The Real “Death Panels”: Oregon Medicaid planned to cut off opioids to chronic pain patients | Tarbell – By Art Levine – Mar 2019
At the height of the Tea Party and Republican campaign against the Affordable Care Act, the GOP raised a false alarm about “death panels” that would purportedly kill the disabled based on a subjective judgment and “pull the plug on Grandma.”
But to real grandmothers like 60-year-old Wendy Morgan, who has suffered excruciating back and neck pain in the wake of two botched surgeries, degenerative disc disease and severe pain from MS for decades, there’s now a genuine death panel: the Oregon Health Authority’s pain and evidence committees.
They were slated on March 14 in Salem to finalize mandated opioid cut-offs to zero for Medicaid patients with chronic back and neck pain conditions, plus fibromyalgia.
She had made preliminary plans with her husband to kill herself last spring after her opioid dosages were already cut 97 percent under pressure from government agencies. “I never did anything wrong, always followed the doctor’s orders, but I was treated like a drug addict.”
After her primary care doctor dropped her for using high doses of opioids and her pain specialist started a drastic taper in 2016, “I felt like killing myself,” she said. She went weeks without sleep, remained housebound, unable to even shower without agony and sunk into a deep depression. “It was an absolute nightmare,” she says.
If the plans are eventually voted in, the agency will target overwhelmingly disabled patients with 170 separate medical conditions that cause spine and neck pain for a total forced cut-off to zero opioids; these draconian limits go far beyond even the CDC’s 2016 recommended voluntary 90 Morphine Milligram Equivalent (MME) upper limits for new — not long-term — pain patients.
Larry and his family have been petitioning local stakeholders, including the Oregon Medical Board and local newspapers, in order to bring attention to chronic pain patients’ access to painkillers. Click Here To Read The Gordon Family’s Full Story In Letters
Fortunately, Wendy recently found through a network of pain patients a Portland clinician willing to quietly resume her high dosages of methadone and occasional oxycodone pills, amounting to a quite rare medication level of 1100 MME. It’s not clear how long this arrangement will last, but for now, she says, “This nurse practitioner saved my life.”
Now that the Oregon panel has tabled the vote, she can breathe a sigh of relief if her other supply of medication fails — for now.
That option was about to be closed off to a significant portion of patients –variously estimated between 60,000 and 80,000 chronic pain patients — who are part of the 25 percent of all Oregonians who are on Medicaid.
This latest delayed Oregon action flies in the face of mounting alarms by three former White House drug czars and over 300 leading health professionals and academics who warned in an open letter to CDC and Congress about the dangerous, unintended consequences of the harsh crackdown on opioids for legitimate pain patients, as chronicled recently in The New York Times.
These professional critiques have been joined by over 120 pages of anguished testimony from patients across the country about the agonizing impact of the resulting hard-line approaches in their lives.
True, rigorous evidence that such policies are driving up suicides rates is relatively scarce, even though there are horrifying examples of patients like Jay Lawrence in Tennessee shooting himself on a park bench with his wife holding his hand.
The anti-opioid activists and agencies and the CDC itself refuse to study the outcomes of their “experiment”. They act as though getting every patient off opioids would solve the drug addiction and overdose crisis, but since patients aren’t really a part of it, these restrictions make no difference at all.
However, an important study published in 2017 in the peer-reviewed journal General Hospital Psychiatry found that veterans cut off from opioids after long-term use engaged in suicidal actions and thoughts at a rate nearly 300 percent higher than the overall veterans community, whose members are already killing themselves at a rate of 20 people a day.
Oregon’s proposed but now tabled actions are even more extreme than the CDC guidelines spurring such tragedies, says the organizer of that open letter, Dr. Stefan Kertesz, a noted addiction researcher and primary care doctor specializing in vulnerable populations at the University of Alabama at Birmingham.
“They’re gambling with the lives of a subset of patients,” he says.
“There’s something cruel in going after patients with these conditions: it’s completely untested and there’s no evidence that you can swap in yoga and cognitive therapy across the state for opioids.” (Note: Like Kertesz, most, but not all, of the hundreds of clinicians across the country protesting the national and Oregon opioid cut-offs actually don’t have a history of sleazy ties to the drug industry.)
Even patients like Sierra Brown — who while a disabled patient on private insurance was denied pain medications for her damaged spine resulting from previously undiagnosed lupus and Sjorgen’s auto-immune disease — fears she will continue to be treated like a drug-seeking addict if the influential Medicaid policies are eventually voted in.
…she has been given a reprieve of sorts: after showing up vomiting in agony at an ER last month, she was diagnosed with pancreatic cancer, but only after the admitting doctor first told her, “If you’re here for pain medications, we’re not giving you any.”
Now, she is viewed as a near-angelic victim of cancer, and was generously provided with all pain medications she needed to be taken every few hours, from Dilaudid to Tramodol. “Pain-wise, I’m fine,” she says, relatively speaking. “Their attitude totally flipped. It’s totally disgusting.” But once she achieves her hoped-for remission because they spotted her cancer early, “I’m scared I won’t be getting any pain medicines because of the law’s crackdown.”
In Oregon, making the case for keeping opioids away from patients like Sierra when they don’t have cancer, is the alternative medicine community.
Some of them don’t seem to be much more immune from conflicts of interest than drug company shills, critics say. In fact, the ad-hoc Chronic Pain Task Force, an advisory subcommittee that’s helping drive Oregon’s move to shut off opioids for pain patients, is dominated by holistic practitioners with a financial stake in ending opioids by hyping a smorgasbord of alternative therapies that have weak or limited evidence that they work for any chronic pain patients at all — let alone with that minority of long-term chronic patients who use opioids
Indeed, OHA commissioned the nationally respected Oregon Health and Sciences University (OHSU) to do a review of the skimpy evidence on the efficacy of tapering and alternative therapies.
In its rush to back alternative therapies as an “evidence-based” replacement for the removed opioids, the Medicaid agency brushed aside the OHSU findings that concluded the studies’ quality were variously “very low” for tapering, and “limited” or “insufficient” for the alternative therapies.
Even the agency’s own summary of the available evidence branded all of the holistic therapies, some with potentially major new funding streams, as having “no clinically significant impact” on long-term pain.
Instead, the agency seems to be relying in part on a 12-year-old survey of the personal opinions of an earlier OHA advisory panel that found these alternative medicine treatments as somehow having “fair” to “good” evidence for “moderate benefit.”
In addition, Kertesz asks about the OHA’s dismissive approach to the new OHSU review it commissioned:
“Why are they ignoring their own report that says there’s no evidence that a mandatory taper has been properly assessed, and certainly hasn’t been proven to be safe and effective?”
Human Rights Watch recently issued a stinging report condemning such actions:
“Many patients are involuntarily cut off medications that improve their lives or say they are unable to find a doctor willing to care for them.”
Yet Oregon is the only state — so far — that tried to move so decisively to adopt these potentially deadly practices as official state policies
One possible factor, argues University of Southern Illinois rehab specialist, Terri Lewis: The financially-strapped Oregon Medicaid system is moving under a Medicaid waiver to reduce spending and limit care for disabled chronic pain patients who merit palliative care but aren’t actually getting it.
This proposed punishing crackdown …is driven apparently both by a desire to save money and a well-meaning yet misguided, simplistic and wrong-headed response to the alarming rise of opioid-related drug overdoses, largely from illegally manufactured fentanyl — not legally prescribed pills
Kertesz has pointed out that today’s prescription drug dosage limits are a “funhouse mirror image” of the drug industry’s earlier propaganda to lower the “pain score” of patients and give out way more pills: it is still a focus on a number, not on the actual well-being of patients.
Meanwhile, Oregon’s chronic pain patients remain political orphans whose plight is largely ignored by people across the political spectrum.
Author: Art Levine is the author of the book Mental Health, Inc.: How Corruption, Lax Oversight and Failed Reforms Endanger Our Most Vulnerable Citizens, a contributor to Newsweek and a contributing editor of The Washington Monthly. He has also exposed a wide range of corporate and government wrongdoing for The American Prospect, Salon, The Atlantic, In These Times, The Daily Beast, Mother Jones, Truthout,AlterNet and numerous other publications.