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RESHAM, 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

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t’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?

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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

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orty-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

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s 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.

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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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  • “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.”
    Actually Oregon health officials have no idea if their first experiment in pain treatment removal is a success, a failure or anything else: there has been no follow up to determine what that policy did to the thousands that they are experimenting upon. Now they want to experiment upon an unknown further number of thousands (not even Oregon knows how many) of patients. Even lab rats get greater protection than this.

    The composition of the Task Farce is absurd; not one individual is free from blatant vested interest, nor do any of them even make a pretense of evaluating medical evidence; they ignore strong recommendations in papers in their own bibliography that while adding “alternative therapies” may help some people with some type of pain (& probably wouldn’t hurt), NOT ONE called for eliminating pain medications entirely. They’re not even pretending to examine anything but their own preconceived ideas.

  • Why are you punishing the people who need these medications?
    This another case of responding to a problem by punishing everyone. The people taking medication for pain they have is related to physical trauma.
    Don’t you think they have tried physical therapy, chiropractic treatment, massage, and tens therapy before having to resort to pain medication?
    Do you think they want to become dependant on drugs?
    These are NOT the people you want to punish. Neither are the legitimate doctors trying to help patients.

    There are devious persons who manage to invade every occupation.
    Law officers have , and continue to,
    track down the criminals that have entered this occupation. So they should. This is one of the legitimate responses to the problem. Why jump to patients who are in pain and not permit them to live productive lifes because criminals in the field AND on the street are making money selling medication? Once again you are punishing the people who need these medications.
    Many of the heartless proponents of the tapering off to no medication idea are chiropractors and others who serve to gain from this so-called solution. They will be surprised to find that these patients have already been there.
    Yes, you will have people in much pain who will be desperate. They won’t know what to do.
    I wonder if you will then create criminals whom you should have tracked in the beginning.

    People buying large quantities of pain pills to get high went to criminals to purchase them. As I said, legitimate doctors were not prescribing these amounts. Legitimately hurting people in pain did not go to criminals to be treated. They went to their doctors.

    We judge a society partially on how it treats its sick and infirmed. Our physicians treat our sick.
    We drag our physicians off to review boards or cut their ability to practice.
    We leave our sick helpless and without treatment.

  • Notice how the Failed Back Surgery was not the issue, nor was the intractable chronic pain that went along with it. There is very little research on these “Failed Surgeries” by design. The Industries decided that kind of research was unnecessary and unprofitable. They chose to attack people who had these Failed Surgeries, instead of do any science or objective research. The Industries keep the stories of people with these botched surgeries out of the news. They re-framed the injured patients as Addicted low lives.

    Every Surgeon, Psychologist, or Hospital Administrator that looked the other way or encouraged this scourge is responsible for the deaths, despair and agony they created. This is Gas Lighting on a massive scale. The same Psychologists that made Torture palatable, even though it does not work, were behind this. The Industries decided that providing appropriate medical care was not generating enough profit. Taking away pain medications from people with genetic disorders, “Failed Back Surgeries, and work injuries, is much easier when they are all painted as low life drug addicts. They did this to injured and older Veterans too, and the data shows the suicide rate is increasing. There is Zero evidence that letting people with failed back surgeries, war injuries or congenital disorders suffer, will reduce illicit drug use. There is no science behind any of this, it is merely part of the almost Genocidal response to low income people and the “Losers” that the administration is targeting.
    I used to believe that something like the Nazi Genocide could not happen here. Now this is just the tip of the iceberg. There is something really ugly going on here, and this outlet has fed it. The current media coverage is pretty clear, that it is alright if it protects industry profits. Plenty of Physicians ignored science and human decency when they prescribed these drugs or denied care for spinal injuries in the first place. It was cheaper of their employers to ignore people with spinal chord injuries, especially the low income ones. People who worked hard every day were given drugs or told to walk it off, as their spines crumbled. Whenever possible they butchered these people with spine surgeries, done by any hack available. Physicians were silent as they denied care to post surgical people with serious injuries and chronic pain. It was more profitable to re label the people injured by the Medical Industry as craven drug addicts. The device industry found that this was profitable too.
    This is a Criminal Conspiracy, where the criminals wrote the Laws. The profiteers undermined our healthcare system, and made sick people the criminals. In America we have the best Laws money can buy. If anyone has any doubt, they can look at the monstrosity in the White House.

  • Oregon will allow pain patient’s to suffer. While Oregon does little to combat the real crisis, which is Meth, Heroine, Alcoholics, and Weed ! I have proved to my many dr’s I have never abused my opides !!

  • Most pain patients do not have a history of drug abuse. As for me, the medication allows me to work, which gives me access to medical care. Oregon is rolling the dice with patient lives. There is already a list of chronic pain patients who committed suicide after losing access to meds. Life without quality of life is a living death. People will die. Don’t censor me, because I am trying to save lives. Mothers, fathers, sisters, brothers, children, US Veterans. Denial of pain relief is a violation of human rights international law. And no, the alternative treatments are not evidence-based recommendations and so denial of treatment is still illegal. My mother was actually harmed by a chiropractor. My doctor will not recommend a chiropractor. Avoid, she says. These specialists are not even appropriately regulated… they advertise that they can cure asthma. Sure, the very people to benefit are the ones on the panel. This is wrong. These people making this decision should watch the obituary columns and wonder who died because of them. Who couldn’t take another day of not being able to participate in family life in ways they feel is meaningful? Who had no options that worked? People who never abused medications are being denied care. SHAME!!!!!

    • Thank You Heather.
      This alternate fact based “treatment’ is killing us. I had a chat with a physician, who refused to say anything about Chiropractors, apparently they have justified people being taken by these Quacks, because they believe it might prevent opiate addiction. That seems to be the underlying false narrative. A stick in the eye is better than opiate addiction. Of course no research was ever done to prove it, or even to count the dead, disabled and broke people who tried Chiropractors for pain. We are in a Post Fact world now, where the profiteers call the shots on dealing with the opiate epidemic. They deliberately conflated chronic pain patients with drug addicts for a reason. They had to silence people with pain, and avoid anyone having any empathy at all. These people in Oregon chose to target the low income people on Medicaid, this is a theme in the US. They went after Veterans a few years ago, and are still dissembling on the increased rates of suicide.
      The Device Industry and the Physicians that performed all of those surgeries that did not work, or caused increased pain, or even death, are behind this. There is no evidence that taking away pain medication from legitimate patients has any effect of rates of drug addiction, or Heroin overdoses, but they are continuing to do it. they want to take attention away from the corporations that profited, while Americans died. The industry insiders had to find a convenient scapegoat. There is no data on the number of people injured by Chiropractors, or other alternative medicine for a reason. They are able to exploit these data gaps to deceive the American public.

  • I have severe fibromyalgia that even affects my internal organs and eye muscles causing them to spasm. I also have a terminal form of lupus; have had 7 spine surgeries at lumbar and cervical levels and have a bulging thoracic disc. I’ve had multiple knee surgeries, most recently a gastly revision of a left knee replacement. I also have RA and very painful stage 3 chronic kidney disease. Because of the medication regimen I’ve been on since 1998, I’ve been able to function and take care of myself. Until the correct combination of meds was determined, I was bedridden. I also suffer from frequent migraines, both “normal” and occular. Over the years I have been able to reduce the strength of my Norco because I was afraid of the Tylenol and have voluntarily eliminated one of my 2 muscle relaxers. The fibromyalgia is so bad that it even affects the muscles that enable me to breathe and I have diaphragm spasms. I’ve tried every non-medical treatment including chiropractic, acupuncture, electronic acupuncture, Ayurveda, physical therapy, massage, diet, supplements and I’m sure I’m forgetting some. My meds are strictly monitored by both my doctor and me. I only have one prescribing doctor because it’s safer to work with someone who knows every medication I’m on. I resent people who sit in offices, never having lived with the kind and amount of chronic, excruciating pain that I do and make determinations as to what is appropriate treatment for someone whom they’ve never met, much less examined. Yes, there are some unscrupulous doctors and patients, but one size does not fit all. So, rather than make sweeping rules for a Medicaid patients, this should be done on a case-by-case basis.

  • This is such a great example of politicians not thinking one step ahead of their policy change.

    In theory this is a good idea. In practice this is just going to push more patients who really want this to the secondary / black market. We already know there is a huge black market.

    • JC; Sorry, but instituting a blanket ban on an entire class of medication for a huge population of people with widely diverse & complex conditions is not a good idea in theory or in practice, any more than if they declared that every person with any kind or source of pain MUST take opioids. This is “one-size-fits-all” medical “care” taken to the most absurd and evil limit imaginable. The people on the task farce stand to gain directly from their own predetermined policy; even if one accepts their idea of enacting a policy that is directly negated by their own bibliography, this is so blatantly a conflict of interest that it’d be funny if it weren’t so evil.

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