How the War on Drugs Is Hurting Chronic Pain Patients

When 58-year-old Zyp Czyk* had a serious mountain biking accident in June, she refused to go to the emergency room even though her injuries knocked her out cold and her husband pleaded for her to seek help.

Instead, Czyk slept for two days—contrary to the conventional wisdom of what you’re supposed to do after sustaining a head injury. Only then did she finally agree to go to an urgent care center, where she discovered she had broken her collarbone and some ribs and needed surgery.

Czyk isn’t afraid of doctors, hospitals, or pain medication, and she’s not opposed to Western medicine. In fact, she’s been taking Oxycontin for chronic pain for nearly two decades. And that’s the problem: She feared that if she went to the hospital she might be labeled a drug-seeker, which could lead to her doctor cutting off her opioid prescription, leaving her without the treatment that makes her life bearable.

Czyk is just one of the more than 100 million Americans with chronic pain caught in the latest drug war crossfire. These patients and their doctors are often targeted by federal agencies like the Centers for Disease Control (CDC) and the Drug Enforcement Agency (DEA) in an intensifying crackdown on painkillers that fall in the same class of drugs—opioids—as heroin. But these efforts are as misguided as most “supply-side” drug war initiatives, and the collateral damage tends to be excruciating.

Last week, the CDC released a report showing that the rate of heroin overdose deaths in America quadrupled between 2002 and 2013. In a press briefing, CDC director Thomas Friedman said that rising use of medical opioids “primed” Americans for heroin addiction and called for “an all-of-society response,” including a reduction in prescriptions and better law enforcement. Likewise, in its 2015 assessment of the threat from heroin, the DEA reported, “Increased demand for, and use of, heroin is being driven by both increasing availability of heroin in the US market and by some controlled prescription drug (CPD) abusers using heroin.”

You’d never know it from the official government line, but while the “opioid epidemic” is linked to increased use of pain medications, the overwhelming majority of addictions do not start with a prescription—and most opioid prescriptions do not cause addiction.

All of which is to say that chronic pain patients are bearing the brunt of yet another drug war blunder.

Like Czyk, those who genuinely need painkilling drugs are now subject to policies like random reports to the doctor’s office for pill counts, prescription limits, extra refill appointments, urine testing, and other restrictions that can become expensive and onerous. Worse, they are often made to stop taking drugs that help them. While she knew she risked her health by postponing care after her crash, Czyk tells me that she felt waiting offered less risk than being falsely labeled an “addict” and was “not as dangerous as losing my pain medications.”

Opioid addiction usually begins in the same place that all other addictions start: in the childhoods, traumas, mental illnesses, and genes of those affected.

Her fears are far from unrealistic given reports of pain doctors being arrested and charged with crimes resulting from so-called overprescribing, leaving their patients to seek emergency care. Chronic pain support groups are filled with horror stories about pharmacists refusing to fill prescriptions and physicians simply dropping patients or deciding that they no longer want to risk treating pain with opioids.
But according to a new study in the journal Addictive Behaviors, the greatest predictor of whether a person misuses opioids is not poor health—instead, it’s having used illegal drugs in the past year.

Opioid addiction usually begins in the same place that all other addictions start: in the childhoods, traumas, mental illnesses, and genes of those affected.

Drug warriors don’t like to tell this story. In the stereotypical account, addiction starts with an evil doctor—probably high on Big Pharma propaganda—hooking innocent patients. For example, when Massachusetts Governor Charlie Baker was inaugurated this January, he incorrectly described the experience of the parents of a young man who died of an overdose.

“After a routine medical procedure their 19-year-old son, Evan, was prescribed opiates for pain,” Baker said. “Slowly and unknowingly, he became addicted to them. When the prescription ended, he turned to heroin,”

In fact, Evan started taking drugs with his friends, who introduced him to pills the same way they did marijuana—no doctors were involved. It’s not clear what put him in the 10 to 20 percent of drug users who become addicted, but it definitely wasn’t pain treatment.

And Evan’s route to opioid addiction is by far the most common. Since the Substance Abuse and Mental Health Service Administration (SAMHSA) started collecting this data, it has always found that over 75 percent of people who misuse painkillers get them from friends, relatives, dealers, or other illicit sources—not physicians.

Data on people who start pain treatment yields the same conclusion: The vast majority don’t misuse their drugs.

Even among the most frequent users, less than a third see doctors to get their drugs.

And there’s more research supporting the idea that the vast majority of opioid addiction starts on the street. In 2014, a national study of nearly 136,000 emergency room patients admitted for overdoses containing opioids found that just under 13 percent had a chronic pain diagnosis. And a 2008 study, this one from an addiction-ravaged region in West Virginia, found that 78 percent of victims had a history of substance misuse and nearly two-thirds possessed prescription drugs that were not prescribed to them.

Looking at people treated for Oxycontin addiction alone, a study in the American Journal of Psychiatry found that the vast majority—78 percent—never had a legitimate prescription and a similar number reported cocaine use and previous treatment for substance abuse.

Unless you’re ready to believe that doctors can turn pain patients into coke fiends, the simpler explanation is that painkiller addiction hits people who are already abusing other drugs. These people know where to buy stuff like coke and heroin, unlike pain patients—a.k.a. your parents and grandparents—who tend to be unfamiliar with how street drug markets operate.

Data on people who start pain treatment yields the same conclusion: The vast majority don’t misuse their drugs. Here, Czyk’s case is typical. Formerly a computer systems administrator, she had suffered inexplicable pain since childhood. Eventually, she was diagnosed by specialists at Stanford with Ehlers Danlos Syndrome, a painful connective tissue disorder that often manifests in visible bruises. She says she has never misused her drugs, and even initially refused to take enough of them to effectively treat her pain.

In 1995, Czyk’s doctor suggested that she try a newly-introduced drug called Oxycontin. “I took it as prescribed,” she tells me. “I took as little I could as get away with.” She adds that her doctor finally sat her down and said she’d get more relief if she “took enough that it would actually work.”

Although opioids can make people sleepy, Czyk had the opposite experience. “I was able to work,” she says, “When I took the pills, my energy went up because the pain [had been] so tiring.” Ever since, she says she’s used it judiciously. While chronic pain patients may suffer withdrawal symptoms if they stop using a drug abruptly, this is the not same thing as addiction, which is defined by experts as compulsively using a drug in the face of negative consequences.

Clinical studies of pain patients without a history of heavy drug use find that less than 1 percent become addicted during treatment—as summarized by a stringent review by the respected Cochrane Collaboration. (In actual pain practice, researchers find addiction rates of up to 33 percent, but this is more likely due to poor screening for addiction history and to drug-seekers faking pain than to new cases, given the rest of the data out there.)

Dee Dee Stout, an addictions consultant and expert counselor, has been taking opioids for fibromyalgia and pain from a car accident for ten years. Recently, she was refused a refill due to complex regulations that neither doctor nor patient had been warned about. Consequently, she had to spend a weekend enduring pain and withdrawal symptoms like diarrhea and restlessness until her doctor was back in the game on Monday.

“I can’t begin to tell you how stressful it’s been,” she tells me, echoing the voices of other chronic pain patients who are often ignored in media coverage of the opioid “crisis” but appear in the comments en masse under most such articles.

If we really want to deal with opioid addiction, we have to face facts. Most cases don’t start at doctors’ offices. Instead, kids get drugs the way they always have: through friends and family. To do better, we need to stop tightening the screws on chronic pain patients and start looking at why so many young people are turning to the most dangerous class of drugs.

Mistreating patients doesn’t stop addiction; that requires compassionate care.

*Her blogger pseudonym

Maia Szalavitz will be a 2015/2016 Soros Justice Fellow and is author of the forthcoming book Unbroken Brain: A Revolutionary New Way of Understanding Addiction. Follow her on Twitter.