the "dirty little secret in health care" is that many patients ignore doctors' orders and take prescribed medications irregularly, if at all.
by charles ornstein
times staff writer
february 18 2002
deborah willhite, who helped formulate the u.s. postal service's response to last fall's anthrax attacks, stopped taking her antibiotics a full two weeks before her 60-day prescription ended.
willhite, an agency senior vice president deemed at risk for anthrax exposure, couldn't stand the vomiting, an occasional side effect of the medication. the last straw was throwing up in a store parking lot while she was loading packages into her car.
"i heard a couple rolling by me with a shopping cart saying, 'isn't that the lady with the postal service that's on tv all the time?' " she recalled in an interview. "that was the last day i took doxycycline."
willhite acknowledges that she should have been a role model for medication compliance. but instead she acted like many american patients, whether they face anthrax, angina or asthma: she took prescription drugs when and how she saw fit.
"i didn't set a very sterling example, i'm afraid," willhite said.
actually, she was among the more compliant of the 10,000 people at highest risk for anthrax exposure in florida, new york, new jersey and washington, d.c.
in new york city, for example, health officials say as many as half of those prescribed anthrax antibiotics never took a single dose--even though the disease had proved rapidly deadly and the drugs were free. even in washington, where nearly everyone began their drugs, only 60% of people surveyed said they had taken the drugs every day for 30 days.
"if your co-worker died of the disease and you know that there are spores in your environment . . . and you still don't take the medication, imagine how much of a bigger problem we have for things that are less in your face, like your blood pressure and your cholesterol," said dr. jerome avorn, an associate professor of medicine at harvard medical school.
research has shown that the problem extends far and wide--to patients who are on the verge of blindness from glaucoma and those who have just undergone life-saving kidney transplants. even women trying to prevent pregnancies routinely miss one or two doses of their birth-control pills each month.
overall, about 50% of people don't take medications for chronic conditions as ordered by doctors. it's "a dirty little secret in health care," said avorn, who has written extensively about the issue.
the reasons patients cite for stopping--or never starting--medications are varied. some feel fine without the drugs. some simply forget. others don't have money or insurance, or the side effects are too much to bear.
and then there are many people who foul up the timing of their drug treatment--and then try to compensate for skipped doses by taking more.
compliance is particularly important with antibiotics, which work by attacking bacterial cells within the body and preventing their ability to reproduce. if the drugs are taken inappropriately, they kill only some of the bacteria, allowing remaining cells to thrive and develop resistance to those antibiotics in the future.
completing a prescription generally kills off all bad bacteria, removing those risks.
studies show patients lie to their doctors
doctors often take for granted that patients will take their drugs as prescribed, but researchers have shown conclusively that such assumptions often are wrong.
in one 1986 study, for instance, researchers placed an electronic device in the eye droppers used by glaucoma victims. it tracked every time the bottle was opened and turned upside down. on average, people missed about a quarter of their prescribed doses. but in interviews, patients said they had taken a full 97% of their drops.
other studies have similarly shown that people lie about their habits to stay in their doctors' good graces. in the day or two leading up to a doctor's visit, patients tend to take their medications more religiously, an effect some researchers have called "white coat compliance."
when he was a young eye surgeon, dr. kenneth j. hoffer of santa monica said, "i just assumed that glaucoma patients would [follow directions] just out of the fear of losing their sight. . . . [but] as time went by, sometimes i would find that patients were lying to me."
initially, he said, most did try to follow directions. when it became a bother, however, patients seemed to build up "a resentment about it," and many rebelled.
when patients stray, studies show, some get sicker faster and die earlier. and taking the drugs haphazardly can lead to more health problems than not taking them at all.
sensing a market, entrepreneurs have devised techniques and gadgets to keep patients diligent. some companies sell pillboxes with beeping alarms, refrigerator magnets that blink, watches that vibrate, and subscription reminder services for pagers and cell phones.
sequella inc. of rockville, md., is developing a wristwatch that can detect the presence of tuberculosis medicine in a person's bloodstream. tb is highly contagious, and failure to take drugs as prescribed could cause a person to remain infectious for an indefinite period, putting others at risk. the infected person could also develop resistance to commonly used drugs.
researchers have found that patients tend to perform better when they know they are being monitored.
aardex ltd., based in zug, switzerland, makes a medicine bottle with a microchip that keeps track of when the bottle is opened. patients can't tamper with the results unless they deliberately throw away pills or open the bottle and then forget to take a pill.
"if you're going to really manage chronic conditions, you need to know what the people are doing with the medicine," said dr. john urquhart, aardex's chief scientist.
drug companies are trying to bring patients into compliance as well. the most promising solution is to develop medications that can be taken once a day and that don't produce harsh side effects, said christopher dezii, a manager at bristol-myers squibb. this is especially true for patients with complex diseases such as aids, who sometimes take three dozen pills a day, with rigid rules for each medication.
insurance companies, too, are concerned because studies suggest that compliant patients have fewer emergency room visits and hospital stays. aetna inc., for instance, sends out quarterly letters to 20,000 primary-are doctors listing members of health maintenance organizations who were late refilling prescriptions for high blood pressure, high cholesterol, congestive heart failure, asthma and diabetes medications.
aetna also sends an instant message to pharmacists if members come to pick up a refill a week or more after they were supposed to.
even with reminders and a doctor's urging, the ultimate decision on whether to take medicine rests with the patient.
and fear, apparently, is not enough of an incentive, or not a lasting one.
those given antibiotics to prevent anthrax, for example, had friends or co-workers who had died, been hospitalized or developed serious, unsightly skin infections. anthrax-contaminated letters had passed through their workplaces. medications were provided free of charge. and endless media attention didn't allow anyone to forget about their risks.
as time wore on, though, bothersome side effects, a lack of symptoms and relatively few deaths stopped many people from taking their drugs.
bobbie bender, a news assistant for the sun supermarket tabloid, worked less than 50 feet away from bob stevens, the first person to die of inhalation anthrax last fall. like the 400 employees of american media inc. in boca raton, fla., he was offered a 60-day supply of cipro.
but bender stopped taking cipro after about a month because he was seeing white spots and feeling nauseated. he switched to another antibiotic, doxycycline, for another week, then gave up.
"it was to the point where we had to draw a line," he said. "i don't want to be a guinea pig. i don't think i'll ever get it [anthrax], not from this circumstance."
phil aron, a senior editor for the national examiner, located in the same building as the sun, said he stopped taking antibiotics after 30 days. a death in the family disrupted his routine and he never got back to it.
"i was one of the last people i knew who was even taking them, to be honest with you," aron said. "it just seemed unnecessary since no one else was showing significant symptoms." his attitude had changed over time.
"at the very beginning, there was a lot of concern about how to get a hold of the antibiotics. our beloved co-worker had just passed away, and we were all feeling very vulnerable. but as the test results came back . . . and there didn't appear to be anyone else coming down with the full-blown illness," people were less anxious to take the drugs.
lack of information about side effects cited
even those who took the drugs said they could have used more coaching and information along the way.
bill lewis, president of the trenton, n.j., local of the american postal workers union, followed through with the 60-day regimen. but when he went for his initial set of pills, "nobody told me nothing" about side effects or problems he might encounter.
"i stood in a long line like anyone else, logged in some paperwork like you do with any visit. the pharmacist handed me a bottle with nothing written on it except, 'cipro, two times a day, empty stomach.' . . . i left with a piece of paper telling me to come back in two weeks."
federal health officials acknowledge some missteps. early on, they were most worried about getting enough antibiotics to people at risk of anthrax infection. educating patients about the need to take the drugs was less of a priority--until lapses unexpectedly began.
"it's a huge challenge to try to educate people appropriately. it's not something you can do once and walk away," said centers for disease control and prevention epidemiologist ian williams, who is studying compliance among the high-risk group.
education, it seems, isn't all that's needed.
willhite, the postal service's anthrax point person, knew as much as many health officials about the risk of the deadly bacteria. yet, in the end, she just couldn't follow through with her drugs.
"i don't think they ever thought i would quit taking it," she said. "hopefully, if anything like this ever happens again, there will be something worked out that will make it more tolerable for everybody involved."
having problems complying with cipro's regemin (understand side effects)... can you imagine if keflex qid was the drug of choice???