Damian Galvan knew it was time to own up. The nurse overseeing his cancer treatment at M.D. Anderson Cancer Center in Houston had summoned him from his home in Brownsville, Texas, saying his latest lab results indicated his disease—chronic myelogenous leukemia—had returned. The lifesaving medications Galvan was on must not be working, he said. "I asked the nurse to close the door," Galvan, now 33, remembers. "I said, 'I have to be honest with you—it's not that the medications aren't working. I haven't been taking them for six months.'"
You'd think Galvan would be a rarity, that anyone with a life-threatening medical condition would diligently take his medicine. But according to an August report by the National Council on Patient Information and Education, only about half of patients take their medications as prescribed, and the longer someone is on a drug, the more likely he is to start skipping doses. The global cost of medication nonadherence (or non-compliance), as the doctors call it, is estimated at $177 billion a year, including indirect costs like lost productivity.
The human cost is high, too. A study in the September 10 issue of Archives of Internal Medicine found that heart disease patients who skipped their meds had more than twice the chance of a heart attack, stroke, or other cardiovascular event compared with those who took them faithfully. Another recent study found that breast cancer patients who were instructed to take tamoxifen were 16 percent more likely to die if they failed to fill at least 30 percent of their prescriptions for the drug than if they filled all prescriptions. Glaucoma patients can go blind without treatment, yet one study found that only 58 percent of those who had lost sight in one eye were taking their medications as directed. Even a few organ transplant recipients eschew drugs, says Robert Hobbs, a cardiologist at the Cleveland Clinic. In some cases, he says, "it's clear that when they stopped taking their medications, they died."
It's not a problem ripe for a quick fix. The reasons for nonadherence are diverse, which means the solutions must be, too. "Medicine is not set up to worry about what happens when people leave the doctor's office," says Alan Christensen, a psychologist at the University of Iowa who has researched adherence. The NCPIE report calls on the government, healthcare workers, and professional societies to make adherence a top priority, recommending a national education campaign, professional training, more federal funding for research, and improvements in health literacy.
Why skip doses? One biggie: side effects. Tamoxifen, for example, can cause menopause-like symptoms, and aromatase inhibitors, a newer class of breast-cancer medicines, may provoke musculoskeletal problems. After surgery, a patient may be told to take either or both for years, to prevent a recurrence. But a new study found that 13 percent of women on aromatase inhibitors stopped because of problems like tendonitis, arthritis, and other aches and pains. "Many people don't take advantage of their treatment," says Marisa Weiss, an oncologist in Philadelphia and founder of breastcancer.org. If a drug's side effects are bugging you, she says, talk to your doctor, who may be able to prescribe a substitute, change the dosage, or give you a brief supervised break to see if symptoms disappear.
For some, expense is the sticking point. A recent study in Health Affairs found that retirees who had annual benefit limits on their health plans were more likely to stop taking their meds than those without caps on their benefits. If you can't afford your prescriptions, tell your doctor. He may switch you to a cheaper alternative, give you free samples of the drug, or help you enroll in a pharmaceutical company's assistance program, which can provide no- or low-cost drugs to patients who can't otherwise afford them.
Confusion. Many patients are simply confused about how to take their meds, says Ruth Parker, a health literacy researcher and expert contributor to the NCPIE report. Studies show that people misunderstand doctors' instructions and prescription labels, and their confusion can be compounded by old age and multiple medications. Parker wants to see standardization of labels; for now, keep an updated list of your drugs, including the dosage, and your understanding of when and how to take them. Carrying that list with you lets you review your prescriptions with your doctor or pharmacist, she says. And if you're a caregiver to someone who may forget to take medications, keep that list for yourself—and find a way to remind the person of her dosage schedule, maybe with phone calls, Post-Its, or the classic days-of-the-week pillbox.
That low-tech solution can work. A study in the October 1 issue of Clinical Infectious Diseases showed that passing out pillboxes to HIV patients at high risk of skipping their meds—a $5 investment per person—improved adherence by 4 percent and cut their risk of progressing to full-blown AIDS by 11 percent. Drug companies are also working to make it easier to take meds, by combining two drugs into one pill, or reformulating drugs so they can be taken less frequently.
Some patients may not understand why they're on a medication—and why they need to stay on it, even if they feel well. A study released this summer looked at veterans who'd been prescribed statins—at low or no cost—to prevent heart problems. Within six months, more than half stopped taking the drugs or weren't taking them correctly. The nonadherers were more likely to say they didn't see themselves at high risk of a heart attack, believed a low-fat diet they'd adopted made the drug unnecessary, or figured that once their cholesterol levels came down, they were "cured." "There's a communication problem," says Devin Mann, an author of the study and an internist at Mount Sinai School of Medicine in New York. "We all need to start out on the same page so patients know why they're on a drug and how long they'll be on it."
Improving one's communication with doctors may be the cheapest and most far-reaching step the average person can take. But Christensen says doctors need to take responsibility, too. "It can even be something like asking the patient whether he'd prefer the once-daily or once-monthly form of a treatment," he says. "It's like when you're trying to get your 4-year-old to eat his vegetables. You don't say, 'Eat your vegetables,' you say, 'Would you rather have the peas or the carrots?' "
Patients' mistaken beliefs or misguided attitudes are increasingly problematic in the treatment of cancer, where it's becoming common for patients to take oral drugs for years. "People get tired of being reminded they have cancer," says Maurie Markman, vice president for clinical research at M.D. Anderson.
For Galvan, the decision not to take his drugs resulted from a combination of unpleasant physical effects—he hated giving himself a weekly injection as well as the rashes that followed—and a desire to escape the reality of a shocking diagnosis. "I felt this sense of urgency to be normal again," he says. "I went from only taking a Tylenol once in a while to having a big Ziploc gallon bag full of pills, another full of syringes, and another full of vials." It was the post-confessional heart-to-heart he had with his nurse and doctor that made a light bulb go on. "They told me, 'You're not the first person to do this, but if you don't take your medicine, you will die.'" Now healthy—and taking his medication as prescribed—he still returns to M.D. Anderson twice a year to make sure his cancer hasn't returned. But he's no longer being monitored more frequently to be sure he's complying. "They saw," he says, "that I'm a man of my word."
TALK WITH THE DOC
The best route to consistent and proper use of prescription drugs, experts say, involves making sure the doctor and you—or the loved one whose care you're overseeing—are on the same page. Some things you need to know whenever a doctor writes you a prescription or a pharmacist fills it:
- Why am I taking this medicine?
- How does it work in my body?
- What's the dosage schedule, and how do I take it?
- Will it safely mix with the other medicines I'm taking?
- What should I do if I accidentally skip a dose?
- What side effects might I experience? Which can I ignore, and which do I need to report?
- How will I know if the medicine is working?
- What should I do when I'm about to run out?
Source: American Society of Consultant Pharmacists