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The Real Drug Problem: Forgetting to Take Them

As Many as Half of Patients Fail to Follow Their Regimen; a Pillbox That Can Nag  

By Amy Dockser Marcus, The Wall Street Journal
October 21, 2003

It has become one of the most perplexing problems in medicine: Only about half of the people on prescription drugs actually take them.

Much of the national debate focuses on how to help more people afford costly medicines, but that in many ways has masked the increasingly urgent problem of getting patients to take medicine once they get it.

The consequences of non-adherence, as many doctors refer to it, are significant. Failure to take prescribed drugs contributes to everything from avoidable emergency-room admissions to AIDS deaths; it can also undermine efforts to manage chronic conditions, such as asthma, diabetes, high blood pressure and depression.

Earlier this year, the World Health Organization reported that only around 50% of people typically follow their doctors' orders when it comes to taking prescription drugs -- and the rates are lower for certain medical conditions. Only 43% of patients take their medicine as prescribed to treat acute asthma. Between 40% and 70% follow the doctor's orders for depression medication. Just 51% of patients take the prescribed doses of high blood pressure medicine.

The phenomenon is a major reason that the promising results of drugs in clinical trials often aren't matched when the drugs are in the hands of other patients. Trials of antiretroviral therapies, for instance, have proved effective in suppressing the AIDS virus in as many as 95% of participating patients. But in the routine of daily life -- when patients are less vigilant about following doctors' orders -- the reported rates of suppression drop to the 40%-50% range. Doctors believe the discrepancy is one important reason why so many people still continue to die from AIDS.

The issue of why people don't take their medicine, even when they need it to prolong or save their lives, belies simple explanations or demographics. Rich, highly educated people are just as likely not to take their medicine as poor or less-educated people. Some of it is human nature, an inner rebellious voice that resists the doctor's orders. Many patients mean to take their pills but don't write down what the doctor says and end up not following the instructions properly. Others forget, particularly when they have to do it more than twice a day. There is also the growing expense, even for people with insurance, as many insurers raise co-payments on drugs .

But the major reason appears to be a fear of side effects. People don't like the way they feel when they take many drugs , so they simply stop taking them.

A Lifelong Burden

The problem appears to be getting worse. Medications are getting better and are more effective in treating a wider range of diseases, but many need to be taken for long periods, even a lifetime. Many diseases for which patients end up taking medicine for years on end -- such as high blood pressure and high cholesterol -- often don't have overt symptoms, making patients even less likely to take medicine faithfully. In addition, more doctors are prescribing medicine for prevention, giving patients less incentive to follow instructions.

"There is a fundamental change taking place in the way we prescribe medicine," says Cynthia Rand, a professor of medicine at Johns Hopkins School of Medicine in Baltimore and an expert in the field of non-adherence. "Now there has to be a change in the way we take it."

Physicians, insurers and the federal government are beginning to address this. The National Institutes of Health now has over 35 trials under way studying ways to improve patient adherence in taking medication for a range of conditions, including depression and other psychiatric disorders.

A second annual conference devoted exclusively to improving adherence to HIV therapies is taking place later this year in Dallas . The World Health Organization is developing an adherence training package for health professionals and community workers focusing on how to get patients to be better about taking pills. The initial focus will be on antiretroviral therapy, but plans are in the works to do something similar with diabetes, hypertension and depression.

Doctors' offices are experimenting with voice-recognition software that places phone calls, sometimes as many as three times a day, reminding patients to take their pills. Some patients now use smart pillboxes with electronic devises that beep when it's time to take their medicine.

Kaiser Permanente, a managed-care organization with eight million members, has its pharmacy analyze refill rates on asthma medications. It then alerts doctors when patients appear to be refilling medication that gives immediate relief to acute attacks more than they are refilling the long-term medication to prevent attacks in the first place. Kaiser has also expanded a program that trains doctors and nurses to negotiate with patients about their motivations for taking medicine and find out what the patient is willing to do.

"The idea is the physician's job isn't just to write the prescription," says David S. Sobel, director of patient education for Kaiser in Northern California .

The success of such efforts is considered critical to gain control of the national health bill. One study published early this year reviewed the wide variety of interventions being used to try to get people to take their medicine and determined that public-health dollars would be more effective if spent on finding better ways to get patients to actually take their medicine rather than on improvements in the medical treatments themselves.

A Cash Incentive Fails

But to date, efforts to get people to change their behavior haven't fared well. One study trying to improve adherence in adolescents with diabetes even included a $100 incentive for attending diabetes education sessions. More teens attended the sessions, but it didn't improve their records taking the medication. Many doctors say they now tailor the approach to an individual's needs, calling patients who miss doctors' appointments, mailing information about their medications, following up with e-mails, whatever strategy seems to work with a particular person.

Often patients don't discuss the problem with their doctor. "It's like when the dentist asks you if you've been flossing your teeth twice a day," says Ms. Rand of Johns Hopkins. "People lie because they know what the right thing to do is and they are embarrassed that they are not doing it."

But Kaiser's Dr. Sobel says people who are having problems taking their medicine should discuss it with their doctors because sometimes adjustments can be made. If someone is taking five medications, he says, sometimes one or more can be eliminated. In other cases, a doctor can simplify the drug regimen so that a patient needs to take several medicines only once or twice a day rather than three or more times.

'Oops, I'll Take Them Tomorrow'

Joanne Kruidenier, a 70-year-old emphysema and heart patient at the National Jewish Medical and Research Center in Denver , says there were a variety of reasons why she didn't always take her medicine, even after she ended up in the emergency room because she couldn't breathe. She says she didn't understand the doctor's instructions on how and when to use each of the three different inhalers she was prescribed.

"He would start to tell me and I'd tune him out," she says. "I was overwhelmed."

She also didn't like admitting that she has a chronic condition and will require drugs for the rest of her life. "Sometimes I forget to put them in my purse," she says. "I'd dress for the day, leave the house, realize I forgot them and say, 'Oops, well I'll just take them tomorrow.' "

Her behavior didn't start to change until recently, she says, when a nurse shared her own experience of not taking her diabetes medicine -- and the kidney failure that arose as a result.

Her story made the difference for Ms. Kruidenier. But she concedes she still has room for improvement. "I'm doing much better now, but it's still not 100%," she says. "I never realized how hard it was going to be to take my medicine."


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