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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  • Mark;
    one of the sorta grimly hilarious things about this particular situation is, this state is about as wildly liberal as it gets. The Task Farce nuts would have seizures if they heard they were put anywhere in the same category as Sump. But for all their ‘we’re soooo liberal’ attitude, they just KNOW they know better than all us CPPs & our doctors & other docs & medical professionals all over the world. They are evangelists who MUST bring the blessings of “alternative therapies” to us ignorant savage heathens who think we “need” our pain meds (just like addicts!), no matter what we think of it or what the ultimate effect will be…kinda like conversos in the past, forced at sword point by various religious extremists to convert or die or both. No matter what happened, it was for the convertees own good & they were better off even if they got their heads cut off.

    Plus, they get to make lotsa money off the deal. How can they go wrong??

  • This is an over lay of government intrusion, with the Trump Administration. Dam his where is his big wall? Hope he suffers before he dies.

    • Mark;
      one of the sorta grimly hilarious things about this particular situation is, this state is about as wildly liberal as it gets. The Task Farce nuts would have seizures if they heard they were put anywhere in the same category as Sump. But for all their ‘we’re soooo liberal’ attitude, they just KNOW they know better than all us CPPs & our doctors & other docs & medical professionals all over the world. They are evangelists who MUST bring the blessings of “alternative therapies” to us ignorant savage heathens who think we “need” our pain meds (just like addicts!), no matter what we think of it or what the ultimate effect will be…kinda like conversos in the past, forced at sword point by various religious extremists to convert or die or both. No matter what happened, it was for the convertees own good & they were better off even if they got their heads cut off.

      Plus, they get to make lotsa money off the deal. How can they go wrong??

  • Heather, Dr. Lawhern is entirely correct. Your last line is humorous, but your letter is moot. Doesn’t make a difference if you are on Medicaid or not. The solution for both groups, including you, is to use a schedule III drug that is safe and effective for your pain, buprenorphine. One elderly person died from buprenorphine in millions of doses (not mixed with other meds). It is approved for the indication. Lots of folks are still posting, but without a trial on the medication. Try it. Trust me, you won’t be disappointed. 208-290-3567 with questions.

    • Hi Dr Rust,

      Thank you for your post, and for finding my little joke funny. 🙂 Alas, many of the side effects of buprenorphine are things I already suffer (muscle spasms in particular), whereas I have few side effects with tramadol, so it was decided to leave me on tramadol. I am hoping to be seen in the pain clinic again at some point to find a better solution for the spasms, as they are by far the most disabling part of my chronic back pain. Benzos work, but turn me into a zombie, so I’d like to find something better. Any ideas?

      Cheers,

      HH

  • The instinct to aggressively taper Medicaid patients off opioids is in fact unsupported and unethical. From published CDC data we know that people over age 55 are prescribed opioids about 2 to 3 times more often than youth and young adults under age 55. Moreover, the rates of overdose mortality in older populations have been for the most part stable for the last 20 years at the lowest rates of any age group. But overdose rates among youth have skyrocketed during the same period to levels now six times higher than in seniors.

    Over-prescribing by doctors to people in pain didn’t create our opioid crisis and isn’t sustaining it. Medically managed opioids contribute so little to our mortality rates that they don’t even move the meter. Almost the ENTIRE opioid “crisis” was created by economic stagnation, hopelessness, and aggressive marketing by drug cartels to vulnerable populations in hollowed-out communities (rural, suburban, and inner-city).

    See my article on Dr Lynn Webster’s respected blog: “Over Prescribing Did Not Cause the Opioid Crisis”. The data will absolutely shout at you off the page.

  • One thing: “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”
    Medicaid populations are living in poverty, or they wouldn’t be able to access Medicaid. Why?
    1) Poor people are statistically more likely to suffer from chronic pain because they’re more likely to have had jobs which involve repetitive manual labour;
    2) Poor people are statistically more likely to suffer from chronic pain because they’ve had less access to medical care in the past, and/or to have put off accessing medical care until they were in severe pain;
    3) People with chronic pain are far more likely to be poor than other people of the same age/education/race/etc., because they’re less likely to be able to work, so are more likely to be on Medicaid.

    So it isn’t logical to aggressively reduce opioid prescriptions to Medicaid patients more than one would in any other group of patients. This idea plays into the bias that poorer people are more likely to abuse/misuse drugs, and to fake their pain to get drugs.

    Medicaid patients may well be more likely to overdose on opioids, but that’s also easily explained:
    a) (See above) A higher % of Medicaid patients need/take opioids;
    b) Medicaid patients have a statistically shorter history of past contact with medical services, so are less well-educated about the importance of sticking to prescribed doses.

    There are some other things I should be adding, but I”m on tramadol and can’t think of them.

  • Thanks you for a less bias, hyped coverage of this issue. There needs to be ‘shouting from the rooftops’ on what exactly is killing people. It is not classic opioid meds like methadone, oxycontin given for chronic pain treatment. Some studies show almost all overdose deaths are from illicit fentanyl and heroin. It amazes me that chronic pain patients are taking the brunt of the beating.

  • Why Medicaid patients? Is it because the people in such mind numbing pain probably can’t work and pay taxes? We already know Oregon rather have people kill their selves by state aid instead of paying for end of life medical bills. Medicaid, the poor peopl’s insurance! Seems like Oregon has found another way to get rid of them and the states obligation to them by trying to deny them ethical pain treatment for their painful maladies. Oregon is a state without empathy for those in pain. Shame on you Oregon! I’m sure the rich in Oregon can get their pain pills any time they want.

    • It appears Genocidal. Other states are doing the same thing and have been for years. A Stanford Pain Researcher, misreported her findings, in order to sell books and market her public persona, making false claims about “opioid tapering.” Stanford got a lot of funding to run that false narrative! In a study when almost half of the subjects drop out, it is no longer credible, yet this researcher claimed that she was successful. She did sell a lot of books though, and made millions.

  • I all ready know three people who have killed themselves because they could not get the pain management they needed. One used an overdose of insulin, was found with a smile on his face and twenty needles around him. One shot himself. The last one went to heroin and overdosed.

    • It is both very sad and a national disgrace. The Heroin overdose may have been an accident if no note was left. However it wouldn’t have happened if the patient had received effective pain relief.

  • Stanford researcher, Beth Darnell is now changing her tune after the media misinformation campaign, funded by Pharma at Stanford leads to deaths, suicide and depair:
    https://bethdarnall.com/blog/2018/12/15/international-stakeholder-community-of-pain-experts-and-leaders-call-for-an-urgent-action-on-forced-opioid-tapering/

    “Aggressive opioid tapering undermines patient care and outcomes, and increases patient distress. The methods by which a taper is conducted matters greatly, requires careful considerations for patient protections, and should be supported by solid evidence in the patient population and setting that the proposed taper will occur. Such policies may involve insurance companies, pharmacies, healthcare organizations, and state and federal agencies.”

    Darnell launched a profitable media campaign denying the existance of pain, selling books and lucrative speaking engaements. Her flase narrative about “Mindset” was popular at Davos. The billionnaires wanted to hear that working long hours for low pay without medical care, or a day off, did not lead to permanent disablity, stress or an early death. In the US, long hours at grueling physically demanding and repetitive jobs and no days off, did not lead to chronic pain, depression diabetes or heart disease, it was “Mindset.”
    The corporations knew that the people nearing retirement age were going to cost the healthcare system, so they came up with a counter narrative. In order to misinform the public and brand all older workers, victims of domestic abuse and injured workers as either mentally ill or drug addicted. Pharma sold alternatives that caused kidney failure, and marketed various psych medications off lablel as alterantives. When peope showed up at the emergency room or dead, they attributed these to “overdoses” many were counted as opiod overdoses, even though opiates were not involved. The brand names were censored since they could cut into profits for pharma . The insurance industry saw a profit too, they could deny care or treatmet to anyone who admitted they had pain.
    People who endured surgeries that led to intractble chronic pain, could now have their motives questioned by a psychologist. Of course the proceedures were never studied or the records of the surgeons, or hospitals. Patients with pain were denied care unless they subjected themsleves to dangerous steroid injections, untested implants, eva after it was proven these could lead to more chronic pain or disabilty. Surgeons took Kickbacks in the operating room from implant peddlers, who performed the surgeries. Patients who experienced adverse evetns were told they had a mental health disorder. Psychologists even re wote the DSMV to demean people with chronic pain, and patients with adverse events. They churned out articles like this, they were perfect for people who wanted to beleive in magic and prayer.

    https://getpocket.com/explore/item/100-million-americans-have-chronic-pain-very-few-use-one-of-the-best-tools-to-treat-it

    More misinforation and lies. The psychologial research was conducted to create postive results. They unscientifically removed the people who were truamatized or ended up hospitalized or dead. There is a sucker born every minute, ad as logn as there is a buck to be made, there will be a content marketer like Darnel, Kolodny or Ablow to spread profitable misinformation and lies.

    • I for one am very glad that Dr Darnall changed her views drastically, and has been working hard to divert the zealots. She spoke very eloquently & clearly at a meeting of the Oregon lunatics last fall, going so far as to offer to do a study –completely free– of VOLUNTARY tapers of Oregon pain patients (i.e, determine the outcomes with people who wanted to taper). She also aggressively slammed Oregon’s Task Farce for insisting on forced tapers to zero & demonstrated to them (with evidence, her own & from the VA’s forced denial of pain meds) that forced tapers would destroy lives & lead to vastly increased suicide rates among Oregon’s most vulnerable population.*

      Many excoriate her for having a part in starting this national disgrace. I’m deeply unhappy (to put it very mildly) with the authors of the insanity…but Dr Darnall is one of the only ones who allowed facts to enter into her medical judgement, & definitely the only one who is now trying desperately to quell the insanity.

      needless to say, Oregon has not taken her up on her offer: they have less than zero interest in actual patient care, patient QOL, or (above all) anything resembling facts. They’ve created their Church of Opiophobia and their beliefs are quite sufficient for them; no facts or evidence need apply.

      *which, given the truly appalling level of contempt for & prejudice against CPPs (they call us all ‘addicts’), is exactly what the Oregon Zealots are hoping for. That, & the huge increase in the money going into the pockets of Task Farce members, most of whom are acupuncturists, addiction specialists, & other providers of “alternative” treatments. They’re clearly hoping to milk the desperate patients of all the personal & state $$$$ they can get before the patients start killing themselves.

    • Kelly,
      Darnell did change her tune, but it is too little too late for a lot of people. The media and the billionnaires at Davos, loved her mind body ideology. She did sell a lot of books and speaking engagments, describing pain as a mental thing, that can be cured with mindset of meditation. This was appealing inexpensive and drug free. People like magical thinking, and it helped the industry deny the existance of pain. No one has done any reseaerch on the damge done, by design.
      People like her helped mainstream alternative medicine, and physicians are sending thepatietns they can’t be bothered with to alternative practitioners. No agency or researchers are tracking the damage they have done there either.
      The so called opiate epidemic has been a marketing extravaganza. Content Marketers like Darnell and many more use fear based marketing, to sell their wares. Accupuncturists, chiropractors and even CBD peddlers all advertise with fear based marketing.

      They take out of context numbers and mislead the public, turning a public health issue into a way to make a fast buck. Almost all of the research we see promoted by mass media, is industry funded. The psychological research they promote is misleading and uscientific too.

      This problem supposedly started with the deceptive marketing of Oxycontin, and 22 years out it has gotten worse. The media has been running a lot of false narratives, becasue the facts are inconvenient. They don’t cover the socio economic factors, or how the market based healthcare system created this. They cleverly leave out a lot of facts, which is driving even more suicides, drug overdoses, and probably even introducing children to drugs. Stigmatizing and torturing pain patients has not worked.
      Darnell made a lot of money and brought a lot of funding to her research, because everyone wants a magial cure. She did not pay attention when the APA rewrote the DSMV to faciliate more stigme for pain apteitns by describing anyone taking opiates for chronic pain as an addict. This was done deliberately to increase the billing oportunities for psychologists. The Fact that suicides increased, and even more people tried heroin, did not register with these so called experts. They had already made their money, and launched their careers.
      People like Darnell beleive their actions are harmless, and they are in denial about their role in all of it.

    • Sorry Kate,

      We won’t be seeing an update on this topic in any mass media. The entire opiate epidemic is based on lies, propaganda and marketing. There is no good evidence that any of these alternative treaments like Yoga, are beneficial to people with intractable chronic pain, yet they are still promoting this. They only did selected research on this topic, and avoided using any patients with serious disorders. They also cleverly left out the subjects who were traumatized or saw their condition get worse.

      The mass media will not cover the story, since the owners have made billions on the so called opiate epidemic.

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