My daughter has been a Type 1 (insulin-dependent) diabetic since she was 10 months old. There were some scary moments when she was very young, and some rough times when she was a teenager. But she’s doing quite well now. One of the silver linings of the early onset of a chronic disease is that you learn to treat it as an unfortunate fact of life, though one that must be constantly monitored and managed.
I bring this up now because last month she turned 26, an age that had absolutely no import for my generation but is a significant milestone for young adults today. Under the Affordable Care Act, she was able to remain on my family’s health insurance until that age, but now must be taken off. It also means she has coped with this illness and navigated the medical and health insurance systems — first through us, now on her own — for a quarter-century.
In my day job, I am trained to be skeptical of the way large, complicated systems such as health care work. As the parent of a child with a chronic disease, this moment provides an opportunity to reflect on a system that largely has worked, for her and for us.
Have we faced difficulties? Of course. I remember the pediatrician who dismissed us as nervous first-time parents when we brought up obvious problems with our infant’s development before her disease was diagnosed. (We left that doctor’s practice quickly.) Diabetes, the inability to metabolize glucose from food, is very difficult to control as a child grows. My daughter has suffered seizures and been rushed to emergency rooms a number of times for problems related to low and high blood sugar.
Have we had advantages that others don’t enjoy? Buckets full of them: fine medical care, two incomes, good health insurance, family members who are physicians, and supportive friends and caregivers, to name just a few.
We didn’t set up the health-care system. But we used it. When our daughter didn’t get what we thought she needed, we pushed that system hard. It generally responded.
My daughter, whose name I’m withholding to protect her privacy, has a full-time job that provides health insurance now that she’s not covered by my plan. Under the ACA, she can’t be excluded because of her preexisting condition. That’s a big deal. But she also is about to find out whether her coverage is as good as the benefits under my policy.
It’s still too early for good data on the number of young adults who have lost their health insurance at 26, the age limit for dependents that was set when the ACA became law in 2010. Under the previous system, children lost their health care coverage when they graduated from high school or college.
According to a 2012 study of the old system by the Department of Health and Human Services, 30.8 percent of adults ages 19 to 25 went uninsured for a month or more after previously having private insurance, mostly because they aged off their parents’ coverage. That compared with 13.8 percent of people ages 26 to 60.
Anyone who questions the benefit of mandatory health insurance hasn’t stood where I have: in an emergency room at dawn with a clutch of worried doctors trying to figure out why our infant was slipping in and out of consciousness. No one ever expects to be in the ER or the intensive care unit. But it happens, and it’s very expensive.