wonderful technology has taken a lot of the brain drain out of the disease, but it’s still around-the-clock monitoring to stay as healthy as possible.
It took me back to the social discernment for those who have to take a shot before eating and how some just don’t understand.
What Lucy is doing may not impact you right now, and then again it might. But one thing is for sure, they’ve got the right girl going to D.C. – But that’s Beside the Point.
Chuck Vandenberg is the editor and co-owner of Pen City Current and can be reached at Charles.V@pencitycurrent.com.
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