Pain Patients and Doctors React to New CDC Opioid Prescribing Guidelines
The 2016 Guidelines were widely misapplied and caused grave harm to chronic pain patients. The CDC just revised them. But some worry: is it too little too late?
“In a victory for pain experts, CDC tones down its opioid prescribing guidelines,” reads a headline from STAT News. “Updated CDC Opioid Guidelines Aim To Strike Better Prescribing Balance,” Kaiser Health News reported. “Amid backlash from chronic pain sufferers, CDC drops hard thresholds from opioid guidance,” according to USA Today.
Last week, the Centers for Disease Control and Prevention published long awaited revisions to its controversial and hotly contested opioid prescribing guidelines from 2016. Clocking in at 211-pages, the revised guidance on opioid prescribing seeks to spark a much needed course correction in how pain is treated in America. But some experts and patients remain skeptical whether that’ll be the case. (The revisions are now open for public comment before becoming finalized).
The revised guidelines still urge clinicians to prescribe opioids with extreme caution. The revision says prescribers should “pause and carefully reassess evidence of individual benefits and risks” when prescribing at doses greater than 50 milligram morphine equivalents (MME) per day, while the 2016 guidance urged clinicians to “avoid increasing dosages to above 90 MME/day” or “carefully justify” why doing so is necessary. The revision also urges “non opioid” therapies whenever possible, sticking to its initial goal of reducing the overall volume of opioid prescribing.
The original 2016 guidelines suggested doctors not prescribe opioids for longer than three days or prescribe in doses that exceed 90 morphine milligram equivalents (MME). While these original guidelines were meant to be suggestions in specific clinical settings, they were widely and zealously misapplied, causing grave harm to chronic pain patients all over the country who could no longer access the care they needed.
The thinking went: If “overprescribing” opioids caused a nationwide surge in overdose deaths, then prescribing fewer opioids would lead to fewer cases of addiction and overdose. But that’s not what happened. Since the 2016 guidelines, overdose deaths have risen exponentially. Pain experts argue the goal to prevent opioid addiction took priority over treating pain humanely, leaving thousands of patients in the lurch. As white market opioids like oxycodone became scarce, the use of more potent illicit street drugs has soared.
Some states, insurers, and law enforcement officials took the CDC’s 2016 guidance as hard-limits that were written into inflexible laws that prevented doctors from treating patients as individuals with individual needs. In the most extreme cases, after the 2016 guidelines were published, doctors outright abandoned patients on long-term opioid therapy. These patients with complex disabilities became viewed as legal liabilities. Doctors who prescribed beyond these limits faced invasive surveillance, raids, and prosecutions by the Drug Enforcement Administration and local law enforcement.
As patients were cut-off and left without care, doctors and researchers began tracking an uptick in suicides in the pain patient community.
Writing in Reason, Jacob Sullum pointed out that the new revised guidelines mention the phrase “patient abandonment” eight times, and includes this critical takeaway for would-be prescribers: "Clinicians should not abandon patients." Sullum writes, “That gives you a sense of the disastrous impact that the original version of the CDC's advice, published in 2016, had on medical care.”
Indeed, the authors of the influential 2016 guidelines recognized that their recommendations were being widely misinterpreted. “Unfortunately, some policies and practices purportedly derived from the guideline have in fact been inconsistent with, and often go beyond, its recommendations,” the authors wrote in a 2019 article for The New England Journal of Medicine.
After the 2016 guidelines published, some patients and doctors sounded the alarm and started organizing to air their concerns. So, I wanted to see how pain patients, advocates, and doctors reacted to the new guidelines. Have their concerns really been heard? Are the new guidelines any “softer” and is this really a “victory” for the pain patient community? Let’s find out.v
I put out a call for reactions on Twitter and here are some of the highlights:
A shared theme emerged across many of these reactions: Some patients felt relieved that something is finally changing, but most are skeptical that this revision is enough to undo the harm that’s been done. Some patients wanted to make it clear that they knew from the start, back in 2016, that issuing guidance on opioid prescribing would a) not lead to fewer overdose deaths and b) lead to more patient suffering.
TameraLynn Stewart, a pain patient and advocate in Oklahoma, told me the overall “tone” of the revisions is much better, but she still has some lingering doubts:
“I just don’t think there is enough focus on how to end the harms already created. Until they put out a plan to disseminate the new info… tell doctors to pretty much go back to treating each patient individually and adequately!!” - TameraLynn Stewart
Peter Pischke, a writer and pain patient, told me:
“Overall, these are decent improvements. This document is better than I think most of us were expecting. Removing the [dose] threshold was necessary; removing the hard limit on acute pain is also helpful; less helpful is the doctrine about opioids not being first line; and in some cases, uses of last resort, are not helpful, like saying no opioids for migraines. What’s also not helpful: it didn't do much to push back on how [the original guideline] was misused. I am worried the prohibitionists are going to push it over.”
Kate Nicholson, who leads the patient organization National Pain Advocacy Center, and whose input was sought during the revision process, told The New York Times:
“We went from one side of the pendulum, with overly liberal prescribing of opioids, and that did harm, to just looking at gross drops in prescribing without looking at individual needs. This is closer to a Goldilocks solution where chronic pain is not a monolith.” - Kate Nicholson
And here are some reactions from doctors on the front lines of this issue. Dr. Stefan Kertesz gave his thoughts in a thorough Twitter thread:
Dr. Zackary Berger listed some of his lingering questions and concerns in a thread:
Chad Kollas is a Palliative Medicine Physician in Florida:
Below, clinical pharmacist Dr. Amarquaye offers his take the new prescribing guidance, focusing on the new dosing benchmarks:
Overall, this community of doctors and patients seem much more hopeful than they have in recent years. Still, they’ve been burned by the medical system too many times in the past, and as a result, their trust is broken. In their eyes, the CDC will have to do more than revise the guidelines to repair that trust. Patients I spoke to want to see the CDC shout from the rooftops that the 2016 guidelines were scrapped, and they want an acknowledgment of the harm that’s been done to patients and a roadmap for how to make things right.