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.
“This is going to come as quite a shock to a lot of people,” Wendy said before the vote. 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.” She managed to function as a homemaker even after she was forced to quit her sales job in 2009 and go on disability, but 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.
Her husband, Larry Gordon, a retired postal worker, briefly but angrily testified on her behalf at a hearing in January before OHA’s Health Evidence Review Committee (HERC), as his wife of over 40 years sat quietly next to him.
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. These voluntary guidelines have been “weaponized” in drastic cut-offs nationwide and spurred a wave of suicides by chronic pain patients.
Larry, dressed in a blue ball cap, windbreaker and blue jeans, proclaimed, “Doctors are abandoning patients left and right. Look at what’s happening in the real world: there’s people dying. If you take opioids away from intractable pain patients, they only thing they have left is to go straight to suicide. I had to tell my children that their mom’s going to kill herself because no one else will help her.”
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.” Her pain is worse than before because the years of forced tapering worsened her MS, but at least she can visit her grandchildren, go to their recitals and ball games, take a shower. “I can live a normal 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. 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.)
Look, for instance, at the dangers facing people like Sierra Brown, a former nurse who once had private insurance but is now a disabled Medicare-Medicaid patient who was denied pain medication for her damaged spine resulting from previously undiagnosed lupus and Sjorgen’s auto-immune disease . She fears she will continue to be treated like a drug-seeking addict if the influential Medicaid policies are eventually voted in. (She and others point out that Medicaid’s prescribing standards also influence private insurers.) Yet 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?”
As of this writing, the OHA press office didn’t reply to repeated emailed and phoned requests for comment or rebuttal to the criticisms aimed at the now-tabled opioid proposal.
Oregon-style forced taperings continue unabated, with doctors across the country reacting to mounting pressure from agencies including state licensing boards and the DEA to slash their opioid prescribing — and then kicking out their chronic pain patients who have become known as pain or opioid “refugees.” 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 doesn’t stem primarily from what patients often see as sheer sadism on the part of officials. Instead, it’s 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. It’s an oft-told story: how Big Pharma companies and their crooked distributors ramped up an oversupply of opioid pills starting in the late 1990s, but much of the flooding of the marketplace was clearly fraudulent and intended to hook a new generation of substance abusers who already had addiction histories. Why else flood one West Virginia town of 9,200 people with nearly 21 million pills? Yet while prescriptions have fallen nationally nearly 20 percent since 2012, overdose deaths haven’t been stemmed at all, rising to as high as 70,000 deaths in 2017, more than AIDS, guns and car crashes killed people in any one year. Yet as few as 15 percent of opioid deaths today are due to prescription drugs, often stolen — even as 75 percent of new heroin users started by using “diverted” opioid pills they weren’t prescribed. 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. They are scrambling on their own in blog posts, on Twitter and Facebook to try to get other people — or even their own factionalized pain community — to fight back against the steamrolling impact of the Oregon Medicaid rules that will surely flatten them if the tabled rules come up for another vote. Amara is a disabled Medicaid patient and co-founder of the Oregon Pain Action Group. She is suffering from a host of severe disc injuries following a botched epidural during childbirth and lives in intractable pain. She told Tarbell, speaking anonymously for fear of retaliation, “It’s catastrophic and things are already so bad.”
She and others have been given a reprieve, but the specter of this cutoff still looms in the future if Oregon decides to go ahead with their plans in a future date. Pain patients know that their quality of life — if not their lives — are hostage to a delayed state vote. Tarbell will keep monitoring this proposed vote to see if it returns.
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.