Report — From the April 2018 issue

The Pain Refugees

The forgotten victims of America’s opioid crisis

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It began with a loud pop. Though Austin Sell had suffered from severe back pain since childhood, on a clear autumn morning in 2011, not long after his twenty-first birthday, the pain became something much more frightening. He was chasing his younger brother through their mother’s yard in Great Falls, Montana, and his left foot landed in a crevice. His upper body buckled backward; there was a sound like “a bungee cord being snapped in two.” He could tell that it was bad, a kind of bad he had not experienced before. A few hours later, having tried heat and ice and Tylenol, Sell was sobbing and incapacitated; a piercing ache in his lower spine made it impossible to walk. A trip to the emergency room resulted in several morphine injections, a CT scan showing a slight disk bulge, and the assurance that he would be feeling better within four to six weeks.

Illustrations by John Ritter

Later that night, when his wife, Kelsey, who was pregnant with their second child, brought him home from the hospital, they hoped the worst was behind them. But it was just getting started. Soon the most innocuous movements were sending a shrill, lacerating sensation from his lower back into his groin, hips, and legs. “I was beside myself,” he told me. “The pain was out of control. I kept thinking, ‘Isn’t there something that can be done for this?’ ” So he proceeded again — and then again and again and again — to the emergency room. Instead of eliciting concern or further action, however, the return visits were met with annoyed suspicion. “I’m a big black guy with tattoos,” he said. “They accused me of exhibiting drug-seeking behavior.” Six weeks came and went.

It was not the first time Sell’s pain had provoked a skeptical response. His mother, Kathy Sell Mitchell, who raised Sell and his four siblings mostly on her own, recalls her hunched-over son confined to bed by a mysterious condition that struck randomly but persistently. It was just debilitating enough to cut short outings and playdates, but not to persuade his Medicaid-reimbursed pediatricians to take it seriously. No MRIs, no referrals to a pain clinic. He’s too young, they’d say. He probably has a low pain threshold. “The doctors would sort of blow us off — and I would just let them,” Mitchell said. “I wish I’d had the strength to say, ‘No, you really need to look into this.’ ” Instead, Mitchell did what little she could: with money she didn’t have, she paid for visits to a local chiropractor, gave her son ibuprofen and nightly back rubs, and drew him baths filled with Epsom salts and surrounded by small tea candles.

Now with a family of his own, Sell convinced himself that he needed to push through. The commission checks that he collected from Colonial Life and Accident Insurance Company, where he was employed as an agent, made up the bulk of the family’s income. The work required him to visit clients throughout Montana; he knew that these grueling hours in his old Crown Victoria were only aggravating his condition, but he had grown up poor, believing he would never earn more than minimum wage — this job was the key to a different future. A month and a half later, though, he was forced to go on unpaid medical leave, from which he never returned.

The pain became a corrosive substance, eating away at his career and his marriage. Those closest to him were mystified. “I couldn’t figure out why he was hurting so much,” Mitchell told me. “I know he didn’t understand it either.” Sell’s primary care physician was no less perplexed. He referred him to a neurologist, who in turn referred him to another specialist. Desperate, Sell pursued an exhausting ensemble of treatments. There were epidural steroid injections and medial branch blocks; there was acupuncture and yoga and guided meditation. There were physical therapists, herbal remedies, and over-the-counter medicines. Some of the treatments were excruciating and offered not even temporary relief. Others proved more effective but, not covered by his insurance, were prohibitively expensive. He shuttled from one provider to the next, confused by the contradictory guidance he was receiving, and not sure how much longer he could remain in such a state.

In early 2013, Sell was referred to Rod Lutes, a physician assistant at Benefis Pain Management Center, one of the few pain clinics in the region. By then, Sell had grown somewhat leery of medical providers, but it was obvious right away that Lutes was different. A sixty-nine-year-old Air Force veteran with a warm, easygoing demeanor and a bushy horseshoe mustache (“a real Montana guy,” as one of his patients put it), Lutes began by asking a series of probing questions not only about Sell’s physical symptoms but about his family, his emotional stability, and how the pain was affecting him as a husband and father. “For the first time,” Sell told me, “I felt like I had a voice, like I was validated.”

From Lutes, Sell also gained insight into the nature of chronic pain. He learned that, contrary to popular belief, chronic pain is not merely ordinary pain that persists longer than usual but a disease unto itself. He learned that it can be perplexing and unpredictable — that the pain can grow incapacitating long after a wound has healed or, most bafflingly, arise without any initial wound or tissue damage at all. He learned that many chronic pain cases can never be cured entirely; that he might be living with this condition for the rest of his life. And he learned, finally, that all this was more than just expertise gleaned from thirty-two years of practice: Lutes himself, it turned out, suffered from persistent pain resulting from an old pelvic injury. So he knew how isolating, how overpowering it could be, and he saw the task of alleviating pain as an almost sacred calling.

When the conversation turned to treatment options, Lutes proposed another round of physical therapy, discussed the pros and cons of additional epidural injections, and urged Sell to consider lifestyle changes such as getting more exercise, improving his diet, and quitting smoking. He also thought that an opioid analgesic could be worthwhile.

Sell was reluctant to go that route. Like most people, he had heard horror stories about prescription painkillers, and although the term “epidemic” wasn’t being widely used yet, he knew that opioids had surpassed methamphetamine as Montana’s leading cause of addiction. Besides, the narcotic medication he had already tried had left him feeling unpleasantly foggy and remote. But Lutes believed that a drug regimen, carefully overseen, could provide an affordable, relatively dependable source of relief. In the end, they settled on a daily dose of Effexor, an antidepressant used to treat neuropathic pain, and the opioid Opana, in both its short-acting and extended-release forms. As an added precaution, Lutes had Sell sign the clinic’s “pain contract,” a document stipulating that, among other things, he would submit to random urine and blood tests, bring his pill bottles to each appointment, and lock his medication in a secure location to keep it from being stolen.

Soon after he started on the regimen, Sell’s functionality improved dramatically, and he got a new job as a sales clerk at JCPenney. Kelsey gave birth to Malayeh, their third child, in the summer of 2014, and he was finally able to take an active role in his children’s lives again: playing on the floor with them, taking them to the park. In his spare time, with Lutes’s encouragement, he pursued his love of hip-hop, installing a home recording studio and performing in area clubs. And later, when his relationship with Kelsey deteriorated and he found himself in trouble with the law — there was an altercation with a man he claimed had threatened him — Lutes helped walk him through it. So inspired was he by Lutes that he enrolled in classes at Great Falls College: he wanted to offer care to other chronic pain sufferers by becoming a physician assistant himself.

Sell had been seeing Lutes for four years when, one morning in March of last year, he arrived at Benefis for a regular visit. After a long wait, he was joined in the examination room by a nurse practitioner whom he had never met. She informed him that Lutes was no longer with them. Sell’s initial thought, he told me, was that he had passed away. But in fact, Lutes had been fired. (Benefis would not discuss his case, citing employee confidentiality, and would not permit its current providers to comment on the care of individual patients.)

The nurse practitioner, Vilma Herrera, would now be overseeing Sell’s treatment. She said the first order of business was to reduce his medication — by 80 percent. The decrease was radically out of sync with standard practice: a gradual taper is recommended to avoid the agonizing, sometimes dangerous withdrawal symptoms that can result from sudden discontinuation of opioids. Herrera, however, did not acknowledge these risks. She asked no questions about Sell’s quality of life; there was no discussion of how he had been doing on the medication. It seemed, Sell told me later, that she had arrived with a prepared speech, one she had delivered to other patients, and that the details of his circumstances were unimportant.

Sell pleaded with her, explaining that with his wife having left the family and moved to Minnesota months earlier, he needed the medication in order to care for their three children on his own. But it was useless: the federal government, Herrera said, had imposed an upper “speed limit” on what clinics could prescribe.

And that was it. The appointment lasted about ten minutes.

Hardly a day goes by without another grim reminder of America’s addiction and overdose crisis. Teenagers dying on city buses and inside fast-food restaurants, parents collapsing unconscious at Little League games, cars careening across highway medians with passed-out drivers behind the wheel — these scenes have grown commonplace. Last June, overdose became the leading cause of death for Americans under the age of fifty. News reports accompanied that statistic with the oft-cited observation that drug fatalities today outnumber gun homicides and deaths from car crashes combined. Yet the epidemic, it has been suggested, is striking not only for its magnitude and banal horror but for its roots as well. A recent book titled Drug Dealer, MD succinctly captures the general view: this is the first public health catastrophe to have begun with prescription pads. As Chris Christie, who chaired the White House’s opioid commission, put it on Face the Nation: “We need people to understand that this crisis started not on a street corner somewhere. This crisis started in the doctors’ offices and hospitals of America.”

The story seems straightforward: Pressured, manipulated, or otherwise bought off by the pharmaceutical industry, medical providers got millions of patients hooked on pain pills. Those patients soon craved the high of cheaper (and deadlier) drugs, such as heroin. Now, in order to reverse this trend, the flow of narcotic painkillers must be stemmed at the source — that is, back in doctors’ offices and hospitals.

Elevated to the status of conventional wisdom by journalists and politicians, this account has come to define the nation’s response to the opioid crisis. The only problem, according to a growing group of experts, is that it is deeply misleading — not so much false as shot through with half-truths and a discomfort with ambiguity.

Stefan Kertesz, an addiction specialist and professor at the University of Alabama at Birmingham, has called attention to the dangers of this streamlined narrative, although he can understand why it would gain traction. “In a time of incredible tragedy,” he told me, “there’s a desire for something simple to latch onto as a way of explaining it. A story that has a clear-cut villain, with doctors as dupes and patients as innocent victims, is about as easy to sell as any story.” And this “pill-centric” account is convenient for public officials too. “They can announce these low-cost policies,” Kertesz added, “and say that they’re tackling the disaster head-on.”

Yet even the most basic elements of this disaster remain unclear. For while it’s true that the past three decades saw a staggering upsurge in the prescribing of opioid medication, this trend peaked in 2010 and has been declining since: high-dose prescriptions fell by 41 percent between 2010 and 2015. The question, then, is why overdose deaths continue to skyrocket, rising 37 percent over the same period — and whether restricting access to regulated drugs is actually pushing people toward more lethal, unregulated ones, such as fentanyl, heroin, and carfentanil, a synthetic opioid 10,000 times stronger than morphine.

1 It’s also forgotten that, for much of the twentieth century, doctors were discouraged from treating even terminally ill patients with opioid analgesics; the assumption was that alleviating pain was less important than avoiding addiction. But pioneers in the hospice and palliative care movement denounced such views, insisting that allowing a patient to suffer needlessly was unethical medical practice. For patient advocacy groups, this is a vital historical fact: before we had an addiction and overdose crisis, there was first the crisis of undertreated pain.

This is not to suggest that prescription pills no longer pose a threat; in 2016 they killed nearly 15,000 people. Even this statistic, however, needs qualifying. According to the National Survey on Drug Use and Health, 63 percent of all opioid misuse — behavior most likely to lead to overdose — originates not with a direct prescription but with pills obtained (or stolen) from friends, relatives, or dealers. Nor, for that matter, are the majority of fatalities labeled opioid overdoses attributable to opioids alone: a recent study found that they were frequently used in tandem with alcohol, cocaine, amphetamines, or tranquilizers. In short, it may be that to speak of an opioid epidemic risks obscuring the most pressing questions — the who, why, and with which substances — of what is actually taking place.1

The issue of opioid medication is often framed as a zero-sum dilemma. Do you relieve the pain? Or do you prevent addiction? But there is increasing evidence that the question is premised on a misconception: namely, that addiction is rampant, even inevitable, among patients who are prescribed opioids for pain on a long-term basis.

The confusion stems from a failure to distinguish between addiction and physical dependence. Scott Gottlieb, the Food and Drug Administration commissioner, sought to correct this “key misunderstanding” in a recent hearing before Congress. Physical dependence, he explained, means one’s body has come to rely on a drug in order to maintain function — leading to withdrawal symptoms if the medication is stopped.2 “Even a cancer patient requiring long-term treatment for the adequate treatment of metastatic pain develops a physical dependence to the opioid medication. That’s very different than being addicted,” he said. “Addiction requires the continued use of opioids despite harmful consequences. Addiction involves a psychological craving above and beyond a physical dependence. Someone who is physically dependent on opioids as a result of the treatment of pain but who is not craving more or harming themselves or others is not addicted.”

2 Both the National Institute on Drug Abuse and the latest edition of the Diagnostic and Statistical Manual of Mental Disorders support this view.

This is a crucial distinction. And disregarding it, Maia Szalavitz, a neuroscience journalist and the author of the book Unbroken Brain, told me, is causing harm to pain patients and those struggling with addiction alike: the former because the drugs they need are viewed as inherently suspect, the latter because recourse to medication-assisted therapy (now considered the gold standard in treating opioid use disorder) gets stigmatized as merely “feeding the addiction.”

What, then, are the hazards of prescribing narcotic medication to chronic pain sufferers? One risk is diversion: that an excess supply of pills will find its way into the hands of nonpatients, creating more opportunities for abuse and overdose. The other is addiction among patients themselves — and here the existing data, though alarming, is less dire than we have been led to expect. In a 2016 literature review in the New England Journal of Medicine, Nora Volkow and A. Thomas McLellan observed that among the approximately 9 to 11 million Americans prescribed opioids for chronic pain, “rates of carefully diagnosed addiction averaged less than 8 percent in published studies.” Such findings do not fit easily into the paradigm favored by media exposés. (In his recent New Yorker investigation of the OxyContin manufacturer Purdue Pharma, for example, Patrick Radden Keefe observed that many patients “grew so hooked on [the medication] that, between doses, they experienced debilitating withdrawal” — the mistaken implication being that this withdrawal, in and of itself, was a sign that they had turned into addicts.) To be sure, opioid analgesics, as Volkow and McLellan hasten to add, are not the panacea they were advertised to be. They are extremely powerful and potentially dangerous, and their efficacy in treating chronic pain is highly variable. Yet a hunger for quick solutions — and a neglect of the latest research on both addiction and overdose — has provoked a pendulum swing: one extreme, misguided set of practices seems to have been switched out for another.

As evidence of this tendency, patient advocates point to a widely publicized guideline issued by the Centers for Disease Control and Prevention in 2016. It suggested that doctors try nonnarcotic treatments first and prescribe opioids, if needed, for shorter durations. It also urged that opioid doses be kept to lower than the equivalent of ninety milligrams of morphine. This was contentious because of variation in how different people metabolize opioids, and thus the degree to which higher doses may be necessary. (Perhaps most fatefully, the directive was vague on the issue of how to care for patients already receiving doses above the ninety-milligram cap.) While it was explicitly intended for general practitioners, not pain specialists, and the CDC has said that the guideline was “not a rule, regulation, or law,” it was almost immediately adopted — “weaponized,” according to Stefan Kertesz — as precisely that.

3 These insurance companies, once responsible for incentivizing the prescription of inexpensive pills, are now, by and large, refusing to cover safer alternative drugs and therapies — leaving patients who have little money with few options when their opioid medication is withdrawn.

To date, twenty-four states have enacted legislation in an apparent response to this guideline, with several more expected to join them over the coming months. Medicare, Medicaid, and the country’s largest private insurers have followed suit.3 Pharmacies such as CVS have announced that they, too, are imposing limits on what they will dispense. A growing number of physicians, for their part, have decided that the legal and financial liabilities are too great and felt compelled to forcibly taper their high-dose patients — or simply stop seeing them altogether. Some have even given up their ability to write scripts for controlled substances. In recent years, the Drug Enforcement Administration — taking it upon itself to determine what counts as a “medically necessary” drug regimen — has accepted the surrender of more than 3,000 prescribing licenses and revoked another ninety-nine. Medical providers have been put on notice: if in doubt, don’t.

Nowhere are the perils of this simplistic, top-down approach more evident than in Great Falls. In the weeks after Rod Lutes was fired from Benefis, his patients found themselves abruptly cut off from the drugs that had made their lives livable. Men and women who had been stable for years on opioid medication, with no history of substance abuse or violations of their pain contracts, nevertheless saw their prescriptions suddenly tapered or stopped completely.

Lutes was as shocked by his dismissal as anybody. Although he had pushed back against pressure from Benefis administrators to impose an across-the-board dose reduction for those in his care, he never imagined that he could be fired for this resistance; to his mind, these were essential drugs, and taking them away from patients who needed them was tantamount to depriving diabetics of insulin. Yet amid the public backlash against opioids, Lutes told me, some of the clinic’s staff and management seemed less concerned with the welfare of their patients than with “covering their asses.” Now, with Lutes gone, a blanket dose policy could be enforced. Whatever their diagnoses, however devastating their ailments, patients realized that it made little difference. “I didn’t take it personally,” said Valerie Wilkerson, a sixty-three-year-old whose other treatments had included a failed spinal fusion surgery and countless injections, “because there was nothing personal about the way they handled me.”

A form letter was mailed. “Please be aware,” it read, “that arguing or complaining about changes in your prescriptions will not alter your clinician’s care plan.” Those who did complain, who insisted that they would no longer be able to work, to pay their bills, even, in some cases, to get out of bed without their medicine, were told that they were welcome to seek treatment elsewhere.

However, such treatment is less and less available. In 2016, Montana Public Radio ran a story about a group of “pain refugees,” as they called themselves, who were forced to travel as far as California to receive care. The Montana Board of Medical Examiners had begun a crackdown on doctors suspected of overprescribing; not long after, a bill intended to further tighten restrictions on pain pills was presented to the state legislature. For people already facing a dearth of options, this confirmed that in the name of public safety, their well-being had been deemed expendable.

When David Delbert Herron, a sixty-seven-year-old with unremitting back pain, burned down the house of a Benefis surgeon and then killed himself in April 2017, it was taken as a sign of things to come. “Great Falls & the surrounding areas has 1000+ long-term chronic pain patients who have been taken off their pain medications,” wrote ReAnn Rothwell, a local businesswoman and former Lutes patient, in the comments section of the story about Herron on the Great Falls Tribune website.

These are law-abiding people who only want some relief from their pain — to be able to live some kind of normal life. If they cannot, there are going to be problems like what happened here & more suicides. It is a sad sad thing.

Soon Benefis hired extra security guards. After some patients, attempting to procure evidence of what was taking place, took to surreptitiously recording their appointments, signs were posted around the clinic stating that photography and recording were prohibited. A number of Lutes’s patients knew one another, and as they compared notes, they discovered that their recent experiences with Benefis were uncannily alike. They banded together to form a closed Facebook group (Patients of Rod Lutes Unite), which grew to more than a hundred members. Long, detailed posts — about being made to feel like junkies, about the hostility, the mistrust they were encountering — quickly proliferated. One woman, a retired mail carrier, described what she was going through as torture and wondered whether she and her fellow patients were merely collateral damage in the government’s war on drugs. (Benefis administrators denied allegations of terminating patient care without cause or enforcing an upper limit on dosage levels. The pain center, they said, is built on a multidisciplinary, holistic model that tailors evidence-based treatment plans to an individual’s medical needs.)

On April 27, a month after his dose reduction, Sell posted to the group’s wall. “I’m so angry I’m in tears,” he wrote. “I’m so angry I can barely type this. I don’t understand how a human being can treat another human being this way.” He concluded: “I see no light at the end of this tunnel. I just can’t anymore. I’ve reached my breaking point.”

Driving over the 10th Avenue South bridge connecting I-15 to downtown Great Falls is like crossing a threshold: on one side lies the mythic Montana of sweeping plains and Rocky Mountain ridges; on the other, a working-class town scarred by the remains of industry; and underneath, the Missouri River. The town’s nickname, the Electric City — a tribute to the hydroelectric dams built on its waterfalls — attests to the lofty aspirations the place was founded on. For nearly a century, it seemed that promise had been fulfilled. Home to a major refinery for what was once America’s fourth-largest corporation, the Anaconda Copper Mining Company, Great Falls quickly established itself as a manufacturing and commercial hub, its prominence embodied by the 506-foot smokestack that came to define its skyline.

But the prosperous times didn’t last. When the Big Stack was dynamited in front of 40,000 disconsolate spectators in 1982, the refinery had already been closed for two years. Today, jobs are relatively easy to find; those paying a living wage, much less so. In the 2016 presidential election, this isolated seat of Cascade County went with the rest of the state, casting its lot with the candidate who said he would make it great again. In the meantime, the city’s economy is mostly fueled by its two largest employers: Malmstrom Air Force Base and Benefis Health System.

Nine weeks after Lutes was fired, a group of his former patients gathered on a Saturday in downtown Great Falls. Posters had been taped on the windows of local pharmacies and grocery stores: patient of pa lutes? the flyers read. no longer receiving proper care from benefis? do not despair!! together we can survive anything! there is always hope! In parentheses, above the group’s contact information, was written in much smaller print: “You do not need to burn anyone’s house down!”

The meeting was held at a cavernous mixed-use complex. A sign listed the occupants: Jumping Monkeys bounce house; a craft and scrapbooking pop-up shop; Pain Support Group. Following the sound of voices, I arrived at a room resembling a church fellowship hall — metal folding chairs, fluorescent lights, an incongruous little landscape painting — where, it turned out, a presentation on medical marijuana was under way. There were maybe thirty people in attendance. “We’re the lucky ones,” a woman whispered to me. “We’re the folks who can still get out of our houses if we need to.”

I spotted Sell near the back of the room and took a seat beside him. Tall and heavyset with bright-red glasses and a boyish face, he shifted uncomfortably in his chair, sweating profusely — an indication that his pain level at the moment was particularly intense. His decline had been rapid in the months since Lutes was fired. By the time I met Sell, he’d gone through a punishing withdrawal period: severe nausea, vomiting and diarrhea, chills, shaking. He had stopped attending classes, could no longer sleep or go to work, and found even the most mundane tasks, such as getting his kids dressed and fed and dropping them off at school, nearly impossible to carry out. Mitchell, his mother, told me that under Lutes’s care Sell had been able to have a life, to provide for his children. But when they withdrew his medication, she said, “Benefis took that away from him.”

Now we listened as the speaker — an earnest, gray-bearded man wearing hiking boots and a fleece pullover — extolled the analgesic properties of cannabis. (Montana is one of twenty-nine states that have legalized medical marijuana.) The majority of those gathered there, including Sell, were still patients at Benefis, and their most pressing concern seemed to be whether they could be fired from the clinic for trying it. Officially, as someone pointed out, the answer was no: the clinic’s policy simply stated that patients had to choose between medical cannabis and opioid therapy — they couldn’t do both. But another man objected; a friend of his, he said, had been off pain pills for months and yet had been mailed a letter of termination after THC showed up in his system. “They’ll fire us for whatever the hell they want to,” he said. “And we can’t do a thing about it.” He added: “You do realize that they’re looking for a reason to get rid of us, right?”

Everyone nodded. I’d heard this sentiment several times from the group’s members: a sense of Benefis as an inscrutable, capricious entity — and the patients as powerless in the face of it. Everyone had a story of being hung up on by receptionists, of receiving no response from the state medical board, of writing letters to the editor of the Tribune that went unacknowledged. They were, they felt, without recourse. Other doctors had been turning them away, unwilling to take on the burden of such “complicated” cases. “We’re trapped” is how Sell had put it. In a country where patients were referred to as clients and consumers, implying choice, the few who had left Benefis stood as warnings for the rest of them. There was nothing waiting on the other side.

During a break, clusters of conversation formed around a card table filled with bottles of water. I overheard Mark Ibsen, a Helena doctor in cowboy boots and a suede vest who had been forced to close his practice after being investigated for overprescribing by the state medical board, talking to a middle-aged woman. “Pain is a terrorist, and it’s terrorizing your body. It’s become an antenna for your grief.” But now, he told her, “you get to embark on a spiritual quest: What is your pain supposed to mean for you?” She stared at him. “I think I’m just screwed.”

Another woman, Tonya Maxwell, approached me. “Here, you tell them about this,” the forty-two-year-old said as she yanked down the top of her T-shirt. A ghastly scar extended from her collarbone down to her right breast. “A botched surgery.” She spat the words out. “I got a steel plate running from here to here.” Then she walked away. I watched her go, wondering how many scars, cumulatively, were in the room. I’d already seen a number of them. I’d been sent text messages with photos of colostomy bags and drainage tubes; one patient referred to herself as a “human pincushion” because of all the injections she’d received. Their bodies were written records, palimpsests of medical history. And those who lacked scars and surgical marks, like Sell, revealed their ordeals in other ways: slumped shoulders, averted eyes, a look of resignation. Their underlying physical ailments had long since been absorbed into a mutually reinforcing pattern of chronic illness, financial hardship, anger, dejection.

Even before experiencing the suspicion that comes with opioids — enduring the random urine tests, the skeptical pharmacists, the vigilance against drug-seeking behavior — these patients had inhabited a world of doubt. Some of them, despite decades of miserable pain, continued to occupy that murky zone of “medically unexplained symptoms”; others had been given a diagnosis (fibromyalgia, for example) that did little to quell distrust. Their bosses and co-workers were dubious of requests to take yet another sick day; disability boards were on guard against malingering; family members were tired of lending them money. There were accusations of laziness, of doing it for the attention, of looking for a handout. Then there was the clinical environment itself, and the lengths to which they’d gone to be taken seriously. They described it as a delicate balancing act. They needed to be deferential but not overly so, informed but not too informed, clear about what they were going through but not in a “whiny” manner. Following these unwritten rules could mean the difference between effective care and being left to fend for themselves.4

4 For people of color, like Sell, the prospect of untreated pain is even greater: according to one recent study, black patients are about half as likely to receive medication as their white counterparts, even if their complaints are identical.

As the afternoon wore on, one of the organizers tried to steer the agenda toward more practical matters. There was a plea for volunteers to fill organizational roles, and a lengthy discussion as to whether the group should require membership dues. There was also an update on the search for an attorney to take up their cause. So far, the news was bleak: pretty much every lawyer they contacted refused to touch the case (“They’re too scared to mess with Benefis”), and the one attorney willing to pursue it wanted a $5,000 retainer. If they could barely afford to rent the room they were sitting in, someone noted, how would they afford an attorney?

It was around this point that Rod Lutes got up to speak. With his wife, Debbie, he’d sneaked in earlier; unhurriedly, he’d gone aisle to aisle, dispensing bear hugs. He blended in easily among his former patients: jeans and a baggy sweatshirt, the mustache, a healthy paunch. They shopped at the same stores, ate at the same restaurants. Most significantly, they had relied on the same drugs to help them bear what otherwise felt unbearable.

He reassured them that although he was having trouble getting interviews, he would take all his patients on again as soon as he landed a new position. He told them his heart was breaking at what had happened to them, and he wished there were something more he could do. “But, folks,” he said, “you have my number. If you’re at the end of your rope, remember that I’m just a phone call away. You’re just too damned important to me.”

Chronic pain has been characterized as among the most misunderstood, misdiagnosed, and undertreated of illnesses. Long seen as merely a symptom of some underlying disorder (treat the wound or ailment, it was assumed, and the pain would eventually resolve), it was only in the early 1950s that pain medicine emerged as a specialized field. And it was even later that the fundamental distinction — the difference between ordinary, acute pain on the one hand, and chronic, intractable pain on the other — began coming into focus. Whereas acute pain acts as a protective agent, steering us away from danger and alerting us to injury, chronic pain serves no useful function. It’s why people can scream in agony when their skin is brushed with a feather, or why — the classic example — someone can experience discomfort in a limb that is no longer there. In The Pain Chronicles, Melanie Thernstrom depicts chronic pain as a “broken alarm that rings continuously, signaling only its own brokenness. It is as if a wire has been cut and the whole system begins to malfunction.”

Uniquely among potentially life-threatening conditions, chronic pain defies standard medical testing. There have been advances in technology, such as neuroimaging, but the holy grail of pain assessment and diagnosis — a device that would provide conclusive evidence of its presence and severity — has yet to be invented. In fact, existing at the intersection of physical sensation, cognition, and emotion (“an unpleasant sensory and emotional experience,” goes the widely used definition, “associated with actual or potential tissue damage or described in terms of such damage”), pain seems necessarily hostile to such proof. Tools like the pain scale were introduced to mitigate this difficulty, to help quantify the subjective, but in many medical circles they have become objects of derision. So everything hinges on our ability to express the pain, to give voice to it — and pain, of course, is notoriously hard to convey. “Whatever pain achieves,” writes Elaine Scarry, “it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language.” Hence the loneliness and isolation so commonly reported among patients suffering from this illness: the persistent pain of others, especially when it’s invisible, is tempting to deny.

A report published in 2011 by the National Academy of Medicine underscored chronic pain’s more quotidian costs. In addition to the estimated $560 billion to $635 billion lost per year to direct medical expenses and diminished labor productivity, the report drew attention to the long-term health consequences of leaving pain untreated. Severe depression and anxiety, immune deficiency, impaired sexual function, and increased risk of hypertension and kidney disease are among its potential byproducts. Studies have shown that prolonged pain, especially of the neuropathic variety, can actually hasten the aging process by causing the brain’s gray matter to atrophy at a more rapid pace. The results can range from memory loss to various psychiatric disorders. Nevertheless, pain research remains startlingly underfunded and undervalued. In American medical schools, the average number of teaching hours on pain is nine; in the average veterinarian curriculum, it’s forty-five.

Perhaps this explains the anachronistic belief, in medical and popular culture alike, that pain is essentially productive, that what doesn’t kill you makes you stronger. Thernstrom cites the views of nineteenth-century doctors who argued that the use of anesthesia during surgery or childbirth was contrary to nature, if not sinful. “I am against these satanic agencies,” declared a former president of the American Dental Association in 1872, “which prevent men from going through what God intended them to go through.” If few still subscribe to this notion of pain as divinely ordained, the idea that it is something that can, must, or ought to be endured remains pervasive.

“Get tough,” Judy Blunt’s father barks at the beginning of Breaking Clean, her memoir of growing up in Montana’s northern reaches. His injunction resonates; it can be heard in the proud way one of Lutes’s former patients, a thirty-nine-year-old mother of five whose spinal cord was ruined in a car accident, told me that her favorite song, her “anthem,” was the Brooks and Dunn hit “Cowgirls Don’t Cry” (“It’s gonna hurt every now and then / If you fall, get back on again”). So she made her excruciating, at times suffocating condition a private thing, eschewed counseling or therapy, and, taking the song’s message to heart, kept her intermittent desires to end her life entirely to herself.

The night after the patient meeting, my last in Great Falls, Sell invited me over to the house he shared with his mother and children. On the way, I stopped at a red light and noticed, looming above me, a billboard I’d passed several times that week. It showed a ponytailed Native American man holding a framed photograph of a teenage boy — his younger self, presumably — standing beside a smiley, elderly woman. end prescription drug abuse, it read. watch real stories from montana. The message was paid for by the Montana attorney general’s office.

When I rang the doorbell at Sell’s rental duplex, it took some time before he appeared, grimacing, greeting me with a feeble handshake. I followed him inside. Built in 1904, the clapboard home contained three tiny bedrooms but hardly any storage space, which explained the living room clutter: toys and laundry hampers and several makeshift wardrobes. Sell limped his way over to the sofa, rearranged an assortment of pillows for his back and legs, and gingerly lowered his bulky frame. He made room for me next to him; the kids played on the carpet across the room.

I mentioned the billboard, and asked whether he thought such messages were unnecessarily alarmist or overblown, as many in the pain advocacy forums had suggested.

“I don’t think so,” he replied. He had seen the ravages of addiction firsthand — relatives on his mother’s side of the family, friends who had struggled with heroin and crack cocaine. And there was truth, he said, to what people were saying about pain pills; until recently, it wasn’t hard to get your hands on them. In the waiting rooms of walk-in clinics and emergency rooms, he had seen men and women who appeared perfectly fine until their names were called, at which point they feigned a pained expression. Minutes later, they walked out with a prescription. He told me about Cody Evans, his sister’s ex-boyfriend, who, at nineteen, died after a Great Falls woman sold him six methadone pills for forty dollars; she was subsequently given a twenty-year sentence for negligent homicide. “So, no,” he said, “I wouldn’t deny that there’s a problem here.

“But can’t it be possible,” he added a moment later, “to tackle addiction and care for those who are in real pain? Can’t we do both? Why do you have to harm some people in order to help others?”

Marc Mentel, the chair of the Montana Medical Association’s Prescription Drug Abuse Task Force, voiced a similar thought when I spoke with him. In the name of saving lives, the Missoula-based physician said, “I worry that we may be throwing the baby out with the bathwater. But suffering is suffering.” Untreated pain and opioid addiction, he noted, have a great deal in common. They both tend to be accompanied (and exacerbated) by conditions such as depression and post-traumatic stress — and both are rampant in areas with the fewest resources to deal with them. He referred to it as a perfect storm of scarcity: a lack of access to addiction specialists, a lack of mental health services, and a lack of the knowledge and the wherewithal to effectively treat chronic pain. Throw in poverty and joblessness, and the vicious circle becomes apparent. As a society, we’ve found it easier to dismiss pain patients as addicts, and to regard addicts as criminals, than to confront the tenacity of these American maladies.

This neglect is continuing apace under the Trump Administration. In January, the attorney general, Jeff Sessions, announced an impending “surge” of DEA arrests targeting providers whose prescribing patterns seemed excessive. As with similar crackdowns in recent years, however, there was no mention of a plan to offer support or treatment to their patients. What would happen to them? “Part of the reason we got so enthusiastic about the prescribing of pills — not just opioids, but many others as well — was because we didn’t want to deal with complex human needs,” said Stefan Kertesz, the professor at the University of Alabama. “So is it any surprise that we’re now trying to get out of this crisis by controlling pills, instead of building systems of care that will attend to those needs?”

In Sell’s living room, I asked him what his immediate plans were. He had just been hired at Teriyaki Madness, a local fast-food restaurant, and he was nervous about standing at a hot grill for hours on end. But his family needed the money; Mitchell was already working three part-time jobs to help support them. He hoped, he told me now, that he could someday return to college. He hoped that becoming a physician assistant might still be in his future. He hoped a lot of things — and that, he felt, was exactly what he needed not to do.

“I think most people in the patient group, the majority of them, they have a false hope. They think that life is going to go back to what it used to be. But I don’t see that happening. I guess I’ve come to terms with the fact that this is what life is going to be like.”

“Which is what?” I asked.

“Which is that I’m not going to get the help I need. I’m not going to get treated the way that I was with Rod. Benefis is not going to change.” He told me that as in the months following his injury in 2011, he had begun experiencing the pain as a total, crushing presence. “It sounds crazy,” he said, “but I’ve almost started looking at it like it’s a real person — like there’s this abuser standing over me, tormenting me. It completely controls me.”

The very worst part, he said after a long pause, was seeing the toll his pain was taking on his children. He explained that Isaiah, his five-year-old, had been especially affected by his mom’s leaving, and a few mornings earlier, still half-asleep, had grown distraught. “Do you have any idea,” he asked, “what it’s like when your son needs you to comfort him, he needs you to pick him up, and all you can tell him is, ‘I’m so sorry, I just can’t right now’?”

Sell excused himself and stepped outside for a cigarette. From the couch, I glanced at him through the window. He was barely visible despite the porch light.

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’s most recent article for Harper’s Magazine, “A Prayer’s Chance,” appeared in the May 2017 issue.

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