Do Doctors Care?

By Katie Burge, Guest Columnist

Tell me... exactly when did it become acceptable for physicians to not only harm, but to actually contribute to a patient's demise by denying adequate, necessary medical care? 

I'm referring to the rising death rate among chronic pain patients, whose doctors have yielded to political pressure and reduced their patients’ doses of pain medication to the point that they are virtually useless or refused to continue prescribing pain medication at all -- regardless of diagnosis or need -- because they fear regulatory action if they continue treating pain with opioids.  

Am I missing something? Under the Hippocratic Oath, aren't physicians supposed to strive to do no harm?  Or should we just start calling it the Hypocritical Oath when it comes to people in pain?

You might think that denying opioids to folks can only be a positive thing, but for those of us who suffer from severe, round-the-clock pain that only responds to opioids, this scenario is a nightmare.  Losing access to the only thing that lessens your pain can feel like a death sentence. And in some cases, it is.

Being forcibly tapered off opioids and then having to cope with the full brunt of your pain causes extreme stress, which can lead to heart attack and stroke.  Even worse, it causes some patients to lose hope of ever attaining help and commit suicide.

This almost happened to me last year. The really shocking thing is when I told a couple of my doctors that I was becoming increasingly suicidal because of pain, they just ignored me.

I guess they felt like if they acknowledged the reasons for my depression, they might have to address my pain. That is unacceptable to many physicians nowadays. I call this the "Ostrich" School of Medicine — where the doctors bury their heads in the sand whenever the topic of chronic pain comes up.

Many doctors have become so desensitized to pain and suffering that they seem to believe they're absolved of any responsibility when presented with a patient whose chronic pain is so severe that it only responds to opioids. They'll fall all over themselves trying to get away from us.

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My longtime family doctor refuses to even discuss my chronic pain. And when pain management specialists see the catalog of all my conditions, they visibly cringe. It’s as though I make them feel threatened, when the real threat comes from bumbling bureaucrats attempting to prove that they aren't completely impotent when it comes to dealing with the opioid epidemic.

A major truth about the opioid epidemic is that these bureaucrats can't do a damn thing about recreational drug use, but they want their constituents to believe they can. So in a lame attempt at proving their political prowess, they put the squeeze on pain management physicians and blame vulnerable pain patients for other people's opioid abuse.

What really makes my jaw drop in astonishment is the fact that most doctors simply kowtow to this bureaucratic lunacy without even trying to advocate for their patients or their own right to treat patients to the full extent of their education and experience. Doctors should never be put in the position of having to choose between incarceration and providing compassionate medical care.

There aren't many courageous physicians left who will help somebody like me.  I did eventually find one who gives me about half the medication I need to get through a month and be able to function. This enabled me to survive my “suicidal” level of pain, but I wouldn't actually call it living. 

My round-the-clock pain is being treated with a short-acting opioid that I'm only allowed to take once every 8 hours, because the doctor says he's not "allowed" to prescribed the long-acting, time released opioids anymore. These extended relief medications provide much better, more even relief -- often at a lower dose than the immediate release, short-acting opioids.

My current drug regimen creates kind of an evil roller coaster effect, where I'm okay for 3 or 4 hours and then the pain spikes for the next 4 hours until I can take another dose. And then the roller coaster takes off all over again.

Over the past 20 years, I've tried every traditional and alternative treatment known to medical science. Some have been beneficial and some have not, but I've learned what is safe and effective for me. I just wish my doctor would take my word for it. I know I'll never be pain free and surgeons say they're unable to "fix" me, so pain management is the only option I have left.

I am alive today due to a combination of God's grace and the adrenaline created by a combination of righteous indignation and an intense passion to help other pain patients and educate the public about chronic pain.

If you are a pain patient or you love a pain patient, please speak up and be counted if you're not getting the treatment you deserve. Never give up!

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Katie Burge lives in Mississippi. Katie has degenerative disc disease, spinal stenosis, spondylolisthesis, failed back syndrome, stenosis, osteoarthritis and fibromyalgia. 

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org. 

The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Mother Who Lost Son to OxyContin Vindicated by Purdue Settlement

By Mark Kreidler, Kaiser Health News

In the 15 years since she lost her son to a single OxyContin pill, Barbara Van Rooyan has had but one up-close look at the people representing the company that made it.

It was in a small courthouse in Abingdon, Va., where Van Rooyan and other relatives of OxyContin victims gathered for a sentencing hearing in 2007. Three executives of Purdue Pharma had pleaded guilty to federal charges related to their misbranding and marketing of the powerful opioid. The company had pleaded guilty as well.

Van Rooyan and the others in her group spoke during the sentencing, giving voice to their grief and their pain. They wanted the executives sent to jail for knowingly expanding an opioid crisis fast engulfing the country.

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Instead, Purdue paid fines totaling $634 million. The executives served no time. The company was allowed to continue aggressively marketing its product, and the following year, sales of OxyContin reached $2 billion.

From 1999 to 2017, more than 700,000 people in the U.S. died of drug overdoses, according to the Centers for Disease Control and Prevention. In 2017, nearly 68% of the more than 70,000 recorded overdose deaths involved opioids, mostly illicit opioids such as fentanyl and heroin.

“I never really thought a whole lot about evil before this all happened,” Van Rooyan said recently, seated on a couch in the living room of her Irvine, Calif., home. “But to see this kind of malevolence or disregard for human life — I don’t know what else to call it but evil.”

The outcome in that Virginia courthouse was a far cry from last week’s news of a tentative mass settlement of many of the 2,000-plus lawsuits against the company, which could total upward of $12 billion and result in Purdue’s dissolution.

The potential settlement amount would include $3 billion from the Sackler family, owners of Purdue, whose fortune is estimated at $13 billion. The family has amassed that money over the past two decades, largely by selling OxyContin, an opioid painkiller.

‘The Lid Is Off’

Van Rooyan’s Purdue experience is a story of deception, sadness and frustration — yet when she tells it now, she emits a surprising spark of energy. That’s because Van Rooyan, part of the unlikely group of citizens who repeatedly took flailing swings at Purdue Pharma, is watching the giant fall.

Van Rooyan, who has studied the cases against Purdue closely, sees the paradox in the proffered settlement: Much of the payout would be financed by profits from the continued sale of OxyContin, under a new company that would be formed following a Chapter 11 bankruptcy.

But in some regard, she said, Purdue Pharma’s complicity in the opioid crisis has finally emerged into the general public’s view. “The world really knows now. They get it,” she said. “The lid is off, and all this stuff is bubbling out.”

That wasn’t the case on the night of July 4, 2004, when Van Rooyan and her husband, Kirk, got the call that changed their world. Barbara, then a professor of counseling at Folsom Lake College near Sacramento, was told that her son, Patrick Stewart, lay in a San Diego hospital, in a medically induced coma from which he was unlikely to emerge.

Patrick, a graduate of Oak Ridge High School in El Dorado Hills, Calif., and San Diego State University, died at age 24.

His friends told Barbara they had attended an Independence Day party at which someone offered her son an OxyContin pill, telling him it “was kind of like a muscle relaxant and it was FDA approved, so it was safe,” she said. Patrick, who had also consumed a couple of beers, was opioid intolerant and suffered respiratory failure in his sleep.

Barbara Van Rooyan holds picture of her son, Kirk

Barbara Van Rooyan holds picture of her son, Kirk

“At the time,” Van Rooyan said, “all I knew about Oxy was that Rush Limbaugh had been addicted to it.”

She was about to learn a lot more.

OxyContin Abuse

Van Rooyan channeled her grief through intense research into Oxy’s vast potential for damage despite the company’s sales pitches to the contrary. A slow-release pain treatment with a heavy dose of the narcotic oxycodone, it could be easily crushed or dissolved for a more intense and addictive high. Rampant abuse already had begun to be reported, particularly in the Appalachian area, author Beth Macy wrote in her national bestseller “Dopesick.”

Later in 2004, Van Rooyan found Ed Bisch, a Philadelphia man who had begun a website to expose Oxy abuse in the wake of his teenage son’s death. The following year, Van Rooyan and her husband, a plastic surgeon, petitioned the Food and Drug Administration to require that OxyContin be made more abuse-resistant, and that its use be strictly limited to severe pain.

“This was an exhausting process, which she and Kirk did as a labor of love to try to save others,” Bisch recalled.

Van Rooyan became the California arm of a grassroots movement known as RAPP — Relatives Against Purdue Pharma. The group, originally just four in number, protested at physician meetings funded by pharmaceutical companies and testified before Congress. Van Rooyan enlisted the help of U.S. Sen. Dianne Feinstein (D-Calif.), who wrote the FDA on her behalf and later sent Van Rooyan a letter of commendation.

But most members of Congress did not reply to Van Rooyan’s letters, she said. The FDA said its review needed more time — which turned out to be eight years. By then, Purdue already had reformulated OxyContin to make it more abuse resistant and to renew its patent, but the FDA declined to restrict its use to managing severe pain.

Van Rooyan pressed on, but for a long while, the opioid crisis felt to her like a topic hiding in plain sight. And fighting Purdue while still grieving the loss of son Patrick was taking a toll.

“Her determination was tireless,” Bisch said, “but eventually the frustration burned us out.”

And then came the turn.

A rash of high-profile opioid overdoses and deaths, from actor Heath Ledger to Tom Petty to Prince, put the topic squarely in the public eye — and 15 years after the death of Van Rooyan’s son, Purdue Pharma and other drugmakers were suddenly on the run.

(Editor’s note: Ledger, Petty and Prince all died from a lethal mix of opioids and other drugs that were apparently obtained on the street.)

Wants Purdue Settlement Spent on Treatment

Van Rooyan tracks every development related to Purdue, including a lawsuit in New York that alleges members of the Sackler family have been offloading their fortunes into private or offshore accounts to shield them from a settlement.

But she’s not out for vengeance. Her goals have changed.

“Do I want the records to be public? Do I want these people to have their business shut down? Yes, I do,” she said. “But more than vindictiveness, I want that money of theirs to go to treatment and rehab. If that happens, something good can come out of it.”

If she has a regret, it is that the case in Virginia ended in 2007 with no more than a fine. “If that result had been different — if people had gone to jail — it could have changed the trajectory of this,” she said.

Ana Venegas for KHN

Ana Venegas for KHN

But momentum finally appears to be gathering, and Van Rooyan finds herself identified as one of the trailblazers of the anti-OxyContin movement. She spends little time dwelling on that. Instead, she quotes her younger son, Andrew, who told her, “We didn’t want any of this — this is just the hand we were dealt. We need to play the cards the best we can.”

“She’s just a really strong person,” said Kirk Van Rooyan, who has been with Barbara throughout the ordeal, though he is not Patrick’s biological father. “There have been times when I’d think to myself, ‘How would I be doing if I were in her shoes?’ And the answer usually is, ‘Not as well as she’s doing.’”

Van Rooyan, a longtime artist, now spends much of her time volunteering with veterans in Orange County, Calif., helping them get back into the workforce and using art therapy to help them express themselves.

The art is special to Van Rooyan, she said, because it is part of what saved her in the aftermath of her son’s death.

“Patrick was the one who suggested I take my first class,” she said. After a few delays, she finally enrolled. It was about a month before that Fourth of July in 2004.

Kaiser Health News is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation, which is not affiliated with Kaiser Permanente.

Stop Demonizing the ‘Holy Trinity’     

Lynn Kivell Ashcraft, Guest Columnist    

If we are to have any hope of a rational, scientific discussion about the issues involved in both pain management and addiction treatment, we need to end patient shaming and the use of sensational language that has no basis in clinical practice.

First on my list is to stop using the term “Holy Trinity” when referring to the use of multiple medication classes to manage pain. It is a sensational propagandizing use of terminology that has no place in any meaningful clinical discussion.

Holy Trinity was a term coined by law enforcement when discussing the behavior of addicts. The original Holy Trinity – the so-called “Houston Cocktail” -- referred to the simultaneous ingestion of the short acting drugs hydrocodone (Vicodin), alprazolam (Xanax) and carisoprodol (Soma) by addicts. Other combinations of opioids, muscle relaxants and anti-anxiety drugs such as benzodiazepines are also used.

“The cocktail is commonly known on the black market as the ‘holy trinity’ and is particularly sought-after by addicts, but is also particularly dangerous,” is how the DEA describes the drugs in criminal complaints, search warrants and training guides.  

SOURCE: DEA TRAINING GUIDE

SOURCE: DEA TRAINING GUIDE

Taken together, the three drugs can be risky and cause respiratory depression, overdose and death. But when used under medical supervision, they enable individuals with painful and disabling conditions to improve their quality of life and restore bodily functions.

Holy Trinity was never used originally to refer to any medication combination prescribed by physicians caring for pain patients. But with the advent of the opioid crisis, the term is being used as a scare tactic by law enforcement and even some medical providers to deny patients a combination of medications previously used successfully.

The unintended consequence of this careless usage has been the deaths and needless renewal of pain and disability for patients who were being safely prescribed these medications.  

There is no one-size-fits-all treatment for chronic severe centralized pain. In fact, the current Pain Management and Dosing Guide from the American Pain Society lists opioids plus other central nervous system depressants and valium (a diazepine) as potential treatments for neuropathic pain.

It is well acknowledged that successful treatment often requires polypharmacy regimens tailored to the needs of individual patients to achieve pain relief and provide quality of life. The potential risks of using multiple medications can be reduced by prescribing both long-acting forms of these drugs and by directing patients to take them separately. 

To use the Holy Trinity as an inflammatory term is to demonize certain medications that have been abused by addicts while being used successfully by intractable pain patients. The use of this derogatory term has caused the undeserved transference of the deeply held negative societal bias against “addicts” onto some of the frailest and medically complex patients, many of whom are struggling to achieve some quality of life. 

According to the CDC, about 20 percent of adults in the U.S. have chronic pain and 8 percent have severe “high impact” chronic pain that frequently limits their life or work activities. The 2011 Institute of Medicine report puts the number of Americans with pain at 100 million, which is more than those living with diabetes, heart disease and cancer combined.

The difference between the two reports highlights some of the issues with using and understanding statistics.  However, no matter which report you use, both numbers represent a staggering number of Americans living in pain who deserve effective treatment.

Let’s lose the term Holy Trinity and allow doctors to prescribe whatever medications they deem necessary for the restoration of function and the relief of pain in their patients. Name calling and the use of disrespectful terminology doesn’t solve either the problem of addiction or the problem of pain.

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Lynn Kivell Ashcraft is an Analytic Software Consultant and writer who lives in Arizona. Lynn has lived with chronic intractable pain for almost 30 years and works with Dr. Forest Tennant as part of the Arachnoiditis Research and Education Project. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

One in Four Adults in England Take Addictive Meds

By Pat Anson, PNN Editor

Nearly 12 million people – about one in four adults in England -- are taking addictive prescription drugs to treat depression, anxiety, insomnia or chronic pain, according to a new review by Public Health England (PHE).

The review takes a cautionary view on the use of five drug classes – opioids, antidepressants, benzodiazepines, gabapentinoids, and so-called “z-drugs” such as zolpidem, zopiclone and zaleplon.

“The medicines we looked at help to make millions of people every year feel better and recover from their illness. Doctors can prescribe them because there is good evidence that they work, but they do have some risks,” the PHE report found.

Benzodiazepines, z-drugs, opioids and gabapentinoids are associated with dependence and withdrawal, while there’s a risk of withdrawal with antidepressants. When the drugs are taken in combination or in high doses, there is also risk of respiratory depression and overdose.  

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About half the patients prescribed the drugs in England had been taking them for at least a year — a sign of dependence. But the report cautions doctors not to abruptly discontinue the drugs and to taper them gradually, if at all.

“There is a view that a sub-population of chronic pain patients can be prescribed long-term opioids at relatively stable doses so that their analgesia and functioning can be maintained with good adherence and tolerable side-effects,” the report found.

“We do not want to put anyone off safely using medicines that could help them. Stopping or limiting the use of medicines could also cause harm, including increasing the risk of suicide or making people try to get medicines or illegal alternatives from less safe sources, such as illegal websites or drug dealers.”

Increasing Use of Antidepressants and Gabapentinoids

Antidepressants were prescribed to about 7.3 million people in England or 17% of the adult population. Opioids were prescribed to 5.6 million patients, followed by gabapentinoids (1.5 million), benzodiazepines (1.4 million) and z-drugs (1 million). Prescriptions for opioids, benzodiazepines and z-drugs are dropping, while the use of antidepressants and gabapentinoids is growing. 

Gabapentinoids such as pregabalin (Lyrica) and gabapentin (Neurontin) were originally developed to treat epilepsy, but the drugs are increasingly prescribed in the UK to treat neuropathy and other types of chronic pain. PHE researchers found only marginal evidence that they are effective for pain and alarming signs that they are being misused. 

“Gabapentinoids have come to be used for a wider range of indications than is supported by the evidence or their licensing, and they have sometimes been prescribed in place of opioids or benzodiazepines in the likely-mistaken belief that they are less liable to misuse or dependence, and lack of awareness of the withdrawal problems that can arise when prescribing is stopped,” the report said. 

Prescriptions for opioids and gabapentinoids were 1.6 times higher in parts of England with more poverty. People in poor areas are also more likely to be prescribed medicines for longer periods. Prescription rates for women are about 1.5 times higher than for men. Prescription rates also increased with age.

The Visible Few Pain Patients

By Dr. Lynn Webster, PNN Columnist

I receive several emails a week from people who ask for help because their treatment options have been limited or eliminated. They are in terrible pain, and they don’t know what to do.

One such person, Sharon Berenfeld, MD, recently shared an experience she had visiting her doctor.

“Dr. Webster, I came across a publication of yours. It struck a nerve with me. My pain is intractable. I have tried everything,” she wrote. “Before the exam room door even closed, [my doctor] announced to me, ‘If you think I’m just here to refill your pills, you can leave now.'

"I left in tears. I was being judged and punished for having a complication from cancer treatment. I completely understand the opioid crisis. But I feel impotent to do anything."

Who Are the Visible Few?

Earlier this year, Fox News' three-part series, Treating America's Pain: Unintended Victims of the Opioid Crackdown, showed the terrifying circumstances of people in pain and doctors under siege. One individual’s decision to commit suicide as a result of the crackdown on opioid prescribing embodies the struggles of people in pain and their providers' inability to meet their needs.

The visible few are the small number of people whose stories have been heard by journalists, media consumers and government officials. Their stories reflect millions of Americans suffering from chronic pain who live in the shadows and are invisible to most of us. 

The needs of people in pain and the challenges providers face when treating them have been overshadowed by the government's attempts to deal with the opioid crisis. The well-intentioned CDC Guideline for Prescribing Opioids for Chronic Pain has affected 20 million Americans with severe disabling pain.

It also is having consequences for everyone else in the healthcare system. Prescription opioids have been demonized and blamed for our current drug crisis.

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Unintended Consequences

The CDC guideline was supposed to be voluntary. However, in practice, the guideline has been treated as a policy with the strength of a law, and it has had severe unintended consequences. Many people are worse off in its wake. Here is a summary of the most substantial effects of the guideline.

  • Providers feel pressured to reduce the amount of opioids that they prescribe, regardless of their patients' individual needs. About 70% of physicians have reduced their opioid prescribing or stopped it completely.

  • Insurance companies set prescription limits based on the guideline. In some cases, they override physicians' recommendations. That means insurers, rather than doctors, are making decisions about how to treat pain.

  • Pharmacy chains are also limiting the amount of opioids they dispense, based on the guideline rather than on doctors' prescriptions..

  • The Centers for Medicare & Medicaid Services and the U.S. Department of Health and Human Services have set dosage limits. Providers advocating for patients who need higher amounts must navigate a complicated appeals process.

  • State attorneys general have used the guideline to evaluate whether a doctor is prescribing for a legitimate medical purpose. Deviation from the guideline has been used to accuse doctors of criminal conduct.

  • In a desperate search for pain relief, some patients have turned to street drugs.

Where We Are Now

The CDC guideline has left a trail of misunderstanding in its path. Its authors acknowledged misapplication of the guideline in the New England Journal of Medicine, emphasizing that their intention was to provide guidance rather than to establish a mandate.

"Difficulties faced by clinicians in prescribing opioids safely and effectively, growing awareness of opioid-associated risks, and a public health imperative to address opioid overdose underscored the need for the guidance,” they wrote.

In a separate article in the JAMA Network, the guideline's authors said, “The number of people experiencing chronic pain is substantial, with U.S. prevalence estimated at 11.2% of the adult population. Patients should receive appropriate pain treatment based on careful considerations of the benefits and risks of treatment options.”

There are other signs of recognition that the guideline has been misinterpreted. For example, CDC Director Robert Redfield, MD, wrote in a letter to Health Professionals for Patients in Pain (HP3), “The CDC is working diligently to evaluate the impact of the guideline and clarify its recommendations to reduce unintended harm.”

The American Medical Association's House of Delegates passed a series of resolutions on the guideline at an interim meeting in November 2018.

“Physicians should not be subject to professional discipline, loss of board certification, loss of clinical privileges, criminal prosecution, civil liability, or other penalties or practice limitations solely for prescribing opioids at a quantitative level above the morphine milligram level thresholds found in the CDC guidelines for prescribing opioids,” the AMA delegates said.

There is also some light being shined on the issue in a report by The Pain Management Best Practices Inter-Agency Task Force.

“There is no one-size-fits-all approach when treating and managing patients with painful conditions. Individuals who live with pain are suffering and need compassionate, individualized and effective approaches to improving pain and clinical outcomes. This is a roadmap that is desperately needed to treat our nation’s pain crisis,” said Vanila Singh, MD, task force chair and chief medical officer of the HHS Office of the Assistant Secretary for Health.

As the opioid odyssey continues, there are signs that the visible few are beginning to be heard. This is an important step to helping the invisible millions with chronic pain receive the care they deserve.

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Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, The Painful Truth,” and co-producer of the documentary,It Hurts Until You Die.” You can find him on Twitter: @LynnRWebsterMD.

The information in this column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Outcomes Matter When Opioids Are Tapered

By Roger Chriss, PNN Columnist

The drug overdose crisis has led to a rethinking of pain management. Prescription opioids are now seen as risky medications with potentially serious side effects, including addiction and overdose. As a result, there is an increasing push to discontinue or taper patients on long-term opioid therapy.

A recent op/ed in the Annals of Internal Medicine by physicians Roger Chou, Jane Ballantyne and Anna Lembke claims there is “little benefit” from long-term opioid use and “many patients” would benefit from tapering. They even suggest that the use of addiction treatment drugs such as Suboxone should be expanded to include pain patients dependent on opioids.

“Evidence indicates that long-term opioid therapy confers little benefit versus nonopioid therapy, particularly for function. Opioid use disorder (OUD) occurs in a subset of patients, and quality of life may be adversely affected despite perceived pain benefits,” they wrote.

“We argue that achieving effective, safe, and compassionate tapers requires implementing and incentivizing tapering protocols, recognizing prescription opioid dependence as a distinct clinical condition necessitating treatment, and expanding the indication for buprenorphine formulations approved for OUD to include prescription opioid dependence.”

It should be noted Chou is one of the co-authors of the CDC’s controversial opioid prescribing guideline, while Ballantyne and Lembke are board members of the anti-opioid activist group Physicians for Responsible Opioid Prescribing (PROP). Ballantyne, who is president of PROP, was part of the “core expert group” that advised the CDC when it was drafting its guideline.

What Happens to Tapered Patients?

The goal of improving patient safety is admirable. However, there is relatively little data on what happens to patients during tapering or after opioids are discontinued. The evidence is mixed at best.

A 2018 review in Pain Medicine of 20 studies involving over 2,100 chronic pain patients found that most patients had less pain or the same amount of pain when tapering was completed. But the studies were not controlled and the evidence was of marginal quality, with large amounts of data missing.

A 2019 study in the journal Pain evaluated outcomes in 49 former opioid users with chronic pain. The findings showed that about half the patients reported their pain to be better or the same after stopping opioids, while the other half reported their pain was worse.

There are risks associated with tapering that also need to be considered, such as uncontrolled pain, suicide, overdose and early death. The tapering process itself can be extremely challenging and patient outcomes after discontinuation are not necessarily positive.

A recent study in the Journal of General Internal Medicine looked at what happened to chronic pain patients being treated at a large urban healthcare system in the year after they were tapered.

For about 5 percent of patients, “termination of care” was the primary outcome – a vague category that means there was no record of them seeking further treatment. Some of those patients may have miraculously gotten better and required no healthcare. And some may have died.

“These findings invite caution and demonstrate the need to fully understand the risks and benefits of opioid tapers,” the authors warned.

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Another study in the same journal is also concerning. Researchers at the University of Washington followed 572 patients who were treated with opioids at a Seattle pain clinic. About 20 percent of the patients died, a high mortality rate, but the death rate was even higher for patients who were tapered. Seventeen of them died from a definite or possible overdose.

“In this cohort of patients prescribed COT (chronic opioid therapy) for chronic pain, mortality was high. Discontinuation of COT did not reduce risk of death and was associated with increased risk of overdose death,” the authors concluded.

"We are worried by these results, because they suggest that the policy recommendations intended to make opioid prescribing safer are not working as intended," said lead author Jocelyn James, assistant professor of general internal medicine at the University of Washington School of Medicine. "We have to make sure we develop systems to protect patients."

In other words, opioid discontinuation does not necessarily lead to better outcomes, as Chou, Ballantyne and Lembke suggest. The blind push to taper patients at all costs to reduce opioid prescribing can have tragic consequences — which no one seems to be tracking.

“Crucially, today’s opioid prescribing metrics take no count of whether the patient lives or dies. Data from two recent studies strongly suggest it is time to start counting. The sooner quality standards are revised in favor of genuine patient protection, the better,” says Stefan Kertesz, MD, an Alabama physician and researcher.

Outcomes matter. And they need to be reasonable for the patient. A person with a self-limiting condition like low back pain may well benefit from opioid discontinuation. But some patients with more chronic conditions do not get better, and their needs cannot go ignored.

The Canadian Psychological Association emphasizes caution and patient safety in a recent position paper on the opioid crisis:  “Tapering must always be done gradually under physician or nurse practitioner supervision, with the patient's consent, and with ongoing support and monitoring of pain and functioning, as well as management of withdrawal symptoms."

The use of prescription opioids should always take patient risks and benefits into consideration. It also requires knowing about outcomes when taking patients off opioids. At present there is too much interest in numbers and too little interest in people.

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Roger Chriss lives with Ehlers Danlos syndrome and is a proud member of the Ehlers-Danlos Society. Roger is a technical consultant in Washington state, where he specializes in mathematics and research.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

An Old Disease Returns in Modern Times

By Pat Anson, PNN Editor

Dr. Forest Tennant may no longer be practicing medicine, but he continues his groundbreaking research into the causes and treatment of adhesive arachnoiditis (AA), a chronic, progressive and painful inflammation of spinal nerves.

Once a rare disease linked in the 19th century to infections such as syphilis and tuberculosis, arachnoiditis is re-appearing in surprising numbers and for completely different reasons. Tennant believes millions of Americans may have developed AA, which is often misdiagnosed as “failed back syndrome” – chronic back pain that fails to respond or grows worse after invasive spinal procedures.

“I think it’s now the number one cause of really severe pain in the country. I don’t think there’s any question about that,” says Tennant. “When I closed my clinic, about 70% of the people in there who had to take high dose opioids had an issue with arachnoiditis.”

Tennant and co-author Ingrid Hollis have written a new book -- “Adhesive Arachnoiditis: An Old Disease Re-Emerges in Modern Times” -- to help doctors and patients recognize the symptoms of AA and to offer hope for treating a disease long thought to be incurable.

Why is AA re-emerging?  Tennant says a “perfect storm” began to appear around the year 2000, when longer lifespans, obesity and sedentary lifestyles contributed to more cases. Lack of exercise has long been associated with chronic back pain.

Arthritis, accidents, repetitive stress injuries and even Lyme disease can also cause degenerative spinal conditions that lead to AA.

“But the real factor contributing is probably sedentary lifestyles. Look at the number of people spending 6 to 8 hours a day in front of a computer or TV screen,” says Tennant. “I’m really trying to bring attention to the fact that people need to be aware that this is something that can happen because of our lifestyles.”

As more Americans sought treatment for back pain, millions were given “interventional” procedures such as epidural steroid injections and spinal surgeries – a trend that appears to have increased as opioids fell out of favor. While most interventional procedures do not result in complications, all it takes is a single misplaced needle or scalpel to damage the spinal cord and trigger a lifetime sentence of AA.

“Everybody wants to blame the epidurals and the surgeries for these problems, but they were only doing these things when there were medical indications for them. And if they do the surgeries and the epidurals, a certain percentage of them are going to get arachnoiditis,” Tennant told PNN.

“There is a risk/benefit to these procedures. If you start going in and operating on the spine or you have half a dozen epidural injections, you start increasing your risk for developing adhesive arachnoiditis. One of the points I want to make is that it is the underlining spinal conditions that are causing the problems. The interventions and the surgeries may accelerate it, but the condition was already set.”

For many years, Tennant was one of the few doctors in the U.S. willing to treat AA patients with high doses of opioids. Intractable pain patients from around the country traveled to California to see Tennant – which led to his home and office being raided by the DEA in 2017. No charges were ever filed against Tennant, but the stress of being investigated led to his retirement from clinical practice.

Tennant now consults with other doctors and is developing new protocols for treating AA with hormones and drugs that reduce pain and inflammation while stimulating nerve growth. His book includes a self-screening test for patients and a list of AA symptoms.

Most essential in any AA diagnosis is a good MRI of the spine. Tennant has a library of over 300 MRI’s sent to him by patients and doctors in dozens of countries — a testament to how AA is re-emerging worldwide.

(Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.)