It's a miracle drug. So why do so many people with type 2 try to avoid the needle at any cost?
Larry Blas hates diabetes. A city environmental inspector who lives in a small south Texas fishing town outside Corpus Christi, Blas was diagnosed three days after being discharged from the Navy, at the age of 25. Over the years, his A1Cs crept up into the dangerous 13 to 14 range, leading to a vision-impairing stroke. But even though Blas was aware that insulin could regulate his blood glucose, he didn't realize just how dangerous poor control could be. Starting insulin didn't seem worth giving up what he thought of as his "freedom." He also worried about erectile dysfunction, or ED. "All you ever heard, if you're on insulin, it causes ED," says Blas.
Blas' misconceptions about insulin are by no means unique. Insulin is one of science's wonder drugs, yet it still suffers a serious image problem of complex origins. There's even a name for this conundrum: psychological insulin resistance (PIR), which researchers say is endemic in diabetes care. PIR manifests itself in the myriad reasons people say they want to avoid insulin therapy, including the weight gain associated with insulin use, the pain and inconvenience of injections, risk of hypoglycemia, and concerns about efficacy. Then there are the straight-out errors, like the comment about ED and insulin. "People associate it with bad outcomes," says Richard Rubin, PhD, a professor of medicine at Johns Hopkins University—for example, the idea that "your grandmother had worse diabetes complications after the insulin started." Of course, those complications were the result of damage done before or in spite of starting insulin treatment—which, for all the reasons just listed, people tend to hold off on until things get desperate.
What's more, PIR isn't limited to patients: Doctors and other health professionals have their own list of reasons for hesitating to prescribe insulin. They assume patients won't want to take it; they don't think that it will work or that patients will use it properly; they worry about the time needed to educate a patient about insulin; and they're concerned about the psychological effect of the ingrained notion that insulin is a treatment of last resort. The combination of patient and provider resistance has led to a scenario where insulin is likely underused, resulting in avoidable complications.
Then and Now
For decades after its discovery, insulin was the only diabetes medicine; it remains the most potent. (It's still the essential treatment for type 1 diabetes, in which the body no longer produces its own insulin.) This is not surprising, given that insulin is the body's natural method for blood glucose control. Because people with type 2 diabetes usually still make some insulin, oral anti- hyperglycemic medications—which either lower blood glucose by boosting receptivity to native insulin's action or squeeze more insulin out of the pancreas—are typically the first line of defense for controlling blood glucose, along with diet and exercise.
Type 2 diabetes is a progressive condition, however, and over time the body's capacity to make insulin deteriorates. The landmark United Kingdom Prospective Diabetes Study (UKPDS) showed that newly diagnosed type 2 patients have 50 percent of normal insulin secretion. After six years that drops to less than 25 percent. So, almost inevitably, people with type 2 diabetes are going to require insulin supplementation over the course of their care—a fact many are unaware of. In fact, it may be in their best interest to start even earlier. A study published in the May 24, 2008, issue of the Lancet found that when newly diagnosed type 2 patients began insulin therapy right away it gave them better blood glucose control than with the oral medications.
And yet the UKPDS also found that insulin was so reviled that 27 percent of the group slated to receive it as part of a clinical trial flat-out refused. The other treatments being tested—metformin, sulfonylureas, and diet—didn't get this pronounced negative response. So what sets insulin apart as the bad guy?
Beyond the Ouch Factor
The most obvious culprit is, of course, the needle. Even though today's insulin needles are tiny and usually pain-free, there's no getting around human abhorrence of injections. But that can't be the whole story, says Rubin, especially considering the recent success of injected diabetes drugs like exenatide (Byetta). "If you look more deeply, you'll find these other things," he says. Rubin was the lead author of an international study—Diabetes Attitudes, Wishes, and Needs (DAWN)—aimed at determining the underlying views associated with insulin therapy. Among the other reasons for avoiding insulin treatment, it found that less than half of the health professionals surveyed realized it could have a positive effect on type 2 care. Their patients aren't getting the message either: Most did not agree with the statement "Using insulin would help me to manage my diabetes better." Given that "very often the health care provider responds to a patient's resistance," says Rubin, it's no surprise that he and his colleagues found that over half of doctors agreed that insulin should be avoided for as long as possible.
In fact, over half the providers in the DAWN study reported trying to coax patients into better self-care by pointing to insulin as a consequence of inaction: in other words, threatening patients with the needle. No wonder then that most people agreed with the statement "Starting insulin would mean that I have not followed my treatment recommendations properly." Samantha Tweeten, an epidemiologist in San Diego who has type 2 diabetes, says she felt guilty about starting insulin in January 2008. Tweeten had been diagnosed two years prior, and started insulin when her A1C continued to climb two doctor appointments in a row, despite doubling her dose of metformin and trying lifestyle changes. "There's a lot of this idea, 'If you work hard enough you can control this with diet and exercise,' " says Tweeten. "I had the very classic 'This is a failure on my part,' which every type 2 person I know has."
And yet, as Rubin notes, "Even if you do exactly the right thing as long as you can do it, eventually you'll need [insulin]." He recommends that health care providers help people with diabetes figure out the root of the PIR in each case. Then, they can zero in on and address the specific belief responsible for a person's resistance.
For example, a fear of a loss of freedom like Blas' may be alleviated by providing patients with the insulin pen option, which can be less cumbersome than using syringes. The pens, which are prefilled with insulin, allow people to "dial in" a dosage rather than drawing it out of a vial. "When I started this insulin ritual thing," says Blas, it was "with the needles and the bottles. Those are miserable. With the pen it's easier." In a study published this year in Diabetes Care, Rubin found that if a physician simply presented the insulin pen as an option, people with diabetes were more likely to use it.
When the issue is self-blame, Rubin thinks the most successful physicians talk about insulin as an inevitability, rather than a threat. "The devices have a place, but so does education," says Rubin. "It doesn't mean you failed." Rubin also thinks it would be a good idea for doctors to emphasize that "insulin is a good thing."
That was a hard sell for Blas, but two years ago, at the age of 46, he started taking insulin. Now, he says, his blood glucose has improved, and he's feeling more energetic. "I'm not sitting around always catching my breath," says Blas. "My kids are trying to catch up with me." But he says this boost in health comes with some tangible drawbacks. Going to lunch at work has become a challenge. "You need to hide yourself away from your coworkers," says Blas. "I have to do my little medicine thing." He jokingly calls his insulin case his "man purse." His wife, meanwhile, calls it his "life purse."
For most people with type 2, once they start insulin, they are generally satisfied, according to a 2004 study published in Diabetes Research and Clinical Practice. "My overall feeling of well- being is 75 percent higher" since starting insulin, says Tweeten. "Once I decided I had to do this— because I was not going to lose my toes, kidneys, or vision—I was surprised by how easily it blended into my life," she says. "The last thing I do each day is load a syringe and feed the cat. It's just part of my going to bed."