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?

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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

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.

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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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  • when is someone who can make a difference stand up for us ? Opiod overdoses have hits new highs but its from patients seeking relief from the streets with heroin and fentanyl ..This is a witch hunt !

  • The time for persuading these self-serving aholes in the boards and legislatures is over. It is time to simply sue them, and force them to put on their (lack of) evidence for interfering with doctor-patient relationships on trial. Why isn’t anyone doing that yet? All the pro-treatment doctors certainly have the cash to pitch in for such an endeavor, whereas the patients generally dont.

    • Kimberly;
      I guarantee that many thousands (& more) have TRIED to get lawsuits going. The problem is, no so-called “civil rights” group nor individual attorneys will take any pain patient case. Money is undoubtedly part of the problem –chronic pain patients do not exactly have deep pockets. Many of us who have bombarded the attorneys & groups with pleas/demands/questions have the sneaking feeling that it’s not the only answer, but …could be paranoia talking. There is no question whatsoever that the ACL-Useless is eager to leap to getting addicts in prison their addiction treatments, and steadfastly refuse to have anything to do with law-abiding disabled citizens being denied basic medical care. Ditto for the major “civil rights” groups in Oregon: their response has been “We choose not to get involved in this issue at this time.”

      If you can find an attorney or group or anyone who’ll leap into the fray, you’ll have millions of CPPs with you. If you do manage that miracle, we’d love to hear how you managed it.

      There is a veteran who’s been working –on his own, as no attorney would touch him– for over two years now. Robert Rose Jr is fighting for vets & chronic pain patients everywhere, & a lot of us are supporting him in any way we can. Look him up; he always needs more helpers/money/anything. you can start here: https://twitter.com/robertdrosejr1?lang=en

  • All sanity has gone out the window with this! I underwent surgery and was given about 9 Norco. I came within 1/4 of an inch of hanging myself – the only thing that stopped me was I didn’t want my daughter coming home and finding me.

    We have moved dangerously close to Nazi Germany where the government held the power and the people did not. If we keep accepting it then the government will keep taking more and more rights. Get ready to fight! If you’re going to be forced to suffer then at least die fighting!

  • To Kelly: Buprenorphine is more expensive, but as demand for safe (no deaths used alone, without CNS depression issues) and effective (acute severe pain may be an exception) medication increases, the price will come down. Should not most pain be treated with buprenorphine? The stigma you mention keeps docs from using safe, effective, Schedule lll treatment for pain (for nearly 20 years). Managing yourself or family will only have stigma if you allow it to affect you. Don’t!
    Empathetic, knowledgeable docs explain that chronic pain management is about function, not pain, which will be better controlled as function improves, but not cured. Multidisciplinary Rx does help, doesn’t cure. Read “Evidence based Chronic Pain Management”, a British publication, to find out the other modalities scientifically proved to benefit enough patients, they are worth the money and effort to try.
    You are correct that many chronic pain patients need opioids, and that bup “doesn’t work for everyone”, but it is effective for most patients, dosed properly. I do agree with Dr. Lawhern’s blog.
    Dr. Bob Rust

    • “Should not most pain be treated with buprenorphine?”
      Well, no. This assumes that nearly every patient has the same metabolism, genetics, physiology, gender, pain condition(s), etc. That’s like saying everyone with high BP should be on the same drug or every diabetic should be on the same dose of insulin. That. Makes. Zero. Sense. I’m frankly appalled at the number of medical professionals who apparently are unaware of the vast differences in human beings. The recent spate of universal pain med dosages & “everyone should be on the same drug” is either evidence of a cataclysmic drop in overall IQ, physicians being hounded into or voluntarily joining the zealots (who have NO actual evidence on their side), and/or a spate of nationwide medical malfeasance. Or all of the above.

  • Apart from the understandable sarcasm of some of those commenting in this thread, it may also be useful to consider the input of medical professionals on this issue. Last week, the American Society of Anesthesiologists submitted a letter to the Oregon Department of Health, explaining their profound objections to any State mandated policy of required opioid tapering for Medicaid patients. There are simply no published studies indicating positive outcomes from mandated tapering of legacy patients. But there is ample evidence of potential and actual harms to patients. This letter amplifies on a second recent position taken by four past Presidents of the American Academy of Pain Management.

    The idea that non-pharmaceutical “alternatives” can substitute for opioids is likewise not supported in medical literature or science. As I have commented elsewhere on STAT, none of the proposed non-opioid therapies have completed large-scale trials or actually used as substitutes for usual therapy incorporating opioids or other analgesics. The most these alternatives might do – and that under careful oversight and frequent doctor-patient consultation – is to assist some patients to reduce their opioid dose levels IF THEY VOLUNTEER to do so.

    To sum up, the proposed mandates being considered in Oregon comprise nothing less than State-sanctioned medical malpractice and denial of appropriate care to people already in pain. In my personal view, any medical or Medicaid bureaucrat who signs such a draconian measure into State regulation should be fired for cause and then prosecuted for malfeasance and patient abuse.

  • What next? Diabetics are taking too much insulin so let’s taper them off. They can control that with their diet. High blood pressure pills? You don’t need those! Just lose weight and reduce your stress. Tylenol can damage your liver

    • joseph; Right! furthermore, people abuse insulin for weight loss & muscle building, so they really should just outlaw it completely, eh? Diabetics must merely exercise & eat properly, maybe listen to music & sniff aromatherapy. pretty much any med can be abused by someone somewhere, so all medicines should be banned. Walk, listen to music, bring out the leeches!

  • As I posted before, LC, Have your doc try you on Buprenorphine, combined with a multidisciplinary approach to your pain.

    • I once had a pharmacy balk at filling a prescription for buprenorphine. The pharmacist said that the doctor needed special training to prescribe it. That’s only true if it is prescribed for drug dependence not if it is prescribed for pain.

    • Dr Bob: many, many of us have done the “multidisciplinary” approach, some multiple times, have been educated out the wazoo on how to manage/cope with chronic pain. All the education & training in the world cannot completely eliminate the need for actual pain medicine for severe pain, and many of us have been stable for decades on a regimen of coping strategies & appropriate pain meds. Bupe doesn’t work for everyone & has about as many side effects as other meds. Plus it’s more expensive, & carries the stigma of ‘proving’ that the person taking it is an addict; further medical & emotional abuse & stigma is the LAST thing we need.

  • I have had 5 lower spine surgery’s being fused from L3 to S1 and I believe the surgery was unsuccessful because ever since then I have on average a pain level of 10 without a opiate to take. I have so many problems with my spine, today I’m going for a X-ray and a MRI they had to do surgery to remove all the hardware so they could do a X-ray and MRI, at one time I was on 350 milligrams a day way to much but I had no pain, now they are dropping me to 60 milligrams a day I have a chronic case of
    Spinal Stenosis, Neurothop, Arthritis
    4 pinched nerves and numerous problems with lower back I cannot have a life without the opiates I need at least 30 milligrams 4 to 6 times a day that is Ocycodin medicine my wife left me after 53 years because I’m useless I can’t go on vacation, go to a movie and she looks like a 45-year-old woman life is good for her but not for me,

  • When Florida began their war on opiates, cocaine and tranquilizers were the leading cause of OD deaths. It continued that way for for years. Yet tighter and tighter regulations were passed. Law enforcement flourished with all the money they got for their drug war. The same clowns who resisted government interference in health care when it came to providing affordable care, were first in line with their greedy fists out for drug war money. You know what didn’t get any money? Treatment. Only recently have opiates reached the top cause of OD. In the end, the regulations did nothing but put more dangerous drugs on the street, and make life miserable for chronic pain patients. May all those misguided lawmakers suffer excruciating pain for the rest of their days. They deserve it.

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