A new definition of pain is out for comment from the International Association for the Study of Pain, an influential global alliance of researchers.

When I heard about it, my hair stood on end. Some people think a new definition could lead to new therapies. But as a 23-year veteran of serious pain from a progressive disorder, I dread losing the old therapy: opioids.

Prescription opioids have lost favor since the national opioid crisis, when a growing number of people fell victim to an increasingly unrelated supply of these drugs. Prescribed drugs, illicit drugs — the distinction between the two, and their respective contributions to overdoses, hasn’t been widely grasped. And so there’s much ado about opioid replacements such as ineffective drugs, “mindfulness,” chiropractic, cognitive behavior therapy, “coping and acceptance,” acupuncture, virtual reality, and more. The problem is that none of these has been proven or even properly tested. New drugs likely to work on severe pain aren’t anywhere near the pipeline. And most of us already know what we’d pick for a broken bone or a kidney stone.

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As someone who lives with a lot of pain, I care deeply about pain treatment. In the last two years, I’ve lost care twice, without warning, because of the thoughtless, often self-interested policy that’s fueling the fad to get everyone off pills. My longtime primary care doctor in Halifax, Nova Scotia, threatened by her regulator, suddenly stopped prescribing opioids. Next, the Nova Scotia Health Authority abruptly closed my pain specialist’s practice.

As a writer, I care as deeply about words. Here’s the old definition of pain that the International Association for the Study of Pain (IASP) laid out in 1994: An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.

It ain’t broke. Why fix it?

Here’s the proposed new definition: An aversive sensory and emotional experience typically caused by, or resembling that caused by, actual or potential tissue injury.

Look what the cat dragged in. Something only resembling damage might cause pain. Despite disclaimers in the notes attached to the new definition, here’s the slippery slope: Pain might result from a verifiable injury, or it might not. It might be an illusion, an inconvenient mental trick. If it’s all in your head, pain obviously won’t need a Percocet.

And there’s more — or in this case, less. Treatment, which was declared a must in the notes accompanying the old definition, goes unmentioned in the notes accompanying the new one.

The IASP is accepting comments on the new definition until midnight on Sept. 11.

One thing I notice about the opioid crisis is this: the more talk, the less pain care. Will a new definition help, or will it harm?

How did we get here? The IASP always seemed to be a good guy in the conversation about pain relief — by whatever methods it takes. Since 2010, the organization has been associated with what was long considered one of the world’s best pain clinics, at McGill University in Montréal. The clinic’s former director is past president of IASP. He’s written thoughtfully about untreated pain, even mourning Spain’s Philip II, a 16th-century Catholic who died in needless agony from cancer while refusing all help but God’s.

Back in 2010, IASP issued its “Declaration of Montréal,” after the city in which it was crafted during the group’s 13th world congress. It’s strong stuff. “Recognizing,” it says, “the intrinsic dignity of all persons and that withholding of pain treatment is profoundly wrong, leading to unnecessary suffering which is harmful; we declare that the following human rights must be recognized throughout the world:

  • The right of all people to have access to pain management without discrimination
  • The right of people in pain to acknowledgment of their pain and to be informed about how it can be assessed and managed
  • The right of all people with pain to have access to appropriate assessment and treatment of the pain by adequately trained health care professionals.”

Who could argue with that?

Almost everyone, it turns out: governments, prescribers, insurers, news media, the public. It’s wonderful that professionals who really know pain once declared these rights for people like me — for all of us, actually, since at some point we’ll all have pain. But who’s listening now? The deprescribing whirlwind has battered many like me beyond repair. However carefully chosen the words of the declaration, they’re not binding in the least.

Dr. Yoram Shir, the current director of the McGill clinic, has said that pain patients on opioids “hate” the drugs. Prescription pills feed overdoses. Doctors should be dissuaded from prescribing them and patients from taking them.

IASP has changed, too, and some of the changes unnerve me. For instance, Christine Chambers, a psychologist, is championing a new IASP initiative called the North American Pain School. Health Canada ponied up $1.6 million for her work to “bridge the gap between current treatments and evidence-based solutions.” At the annual conference of Canada’s pain specialists last year, Chambers brought in her colleague Dr. Jane Ballantyne, the enduring president of the opioid-averse lobbying group Physicians for Responsible Opioid Prescribing, as the conference keynote speaker — and then declined to comment to the media on her choice.

PROP’s executive director, Dr. Andrew Kolodny, has called medical opioids “heroin pills.” Ballantyne famously recommends “coping and acceptance” over drugs for intractable pain, and has been a paid consultant to states suing drug manufacturers, whom they blame for overdoses.

Ballantyne also helped craft IASP’s 2018 Position Statement on Opioids. It advises caution “when prescribing opioids for chronic pain, focusing instead on strategies that integrate behavioral and physical treatments,” because, we’re told, opioids are good only for acute pain, cancer pain, and end-of-life care. When used “indiscriminately” (meaning for chronic pain, according to the statement), we’re also told that the use of opioids has led to “high rates of prescription opioid abuse, unacceptable death rates, and enormous societal burdens.”

Recent research, and much of IASP’s own work, says otherwise. Take, for example, the largest study to date, of 2.2 million North Carolinians, which pegs the risk of dying due to medical use of opioids at just 0.022%.

What, exactly, is pain? It’s not something I need spelled out. But as the IASP rejiggered its answer to that question, did these colleagues weigh in? Another PROP director, Dr. Mark Sullivan, sits on the definition task force, where opinion lists the ship by favoring “nonnarcotic methods” and “risk containment for opioid misuse, abuse and addiction associated with medical prescribing.”

The IASP and its task force comprise many points of view. But even if the rewrite were less trendy, I’d question the need for it.

In our new no-opioids culture, pronouncements like the IASP’s lead to more resources going to “innovations” and “emerging research” that disparage and displace proven therapies, leaving nothing for people living with pain.

What matters is what’s done, not what’s said. George Orwell wasn’t the first to observe that what’s said can be designed to obscure what’s done. Funding attaches to words. Will more parsing mean more mindfulness and acupuncture for victims of head-on car crashes? And more advantage for opioid detractors, whose opinions spell opportunity in the form of research grants, publishing records, jobs, media prominence, speaking engagements, paid testimony and other consulting for law firms, as well as promoting alternative analgesics and addiction drugs for pharmaceutical companies?

Let’s look at who is behind new declarations and definitions, and who isn’t — understanding the players helps us understand the argument. Let’s watch the data, not the news, and check facts and sources. The IASP’s rewrite is on the way to kicking medical opioids to the curb. Maybe we will do that someday, and maybe that will be fine.

But until then, I’ll stick with opioids … if I can.

Dawn Rae Downton writes on health policy from Halifax, Nova Scotia.

  • Dr lawhern and dr. Lister , people keep saying that doctors offices are being targeted but the doctors that i know of that didnt taper their patients havent been touched. People like me believe that this is not true because no one has been shut down . The ones that shut down in tn. And n.c were the same co. And it was medicaid fraud or medicare. Not overprescribing. Can either of u tell us how many doctors in tn. Or n. C have been shut down for overprescribing.

  • Actually the question of licit vs illicit drugs ARE central to this issue of what caused the early inception of the opioid crisis. There is no argument as to what is continuing it: illicit fentanyl from Chinese labs sourced through Mexico. Patients already addicted will seek the drug of choice from whatever source. But data shows conclusively that the initial wave of addiction/OD deaths were related almost exclusively to prescription medications improperly prescribed.

    However, posting on social media and getting a response from 100 patients is hardly a scientific study and carries no validity unless you determine the qualifications of the provider involved, whether it was a licensed TN facility, whether the owner of the facility shut it down because of continued fraud investigation by the DEA/FBI etc. I don’t, and never have, in this discussion indicated that the regulation presently in place is perfect. My initial comment simply made clear that regulations and guidelines put in place (in TN) were necessary, developed by pain professionals and academics (UT, Vanderbilt) and reasonable.

    I am glad that you finally agreed with me regarding appropriate work up and monitoring since that has been our clear focus here in TN. I will gladly let you deal with the rest of the country since all of my time is spent treating chronic pain in TN and helping improve the medical practice across the state. We have a very good system of licensed pain clinics in TN , staffed by APPs and supervised by pain specialists. Recent closures due to allegations of fraud, improper billing and highly improper prescribing (for sex or money)are out of our hands and have little to do with state regulations.

    I hope your daughter and wife are responding well to whatever therapy they are receiving. My wife continues to have interventions procedures from Dr Choo and is doing very well. That is good because we are raising 5 grandchildren from two daughters, one of whom is deceased the other fully disabled from illegally diverted prescription opioids.

    Working together is the best way to resolve this problem. I am neither a member of PROP nor a proponent of OTC opioids. I believe in reasonable regulation that helps patients get the treatment they deserve. You cannot understand the situation in Appalachia unless you have visited the communities where millions of pills were prescribed without good medical judgment, and I can’t understand the situation in California, but good guidelines, well developed and applied appropriately are universal.

  • Cindy, when the city you use to live in becomes the crime Capital of the State, you learn you have to get out as Seniors are prime targets. I can get to the Primary, dentist and eye doc on my own. Hubby takes me to the rest. We are lucky they are all off one main road. We call it Doctor’s Row. Dozens of all types of doctors. From all different hospitals. It’s in a slightly safer part of town. I no longer shop at malls, or big chain stores, they don’t provide electric carts. Niche stores don’t carry what a 71 yr old is interested in. It’s as if this generation has forgotten us. Even Church has. Praise Hymns not Songs. Got told not to get up and use the bathroom during service. Where do you want me to PUKE or have a incident of Diarrhea then on that nice bench or the nice rug? We sat in the back row for that reason. The noise is overwhelming to people who wear hearing aids. No one is patient with us either. People have become so RUDE. One day they will be in our shoes.

  • Cindy: Nor is it reasonable for you to extrapolate to the thousands addicted and dying from inappropriate opioid prescribing. The state of Florida fueled this crisis as much as any other state. I am truly sorry for your pain, and I hope your doctor is a good one.

  • Please point out my contradictory statements. I don’t believe you can. An individual response to treatment is not evidence of efficacy or risk.

  • Dr Lawhern, is this the pot calling the kettle black? You seem to be immersed in your own mythology, or is there an ulterior motive? Have you disclosed all conflicts of interest?

    Its interesting that you quote Dr. Volkow, an extremely well respected physician who gave us the idea that addiction is a brain disease. Certainly addiction is not a predictable result of opioid prescribing, that is exactly what makes management of chronic opioids difficult. And what “small percentage ” does Dr Volkow quote? The articles of Flemin,MF et al indicate a SUD risk of 4-8% in a primary care population (1000 patients), but up to 24% in patients with 4 risk factors. In some counties in TN and KY 100% of the patients would have 4 risk factors! I suggest you visit some communities in Appalachia and see what devastating consequences can occur with irresponsible opioid prescribing. Even Dr Volkow’s own NIDA website discusses the risk of addiction with prescription opioids.

    You seem to continue to make a distinction between licit and illicit opioids as the cause of the opioid crisis? What is the difference? Fentanyl is both, heroin is metabolized to morphine. How do you define medically prescribed opioids for chronic pain? Does it require a history and physical, reasonable diagnosis, assessment of risk factors and discussion of risk? Or is it “I’ve got pain…” OK give me $100 or sex”.

    You seem to be overly concerned about MME. Certainly the CDC guidelines overemphasize this. But that said high MME does carry it’s own set of risk: diversion for income, hypogonadism and cardiac disturbance with methadone, a common drug associated with high MME. Also the risk of accidental OD increases with high MME and co-morbid conditions such as sleep apnea. Chronic opioid patients are at higher risk because tolerance to analgesia develops faster than tolerance to other side effects such as respiratory depression.

    You have asserted in previous posts that the opioid crisis is the result of illicit opioids. Records for the Knox County medical examiner’s office in TN reflect differently. Prior to 1996 opioid OD deaths in Knox county were few. The drugs of choice in addiction were crack cocaine and methamphetamine. Soon after 1996 opioid deaths began to increase dramatically, long before fentanyl or significant heroin increased on the streets. Opioid deaths were almost always associated with prescribed benzodiazepines, long before illicit benzos arrived.

    Last, you seem to continue to assert that I want to deny chronic pain patients access to opioids. Nothing could be further from the truth. Nothing upsets me more than not being able to control pain completely with procedures and non-opioids, and I recognize that opioids are still the bulwark of chronic pain management. That simply does not mean, however, that opioids should be prescribed with little attention to good medical care by greedy or poorly functioning doctors. Doctors and other medical professionals are licensed by the state for a reason, to protect the public interest. While guidelines are mutable, laws are usually not. I suggest you spend you time working on reasonable revision to the guidelines rather than asserting there is no need for them.

    I remember a patient many years ago from LA. She came to me with huge bottles full of Oxycodone, treated for chronic pelvic pain with high dose opioids and “vaginal electric stimulation”. She was down to Tramadol b.i.d. after an appropriate gyn consult and gradual weaning. Chronic opioid treatment is NOT safe unless there is a real pain physician on the Rx side.

    • Dr Lister, I have no financial or professional conflicts of interest. My spouse and step-daughter are chronic pain patients. I have been an unpaid volunteer moderator and website administrator for online chronic pain communities for over 22 years. I’m easy to find in the Net. My qualifications have been carefully stated and qualified at several points in this commentary thread.

      The distinction I make between licit and illicit opioids is central to this public policy issue. Almost none of the fentanyl that is killing addicts across the country is sourced from prescription pharmaceuticals. It is created in Mexican and Chinese labs, and there are several close analogs in circulation.

      Our opioid “epidemic” really isn’t sourced in prescription drugs. Illicit drug distribution networks have adapted to changing markets and targeted vulnerable populations. Continuing unemployment and underemployment and the hollowing out of communities following the financial collapse of 2008 have accelerated a long standing trend in this complex socioeconomic reality. It is not going too far to suggest that increasing rates of addiction are in part a response to hopelessness and economic stagnation over the last 40 years.

      OF COURSE prescription should only be made after careful workup by a trained healthcare provider and trial of non-opioid therapies. The WHO ladder of pain treatment has established that framework for nearly 40 years. and OF COURSE patients need education in self-management and access to ancillary therapies. Nobody is arguing against those observations.

      Arguably “trained healthcare providers” also include Nurse Practitioners and Physician Assistants if they have completed a program of training and been licensed to prescribe controlled substances. Periodic monitoring of patients is also needed. And evaluation of co-morbid conditions and treatment of depression and anxiety are a key to reducing morbidity rates.

      However, access to such care is increasingly restricted by draconian and unjustified persecution of healthcare providers who prescribe opioids. Hundreds have left practice, and thousands are discharging patients or refusing them the only therapies which reliably work.

      Yesterday I posted a question in social media asking for comment by Tennessee residents who have been force-tapered or discharged by physicians afraid of being sanctioned. In the first six hours, I got over 30 responses, and they are still coming in. Some of the patient narratives are heart-rending. The idea that over 100 pain management centers are adequately addressing the needs of chronic pain patients in TN simply doesn’t survive the sniff test.

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