(This essay was written as part of The Op-Ed Project.)
Medical error is the third-leading cause of death in the U.S., behind cancer and heart disease, suggests a May 3 Johns Hopkins report.
While some people assume that medical errors occur mostly in hospitals, in fact they reach far beyond. Sometimes recurring, dangerous errors are caused by massive system inefficiencies resulting in negligence. Because these system failures are enormous, amorphous and hard to pinpoint, they often go unacknowledged and unaddressed.
I know, because errors like this put my husband at risk.
If manufacturers, pharmacies and prescription drug plans continue their read-a-script, shrugged-shoulder, radio-silent brand of service, patients remain at risk.
In 2012, my husband became one of the 1 million people in the U.S. living with Parkinson’s disease. Over the next year we grappled with decisions around insurance, savings and income. We reconciled ourselves to the truth that our future was now forever uncertain. While his doctor is exemplary and each person wants to help, the health care system is failing to care for my husband’s health.
Before the diagnosis, we were naïve about the multitude of health care problems. When friends and family relayed stories of frustration, I thought somehow they were to blame. Now I know better.
Accustomed to Complexity
For 17 years on Wall Street, I have deciphered complicated multi-step processes for high-net-worth customers. I call and email and follow up and see things through to resolution.
And yet, I am overwhelmed and frustrated by the prescription drug system, the management of which has become a “second job” to my full-time career and that of my husband; he works as an ad agency writer. We average four hours a month; that’s over a full week lost each year. With 59 percent of American adults taking prescription drugs, according to the Journal of the American Medical Association (JAMA), and with the majority for chronic illnesses, this represents a potentially enormous productivity loss for the country.
We wonder how those with less education, less organization, and less persistence possibly succeed in dealing with their own prescriptions. What about those with less time, more compromised by their illness?
Not long ago, one of our drug manufacturers decided to switch from traditional pharmacy distribution channels, like Walgreens and CVS, to a mail-order pharmacy. While the change resulted in dramatic cost savings, there was no communication to the customer. Our trek to find this single point of distribution left us confused, stressed, panicked, frustrated and isolated.
First, we noticed the auto refill didn’t arrive. When we called Walgreens they said the drug was on back order. Over several days, I called every pharmacy in the area. They all said it was out of stock.
We counted my husband’s remaining pills. We calculated how many days we had to figure this out. When I finally spoke with the mail-order pharmacy I could sense their shrugged shoulders through the phone. They didn’t want to hear about our struggles. (We finally were able to get the prescription sent to us by overnight mail.)
Believe it or not, a few months later, the manufacturer changed the distribution system again. And again: no communication. This move brought me to tears, pleading with the new supplier to get my husband’s medication to him in time. Each day our anxiety grew as the pills dwindled.
Potentially Grave Consequences
After many calls, the supplier told me there was a problem transferring the active prescriptions from the old pharmacy. I begged the manager to do a complete audit of the system to identify every patient at risk. I tried to help her understand the gravity of the situation.
Abruptly stopping Parkinson’s medication has serious consequences. Patients can experience withdrawal (confusion, fever, severe muscle stiffness) and the return of debilitating Parkinson’s symptoms that can lead to falling, aspiration and even death. And like many drugs, beginning again requires gradually increasing the dose under a doctor’s supervision.
If manufacturers, pharmacies and prescription drug plans continue their read-a-script, shrugged-shoulder, radio-silent brand of service, patients remain at risk — and these companies will remain ripe for disruptive shifts, as well as major lawsuits.
This sliver of the health care system can be improved to alleviate the undue strain it puts on 140 million American adults taking prescription medication. It is not reasonable to expect patients to spend endless hours trying to secure their medications again and again.
Based on my own Wall Street experience, the action required is relatively simple: improve customer service. Look outside the health care industry for service models; look at Disney as an example. In a classic case study, Disney mapped the actual customer experience from its theme park parking lot entrance to the park gate and then identified ways to improve this small part of the system. Health care must do this for medication.
Health care consumers can help by raising their voices. Speak up by contacting advocacy groups (National Patient Safety Foundation and The Michael J. Fox Foundation for Parkinson’s Research are two I’ve found), elected officials, employer human resources representatives and your doctor.
Let them know every time the medication your doctor prescribed isn’t delivered to you, even if it seems like only a minor inconvenience. Health care companies, insurers and your doctor need to know.
Of the top three killers of Americans, medical error is the one we can all do something about, and failing to speak up would be the biggest mistake of all.
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