Correction: A previous version of this article called the JDRF by its former name, the Juvenile Diabetes Research Foundation. This version has been corrected.
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.
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.
I’ve long since forgotten how much those five days of care at an out-of-town hospital cost, but I’m certain it was in the low five figures. About 80 percent was covered by my health insurance. Then we were transferred to a hospital closer to our home outside San Diego, where doctors and nurses taught us how to draw up insulin and, by practicing on oranges, inject it into our daughter.
They also taught us how to prick her fingers and toes four to six times a day to test her blood sugar and to watch for the signs of its becoming dangerously low, which can lead to seizures, unconsciousness and, in rare cases, death. We learned how to try to keep her blood sugar from getting too high, which has few emergent implications but is closely associated with the terrible consequences of this disease: heart trouble, kidney problems, neuropathy, blindness and amputation.
I don’t remember what all this cost either, but it was a lot. And much of it was covered. Soon we switched our family to Kaiser Permanente’s managed care system for the simple reason that it offered big discounts on blood testing strips and meters, insulin and, later, an insulin pump — plus all the care and advice that accompanied the equipment. We’ve been with Kaiser ever since. This has meant a more limited choice of physicians for our family and endocrinologists for my daughter, as well as a sometimes obstinate bureaucracy that people with private doctors don’t face. But overall, the care at Kaiser has been very good.
I’m very aware of the horrors that our medical insurance system has visited on some people with diseases much worse than my daughter’s. That just hasn’t been the case for us.
In 1977, when my mother-in-law died at age 49 of complications from Type 1 diabetes, people with the disease could test only their urine, not their blood. That gave them a rough idea of their blood glucose about 12 hours earlier, forcing them, as the old saying goes, to drive the car by looking in the rearview mirror.
Eleven years later, when my daughter’s case was diagnosed, we could test her blood at any time with a small meter, know within 30 seconds whether her sugar was low, high or on target, and respond accordingly. Years of research have shown that the more time a diabetic spends near the normal range of 100 milligrams of sugar per deciliter of blood, the better she fares.
My daughter hasn’t used a syringe since she was 14. She wears a small pump, about the size of a deck of cards, that sends a steady flow of insulin into a tiny needle inserted in her skin. Before meals, she dials up a little bit more insulin to help metabolize her food.
If you didn’t see this pump or watch her conduct a quick finger stick before meals, you'd have no way of knowing she is diabetic. (The only people who ever do seem to notice the pump are TSA guards, who invariably treat it as a thing of wonder, a tiny alien spacecraft that has landed on my daughter’s hip.)
Today, there are meters that constantly monitor blood sugar through the skin and clinical trials of meters that wirelessly signal pumps to release insulin, an approach that tries to mimic the body’s natural system. Transplantation of the cells that produce insulin from cadavers into diabetics has proved quite successful, but there aren’t nearly enough cadaver cells for the nation’s 3 million Type 1 diabetics.
“The pump changed my life,” my daughter says. “All Type 1 diabetics should get one if they can.” At the same time, when she first was outfitted with the device, she “treated it like a license to do whatever I wanted — eat anything, not exercise, not test my blood sugar. But that’s not what it is. It allows more flexibility in my life — I can have dinner later than planned, go for a quick swim, stop by an ice cream shop, and be confident that my blood sugar — and, by extension, my health — aren’t going to suffer.”
Who paid for these breakthroughs? You did. In 2012 alone, the National Institutes of Health spent $1.061 billion of taxpayers’ dollars on research to treat and eradicate diabetes, of which $150 million was devoted to research on Type 1 diabetes through a special program. The JDRF, a large nonprofit organization, has raised and spent another $1.7 billion since 1987. Private companies have turned this work into the technology that diabetics depend upon.
According to a 2012 study in the journal Diabetes, life expectancy at birth for a child given a diagnosis of the disease between 1965 and 1980 was 68.8 years. That was before widespread blood glucose testing and other advances in care. Today, a Type 1 child can expect a life span about as long as anyone’s, according to Richard Insel, JDRF’s chief scientific officer. Good blood glucose control also has extended the time many diabetics live without complications. At the same time, though, the number of Type 1 diabetics in the United States is on the rise, for reasons no one really understands, Insel said.
My daughter’s Type 1 diabetes cannot be controlled by diet and exercise alone; the cells that produce insulin are dead, killed in an autoimmune attack. But working out and eating right are critical to managing the disease. A diabetic must eat enough sugar to meet her needs, but not too much, which would require more insulin. It’s a constant juggling act for each person, an art, not a science.
Exercise, of course, burns sugar, but it presents the same dilemma as sugar intake. Some exercise is good. Too much can cause low blood glucose emergencies, some as long as six hours later, as my daughter learned when she recently went back to working out regularly.
Type 1’s evil twin, Type 2 diabetes, which results when insulin-producing cells are overwhelmed but still functioning, can be prevented and reversed by staying fit and eating healthfully. Type 2 diabetes, an adult disease that afflicts more than 20 million Americans, now is showing up in about 3,600 children a year, mostly kids who are obese, get little exercise and have poor diets.
This has always struck me particularly hard: the idea of 10- and 12-year-olds sticking their fingers and receiving insulin, as my daughter does, when for them the disease is usually preventable.
A small one, at least, to raise a kid with a chronic disease. When my daughter was very young, we planted stuffed animals and other trinkets at neighbors’ homes for them to give her on Halloween, instead of sugary treats. As she got older, we initiated a buy-back program for the ridiculous amount of candy children collect on that holiday, before she finally reached an age where we could trust her not to binge on her haul.
Every year, we gave her teachers emergency supplies for low blood sugar, such as apple juice and cake icing, as well as short presentations on the warning signs. At birthday parties, we supplied no-sugar treats for her. At sleepovers, her friends learned to keep an eye on her. A physician friend took our calls at any hour.
How did we know about all this? Early on, other families with diabetic children came by to advise us and show us that life would be different, but fine. Later it was the JDRF, doctors, nurses and other health practitioners. Some of it we figured out on our own. Much of it, my daughter has determined by trial and error.
“I don’t ever get to forget about having diabetes,” she told me. “Sure, I have carefree days, but it’s always there in the back of my mind. I have to think about my pump when I swim, make sure I have my testing supplies and emergency juice whenever I leave the house. It really helps to have a good support system — roommates, family — who help me notice signs of low blood sugar when I stop paying attention.”