GRESHAM, Ore. — There is little Laura Dolph has not tried to escape her physical pain. Tylenol, occupational therapy, oxycodone. A chiropractor. Transcutaneous electric nerve stimulation. Methadone, Advil, physical therapy, Tylenol with codeine. A prescription fentanyl patch that didn’t work because its adhesive made her break out in hives.

For almost two years, heroin. Twice, in the mid-1990s, suicide.

But after decades of drugs and appointments and surgeries, mercifully, Dolph says she has found pain management that works, that keeps her stable. When she first wakes up, a methadone pill. When the pain wells up in her lower back and begins its creep down to her legs — left, then right — an oxycodone pill, and sometimes another as needed.

Dolph, 57, knows the drugs are imperfect tools. She has seen firsthand the potential for addiction. But she also believes, moving forward, that she can manage the risk. “I’m extremely cautious with it,” she said, especially the methadone. “It scares me.”

These days, Dolph has another concern on her mind. State officials are considering a first-in-the-nation proposal that would end coverage of opioids for many chronic pain patients who, like her, are enrolled in Oregon’s Medicaid program. Over just 12 months, beginning in 2020, they would see their opioid doses tapered to zero.

The state declined to provide an estimate of how many pain patients the policy could affect. But nearly 1 million Oregonians are enrolled in Medicaid. More than 10 percent of adults nationwide have experienced pain every day for the previous three months.

“We believe Oregonians in chronic pain deserve safe and effective pain management,” Dr. Dana Hargunani, the chief medical officer of the Oregon Health Authority, said in an interview. “And at the same time, we’re concerned about overdose and death, and we believe pain patients have been put at higher risk with regard to overprescribing.”

An army of those patients here is convinced that plan will do them vastly more harm than good. They say cutting off access to prescription painkillers could lead some patients to seek opioids by any means necessary — or even turn to heroin, which is often tainted with deadly forms of illicit fentanyl. Other patients, they say, could endure the return of once-debilitating pain. Some could die from suicide.

Now, hundreds of chronic pain patients, most of whom never imagined they might need to protest to preserve what to them is a basic form of health care, are fighting to ensure they don’t become a population-scale experiment.

PDX Opioid protest
In Wilsonville, patients protest for keeping opioids available to Medicaid patients at a hearing to discuss future coverage of pain therapies under Oregon Medicaid rules. Natalie Behring for STAT
Laura Dolph
Dolph displays the signs she brought to the hearing. Natalie Behring for STAT

It’s not the country’s first attempt to restrict opioids — other states have worked to improve their drug monitoring programs and passed legislation capping first-time opioid prescriptions for acute pain at three, five, or seven days. Even the federal government proposed sharply limiting the dosage of opioids that doctors prescribe Medicare patients, though they ultimately abandoned that plan when it was widely opposed.

But Oregon’s proposal goes dramatically further — no other states or providers have such extensive proposals to remove patients who have not exhibited signs of addiction or other negative health indicators from their pain medication.

Backers of the proposal have expressed hope that it could serve as a model for the health care system in the entire state, including private insurers. Pain patients fear it could become a harbinger for future efforts across the country.

In Oregon, at least, the state could approve the change as soon as October. Outside experts have cast a skeptical eye at the proposal, assuring one another that a chronic pain task force considering it, one that includes pain doctors and other physicians, would not let it become standing policy. A spokeswoman for the state’s health authority, however, pointed to a similar, recently enacted policy for lower back and neck pain as precedent.

The controversy has brought together an unlikely crew of protestors, including many in wheelchairs and in walkers, who, at 7:15 on a recent Thursday morning, erected a tidy encampment outside the windows of a community college lecture hall here. A security guard eyed them warily from inside, where an obscure committee would soon hear the state’s proposal to end coverage of opioids for chronic pain.

Among their signs: “Death with dignity is a law: What about LIFE with dignity?”

Dolph, who has a rare and painful disease known as porphyria, along with lasting back problems from a 1999 car crash that wrecked her royal blue Pontiac Grand Am, sat in the lecture hall alongside dozens of pain patients who, like her, believe they have regained control of their lives thanks to the drugs that control their pain.

Each used their time in the lecture hall to offer impassioned speeches, accented alternately with tears, shouts, shakes of a pill bottle, uniformly opposing the policy change.

Again and again, they reminded the committee members that they had not yet fully grappled with the question central to their proposal: Is continued reliance on opioids for chronic pain more dangerous than forcing patients off them?

Experts say the science supporting either argument is extremely limited.

“What is notably missing is any review of any literature regarding the centerpiece of their proposed policy: Forced opioid taper to zero for all persons,” said Dr. Stefan Kertesz, a pain and addiction specialist at the University of Alabama, Birmingham, School of Medicine.

Some science has been conducted on opioid tapers in general — but typically from high to moderate doses. And Oregon officials cited one recent study that suggested pain intensity, on average, does not worsen after discontinuation of long-term opioid therapy.

A recent systematic review of dose reduction and discontinuation found more evidence was needed across the board: both to evaluate the belief that forced opioid tapers can increase suicidality — and to evaluate the overall outcomes of such a practice.

While the policy is intended to reduce overdose risk, recent interpretations of overdose numbers have shifted the conversation, with some analyses suggesting that as many as 80 percent of deaths involving some prescription opioids also involved other drugs.

In the context of whole-population interventions to reduce opioid prescriptions, the reviews authors wrote last year, “we identified no prospective studies of mandatory, involuntary opioid dose reduction among otherwise stable patients.”

In fact, authors of such studies have acknowledged a concern that the opposite would happen: that involuntarily tapers to a dose of zero can increase suicidal ideation and action; can increase drug-seeking behavior for black-market prescription opioids and heroin; and can lower quality of life.

This, Dolph said, is precisely her experience. She insists prescription opioids have never put her in danger. It was the lack of access to drugs when she had no insurance that drove her to illicit drugs, she said. And in her mind, the illicit drugs were only ever another form of pain control.

Her doctors admit, too, that the combination of prescriptions is a red flag. But it’s better than the alternative, they said.

“I was always nervous that the combination of opiates and benzodiazepines I was prescribing was going to result in a harmful outcome,” said Dr. Ginevra Liptan, who treated Dolph for chronic pain during her residency in internal medicine at Legacy Health System in Portland.

“I was able to taper her down significantly on both to minimize harm,” she added. “But I felt like the greater harm would have been if I’d completely taken away her opiates without anything else to give her. I think she probably would have killed herself.”

“I felt like the greater harm would have been if I’d completely taken away her opiates without anything else to give her. I think she probably would have killed herself.”

Dr. Ginevra Liptan, Dolph's doctor at Legacy Health System in Portland

The possible threat to patients isn’t the only problem activists have with Oregon’s proposal. They caution, too, that it is being driven at least in part by the medical philosophies of some of the panel’s members.

Under the proposal, patients who rely on opioid therapy would shift to non-pharmacological therapies like chiropractic care, deep tissue massage, and acupuncture.

The replacement therapies have limited evidence supporting their use; they are solutions that might work for some but that are a far bet from being universally effective.

While some pain treatment experts are praising the decision to cover those interventions for the first time, they caution that it shouldn’t come at the expense of coverage for opioids.

And, the activists say, it shouldn’t come because the chronic pain task force that is writing the proposal includes three acupuncturists and a chiropractor. (An Oregon Health Authority spokeswoman said the task force composition aimed “to represent the variety of clinicians who would be involved in the management of chronic pain.”)

Already, activists opposed to the proposal have secured one concession on behalf of chronic pain patients — an admission that not all forms of pain care are created equal.

“Evidence is inadequate,” one doctor on the committee wrote in a June report, “to support Tai Chi.”

Oregon Medicaid hearing
Amanda Siebe (left) and other patients that take opioid medication for pain management attend the hearing in Wilsonville. Natalie Behring for STAT

Forty-two thousand Americans died from drug overdoses involving opioids in 2016. Hundreds of cities, states, counties, and Native American tribes are suing manufacturers and distributors in a consolidated federal case in Ohio, accusing the companies of knowingly downplaying the drugs’ addictive properties and dumping millions of opioid tablets into towns that could never possibly have needed so many.

On its face, the instinct to aggressively reduce opioid prescriptions is a logical one — especially in Medicaid populations, which are prescribed opioids at a disproportionately high rate and are at a greater risk for overdose than the public at large.

Oregon says the status quo — keeping thousands of vulnerable patients on high doses of drugs now deemed dangerous — is untenable. Health officials there say they have achieved similar success recently by ending coverage of opioid therapy for some forms of lower back and neck pain.

Some recent studies have also called into question the value of opioids as a mechanism for addressing chronic pain. Current guidelines from the Centers for Disease Control and Prevention say only that there is insufficient evidence to draw any conclusion, and that doctors should weigh the drawbacks of tapers against the drawbacks of remaining on opioids long-term.

“We know that there is risk to long-term opioid therapy,” Hargunani said. “We want to make sure that there are non-pharmacological options that are evidence-based that are available to patients. The proposal purposefully includes multiple considerations, all together, trying to provide a more effective and safe treatment.”

The state’s overdose rate, as of 2016, was roughly half the national average. The state’s opioid prescriber rates, as of 2015, were slightly higher than the country as a whole.

“It is important to note that this policy would not be universal,” an OHA spokeswoman wrote in an email. “If doctor/patient felt that the taper was inappropriate because of the specific circumstances and comorbidities for that patient, an exception could requested and made by the plans.”

The proposal also would not apply to cancer pain, sickle cell disease, or rheumatoid arthritis.

“Our proposal is to provide our members with a menu of safe, effective services, such as yoga and acupuncture, that can be tailored to their personal needs,” Hargunani said.

And there’s a reason state officials don’t necessarily trust the patients who are opposed to tapering. Pain and addiction doctors often find it difficult to determine exactly why pain patients experience such immense discomfort during and after tapers.

On one hand, patients had original symptoms causing debilitating pain — a back surgery, shrapnel embedded deep in a knee since the Vietnam War. On the other hand, patients with opioid dependencies are likely to experience symptoms of withdrawal when their treatment is reduced or eliminated. Pain is common, but so is ambiguity about its source.

Nothing about the story, or the debate, is simple. Dolph is a complex patient with a rich history of procedures and diagnoses that her doctors say justifies her aggressive pain treatment strategy. She also, in the darkest moments of her life, has sought out heroin, battled depression, and even developed a spinal infection in the wake of her injection drug use.

It is exactly these behaviors that Oregon’s Medicaid program says it seeks to prevent by ending coverage for opioids, full stop.

PDX Opioid
Dolph has two sizable plastic containers under her bed that contain numerous medications she takes daily. Natalie Behring for STAT

As hard as she is fighting to keep them, Dolph knows the “bucket of meds” she keeps on her nightstand is the least of many evils. But what other option does she have?

Sitting inside her home on an uncharacteristically sweltering August evening — the porphyria makes her skin sensitive to heat and light — she showed off X-rays displaying the six screws and two rods connecting her L4, L5, and S1 vertebrae, the lifesaving relics of a car crash as she drove her daughter home from school.

Even after a second spinal fusion surgery last year required a temporary quadrupling of her dose — “they treated the pain correctly this time,” she said — Dolph does not consider herself to be anywhere near the downward spiral of dependency that she has experienced before.

Sometimes, Dolph said, she forgets to take her methadone. How could she be addicted to a class of drugs that she sometimes forgets to take?

Her ex-husband and her daughter aren’t so quick to forgive her drug use, and with good reason.

The medications — or her struggles to replace them when she went without —wrecked her 27-year marriage. They caused her to gain more than 70 pounds in a single four-year stretch. Six months after her first spinal fusion surgery, when she felt her pain had not been adequately addressed, a detective who had been investigating her for falsifying a date on a pre-written prescription cuffed her in a Safeway parking lot. She spent a night in a Vancouver, Wash., jail and a year on probation.

“There were multiple years: She didn’t call me on my birthday, on Christmas,” her daughter, Heather Steinmann, said in an interview.

But even she acknowledged her mother is better off with the pills than without them.

“When it’s been monitored, she’s been doing great,” Steinmann said. All of Dolph’s problems, she said, stemmed from lack of access.

“That was all because her pain medications were cut off, and she went to street drugs,” she said. “That’s how I view it. If you don’t have one, then you go to the other.”

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  • As a former chronic pain patient, suffering for years with undiagnosed ( or not being diagnosed properly), with both rheumatoid arthritis, and finally cervical radiculopathy, l eventually got MRIs confirming, my debilitating pain. A spinal fusion did remove that pain, but knew the 5 years I suffered,taking up to 20 ibuprofen a day, caused permanent damage to kidneys, and the lining of my stomach. My psychiatrist, ordered these tests, and referred me to a team of clinicians, among them a physical therapist, neurologist, and neurosurgeon. I took opioids for 2 years and they saved my life. That was 2015.I had excellent insurance, with many doctors involved. No opioids are needed from me today. Became a chronic pain patient advocate, emphasising a good diet, exercise, and awareness to others with chronic disease states. Please answer me, why for 4-5 years,” The Opioid epidemic”, that CDC reported in 2016,is not challenged for it’s faulty data? Heroin, street laced Fentanyl compounds, were more the cause., Of the ” Opioid epidemic. Please check with CDC, for their redacted 2016 report. Thank you for article.

  • Thank you for this comprehensive article on chronic pain and opioids. In December of 2017 my morphine was stopped. The 1 mg daily dosage of Clonazapam was stopped at the same time. I was taking 300 mg of morphine daily for the pain of Charcot-Marie-Tooth type 1b for 15 years. I had no physical effects except a reduction in pain…it was like taking Tylenol. No high. Therefore, I never once requested a prescription before it was due to be filled.

    When they stopped the morphine and Clonazapam I went into an immediate withdrawal that lasted over 8 months. I slept about 100 hours in that time period. I did wear a fentanyl patch, though it’s dosage was reduced each month until it stopped at the end of the 8th month. A month later I took 62 10mg oxycodone tablets that had been prescribed for breakthrough pain when my withdrawal began. I had saved them so that when the pain was most severe I would have something to get through it, knowing those few pills would have to last me the rest of my life.

    Suicide was attractive at that time. The paramedics revived me 15 minutes before my death. I was in the ICU for 2 days on a constant Narcan infusion and oxygen. When I returned home to continue caring for my husband, an advanced Parkinson’s patient, I was angry, depressed, confused by a medical community who refused to uphold their oaths. And to put icing on this cake, I received a letter from my local hospital that I would never again be prescribed – or administered – any opioid for any reason.

    The withdrawal exacerbated my disease significantly, so now I deal with more disability. It also gave me Restless Leg Syndrome and chronic intestinal problems. I use CBD, but it doesn’t alleviate much of the pain. Now I have to sit much of my day, as leg pain is severe with too much activity.

    For many years I had a decent quality of life and was able to sleep eight hours a night. Now I hope for six half-decent hours, and will only realize that by using a significant dose of cannabis oil, thc, and 30 mgs of Doxipin. More Doxipin might help with sleep, but I will not ask for an increase as I’m fearful they’ll take that from me as well, citing addiction behavior.

    “First do no harm.” They are violating their oaths and turning their backs on millions of people who suffer and just want to live with some quality of life. This is disgraceful and immoral, and the suicides produced by reckless and uncaring policies are rising. I may be there again one day. And they don’t care.

    Kathleen Connor

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