How Did We Come to Abandon America’s Pain Patients?

July 15, 2019

Overdosesnot those involving prescription opioids, but of heroin and illicit fentanyl, often combined with benzodiazepinescontinue to go up. But opioid prescribing continues to go down. Pain patients are untreated and suffering. Pharmaceutical companies are being sued and settling. Law enforcement is cracking down on providers. And many physicians, caught in the middle, have stopped prescribing because they don’t want to get in trouble and possibly lose their livelihood.

This situation is continuing despite the Centers for Disease Control and Prevention (CDC) emphasizing in a commentary published this spring that their guideline on prescribing for chronic pain, released in 2017, is being misapplied. 

The CDC authors wrote in April:

Clinicians might universally stop prescribing opioids, even in situations in which the benefits might outweigh their risks. Such actions disregard messages emphasized in the guideline that clinicians should not dismiss patients from care, which can adversely affect patient safety, could represent patient abandonment, and can result in missed opportunities to provide potentially lifesaving information and treatment.

So what has gone so terribly wrong? Because it has.


The Victims

Ian Lewis, who lives in Ohio, having grown up in Tennessee, is 37 years old. He had his most recent surgery on July 8.

His pain started in middle school. He began suffering in seventh grade, but nobody believed that he was in pain. His serious congenital spine problems were discovered when he was 12 years old. He had two blown-out discs, 16 fractures, and a cut durum bleeding into the spinal cord.

Ian’s mother, Terri Lewis, PhD, who teaches for the Rehabilitation Institute at Southern Illinois University in Carbondale, has been his caretaker throughout. 

“Up to this point everybody had denied the pain that he was expressing,” said Lewis. He then got excellent care at Vanderbilt in Tennessee, she said, but in 2003 his pain increased. He had two more surgeries, but never healed. For 10 years, he got along on opioids, a “combination of legal and street,” said Lewis. “Cannabis was also pretty helpful, he discovered.”

The problem was the opioid crackdown. After it happened, medical providers  “went all around the block to try not to label this as chronic pain, to call it trouble sleeping, or anxiety, but what he was givenantipsychoticsdidn’t help,” said Lewis. “Why didn’t they label it as chronic pain?”

Ian had received nothing at all as a child, when nobody believed that he was in pain. “I can speculate it’s because we don’t recognize pain in kids,” said his mother.

The images below show the fractured Harrington rods that were removed from Ian’s back during his latest surgery, and his back after the operation. 


Photos courtesy of Terri Lewis


According to the National Institutes of Health, nearly 50 million American adults suffer chronic pain. They typically face onerous and invasive requirements to obtain repeat opioid prescriptions, and live with the constant threat of being cut off—if they can get them in the first place.

Unfortunately, there is no way to assess the number of patients who have been subject to opioid dose reduction of an informal nature, said Stefan Kertesz, MD, professor of medicine and addiction scientist at the University of Alabama at Birmingham School of Medicine. “Neither is there a there a formal survey to assess the number of patients who have been discontinued, either voluntarily or against their will.”

The situation is difficult because nobody can tell how large the problem is if no data is collected, and because a major policy chance is being enacted with no entities reporting outcomes, Kertesz told Filter. (This study came close in terms of looking at outcomes, but not overall prevalence.)

The suffering caused by denial of opioids sometimes becomes unbearable, and numerous suicides for this reason have been reported.

Gail Groves Scott, an opioid use disorder policy researcher,and doctoral student in health policy, told Filter about a relative of hers who killed herself. The relative had been a urologist, but had switched to prescribing buprenorphine. She developed a pain disorder and probably a substance use disorder as well, and was most likely going to lose her license.

“She was ashamed,” said Scott. “She didn’t have staff, and was probably really struggling financially.” She put fentanyl patches all over her body and died that way. 

As for her patients on buprenorphine, “They had nowhere to go, but luckily there were fewer than 20.” She was in Tennessee, where registration requirements deterred new clinics and resulted in a reduction of patient slots. 

In general, “Doctors are really nervous about taking a new patient who is on a controlled substance,” said Scott. Asked why, she listed concern about substance use disorder, concern about whether a patient’s previous doctor had been prescribing appropriately, and fear of oversight and potential sanctions. 


Why Is the CDC Being Misinterpreted?

Deborah Dowell, MD, MPH, chief medical officer at the CDC’s Injury Center, told Filter that the 2017 guideline was meant to help “primary care clinicians work with their patients to consider all safe and effective treatment options for pain management,” and that “CDC encourages clinicians to continue to use their clinical judgment, base treatment on what they know about their patients, maximize use of safe and effective non-opioid treatments, and consider the use of opioids only if their benefits are likely to outweigh their risks.”

Dowell also referred to the recent CDC commentary, noting that it highlighted “the misapplication of the CDC guideline” and raised “awareness about issues that could put patients at risk.”

Dowell went on to say that the guideline did not apply to anyone but primary care clinicians treating chronic pain for patients 18 and older. It was not intended, she said, for patients in cancer treatment, for example, patients with post-surgical pain, or patients with acute sickle cell crises. 

Yet the guideline has been appliedor misappliedto all of these groups.

What’s more, Dowell said, there was nothing in the guideline’s dosage recommendation that should have resulted in hard limits for cutting off opioids. The guideline states: “When opioids are started, clinicians should prescribe the lowest effective dosage. Clinicians should… avoid increasing dosage to ≥ 90 MME/day or carefully justify a decision to titrate dosage to >90 MME/day.” 

Yet this is what is happening. “High dose prescriptions, which overwhelmingly accrue to long-term recipients, have fallen 61 percent according to [pharmaceutical consulting company] IQVIA,” said Kertesz. 

The details of the CDC guideline are not objectionable. Yet neither is it particularly encouraging to doctors who prescribe opioids needed for pain.

Dowell noted that that 2017 guideline also does not support abrupt tapering or sudden discontinuation of opioids, which can result in severe withdrawal symptoms, leading some patients to “seek other sources of opioids.” In addition, she said, “policies that mandate hard limits conflict with the guideline’s emphasis on individualized assessment of the benefits and risks of opioids given the specific circumstances and unique needs of each patient.” 

Yet these policies are abundant, even prevalent. Abrupt tapering and discontinuation is happening, far too often. 

Dowell also noted that patients receiving medication-assisted treatment (with methadone or buprenorphine, both opioids) for opioid use disorder (OUD) do not fall under the guideline, which concerns only chronic pain, not OUD. In fact, the guideline recommends offering these medications to patients with OUD.

The details of the CDC guideline are not objectionable. Yet neither is it particularly encouraging to doctors who prescribe opioids needed for pain. And the guideline’s widespread misinterpretation gives reason to question whether it puts too little emphasis on the importance of opioid prescribing to relieve sufferingand too much on the possibility of opioid prescriptions leading to OUD.  

The CDC acknowledges the rarity of this latter scenario. When I asked Dowell how many patients who take opioids as prescribed actually develop OUD (as opposed to becoming physically dependent, which every long-term opioid user does), she replied in an email:  

“One [2014] study* found that, among patients prescribed opioids for pain, rates of opioid use disorder diagnosis ranged from 0.7% with lower-dose (≤36 MME) chronic therapy to 1.3% for medium dose chronic therapy to 6.1% with higher-dose (≥120 MME) chronic therapy (versus 0.004% with no opioids prescribed).”

So for addiction rates of 0.7 -6.1 percent across all doses, virtually all pain patients are now either suffering in untreated pain or under threat of it? How did this happen? 

“The guideline has been institutionalized to forcibly change patients’ care.” 

By issuing the recent comment, the CDC basically admitted that misapplication of its guideline has had a chilling effect on prescribing. But it’s also important to acknowledge the limits of the CDC’s influence.

The CDC doesn’t regulate doctors. After the guideline was released, many in the addiction field did not think doctors would reduce prescribing, as there was no enforcement behind it. 

It turned out, they were wrong. Still, scaremongering politicians’ pronouncements, law enforcement crackdowns, Pharma lawsuits and relentless media “opioid epidemic” coverage have all played their part.

Kertesz supported the initial CDC guideline, but became concerned about its interpretation. “Over the last three years, I have seen patients harmed,” he told Filter. “I have written repeatedly about the fact that the CDC’s guideline was good but was misapplied. Broadly speaking, it was a reasonable document, but it has been institutionalized to forcibly change patients’ care.” 

This March, he, along with other experts and Human Rights Watch, submitted a letter making this point to the CDC. It caused distress at the agency, which did not believe it had caused the denial of pain medication. 

“I asked them how difficult would it be for the CDC to issue a defense of the guideline, with a little clarification?” Kertesz said. That day, a CDC official told him it was very difficult. But on April 24, in the New England Journal of Medicine, that clarification came. 

“That’s courage in action,” said Kertesz, who is somewhat of a hero to pain patients across the country. 


Why Physicians Are Frightened

Regardless of what the CDC says, it’s doctors who do the prescribingand they’re the ones who don’t want to do it any more.

Scott, now an opioid use disorder policy researcher, previously worked as a pharmaceutical representative, selling many drugs for addiction and pain. Even thenwell before the CDC guidelineshe saw doctors’ hesitancy to prescribe.

“Doctors were becoming more aware,” she said. “We know that there was overprescribing. There was also an increase in electronic health records and prescription drug monitoring programs, which made everyone more aware of who was an outlier. This impacted physicians’ comfort level in prescribing opioids.

“They say that they want to know who has addiction and who doesn’t, but the real reason is they are terrified, of administrative and legal problems.”

“Nobody saw what was going to happen,” Mark A. Weiner, MD, representing the American Society of Addiction Medicine, told Filter. “Pain doctors are coming to me and my colleagues to answer the question of who’s who”meaning which patients on opioids for pain have pain, and which are addicted.

This has been going on for years, according to Weiner. “They say that they want to know who has addiction and who doesn’t, but the real reason is they are terrified, of administrative and legal problems.” Weiner supports law enforcement, but “do they think everybody’s an addict?” He believes that prescription drug monitoring programs can helpbut only if they are used properly. Used improperly, they just contribute to the problem.

Like many, Weiner cites the “pendulum”one of his presentation slides has a moving pendulum in it. “On one side is 1985-2000, where people said we need to treat all the pain we can,” he said. “Then the pendulum started moving, through the middle partthe rational approach.”

But now, it’s swung too far to the other side. Weiner helps move it back toward the middle by reassuring physicians who provide palliative care for cancer and hospice that “it’s okay” to prescribe opioids. “I’m an addiction doctor, not a pain doctor, so I they listen,” he said. “But I often hear they’re not happy with it.” That’s because it’s their livelihoods on the line.

“The focus on prescribing is not unimportant,” said Richard Saitz, MD, professor at Boston University Schools of Medicine and Public Health. “Yes, exposure to opioids is a factor in developing opioid addiction, but it isn’t the sole factor, and focusing on prescribing of opioids is a bit like looking for the keys under the lamppost because that is where the light is.”

Rather, he told Filter, it’s important to focus on appropriate prescribing for the individual. Of course, nobody would argue with that medically. “But instead, PDMPs and insurance regulations focus on what is easily countable and set population goals to reduce and eliminate. As a result clinicians want less and less to do with opioid prescribing, even for acute pain.”

What the CDC guideline did, said Saitz, was give clinicians who were already uncomfortable prescribing opioids back-up to just taper or not prescribe. 


Pharma Lawsuits’ Chilling Effects on Prescribing

A string of high-profile lawsuits against opioid manufacturersthe first in Chicago in 2016, the most recent in Oklahomahave further impacted prescribing by adding to physicians’ discomfort, although the chill started before then. State medical boards and the American Medical Association, too, seem more concerned about overprescribing than patient abandonment.

The lawsuits definitely had a chilling effect on Pharma itself, and on the organizations Pharma supported. As for cancer and other conditions, pain patient advocacy often comes from the treatment field.

Loss of Pharma funding for pain advocacy groups has been significant. Lawsuits have alleged that Pharma used organizations like the American Pain Society, which is now disbanding, to promote their products.

In 2016, about the same time that Pharma companies started getting sued, they cut off the American Pain Society and others, said Bob Twillman, PhD, former executive director of the Academy of Integrative Pain Management and current clinical associate professor at the Department of Psychiatry, University of Kansas Medical Center. They no longer took booths at conferences. And they started reserving their cash for settlements. “Pain is still a valid specialty, but now, everybody’s too scared to prescribe.”

They were suing companies for dishonestly marketing products that relieved pain, so it wasn’t convenient to acknowledge the value of these products.

A combination of finance and politics motivates the lawsuits, Twillman told Filter. “There’s money there.” There is the money that Oklahoma, for example, will receive—but also a motive for prosecutors who may want to get elected to higher office.

But Kertesz said that the prosecutors are doing their job. “They have one goal, which is to secure as much money as possible, not to worry about people who aren’t getting pain medication,” he said. “That’s not their department.”

And Kertesz, like Scott, is skeptical of all Pharma marketing. “I view it as a public menace,” he said. “I don’t think it’s wrong to get money out of the pharmaceutical companies.” But he does think the money should go to treating people. “I have a concern about significant portions of the settlement money going to pay scholars,” he said, referring to academic appointments.

“The other thing that concerned me about the attorneys general,” Kertesz said, “is they seem to want to preserve a pristine, simple, one-directional narrative, and anything that acknowledged the value of pain care was a threat to the lawsuit.”

So they left that part out. They were suing companies for dishonestly marketing products that relieved pain, so it wasn’t convenient to acknowledge the value of these products. And that directly hurt pain patients.

None of this is black-and-white. But the attempt to make it so has demonized pharmaceutical companies, prescribers and patients.

“Callous paternalism will be a poor substitute for care, resulting in promoting harm, suffering and a contempt for the healthcare delivery system.”

“There is no question that prescription opioids have been mis-prescribed and over prescribed,” H. Westley Clark, MD, JD, dean’s executive professor with Santa Clara University, told Filter. “There is no question that a few opioid prescribers devolved into being quasi-drug dealers. There is also no question that some patients have developed opioid use disorders as a result of imprudent opioid prescriptions.”

“However, in our zeal to curtail the excessive prescribing of opioids for the treatment of pain, we have trampled on the clinical needs of those individuals who have benefited from the use of opioids for the treatment of pain, said Clark, a former director of the Center for Substance Abuse Treatment at the federal Substance Abuse and Mental Health Services Administration.

“Those living with chronic non-cancer pain need to be heard,” he continued. “Their opinions need to a part of the dialogue for treatment. Those experiencing intractable pain are stakeholders in the discussion about the appropriate treatment of pain, but their opinions have been dismissed and their input trivialized. It is time to return to a rational approach to pain management, an approach that takes into consideration of input of those who suffer from pain, making sure that they are a part of the treatment team.”

“Otherwise,” he concluded, “callous paternalism will be a poor substitute for care, resulting in promoting harm, suffering and a contempt for the healthcare delivery system.”


Moving the Pendulum

“I certainly see liberal prescribing as playing a role,” said Kate Nicholson, a civil rights attorney who advocates for pain patients, of the overdose crisis. “I think people can become addicted, of course.” 

Nicholson, who has a pain history of her own, and does most of her advocacy work for free, cites the National Institute on Drug Abuse/CDC incidence range of 0.7 to 6.1 percent.

Andrew Kolodny, MD, is co-director of Opioid Policy Research at the Heller School for Social Policy and Management at Brandeis University and a leading advocate for much stricter controls on opioid prescribing. He did not want to be quoted in this article but his testimony was instrumental in the Oklahoma lawsuit.

Rather than the NIDA-CDC figures, Kolodny instead uses a cross-sectional OUD prevalence figure, which includes people who had a history of misuse and in general were not well-screened before being prescribed opioids, said Nicholson. One article Kolodny cites gives figures of 3.5 percent for severe OUD symptoms and 58.7 percent for “no or few symptoms.”

“What I find difficult is that the treatment of pain is being framed as responsible for spawning a crisis.”

“We know that most who misuse did not receive medications directly from a doctor and already had a developed history of using other strong substances,” Nicholson said. “But, sure, some people undoubtedly got hurt from liberal prescribing. What we need is a return to nuance. What I find difficult is that the treatment of pain is being framed as responsible for spawning a crisis—and so patients in pain are beleaguered and disregarded.”

Amid the suffering, there have been rays of hope. The CDC’s April comment was one of them. And in New Hampshire this month, one physician was reprimanded for cutting back on a patient’s painkillers.

Pain patientsfor all the stigma, lack of funding and other obstacles they faceare continuing to speak out. If we want the pendulum to swing back to somewhere rational, we have to hear them.


* Edlund MJ, Martin BC, Russo JE, DeVries A, Braden JB, Sullivan MD. The role of opioid prescription in incident opioid abuse and dependence among individuals with chronic noncancer pain: the role of opioid prescription. Clin J Pain 2014;30:557–64.

Top photo by Ryan Park on Unsplash

The author wishes to dedicate this piece to “all of the physicians who bravely treat pain patients with opioids, and to the patients who have been suffering through this nightmare.”

Alison Knopf

Alison has written about substance use for more than 30 years. She has also written for many years about medical coding. A freelance writer, she is also the editor of Alcoholism & Drug Abuse Weekly, and managing editor of Child & Adolescent Psychopharmacology Update and Child & Adolescent Behavior Letter—all published by WILEY. She also writes for Addiction Treatment Forum.

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