A real-world look at insulin pumps
Chanda Copple with sons Mason (top) and Cameron
Chanda Copple, RN, CDE, a diabetes nurse educator in Lincoln, Neb., knows the ups and downs of insulin pumping, inside and out. She not only teaches patients how to use pumps but has worn one herself for the past 14 years.
Doing so has allowed her to forgo multiple daily insulin injections and made it easier to eat cake at her wedding—and deliver two healthy babies. But although Copple says she is a "big supporter" of the pump, she's also the first to admit that using it requires motivation and hard work.
As insulin pumps have come into their own, they have changed the lives of their users. Thirty years after the first bulky models debuted, about 200,000 of the more than 20 million Americans with diabetes use insulin pumps—mostly people with type 1, for whom the alternative is multiple daily injections of insulin. But it's key to keep in mind that pumps are not a "set-it-and-forget-it" solution. "People do best when they come in with realistic expectations," says Howard A. Wolpert, MD, director of the insulin pump program at the Joslin Diabetes Center in Boston. "It also helps to have a tolerance for ambiguity, so that you can have what amounts to a skeptical appreciation of the pump's benefits."
Those benefits can be significant. In place of daily rounds of shots, the pager-sized pump delivers insulin continuously throughout the day and night, in most cases through tubing inserted under the skin. The amount of insulin released is based on information the user programs into the device, though Wolpert emphasizes that finding the correct rate "can take months of fine-tuning and evaluation." Bolus doses—quick bursts of insulin that cover meals and correct high blood glucose—are administered as needed.
The pump can free users from regimented eating and sleeping schedules (Dine at 9 p.m.! Sleep till noon!) while still maintaining stable glucose levels between meals and overnight. In effect, the device turns traditional insulin therapy upside down. "Patients take insulin to cover their food, instead of eating to cover their insulin," says Wolpert. The pump can also be programmed for the changing demands of exercise and can even help with weight loss because snacks usually aren't needed to cover physical activity, he says: "Motivated people who want to lose weight through exercise can do it much more easily with the pump." Because the pump delivers even very small doses of insulin precisely, for many people it stabilizes blood glucose better than injections do—and with a lower risk of hypoglycemia.
And it's not just for adults: At 21 months, Jake Kasper was the youngest patient on an insulin pump at the Children's Hospital of Philadelphia (CHOP). His parents had begged doctors to try the device when injections failed to stop Jake's extreme swings in blood glucose. "With injections, we never knew what we were going to get," says Jake's mother, Rachel. "His blood sugar could go from 500 to 40 in 15 minutes. And trying to measure tiny increments of insulin with a syringe was incredibly difficult."
Now 5, Jake still has unstable glucose levels, but the pump makes them much more manageable. His parents can easily administer small doses, and his life is more like that of other toddlers. "There are more 'yeses' with the pump," says Rachel Kasper, "and not so many 'nos.' "
In fact, living with the pump may be easier for some children than it is for adults. "With toddlers, it's pretty much out of sight, out of mind. They put it in a pouch and forget it," says Stuart A. Weinzimer, MD, associate professor of pediatrics at Yale University School of Medicine in New Haven, Conn. But fast-forward a few years in a child's life, and the scenario changes. For some self-conscious teens, wearing a pump may simply be too public. "The patients we see who most want to come off the pump are adolescent girls," Weinzimer says. As Copple puts it, "wearing the pump 24 hours a day is a constant reminder that you have diabetes. You don't ever get a break."
The device has its logistical issues, as well. Finding a comfortable and discreet way to carry the pump and its tubing is one such issue. Options include belt clips, fanny packs, clothes with hidden pockets, and NBA-worthy "sports cases." Copple likes an elastic pants pouch that fits behind her knee, but she has been known to stick the pump in her bra, when a particular outfit required it. For children, there are soft, elastic waist pouches and cozy pajamas with special pockets.
A different solution is the tubeless pump, worn directly on the skin like an infusion set. The wireless device used to program tubeless pumps is carried separately. Some people like the tubeless pump for the greater freedom of movement it affords. But others find it bulky, less comfortable, and harder to hide.
Copple notes that regardless of pump types, finding infusion sites can also be tricky and that skin irritation, scar tissue buildup, and infection can be problems. The abdomen is usually the best place for the catheter, but sites need to be rotated every few days to keep tissue healthy.
The most serious downside to the pump is an increased risk of diabetic ketoacidosis (DKA), a life-threatening condition caused by high blood glucose. DKA can strike quickly if the tubing kinks or the device fails. "Because you're using [only] short-acting insulin, you can get into trouble a lot faster," Copple explains. "There's not as much of a window [for adjustment]." DKA can be prevented, but it requires vigilance, including a minimum of four blood glucose checks a day. "Throw me under a bus," says Copple, "and I'll still be checking my blood sugar."
Then there's the expense—$5,000 or $6,000 for the device itself and around $1,500 a year for supplies, including batteries, infusion sets, and insulin cartridges. Steven M. Willi, MD, director of the Diabetes Center for Children at CHOP, says that he has yet to find an insurer unwilling to fund a pump for a child, but adds that it's different for adults, especially those with type 2. Often, insurance companies require proof that the pump will provide better control than daily injections do.
Ultimately, the pump is a sophisticated tool for helping people with type 1 and, increasingly, some with type 2 manage their diabetes. Like all tools, it's only as good as its user, and as Willi points out, there are trade-offs. "You get a bigger hammer," he says, "and it does a better job. But there's also a greater chance that you'll hurt yourself." As with many aspects of diabetes, knowing your own strengths and limitations will help you decide whether the pump is right for you.
For the Kaspers, meanwhile, pumps are now a part of life. When they first joined a diabetes fund-raising walk event, recalls Jake's dad, Scott Kasper, "we had to come up with a team name. It was close to Halloween, and our son Ryan [who doesn't have diabetes] suggested 'Pump-kins.' That's us exactly: pump kin."
Linda Rath is a freelance writer and editor in Arizona.