Jessie C. Gruman, PhD is president and founder of the non-profit organization Center for Advancing Health. Her experiences as a patient — having been diagnosed with five life threatening illnesses — informs her perspective as an author, advocate, and lead contributor to the Prepared Patient Forum blog. Her most recent book, AfterShock, helps patients navigate their way through the health care system following a serious or life-threatening diagnosis. You can follow her on Twitter at @JessieGruman. More…

What do people do about uncomfortable, unanticipated side effects of medication?

The answer to this question is often: “Stop taking it.”

Our unwillingness to take our medicine as directed is often mistakenly viewed by clinicians and researchers as a sign that we are not “engaged” in our care. Baloney. Many of us would be perfectly happy to do so were it not for those pesky side effects.

This might appear to be a trivial problem unless you are the one who has it.  But given our generally casual approach to medication adherence (estimated to be responsible for more than $290 billion in health care expenses annually) it is worth a closer look at policies, incentives or new delivery system models that might help us out when a new medication makes us itch uncontrollably.

Let’s start with how common medication side effects should be handled…

In a rational world, I would call my clinician, she returns my call within 12 hours, we talk about it, she suggests cutting the dose, timing it differently or prescribes an alternative approach.  In an ideal world, I suppose this whole interaction takes place within a couple hours online with a member of my care team in my medical home via a patient portal and includes short follow up email conversations over the coming weeks to monitor both my symptoms and drug side effects.

Is that how it works for you?

It’s not how it works for the four people who mentioned this problem to me in the past week. For them, itchiness was the most popular reason given to stop taking new prescription medications (followed by wobbly stomach). This is an unscientific sample to be sure, but the number of complaints in such a short time caught my attention, as did the fact that all of them contacted their clinician to ask about whether this was normal and whether they should stop taking the drug.  And none of them got a reply within 48 hours.  That would be a lot of itching if they had waited for their clinician’s OK.

One person reported reading carefully through the package insert, WebMD and the manufacturer’s online site to find out about side effects. Itchiness was not one of them, but when he Googled the name of the drug and “itchiness,” the search came back with hundreds of reports by people who had the same complaint. Many of them reported that they stopped taking their medication—and the itch went away.  Note that these people were sufficiently “engaged in their care” to go online to find out if anyone else was scratching.

Is this a trivial problem? Not to those people with itches and wobbly tummies, certainly. Their original complaint remains untreated, plus they have added an additional source of discomfort.  But is it trivial to clinicians or employers or health plans or anyone concerned about the overall cost of care?  Perhaps not.

Drugs that are purchased but not taken are wasted. When we discontinue medication meant to cure disease or manage symptoms, predicted outcomes are less likely to be reached and this can affect clinician and institutional payment.  Employees miss work or are distracted by the original problem or drug side effects.

The size of this problem is unknown, but consider that 60 percent of the U.S. population reported using one or more prescription drugs in 2010.  That would be 12 prescriptions per capita.  In one year.  The number of different medications individuals use means that side effects and drug interactions are more common. What percentage of the nation’s $320 billion annual prescription drug expenditures could be reduced – or the effectiveness of that investment improved – by addressing this problem?  And just what would it take to address the problem of new side effects, anyway?

Here’s what solutions look like from our perspective:

First, I can hit Dr. Google. Searching produces a cascade of information, some of it useful (if only to validate my experience), but much of it is biased or inaccurate. Information can reduce uncertainty about the cause but doesn’t touch the itching itself. And I risk exacerbating my original complaint by not treating it if I stop taking the drug.

Next, I can head to the pharmacy.  Pharmacists are an excellent resource.  They can provide accurate information about side effects if I can get one to talk to me.  But they don’t know my medical history or why my clinician prescribed this medication specifically. I probably will have to provide information about all the other medications I take. And after all this, the pharmacist can suggest alternatives but can’t prescribe them.

As an alternative, I can call that handy medical advice line provided by my health plan.  Nurse advice lines present similar challenges to pharmacists, although with less specific drug knowledge.

The best alternative is to talk to my prescribing clinician.  He knows me, the history of the problem, my allergies and sensitivities, and he knows why he prescribed this medication as opposed to the generic or a similar one.  He could work with me to try different approaches until together, we find one I can tolerate that will address my original complaint. But this takes time, and my limited sample from last week suggests that many busy clinicians – generalists and specialists alike – just don’t have the back-up organization to respond to what appears to be a kind of low-level query.

The patient-centered medical home model promotes using a team approach to responding quickly and knowledgeably to such inquiries, supported by a patient portal and secure e-mail communication. But today, most people do not receive primary care in practices organized in this way.  Further, a significant percent of prescriptions are written by specialists who lack support and incentives to address this concern.

Why raise this issue?

Because it is a good illustration of how advances in health care simultaneously promise better outcomes for us (so many new drugs that can do so much more!) while demanding more from us (managing side effects, complicated dosing regimens and potential drug interactions!).  To realize the potential benefit of all the new prescription medications now available, we need to invest more time and energy in figuring out which ones can do the job, given the trade-offs of effectiveness, side effects, interactions and expense.  Obviously, we can’t make these calculations alone; we need the ongoing help of our clinicians to do so.  But our clinicians have yet to realize the extent to which these additional choices of medications require more and different conversations with us than they are used to or prepared for.

This example also illustrates a slow leak in resources – money and time: ours, our clinicians’, our employers and our hospitals.  This slow leak is one of many that undermine the potential of the nation’s investment in health care to reach its potential in improved outcomes.

And for us patients and families particularly, it tells a true story about how our efforts to use the tools of health care to live our lives free of suffering are thwarted by a mindset that equates compliance with engagement and inadvertently prevents the kind of collaboration that will give us the best shot at doing so.

Related Links:

• Engagement Does Not Mean Compliance – Jessie Gruman
• Check-In-The-Box Medicine: Can the Blunt Instrument of Policy Shape Our Communication with Clinicians?  – Jessie Gruman
• “Patient Engagement!” Our Skin is in the Game  - Jessie Gruman
• Side Effects: When Silence Isn’t Golden
• Guest Blog: Minimally Disruptive Health Care: Treatment that Fits – Marcus Escobedo
• Guest Blog: Adherence: The difference between what is, and what ought to be – Scott Gavura