About four years ago, Dr. Stefan Kertesz started hearing that patients who had been taking opioid painkillers for years were being taken off their medications. Sometimes it was an aggressive reduction they weren’t on board with, sometimes it was all at once.
Clinicians told patients they no longer felt comfortable treating them.
Pardon me for not being terribly concerned about physicians “discomfort” in prescribing me opioids for my much greater “discomfort” (and which I don’t have a choice about) with chronic pain.
Kertesz, a primary care physician who also specializes in addiction medicine, had not spent his career investigating long-term opioid use or chronic pain.
This is a rare case of an addiction specialist who stands up for pain patients with intractable pain. Dr. Kertesz was one of the first doctors to push back against the indiscriminate deprescribing of opioids (I’ve posted his repeated calls for reason almost 30 times starting in Jan 2016 – list at bottom of this post).
He was publishing articles questioning the careless campaign to eliminate opioids while other doctors were still running away from their obligations to pain patients who’d been taking opioid
But he grew concerned by the medical community’s efforts to regain control over prescribing patterns after years of lax distribution.
Limiting prescriptions for new patients had clear benefits, he thought, but he wondered about the results of reductions among “legacy patients.” Their outcomes weren’t being tracked.
Now, Kertesz is a leading advocate against policies that call for aggressive reductions in long-term opioid prescriptions or have resulted in forced cutbacks.
He argues that well-intentioned initiatives to avoid the mistakes of the past have introduced new problems. He’s warned that clinicians’ decisions are destabilizing patients’ lives and leaving them in pain — and in some cases could drive patients to obtain opioids illicitly or even take their lives.
“I think I’m particularly provoked by situations where harm is done in the name of helping,” Kertesz said. “What really gets me is when responsible parties say we will protect you, and then they call upon us to harm people.”
Kertesz’s critics have questioned his motives. He’s heard he’s been called “the candyman.”
“I am really worried that people like Stefan Kertesz, who is trying to champion ‘patient-centered care,’ in some ways are feeding into the same misleading messaging rolled out by Purdue [Pharma] and others that not to prescribe opioids is tantamount to torturing patients,” said Dr. Anna Lembke, the medical director of addiction medicine at Stanford.
It’s not just this doctor. At her own institution, Stanford, Sean Mackey and Beth Darnell have both rallied to support legacy pain patients and resist this ignorant standardization of medical practice for people with intractable pain.
Opioid prescribing has been declining since 2012, though levels remain higher than they were two decades ago. Today, depending on the estimate, anywhere from 8 million to 18 million Americans take opioids for chronic pain.
So these drastic restrictions are proposed by people who believe that 8-18 million Americans must be punished for taking a drug that other people abuse.
Enduring opioid use makes people more sensitive to pain, many experts believe.
This hints at hyperalgesia, which has never been conclusively demonstrated to occur in human beings, only in lab rats.
Opioid use has also been associated with anxiety, depression, and other health issues.
To me, it seems outrageous that they can pin these problems on the opioids when such problems are actually caused by the underlying chronic pain. (See Opioids Blamed for Side-Effects of Chronic Pain)
Taking away opioids and leaving someone in pain is also very damaging to their health; I’ve collected a whole list, Bodily Damage from Uncontrolled Chronic Pain, so this could also be a form of malpractice.
Plus, as people become dependent, the drugs might just be staving off symptoms of withdrawal that would come without another dose, rather than treating the original source of pain.
This may be true of a few individuals, but it’s certainly not the standard situation. Most pain patients have tried other treatments for their pain but they didn’t work.
We take opioids as a last resort, and now that last resort is being taken away. Why would we not become desperate and frantic?
The guidelines, a set of measured recommendations finalized in March 2016, suggested clinicians try other therapies for pain before moving to opioids and prescribe only the lowest effective dose and duration of the drugs.
This is exactly how my pain management was handled. We tried just about everything else I could afford (and a few that I really should not have afforded because they were useless) before switching to opioids.
So my pain treatment actually followed the CDC guidelines perfectly.
Neither I nor my doctor ever wanted to see me on such high doses of opioids forever, but after seeing multiple doctors and specialists, none of whom were able to offer me any better ideas. I’ve had to resign myself to taking these pain medications for the rest of my life because I suffer from a genetic disorder that is guaranteed to do nothing but get worse over my lifetime.
“Our day-to-day practice aligns with nearly all principles laid out in the guideline,” Kertesz wrote in a comment he submitted on the draft. But he cautioned the voluntary recommendations could be implemented too stringently by others.
Just as I have found, most pain management seems to follow the CDC guidelines. But what is so shocking is that some, and I hate to call these people medical experts, have tried to apply them in retrospect, which is medically totally unsupported and has never been done before.
“This is a guideline like no other … its guidance will affect the immediate well-being of millions of Americans with chronic pain,” he wrote.
He’s exactly right: these guidelines are being applied to legacy patients as sort of a retroactive “safety“ program, that’s millions of people left in pain.
After the release of the guidelines, Kertesz started seeing ripple effects. In early 2017, federal officials unveiled a Medicare proposal that would have blocked prescriptions higher than 90 MME without a special review. Around the same time, the National Committee for Quality Assurance considered docking clinicians’ scores if they had patients on high doses for long periods.
All these measures are being embarked upon without any study. No outcomes are being recorded, which is very convenient for those who would like to forget that we suffer from constant on remitting pain.
Kertesz, other experts, and some medical societies protested such proposals, contending they invoked the CDC guidelines while violating them.
I don’t see how it is logically possible to support and enforce one part of the guideline without regarding another part of the guideline that says to disregard the first part if the patient is already on opioids.
In that case, the guideline only recommends evaluating the benefits and harms before making any decisions. And these are supposed to be medical decisions, not cultural decisions or political decisions or decisions tied to financial reimbursements.
Kertesz and his allies raised their concerns in the popular and academic presses and at conferences, building momentum over the years. They collected anecdotes from patients who said they had been harmed in some way by dose reductions or involuntary tapers.
“It is imperative that healthcare professionals and administrators realize that the Guideline does not endorse mandated involuntary dose reduction or discontinuation,” read a March letter co-authored by Kertesz calling on the CDC to reiterate its recommendations were not binding.
More than 300 patient advocates and experts, including three former White House drug czars, signed it.
Having 300 experts sign a letter asking to slow down the anti-opioids dollar tree would seem to make an impression, but even they have been brushed off as though they were fools for believing that opioids could have any benefit.
Having tenure has made Kertesz more comfortable being outspoken. And he feels he may have more credibility than other physicians to make this specific case.
He is a primary care physician who cares for people who are homeless and, beyond some former stock ownership, has no ties to drug companies, as opposed to a pain specialist who received research funding from them.
I’ve always been angry about pain support groups and organizations taking money from drug companies. That never turns out well in the long run.
It doesn’t take a genius to see that they will be accused of pandering to opioid makers, and that is exactly what is happening. Some have even gone bankrupt due to this problem. But they couldn’t “taper” themselves off pharmaceutical money.
I once participated in a round table discussion about opioids with the company that was marketing Zogenix, a hydrocodone time-release pill.
Afterward, they sent me a little gift certificate for $50, and as soon as I had it in my hands I felt dirty. In good conscience, I just could not use it. So I sent it back and, as expected, have never heard from the company again.
Kertesz “certainly is very close to people who are being paid by opioid manufacturers,” said Dr. Adriane Fugh-Berman of Georgetown University, who studies the pharma industry’s influence on medicine.
Kertesz said that because of the industry’s history of opioid promotion, such criticisms need to be part of the discussion.
I admire the way this doctor refuses to flinch from potentially damaging information. He stands firm in his belief that information like this should be public and should be discussed, which makes him an outlier among medical personnel.
He really is a very special doctor and we are lucky to have him advocate for us.
Fugh-Berman is among the experts who have challenged Kertesz’s most alarming claim: that pain patients are being driven to suicide. They argue advocates are relying on anecdotes more suited to a political candidate’s barnstorming.
We wouldn’t have to rely on anecdotes if the outcomes of opioid reductions or being tabulated. But when we are given no data, what else can we do but listen to the stories of individuals who are affected?
The people who claim that all opioid prescriptions lead to addiction never have to approve their claims either. They rely on anecdotes from people who have lost loved ones to opioid addiction and overdose, and we counter that with anecdotes from people who have lost loved ones to suicide when they could no longer live with their chronic pain after opioids were withdrawn.
As soon as there is data I would love to see it. But since no one is counting or studying the outcomes of this “opioid-reduction experiment”, I don’t expect to see “official” numbers anytime soon.
Establishing cause and effect in suicide is complex, and studies have shown an association between opioid use and suicide.
Kertesz replied that he had reviewed medical records from people who had died by suicide after an opioid reduction. He added a caveat:
“You have three things that are potentially simultaneously associated with harm: Pain itself. Opioid dependence, the dependence itself. And the event, however, we wish to interpret it clinically — as resurgent pain or untreated opioid dependence — in patients who are having opioids taken away.”
Kertesz is now trying to secure funding to study such suicides.
I suspect he will find no such funding.
Nowadays only anti-opioid studies are being approved and funded, a side effect of our cultural confusion about addiction and opioids.
Here are only a few of the articles I’ve posted on the pervasive research bias found in scientific studies these days:
- Funding Bias: Danger Lurking in Industry Studies
- Research Reporting Bias in Clinical Trials
- Statisticians Asked to Commit Scientific Fraud
- Sampling Bias in Pain Research
- that opioids were massively overprescribed,
- that the patients he’s worried about should have never been on these doses, and
- that many patients will be better off after tapering.
I’m sure many pain patient advocates would argue with these points, and that’s part of our problem too. Because we feel under attack by the public, our doctors, and our government, we get defensive and refuse to give any ground at all.
But we cannot deny that opioids were overprescribed for a while when insurance companies were refusing to cover any pain treatments besides opioids. There was a time when every ache and bump was “treated” with a month’s supply of opioids for lack of any other available alternatives.
I’m very aware of the problem because, in 1995, when I started taking opioids, I had to explore all alternative treatments with my own money.
I spent literally thousands of dollars on “alternative medicine” treatments, including various dietary modifications and supplements, various exercises, various body-manipulation therapies (multiple chiropractors and acupuncturists), various medical procedures (epidurals and surgery), and all kinds of other non-opioid medications.
I even faithfully downed disgusting concoctions of Asian “herbs” which included desiccated earthworms – I was that dedicated to finding a way around opioids.
Lembke stresses that tapers need to go slowly and that patients should be monitored closely during the process — never pushed out of care.
But Lembke also says that no one should be taking opioids for chronic pain and that they should be tapered, if not willingly, then forced.
Even so, these two opponents actually agree on the basics. It’s never an optimal strategy to just take opioids forever, and if they were a better course of action that was effective most pain patients would jump at the chance. So it’s only whether the reductions should be forced onto legacy patients that seem to be in contention.
Lembke noted that prescription policies typically include exceptions for some patients to remain on high-dose opioids.
“There are rare instances where I would agree that maybe the most judicious path is ‘leave well enough alone,’” she said
So, she is not completely unreasonable, willing to admit that there are patients who need long-term high opioid doses.
Kertesz takes a different view. He supports doctors who encourage tapers, and he has spoken about tapering a patient off her medications against her wishes in one case. But he believes those are choices for clinicians to make, and that overarching policies will lead to mismanaged care.
And this is really the crux of the issue: should the government standardize medical treatment and medication doses for all citizens or should these decisions be left to doctors with their patients.
Last month, the authors of the CDC guidelines published a paper that said “some policies and practices purportedly derived from the guideline have in fact been inconsistent with, and often go beyond, its recommendations.” They called out “hard limits and abrupt tapering of drug dosages” that their guidance did not endorse.
So now, even the people who wrote the guidelines are warning that they should not be forced upon patients without a medical reason.
The problem becomes when patients are pushed to take doses that are part of a national standard devised for “average patients“. Often these are detrimental for almost everybody except for the small percentage of people who are close enough to the true American average citizen to benefit from such policies.
The rest of us struggle with standards that are designed for the mythical “average” patient.
Here’s a list of almost 30 posts on Dr. Kertesz’ advocacy for us since 2016:
- Kertesz & Twillman Dispute Oregon Proposal
- Stefan Kertesz Responds to Opioid vs NSAID Trial
- List of Peer Reviewed Articles on Pain/Opioids
- Opioid/Overdose Crisis Fueled by Illicit Fentanyl
- The Limits of Prescription Control
- Oregon Overshoots on Opioid Prohibition
- High-dose patients suffer greatest opioid cuts
- Three Doctors Supporting Pain Patients’ Concerns
- Pill Limits Not a Smart Way to Fight the Opioid Crisis
- Medicare Opioid Limits Unjustified and Unethical
- Opioid Prescription Control: When The Corrective Goes Too Far
- Forced opioid reductions “by the numbers”
- Opioid Prescription Corrective Goes Too Far
- Opioid dose reductions agonizing for pain patients
- Will Limits on Opioid Rx Duration Prevent Addiction?
- Will Pill Control “Fix” Our Problem?
- CDC Opioid ‘Guideline’ -> Pain Patient Suicides
- Let’s not kill pain patients to “save” patients with addiction
- Opioid Quality Metric Based on Dose Alone
- Docs warn Medicare crackdown will hurt pain patients
- ‘Inhumane treatment’ of pain patients
- Even Guideline Writers Express Concern over its Use
- Opioid Prohibition Risks ‘Inhumane Treatment’ of Patients
- Opioids, Addiction, and Pain: Briefing for Policy Leaders
- It’s about illicit fentanyl, stupid!
- Expert Feedback on the Report on Addiction
- The Changing Opioid Epidemic: Not from Rx
- Doctors Need to Focus on People, Not Pills
- Opioids, Pain and the CDC’s Guideline: Needs Improvement