Abandoning America’s Pain Patients

How Did We Come to Abandon America’s Pain Patients?Filter Magazineby Alison Knopf – July 2019

This is an excellent article pointing out exactly how pain patients have been neglected and dismissed by the medical system. Kudos to Alison Knopf for her exemplary work.

Overdoses—not those involving prescription opioids, but of heroin and illicit fentanyl, often combined with benzodiazepines—continue to go up. But opioid prescribing continues to go down.

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.

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.

The Victims

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.

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.”

That’s what most good doctors have always done. But because a few rogues prescribed too much or even illegally, all doctors are being painted as “opioid pushers”.

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.”

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

It’s outrageous that no one is asking what happened to the patients who needed those medications and were functional on them.

The details of the CDC guideline are not objectionable.

And the guideline’s widespread misinterpretation gives reason to question whether it puts too little emphasis on the importance of opioid prescribing to relieve suffering—and too much on the possibility of opioid prescriptions leading to OUD.

…when the reality is that many patients were helped and only a few (less than 5%) have problems with OUD. The CDC has the emphasis backwards.

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 CDC doesn’t regulate doctors.

Only the states are allowed to regulate medical practice, not the federal government, which is the CDC.

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.

Why Physicians Are Frightened

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

“Nobody saw what was going to happen,” Mark A. Weiner, MD, representing the American Society of Addiction Medicine, told Filter

This is utter nonsense, clearly spoken from the view of an addiction specialist uninvolved in pain care. This was also the case with the group that wrote the guideline.

Many, many pain patients and doctors feared exactly this result.

It seems the only ones who were supposedly surprised by it were the experts who wrote it in the first place. So it’s questionable whether they really did not expect the across-the-board opioid reductions even by force.

Many of us patients believe that this result is exactly what was planned in order to force us all into recovery programs for addiction since PROP’s theory has always been that we’re all addicted.

“The focus on prescribing is not unimportant,” said Richard Saitz, MD

Why in the world would someone say “is not unimportant“ when what they really mean is that it “is important”? This is not normal speech and it makes me suspicious.

“Yes, exposure to opioids is a factor in developing opioid addiction, but it isn’t the sole factor… 

The exposure to opioids only leads to opiate addiction if the person has addictive properties themselves. When other people, most people, are exposed to opioids they do not become addicted and nearly achieve pain relief.

…and focusing on prescribing of opioids is a bit like looking for the keys under the lamppost because that is where the light is.

This is exactly how I worded it years ago: they are focused on prescriptions because those can be easily counted and tracked. It’s much more difficult and dangerous to go after the drug dealers selling fentanyl-laced products.

Perhaps I should be gratified that experts are now saying the same things that I was, but instead, I’m just extremely disappointed.

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.”

Pharma Lawsuits’ Chilling Effects on Prescribing

A string of high-profile lawsuits against opioid manufacturers—the first in Chicago in 2016, the most recent in Oklahoma—have 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.

And this is just another sign that the American Medical Association is less concerned with patient care than administrative problems.

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

“Pain is still a valid specialty, but now, everybody’s too scared to prescribe.”

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.

So the lawsuits are about everything else except patient care, pain care for those that desperately needed.

It’s pretty clear that all these medical expert groups are simply not considering pain patients at all.

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.”

Dr. Kertesz is exactly right: all Pharma marketing, opioids or not, is a public menace.

Doctors are supposed to have the medical knowledge to determine what medications patients need, but advertising targets the patients who then demand these pills from their doctors. This is backward.

“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.

This is the direction this country is headed: everything has to be simplistic black-and-white. When real life is so much more complicated, such simplistic views will always end up damaging those that aren’t part of the simplistic groups they are setting up.

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.

…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

“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.

Oh yes, pain patients now have a thorough contempt for the medical system. We have seen “behind the curtain” and now know the medical system runs on simplistic, politically convenient metrics and money, not patient care.

We’ve been betrayed and abandoned by this system, we were disbelieved and dismissed and treated as though we were low-life, addicted compulsive liars.

We will never forget this.

Moving the Pendulum

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 [The National Institute of Drug Abuse is clearly the expert here, but he doesn’t like their realistic numbers] , 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.”

If 3.5 percent had severe OUD and 58.7 had “no or few” symtoms… Curious minds want to know what happened to the other 37.8 percent.

Nicholson said, “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.”

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

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.”

Author: Alison Knopfhas 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.
* 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.

5 thoughts on “Abandoning America’s Pain Patients

  1. Kathy C

    They had plenty of help. From the reality shows of the early 2000’s where they put addicted people on TV, for advertising and marketing purposes. Remember Dr Dew? He was Americas favorite ” addiction specialist.” He would rail about the evils of addiction on TV news shows, after a few of his reality stars died, they quietly canceled the shows. After putting the families in torment on TV he would whisk the addicts away to a Malibu treatment center. These people died after they were released, from treatment.

    Dr Drew went on to rape charges, is appears he was using his celebrity to market his “services” to attractive women. he would lure them in and drug them with Ketamine, then rape them.

    The early 2000″ are when the DEA was told not to prosecute large quantities of opiods, “misplaced” from the supply chains of large pharmaceutical companies. These drugs were sold on the black market in massive quantities. It was hands off of the big corporations that were allowing it. https://www.theguardian.com/us-news/2018/may/22/rudy-giuliani-opioid-epidemic-oxycontin-purdue-pharma

    People like Beth Darnell at Stanford and many others like there are benefiting too. Darnell is peddling her books, speaking engagements, and even got paid big bucks to speak at the World Economic Forum in Davos, it seems the billionaires love to hear about how “Mindset” is why there is economic inequality and despair in the world. She is selling a course on “Catastrophizing” and using her position at Stanford to peddle and amplify bad corporate funded science. The Stanford Pain Twitter feed us full of alternate facts, that explain why pain patients are considering suicide and having their pain go untreated.
    Think of all of the state Opioid Boards random assortments of self described experts, usually promoting their practice, and with the power to disburse those opioid dollars not one spoke up about the draconian CDC guidelines or the plight of pain patients.

    Maybe the World health Organization will research what they did here in the US and come up with the term Genocide. Millions of people who are already denied basic healthcare, many who work 2 or 3 jobs and are exposed to toxic stress. When they develop a painful injury, condition or undergo a painful surgery, they are denied basic pain relief. In the US it will be two tiered, the wealthy will very likely get their pain treatment, while the rest will suffer. The regulatory agencies are much too corrupt to count how many of these conditions are misdiagnosed, leading to even more pain. The only incentive in healthcare is to increase profits, which in part has led to this crisis. There is a bigger incentive in misdiagnosis, selling ineffective treatments, pharmaceuticals or dangerous injections, than in an accurate diagnosis and treatment. The FDA and the CDC made this really clear when they came up with the guidelines. It is all about the money. No one counted the dead, the suicides or even the number of truly addicted.

    Most of the money they have provided for research will be wasted too, since they are not using facts. They will come up with more wasted, biased and limited research, which they will get their friends in the media to amplify as if it is factual, while factual research will be ignored. thousands of people in the US die every year, because they don’t have insurance or can’t pay for healthcare. It is very clear the only concern is profit, they allow people. to die in order to profit. Just like the FDA hiding the adverse events and deaths from surgical implants, bad healthcare, or as a result of the guidelines.

    We are in the land of Alternate Facts, the youth suicide rates go up, and all they can do is find a way to profit from that too, instead of doing factual research. The psychologists and psychiatrists were supposed to be researching these things, instead they turned, to corporate funding, to create and atmosphere of denial. The American Psychological Society is really scary, they have come up with lots of alternative facts in order to cash in on American despair.

    Liked by 1 person

    Reply
  2. GZB

    After I saw the figures released yesterday regarding diverted opioids, and the DEA and the Justice System basically giving them a pass and enabling more rampant diversion, I felt like I was going to explode. This will only serve to damage those in legitimate pain more. Pain was not in the equation at all, only greed. I am incensed that those of us who suffer constantly may have been used as cover for these unspeakable crimes. I’ve had a little time to calm down and I’m really not ready to take any of these numbers at face value. After all, they are being used for litigation. We know who will disproportionately benefit from these settlements, the attornies(sp?) and “expert witnesses “.
    I’m not feeling particularly positive today.

    Liked by 1 person

    Reply
    1. Zyp Czyk Post author

      I can only function by remaining firmly in denial of how angry I am about what’s being done to us. If I ever unleashed the fury I feel…

      Denial can save lives too :-)

      Like

      Reply

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