Between 1977 and 1998, the average number of drugs prescribed per American doubled. Today, the annual prescription drug bill in the United States is almost $200 billion. Particularly for people with diabetes—who often suffer from a complex set of related illnesses— prescription drugs represent a significant part of individual health care spending. Studies have shown that many patients are forced to go into debt or cut back on other necessities to afford their prescriptions.
Yet while some people scrimp and save to buy the pills their doctors prescribe, others skip their meds from time to time—or don’t take them at all. To find out why, epidemiologist John D. Piette, PhD, and a team of researchers spent hundreds of hours asking 800 people in Flint, Mich., about their diabetes medications. The study focused on “safety-net” health care providers, like clinics, that treat low-income patients, most of whom are racial minorities.
Some of the results were predictable. “As costs go up, more and more people will tell you they’re not able to take their medication as prescribed,” Piette says. But other aspects of the survey were surprising. The in-depth interviews showed that factors like culture, race, relationships with doctors, and even depression played strong roles in determining which patients saved to pay for medications and which ones skipped their pills.
One of the most important factors, it turns out, is race. Sixty percent of the patients in Piette’s survey were African-American, and their attitudes towards prescription drugs revealed significant cultural gaps. Black patients were twice as likely as whites to stop taking their medications occasionally to save money or “give their bodies a break.” More than a third considered prescription pills to be addictive, compared to a quarter of whites. And the number of black patients who thought these pills “did more harm than good” was significantly higher than the number of whites. “That’s pretty incredible,” Piette says. “There are a lot of really negative ideas out there.”
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Another issue the study’s results highlighted for Piette was the misconceptions many patients had about generic drugs. He says doctors and health care providers see generic drugs as a safe, effective way to help low-income patients keep their prescription costs down. But the patients Piette’s team surveyed—black and white—saw “generic” very differently. Almost half considered generic prescription drugs inferior to the brand-name originals. And more than half of all the people in the study said that generic drugs were a way for insurance companies to save money at the expense of patient health. “Outside the prescription drug world, generic is a pale version of the real thing,” Piette says. “Buy generic macaroni and cheese at the grocery store, and you’ll learn very quickly why there are these negative beliefs about generic medications.”
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It turns out doctors often aren’t even aware that their patients are having trouble paying for prescriptions, or have decided not to take their pills regularly. In a 2004 study Piette published in the Archives of Internal Medicine, he found that two-thirds of patients didn’t consult their doctors when they decided to cut back on their prescriptions. That communication gap has serious consequences: Patients who decide on their own to cut back on medications put themselves at risk for more serious complications later. People with diabetes who are already struggling to get control of blood glucose and blood pressure are often at the highest risk for serious complications like heart attacks, kidney disease, strokes, and blindness. “Taking your medications every other day isn’t almost as good, it’s not good at all,” Piette points out. “The very best way to get control of your blood pressure and blood sugar is to take medications exactly as they’re prescribed.”
Piette has been studying diabetes for more than 15 years, ever since a grant from the ADA funded his first major epidemiology study. In addition to studying the way people take (or don’t take) their pills, he’s looked at ways people with diabetes can benefit from things like automated phone calls that help them report their blood glucose. He works for the Department of Veterans Affairs in Ann Arbor and teaches at the University of Michigan School of Medicine.
Conducting the survey in Flint was no accident. A city of just under 450,000 north of Detroit, once a thriving manufacturing hub for General Motors, its unemployment rate is now double the national average. “It’s very typical of a poor, urban community where people with diabetes are struggling,” Piette says. Ultimately, understanding the cultural beliefs and misconceptions of people with diabetes in places like Flint is a big step towards better treatment everywhere. “The important message is that there are these beliefs out there, but that there may be something we can do about them,” says Piette.
Andrew Curry is a freelance writer for publications including Science, Smithsonian, and Wired.