Julie Anne Feinstein had overcome a lifetime of adversity when she began taking daily medication for pain 10 years ago at age 68, prescriptions that would eventually land her at the center of the nation’s opioid crisis.
She had survived paralyzing childhood polio to become a skiing, mountain-climbing teenager near her home in Oregon. When post-polio syndrome struck at age 36, causing muscle weakness, fatigue and pain, and making her work as a classroom teacher difficult, the mother of four earned a degree in special education so she could work with visually impaired students, a job she could do while seated. When she was 62, a blind student accidentally knocked her to the ground, an injury that led to a spinal fusion — her second — and ended her career. Unable to manage daily tasks, Feinstein moved to an assisted living center in Portland and began using an electric wheelchair.
Opioids entered her life while she was undergoing chemotherapy and radiation for Stage 3 lymphoma. Feinstein felt pain so great she was unable to get out of bed.
Her doctor prescribed oral morphine to be taken three times a day and oxycodone “as needed.”
For seven years, Feinstein took the same dose. It helped her lead a robust life in the assisted living center, she said. She organized a knitting group, learned Hebrew and studied for her bat mitzvah, which she celebrated at age 75.
For decades, the medical community viewed opioids with caution when treating chronic pain, which affects 25 million Americans and is defined as non-cancer daily pain that lasts longer than three to six months.
The country’s first opioid crisis more than a century ago — when doctors freely prescribed morphine, laudanum and heroin for pain — had left 1 in 200 Americans addicted, according to the President’s Commission on Combating Drug Addiction and the Opioid Crisis. That eventually led to a backlash and a reluctance to prescribe opioids — a reluctance that persisted until about 30 years ago, the commission reported last year.
Then several factors, including a mischaracterization of the addictive nature of opioids for pain patients, pharmaceutical industry influence, pressure on physicians to address pain more aggressively, and a lack of medical and patient education pushed the pendulum back to medication, the commission said.
By the late 1990s, opioid prescriptions to treat chronic pain had escalated, driving a decade and a half increase in addiction and 200,000 deaths related to prescription opioids between 1999 and 2016.
With the nation now fighting to reverse a drug epidemic fed by prescription opioids, policies to curtail their use and supply come from multiple sources. New prescribing guidelines from the Centers for Disease Control and Prevention, state legislation, medical board sanctions and policy changes by managed-care and prescription plans have been enacted to curb opioid abuse. But patients such as Feinstein say they feel the changes have ignored the treatment of their pain and have made it harder for many to find care.
The first sign that Feinstein’s treatment was in jeopardy came three years ago, when her primary-care doctor told her she could no longer prescribe opioids for chronic pain because of a change in clinic policy. She would need to find a pain specialist.
It took six months “of hell” — pain, worry and several rejections — Feinstein said, before she found a specialist 20 miles outside Portland who would take her as patient and maintain her prescription. Now, she says, she is sitting on a time bomb.
“I could be given a 30-day notice of the closing of this clinic at any time,” she said.
Her doctor, Gregory Gullo, said he is not worried about his ability to keep his practice operating. He said he follows recommended protocols such as random urine checks to make sure patients are not abusing drugs.
And there are advantages to stricter rules on prescribing opioids, he said, because now he is better able “to focus on function and lifestyle rather than on pills.”
But he understands the anxiety of patients with serious conditions who are dependent on medication. Some primary-care doctors are restricting opioid prescriptions to five days of pills, he said, and others are refusing to prescribe them at all.
Patients with multiple sclerosis or post-polio syndrome, such as Feinstein, “are subject to exactly the same pressures as people with less serious conditions,” he said.
A rehabilitative specialist in Pennsylvania who has been in practice for 25 years said she has stopped taking new patients and may drop current ones because of fewer options for treatment, more time-consuming electronic record keeping and more difficulty figuring out what’s “by the book.”
“If I am fed up and willing to give up, who is left?” she said, speaking on condition of anonymity for fear of being audited.
The opioid epidemic is “scooping up and confusing the lives of people who have a real need for this medication with those who are abusing, and that is tragic and that is wrong,” said Feinstein’s daughter, Amanda Feinstein.
“She has a degenerative disease,” she said of her mother’s post-polio syndrome. Without pain medication, “everything stops.”
Jim Shames says that when assessing the credit or blame for the tighter oversight by the Oregon Medical Board, which licenses doctors, a lot of people point the finger at him. Shames formed Oregon Pain Guidance in 2011 in response to the high rate of overdose deaths he reviewed as medical director of Jackson County Health and Human Services.
People were taking very large amounts of opioid medication, sometimes multiple drugs for pain from different prescribers, and “for whatever reason pushed themselves over the edge one night and nobody noticed, and they just died.”
His group organized monthly meetings with hospitals, insurance companies, mental-health professionals and experts in chronic-pain care to push for local and state guidelines.
“As a public health person looking at populations, we have to reduce morbidity and mortality, and there will undoubtedly be some people who have a hard time in the process,” he said.
But the situation has proved to be complex, Shames acknowledges. In January, his group held a meeting with 50 health-care providers and the director of the state medical board. The purpose was to address the frustrations of physicians treating patients whom they had inherited from other doctors or for whom they could not taper a high dose or switch to other medications, in part because patients feared withdrawal.
Patients need a medical home, Shames said. If physicians have a plan built around safety and continually assess the patient, “the board is unlikely to get you in trouble,” he said. But even patients doing well with pain on high-dose opioids “are really not safe” from overdose, he said. They would do better on buprenorphine, he said, which can address pain and withdrawal symptoms but has a lower risk of misuse because it does not create the same level of euphoria and respiratory depression.
During their six-month search for a pain specialist, Feinstein’s family turned to Myra Christopher, the recently retired director of the Center for Practical Bioethics, a nonprofit based in Kansas City, Mo. Christopher also directed the Pain Action Alliance to Implement a National Strategy, or PAINS, a group focused on implementing the goals of the federal government’s plan to improve treatment of chronic pain.
She is “agnostic” on the use of opioids for chronic pain, she said, but concerned that patients such as Feinstein are “collateral damage” in the effort to combat the opioid crisis.
“I want people who have chronic pain to have access to comprehensive chronic-pain care, which may or may not include opioids therapy, interventional procedures, surgery, acupuncture, physical therapy, massage, biofeedback and behavioral health,” she said.
For four years, PAINS members, including patients and their families, have tried to change what Christopher called unfair treatment of patients who are often considered “malingerers and drug seekers.”
With Christopher’s retirement, the Academy of Integrated Pain Management, an advocacy group for integrated pain care, will take over the PAINS website and continue its agenda, said Bob Twillman, the executive director of the academy.
But some pain-patient advocates and organizations are viewed with skepticism if not distrust because a number have received money from pharmaceutical companies. A report from the Senate’s Committee on Homeland Security and Government Affairs found that opioid manufacturers “Purdue, Janssen, Mylan, Depomed, and Insys provided at least $8,856,339.13 in funding to 14 outside groups working on chronic pain and other opioid-related issues between January 2012 and March 2017.”
The Center for Practical Bioethics and the Academy of Integrated Pain Management, along with the U.S. Pain Foundation and the American Academy of Pain Medicine, were among the organizations named.
Twillman said the Senate report is too broad and ignores how individual organizations used contributions from manufacturers.
Andrew Kolodny, co-founder of Physicians for Responsible Opioid Prescribing, said policymakers misunderstood the opioid crisis for years because chronic-pain advocates told them, “ ‘Don’t, in your effort to stop drug abusers, penalize pain patients. Don’t take actions that involve less prescribing of opioids, because that would make the problem of untreated chronic pain worse.’”
The argument that there were two distinct populations caught in the opioid crisis was “phony,” he said. “Thousands of people with pain have died from overdose.”
Doctors are in the middle of a turnabout, said Matthew Wynia, director of the Center for Bioethics and Humanities at the University of Colorado Anschutz Medical Campus. For 20 years, physicians were told, often by bioethicists and patient-empowerment groups, to believe patients when they said they were in pain and to do what the patients wanted.
Now, he said, the bioethicists and others have a new role: to help “one side understand where the other side is coming from, that the opposing force isn’t evil but coming at this with a set of values and preferences and priorities that need to be understood to find some sort of common ground.”
New methods of treating chronic pain are being studied. Paul Chelminski, a professor at the University of North Carolina School of Medicine, is part of a $9 million study considering how cognitive behavioral therapy and motivational interviewing — helping patients figure out how to achieve their goals — might help reduce the use of opioids.
The aim, Chelminski said, is to “retrofit chronic pain management to what it should have been 20 years ago.”
It will take more than five years to know the results.