You are sick with something-or-other and your doctor writes you a prescription for a medication. She briefly tells you what it’s for and how to take it. You go to the pharmacy, pick up the medication, go home and follow the instructions, right? I mean, how hard could it be?
Pretty hard, it appears. Between 20 percent to 80 percent of us – differing by disease and drug – don’t seem to be able to do it.
There are, of course, many reasons we aren’t. Drugs are sometimes too pricey, so we don’t fill the prescription. Or we buy them and then apply our ingenuity to making them last longer by splitting pills and otherwise experimenting with the dosage.
Some drugs have to be taken at specific times or under specific conditions, posing little challenge when you are taking only one. But it can be devilishly difficult to coordinate the green pill half an hour before breakfast, the yellow ones on an empty stomach four times a day and the orange one with a snack between meals. It’s complicated; we don’t understand. We’re busy; we forget. We’re sick; it’s confusing.
Some drugs produce uncomfortable side effects while others set off an allergic reaction. Every single day, we have to decide if the promised outcomes are worth the discomfort.
Kate Lorig, the developer of the Chronic Disease Self-Management Program, has listened to thousands of people talk about the challenges they face in taking their medications as prescribed. “One of the reasons that folks do not take their meds is that they think they are not doing anything,” Lorig says. “This is especially true of medications that replace something that you no longer produce like thyroxin or medications for chronic conditions that help you get worse more slowly. The trajectory of a disease is not something one can usually sense, and people start feeling that their drugs are not making them better. Another problem is that people expect drugs to work at once like aspirin and antibiotics. Many drugs take days, weeks or even months for people to feel better. They lose patience.”
Depression also plays a significant role: a meta-analysis published last week found that people with chronic conditions and who also were depressed were 1.76 times more likely to be non-adherent compared to people with chronic conditions who were not depressed. This finding is particularly important because while depression is common in the general population, it is much higher in those over 65, who are also more likely to have additional chronic conditions, most of which require medications to manage and treat.
And then there are people like me who physically struggle to take pills. I have a lazy swallowing reflex as the result of radiation to my throat, and I frequently gag on even small tablets. And so I approach every single pill I take with a vivid fear of choking to death on it. Good excuse for not following my chemotherapy regimen, no?
Add to this list of common explanations for why we don’t take our drugs as directed the media messages and cultural tropes that feed our ambivalence: “Drugs are dangerous! What looks safe now may turn out to hurt you in the long run…remember Vioxx?” “Ask your doctor about this drug that will make you feel calm and confident about a) your sexuality; b) your bathroom needs; c) your interpersonal relations; d) your eyelashes.” Then, compare my friend in excruciating pain from a spinal tumor who refuses strong pain medication because she doesn’t want to get addicted to it with the teenagers all over the country who seek out that same medication to ease the anxiety of growing up.
This is a complicated picture.
So it is no wonder that an encyclopedic Cochrane review that evaluated interventions to improve medication adherence found that “No one type of strategy improved medication use outcomes across all diseases, populations or settings, or for all outcomes.” Think about it: What 10-page pamphlet, 10-minute counseling session or $10-off coupon could reliably help all of us overcome the barriers described above?
The review found that some strategies show modest promise: self-monitoring, greater pharmacist involvement, simplified dosing. Other strategies produce fewer (although some inconsistent) effects: reminders, skills training, financial incentives, use of lay health workers. But research on medication adherence “is not well organized across diseases, populations and settings,” the review said, and “there are many gaps in the assembled evidence on medicines use strategies, such as those focusing on children, young people or carers, or those for people with more than one coexisting health problem.”
Unfortunately, this means that policy makers and health professionals have little guidance about what can be done to help us improve the way we use medications.
This is simply not good enough.
Ninety percent of American seniors and 58 percent of non-elderly adults use a prescription medication on a regular basis. These numbers will increase as personalized medicine goes mainstream, offering us the opportunity to ingest exquisitely tailored medications that can counteract our genetic flaws to extend our lives.
Think about it: Hundreds of millions of dollars worth of research is translated into a drug that costs millions of dollars to produce, which in turn cost hundreds of dollars for a clinician to prescribe and tens of dollars for our health insurance to pay for — but the potential of that drug to alter the course of a disease depends on the actions of an individual: you, me, my friend with dementia, your aging neighbor, your grandchild with type 1 diabetes. If we don’t take the drugs as directed, we don’t realize their benefit.
The nation has poured public and private money into basic research and drug development and invested heavily in training health care providers. But as the Cochrane review demonstrates, the research that would strengthen the critical link between all those investments and the individuals who are ultimately responsible for ensuring that it has an effect is limping along: equivocal, uneven and irrelevant to many of those who stand to gain the most from the drugs available to them. Meanwhile, such system-level remedies such as simple uniform medication labeling are lost in a morass of self-interested wrangling.
If the success of modern medicine to improve health relies so heavily on our actions, it’s time for more concerted, strategic approaches to reducing the significant barriers to us taking both the medicine and actions as recommended.
The systematic review found that there is no “magic pill” – no single intervention – that will solve the adherence problem. Why should there be? We know from other efforts to change complex behaviors, such as cigarette smoking, that it is only when a variety of approaches support, encourage, prompt and reward the new behaviors over time that significant numbers of people will adopt them. Improving adherence will require a concerted effort by the pharmaceutical industry, health plans, pharmacists and clinicians to step up implementation of even mildly promising interventions to make it easier to follow recommendations.
The impetus for an increased investment to support medication adherence may, oddly enough, come from clinicians themselves. With the advent of pay-for-performance and other incentives that link provider reimbursement to patient outcomes, we are no longer the only beneficiaries of the effective use of our drugs. It is possible that this nudge will spark productive interactions between clinicians and patients about what and how the drugs they prescribe for us can be best used to help us prevent complications, slow the progress of our diseases and ease our suffering.
Jessie Gruman, PhD, is the founder and president of the Washington, DC -based Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient Forum.