Who Has a Right to Pain Relief?

“Pain has become our fifth vital sign.” Speaking last fall at a New Jersey symposium on pain management called “Do No Harm,” the chairman of emergency services at Hackensack University Medical Center said what his audience of doctors and nurses hardly needed to be told. We are all familiar with the medical routine: The thermometer beeps, the blood pressure gauge sighs, breaths and pulse are recorded—and then we’re asked, these days, how much it hurts on a scale of one to 10. Pain didn’t get there on its own. In fact, the speaker was borrowing a line from the American Pain Society, a patient-advocacy group whose research is supported by pharmaceutical companies. “In a certain way,” he confessed, “we have created our own monster.” 

The speaker was referring to the nationwide surge in prescription drug addiction, particularly opioid painkillers, which now kill nearly 17,000 Americans per year. That represents a four-fold increase over the past decade. In 2012, New Jersey saw roughly 800 opiate-related overdose deaths, according to the state medical examiner, nearly half of which involved heroin, a drug that has lately made a resurgence in the Northeast, particularly among young adults. Their stories usually begin with opioid painkillers prescribed for an injury or operation, shared by friends, or taken from the family medicine cabinet. Too many of their stories end alone, at home, with a needle in the arm, after years of cycling in and out of rehabilitation facilities, jails, and hospitals.

But the symposium called attention to a dilemma facing clinicians and American society at large—one that has unfolded in conference rooms, statehouses, and courts. The day’s roster of speakers, all men in suits, sat in the front row. In addition to the ER chief, the state medical examiner and another doctor, there were several current or former Drug Enforcement Administration officials, the head of the state’s Division of Consumer Affairs, a malpractice lawyer, the state’s first assistant attorney general, an adviser from the Centers for Disease Control and Prevention, and a representative from Actavis, a pharmaceutical company. The U.S. Attorney for New Jersey showed up as well, warning of society’s “cavalier” attitude toward prescription drugs and vowing to prosecute unscrupulous doctors. The only woman on the panel, a suburban mother whose young adult son died of a heroin overdose, sat toward the back of the room.

There was no mistaking the focus of the day: thorny legal issues rather than lessons in care. If the audience came expecting guidance in the clinical management of pain, they went away disappointed. Who gets to measure suffering? Who draws the line between legitimate relief and drug abuse? Was it the pharmaceutical rep, who told the group that “100 million Americans suffer from chronic pain” (an industry statistic often invoked, but seldom explained)? The state officials, who threatened to revoke physicians’ licenses? The doctors, who urged caution, or the lawyers, who warned of malpractice suits? Or was it the mother, who tearfully recounted her son’s progression from legal painkillers to heroin?

Physical pain is not merely a private struggle. Pain is also a problem of representation and trust, of rights and responsibilities, and a source of tension between individual and community. Perhaps not surprisingly, efforts to manage it give rise to a chronic American condition: an intimate, unknowable experience co-opted by special interests. Pain, in short, is political.

That is the argument Keith Wailoo, a Princeton historian of medicine and public policy scholar, makes in Pain: A Political History, which sets out to show “how the powerful question of other people’s pain became a recurring site for political battle.” Wailoo’s account begins with the post-World War II challenge of caring for disabled veterans, and proceeds through conflicts over entitlement programs, “fetal pain,” euthanasia, and the rise of OxyContin. Wailoo identifies pain as the impetus, and often proxy, for debates—played out in courtrooms as much as in doctors’ offices—about not just health care, but government regulation, business, constitutional rights, and the American character.

Our modern culture of pain management is a product of this history. So is our modern crisis of opiate addiction. Even 60 years ago, Wailoo writes, “the issues embedded in pain management were profound in their moral, fiscal, and civic implications.” For Eisenhower, the decision of how much public relief to devote to private pain— specifically, in military hospitals—was influenced by considerations of grit, sacrifice, and virtue. Eisenhower would “not allow mere sympathy to drive government expansion,” Wailoo writes; he signed the 1956 law creating Social Security Disability Insurance with more than a little ambivalence. During the following decade, the debate over pain broadened, as mortality from infectious diseases gave way to chronic, degenerative ailments. The shift reflected an affluent, aging society, and a workforce expanding fitfully to include women and African Americans. Courts embraced a liberal, subjective standard of “real” pain, rejecting the notion that discomfort was a fact of life; those who in earlier years might have been dismissed as malingerers were now guaranteed treatment and protection. Medicare and Medicaid were born, and a “bureaucracy of relief” grew throughout the 1960s and 1970s.

Wailoo dates the modern era of pain politics to Reagan, whose acolytes saw in the welfare state “a failed and overliberalized society taken in by subjective complaints of pain.” The time had come, they urged, for “a conservative restoration founded on objective criteria for measuring true need.” Wailoo makes the case that, in the 1980s, pain became “a wedge issue and a litmus test for one’s views on crime, fraud, and dependency writ large.” Disability rolls were slashed; judges and politicians became the arbiters of whose pain was real and whose pain mattered. The pain of the fetus and the pain of the taxpayer mattered most; the addict’s pain was suspect, the housewife’s pain imagined, the disabled worker’s pain symptomatic of a weak society, Wailoo writes.

The great irony, which Wailoo does not miss, is that deregulation and government retreat allowed the pharmaceutical industry to expand, virtually unchecked, to meet the demand for analgesia—in turn creating new clinical criteria for pain, new opportunities for treatment, and new markets for drugs. The pendulum swing was extreme, abetted by a growing sentiment in the medical community that doctors had been unduly constrained by the War on Drugs, and that a crisis of undertreated chronic pain was at hand. By the early 1990s, in the era of Bill “I feel your pain” Clinton, “the question of relief (granted or denied) was being reframed as a legal question of malpractice, as a moral question of medical duty, and as a political question of patients’ rights,” Wailoo writes.

Rush Limbaugh’s revelation, in 2003, that he was addicted to OxyContin “shed light on the exuberant drug market that regulatory reform had produced,” Wailoo writes. “[B]ut OxyContin’s rise also forced both liberals and conservatives to look closely at the world they had made—a marketplace that claimed to solve Americans’ problems far more efficiently and completely than government programs ever could, but one that also had the capacity for great harm.”

In 2009, 257 million painkiller prescriptions were dispensed in the U.S., according to a White House report. The CDC estimates that 12 million Americans abuse prescription painkillers, which are now prescribed for everything from minor surgery to end-stage cancer, as broader definitions of “chronic pain” have led to an expanded market for opioids. Of those 12 million, the CDC representative at the Hackensack symposium reported, a small but increasing number appear to be turning to heroin—a cheap, potent, and abundant alternative to legal narcotics. Between 2007 and 2012, the number of past-year reported heroin users in the U.S. nearly doubled, from 373,000 to 669,000, according to federal surveys.

Our healthcare system has not proved particularly adept at balancing the needs of an aging, aching population against the market forces of a booming pharmaceutical industry. The result is gaps in treatment, a glut of pills, and a landscape of addiction—the inevitable consequence of what Wailoo calls our “unquenchable appetite for relief.”

If that sounds like an echo of Reaganite scolding, Wailoo’s analysis suggests an unexpected social twist. Who would have predicted an uncanny parallel, in both political language and morbidity, between America’s “right to relief” pain culture and its tough-guy gun culture? Yet charges of “negligent marketing” leveled against drug companies in the last decade came on the heels of similar legal opposition to the marketing and sale of firearms. These challenges share an underlying logic: Unchecked access to pills enables drug abuse, and unchecked access to guns enables gun violence. Industry responses line up, too. Pain management specialists and pharmaceutical interests decry any regulation of analgesics as roadblocks in the way of due relief for ailing Americans, much as the gun lobby adamantly object to limits or controls as infringements on the right to bear arms. Manufacturers of guns and drugs alike argue that “bad guys”—criminals, the mentally ill, addicts—undermine the reputations of good products. But in both cases, it is the poor who suffer most, disproportionately afflicted by violence, addiction, and neglect.

Americans are simultaneously overmedicated and undertreated. Despite the promise of relief through pills and significant medical advances, effective and nuanced care for pain continues to prove elusive, and prohibitively expensive. While some suffer, others are overdosing at alarming rates. And society’s tolerance for addicts is about as generous as its tolerance for pain. The high school football player prescribed OxyContin for his neck injury is an object of sympathy; once hooked, he becomes an object of scorn.

Articulating a “right to relief” that amounts to more than mere access to pills is likely to mean taking care out of the courts. It surely entails understanding health care as a matter of more than insurance coverage. With the Affordable Care Act still contested in courts, beginning that difficult process seems remote, if not impossible. Nor is there any promise that pain, even if it could have been prevented, can always be assuaged. For Elaine Pozycki, the mother sitting in the back of that New Jersey conference room, the meaning of pain has evolved. Her experience began with her son’s injured shoulder and his three-month supply of OxyContin. While her son’s story ended with heroin, her painful journey continues. “The pain is unbearable,” she told the audience. “And yet it is born to be endured.”