OxyContin pills arranged for a photo at a pharmacy in Montpelier, Vermont on February 19, 2013 (AP Photo/Toby Talbot, File).

When it comes to opioid litigation and related settlements, billions of dollars are at stake. Thousands of cases brought by states, cities, and the federal government seek recompense for the crises of addiction and overdose deaths. A landmark trial involving opioid distributors is underway in West Virginia; new multi-district litigation was created last week in California, while details of the bankruptcy settlement involving the notorious Purdue Pharma continue to unfold.

The interests of those who developed an addiction to opioid painkillers are represented in these cases. So are those of public medical centers trying to recoup the costs of caring for them. Even babies born dependent on opioids have representation.

But one crucial party is not at the table: people in pain whose lives have been upended by severe cuts in opioid prescribing. They, too, have been harmed in the crisis—or more precisely, by the response to it. It’s become much harder for those who are in pain to access opioids, which, for some, are the only medication that provides relief.

For instance, 68-year-old Carol Limahelu, a Stanford-educated, retired architect, was able to live fully with advanced Multiple Sclerosis while taking a prescribed opioid on a steady dose for ten years. The medication changed her life for the better. But when her doctor in Missoula, Montana retired, she couldn’t find another physician to prescribe the opioid she needed. Many doctors have simply abandoned prescribing the drugs entirely for fear of oversight or pressure from insurers. Without her medication, Carol has spent the last year in agony, in bed–needlessly. Her dearest wish is to attend her son’s wedding in California, which is impossible, not because of Covid, but because of unmanaged, incapacitating pain.

There’s no question that overly liberal prescribing of opioids once caused undeniable harm. Still, it’s time to recognize that the backlash against “pill mills” and the like has left patients who require prescribed opioids in chronic peril. The pendulum has swung too far.

Consider a 49-year-old mother of twins, Tinu Abayomi-Paul, who endures pain from Chronic Lymphocytic Leukemia. Restrictions intended to deter addiction in her home state of Texas mean that she must visit her pharmacy every week for her Tramadol, a mild opioid. While this may seem like only a modest restriction for dispensing opioids, it is no small feat for someone whose mobility is limited by severe pain.

For Abayomi-Paul, even when she gets there, she worries. When hauling herself in pain to the pharmacy, she’s faced delays or denials. Sometimes the pharmacist will fill her prescription; sometimes not. On each trip, she has to wait while doctors and pharmacists argue, as they have before, over whether she can get relief.

The burden for pain patients intensified after the Centers for Disease Control and Prevention issued guidelines on opioid prescribing in 2016—guidelines which policymakers rapidly translated into inflexible mandates. State and federal legislators, private and public payers, and major pharmacy chains all embraced policies to reduce opioid prescribing; more than 500 such laws and policies emerged between 2016 and 2018 alone.

As happens so often, the intentions may have been good, but the results are disastrous. In the rush to reduce overprescribing, we’ve wrongly neglected the people who do benefit from these medications. And as the pendulum on opioid prescribing has swung, too many in the healthcare industry and the media have bought into the idea that pain isn’t a real problem.

Just as the Sackler family once put “opioid crisis” in scare quotes to understate addiction risks in its press material; these days state and federal lawmakers, and health system and payer policies put “undertreatment of pain” in scare quotes to suggest that any acknowledgment of pain is simply an industry ruse. And just as Purdue Pharma once falsely claimed that opioids are safe for anyone with serious pain, too many today wrongly believe that they are effective for none.

As with much in life, the truth about painkillers is complicated. There are some circumstances in which opioids are the only medications that will manage chronic severe pain, a real and widespread public health problem. Chronic pain is the leading cause of disability in the U.S. Its under treatment ravages individuals, families, and society.

One in six Americans, or about 50 million persons, has daily or near-daily pain. Nearly 20 million suffer pain so extreme that it regularly prevents them from working or participating in everyday life. For comparison, around 2 million Americans suffer from addiction to an opioid, and that number includes those whose addiction began with heroin or illegal fentanyl.

Yet, despite its prevalence, pain is often brushed aside. Writers from Virginia Woolf to Elaine Scarry have observed the astonishing ability of those who do not live, day-to-day, with its debilitating consequences to question or disregard pain in others.

And some groups suffer from this disregard more than others: studies show that the pain of Blacks (such as Abayomi-Paul) and Latinos often rated as less severe by clinicians due to wrong ideas about racial differences; and women, who may make up 70 percent of people with chronic pain, are more likely to have their pain dismissed or disbelieved. These groups also face heightened barriers to medication.

Today, pain patients who do rely on prescribed opioids face dangerous opioid cessation practices by clinicians who fear increased oversight. Public health authorities have warned against forced or abrupt opioid tapering, which may actually increase a patient’s risk of drug overdose or suicide, in addition to destabilizing their health and lives, but the practice continues.

And if an opioid patient’s doctor retires or stops treating them like Limahelu’s did in Montana, it’s almost impossible to find a new one, even for routine primary care. More than 50 percent of primary care providers say that they will refuse to see a new patient who takes prescribed opioids, and 81 percent are reluctant to do so.

Stigma and shame about opioids are also limiting their use in patients with advanced cancer and those in hospice care at the end of life.

And as opioids are withdrawn, little is being offered in their place.

Some of the backlash facing patients who use prescribed opioids is due to broadly accepted misconceptions, like the failure to differentiate between dependence and addiction. Virtually all patients who take opioids long term develop dependence, which means that they suffer withdrawal if the drug is abruptly discontinued.

But addiction is not the same thing as dependence. Addiction is compulsive drug use that continues despite harm. Addiction to pain medication is a risk, but it’s not axiomatic. Fewer than 8 percent of those prescribed opioids become addicted, according to Nora Volkow, who directs the National Institute on Drug Abuse. And that number shrinks dramatically when risk factors, such as prior issues with drugs and alcohol or concurrent mental illness, are considered. Focusing on the risk factors for addiction rather than blunderbuss restrictions makes much more sense, yet a recent study shows that those at heightened risk still receive opioids at the same rate as those without.

Similarly, it’s fair to make big pharma pay for its role in the crisis of addiction and overdose deaths, and it’s sensible to encourage careful prescribing, but in doing so, it’s not okay to disable those in pain.

The bitter irony is that depriving medication from those who need it hasn’t stopped overdose deaths: as opioid prescribing fell 60 percent between 2011 and 2020, the overdose death rate doubled.

Many cite the “iron law of prohibition,” in which focus on supply without addressing demand results in the emergence of a more potent substitute, to explain the escalation in deaths which are now driven by illegally produced fentanyl, its potent analogs, heroin, and stimulants. Regardless, our policy solutions have yielded devastating and deadly results.

We need to find a sensible balance between yesterday’s reckless opioid prescribing and today’s cruel restrictions, and we also need to invest in better ways of treating pain. As negotiations unfold, some opioid settlements propose to allocate resources not just to individuals but to addiction prevention and treatment more generally. (This approach was taken in the tobacco settlements of the 90s.) But the settlement proposals must go a step further—and be expanded to include the treatment of pain. Pain and addiction are both parts of the pharmaceutical story in the US. Both must be addressed if we are to emerge from this crisis.

Kate M. Nicholson

Kate M. Nicholson is the executive director of the National Pain Advocacy Center (which takes no industry funding) and was an appointed member of the CDC’s Opioid Workgroup.