System malfunction

My 17-year-old son carries his pancreas around in his jeans pocket. If you saw it, you’d think it was a cell phone or an iPod. But then you’d notice the long, thin tubing that connects the gadget to his stomach.

Sean’s insulin pump delivers life-giving insulin through an infusion site that he changes every three days. The pump delivers a trickle of insulin 24-seven and larger doses to cover the carbohydrates in meals. Nick Jonas of the Jonas Brothers wears a pump, too. Not that that means diabetes is cool.

A year ago, Sean was diagnosed with juvenile diabetes, also known as type 1 diabetes, and we were ordered to report immediately to the hospital across the street. During our two-day stay, we learned that juvenile diabetes is a disease that occurs when the immune system malfunctions and begins attacking the beta cells in the pancreas. Beta cells produce insulin. Our bodies convert carbohydrates in the food we eat into glucose (blood sugar), and insulin is the hormone that moves the glucose into the body’s cells. Cells need glucose for energy. If they don’t receive glucose, they starve to death.

Sean’s daily challenge is to balance his carbohydrate intake and his insulin delivery in order to avoid hypoglycemic (low blood sugar) and hyperglycemic (high blood sugar) reactions, which are life-threatening. The insulin he uses was created in a laboratory and keeps him alive, but it’s not a cure. Complications from diabetes include kidney failure, heart disease, vision loss and a slew of other problems in between.

Before he transitioned to the insulin pump this past winter, Sean was giving himself four injections day. Life is a little easier with the pump.

What didn’t change was his fear of the future.

For now, his dad’s insurance covers the costs for the majority of his disease, but even so, co-pays alone for lancets, glucose test strips and insulin run an average of $100 a month. Without insurance, insulin would run about $300 per month. The reservoirs and infusion sets for the insulin pump, without insurance, would be $200 a month. The pump cost $6,000 and is guaranteed for four years. He has to keep syringes on hand in case the pump fails.

Also, Sean is almost 18, which means he has one year left on his dad’s insurance plan, unless he can carry a full load of college classes. For Sean, as for many kids, that may not be a given. Right now, he’s afraid of the effects of diabetes on his long-term health, he’s afraid he won’t get a job with good medical benefits and he’s afraid insurance companies will refuse him coverage based on his pre-existing condition. This past March, when President Barack Obama lifted George Bush’s ban on federal funding for stem-cell research, Sean was ecstatic. Type 1 diabetes is one of the diseases that might be cured with stem-cell research.

Pro-life activists oppose Obama’s decision on stem cells. I wonder what they could say to my son, who values life, too. His life. Maybe they could tell him how to stop being afraid.