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ALO ALTO, Calif. — For Thomas P. Yacoe, the word is “terrifying.”

Leah Hemberry describes it as “constant fear.”

For Michael Tausig Jr., the terror is “beyond description.”

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All three are patients struggling with chronic pain, but what they are describing is not physical agony but a war inside the medical community that is threatening their access to painkillers — and, by extension, their work, their relationships, and their sanity.

Two years after the United States saw a record 27,000 deaths involving prescription opioid medications and heroin, doctors and regulators are sharply restricting access to drugs like Oxycontin and Vicodin. But as the pendulum swings in the other direction, many patients who genuinely need drugs to manage their pain say they are being left behind.

Doctors can’t agree on how to help them.

“There’s a civil war in the pain community,” said Dr. Daniel B. Carr, president of the American Academy of Pain Medicine. “One group believes the primary goal of pain treatment is curtailing opioid prescribing. The other group looks at the disability, the human suffering, the expense of chronic pain.”

Pain specialists say there is little civil about this war.

“There’s almost a McCarthyism on this, that’s silencing so many people who are simply scared,” said Dr. Sean Mackey, who oversees Stanford University’s pain management program.

“The thing is, we all want black and white. We don’t do well with nuance. And this is an incredibly nuanced issue.”

Nuance does not matter to people like Tausig, 43, who has been unable to work or socialize since 2008, when the last of his five spinal reconstruction surgeries left him in constant pain.

He last got a taste of life without opioids a few years ago, when his pharmacy’s corporate parent imposed opioid-distribution limits, forcing him to find a new one.

“Those three days were among the worst of my life,” he said. “I wandered the house at night, legs shaking like a whirling mass of putty, sleepless and without respite from the pain.”

Now, with regulators and health industry leaders continuing to bear down on opioids, and the arrival of a new president whose statements indicate that he might further restrict opioid distribution, Tausig’s worries have deepened.

“It’s put the fear of God in me.”

Michael Tausig has been unable to work or socialize since 2008, when the last of his five spinal reconstruction surgeries left him in constant pain. Elizabeth D. Herman for STAT

The medical community’s battle over painkillers burst out into the open in late 2015, when the New England Journal of Medicine published a commentary in which two doctors argued that chronic pain patients should focus not on reducing the intensity of their pain, but on their emotional reactions to it.

The authors, Dr. Jane C. Ballantyne, the president of Physicians for Responsible Opioid Prescribing, and Dr. Mark D. Sullivan, argued patients should pursue “coping and acceptance strategies that primarily reduce the suffering associated with pain and only secondarily reduce pain intensity.”

The pair argued that patients who mainly focus on pain intensity tend to escalate their doses of opioids and worsen their quality of life.

On NEJM’s website, the comments section devolved to a flame war more suited to YouTube than the staid pages of the nation’s top medical journal, with some accusing the authors of a lack of compassion, and others lauding them for a sane approach to public health and addiction prevention.

But the comments also laid bare a fundamental problem in the debate over opioid treatments: Neither side has much evidence about the benefits or consequences of long-term use because almost no such studies exist.

A few studies have identified a litany of side effects beyond addiction. One survey, by palliative care doctors Mellar P. Davis and Zankhana Mehta, pointed to symptoms including increased risk of depression, anxiety, cognitive impairment, and sleep apnea, among other issues. Patients with lung disease were also more likely to die when their treatment included opioids, according to the survey’s authors, who practice at Geisinger Health System.

Stanford’s Mackey said those risks are important to recognize. But, he said, nearly 15,000 people die a year from anti-inflammatory medications like ibuprofen. “People aren’t talking about that,” he said.

Mackey says doctors being trained at Stanford’s pain center have grown increasingly fearful about prescribing opioids. Elizabeth D. Herman for STAT

On a Monday morning last month, Mackey entered an exam room to greet one of his patients who uses opioids: an 81-year-old physician with a bad back.

The doctor, who agreed to be interviewed on condition of anonymity, said he’d routinely cycled to work until relatively recently, when a degenerative spinal condition worsened. Surgery in October failed to help, and now, he told Mackey, he can only get out of bed if he takes five opioid pills at dawn and sleeps another half-hour before rising.

The doctor wanted to find a way to address his back problem without the painkillers, which, he said, cloud his thinking.

Mackey spent nearly 30 minutes with him, talking about scans, symptoms, and previous treatments. He planned a follow-up consult in January, when another set of test results would arrive.

Over lunch, Mackey reviewed the case.

“Do you get any sense from him of drug-seeking behavior?” he asked. “Is he selling this stuff on the street or trying to score some synthetic fentanyl or heroin? No. All he wants to do is be more functional so he can see patients and be relevant and have a life.”

Mackey also wasn’t sure the opioids were causing the cloudiness. The patient’s cognitive issues could be the result of non-opioid medications he takes before sleeping, so dialing down the opioids without first exploring other options might harm him more. Without them, his pain would be so severe he would be relegated to bed.

“If you’re 81 and you stop getting out of bed, it’s a slippery slope,” he said.

Mackey, a past president of the American Academy of Pain Medicine, has built Stanford’s pain center into one of the nation’s most comprehensive and well-funded pain research operations. But he said doctors being trained there have grown increasingly fearful about prescribing opioids.

“In many cases that can be healthy, but I’d like to see a thoughtful, balanced approach,” he said. “Opioids are a tool — they’re more often a fourth- or fifth-line option for me.”

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Mackey recalled the case of a patient who had crushed his foot in an accident and undergone 10 surgeries that failed to diminish his “burning, terrible pain.” The patient now relies on opioids.

“People will say, ‘This guy’s on way, way too much opioid medication, you have to take him off,’” Mackey said. “But guess what: He gets up every morning and goes to work and does his job, and he’s been on the same regimen for years and years and tried everything else first.”

Even some of Mackey’s colleagues have issues with that kind of thinking.

Dr. Anna Lembke, who practices alongside Mackey at Stanford’s pain clinic and is chief of the Stanford Addiction Medicine Dual Diagnosis Clinic, published a book about the opioid crisis last year. It was titled: “Drug Dealer, MD: How Doctors Were Duped, Patients Got Hooked, and Why It’s So Hard to Stop.

Lembke believes that long-term opioid use can cause patients to perceive pain even after the original cause of pain has cleared. Some patients, she said, find themselves free of pain only once they have endured the often agonizing effects of opioid withdrawal.

“That’s what we’re seeing again and again,” she said.

Lembke believes people with chronic pain who have taken opioids daily for long periods may never be able to break their dependence on the drugs, and may need permanent doses of medications like Suboxone, which is commonly given to people with opioid addictions.

But chronic pain patients who have not yet started on opioids, she said, should only take them intermittently — “like every three days or so” — to avoid addiction.

The American culture has grown too intolerant of pain, Lembke said.

“Whether it’s surgery or women going into childbirth, there’s an alarmist reaction to pain, and it’s contagious and makes more people anxious, which makes the pain worse,” she said. “We’re terrified to experience pain.”

Mackey has built Stanford’s pain center into one of the nation’s most comprehensive and well-funded pain research operations. Elizabeth D. Herman for STAT

Those who experience chronic pain say these views embolden clinicians, pharmacists, and others to treat them like addicts and criminals.

Hemberry, a 36-year-old multimedia specialist in Leavenworth, Wash., suffers from a connective-tissue disorder called Ehlers-Danlos syndrome and trigeminal neuralgia, an often-excruciating nerve condition for which she occasionally takes opioids.

She heard Lembke interviewed on NPR recently and was bereft. “Every pain patient is now an addict and a failure,” Hemberry said.

Last March, the Centers for Disease Control and Prevention issued guidelines for opioid prescriptions. Those guidelines focused on addiction prevention, opioid trafficking, and medication diversion, and included stern cautions against using the drugs for chronic pain.

To Hemberry, the guidelines seemed reasonable. “But many doctors and administrators have taken a hard-line ‘no opiate’ stance,” she said, and go to absurd lengths to enforce it.

“What people forget is, those who end up on opioid pain management have usually tried everything else unsuccessfully.”

Thomas P. Yacoe, who suffers from chronic migraines

Earlier this winter, Hemberry recalled, she went to the emergency room with a migraine headache, a frequent symptom of her medical conditions. She was seeking a saline drip — one of the few treatments that has helped her pain — and said she wasn’t seeking opioids.

The nursing staff nonetheless grilled her on her medications and chided her for taking too many pills, even though her daily medications are non-narcotic. She turned her head at one point and started sobbing.

Others report a similar lack of empathy.

“What people forget is, those who end up on opioid pain management have usually tried everything else unsuccessfully,” said Yacoe, 61, who suffers from chronic migraines. “I stayed away from opioids for decades. It was really and truly a last resort.”

A patient room at the Stanford University Center for Back Pain. Elizabeth D. Herman for STAT

Some clinicians trace the early roots of the opioid crisis not to the pharmaceutical industry’s marketing of controlled-release morphine pills, but to a 1986 study of 38 non-cancer patients performed by palliative care doctors at Memorial Sloan Kettering Cancer Center.

Most were treated with oxycodone, methadone, or levorphanol in small daily doses — less than half the surgeon general’s current recommended starting dose — and 24 reported acceptable or adequate pain relief, while two patients developed “management” problems with the drugs. (Both had histories of substance abuse.)

According to Carr, of the American Academy of Pain Medicine, the conservative opioid treatment approach used in the study, and the modest benefits reported, reflect the current practices and expectations of many doctors.

But a growing number, he said, are being pressured into a zero-tolerance policy.

“Because if one isn’t anti-opioid enough, there’ll be protests,” said Carr, who is also founding director of Tufts University’s Pain Research, Education, and Policy Program.

Other experts note that, as opioid restrictions tighten, the medical system and insurance industry have done little to support opioid-withdrawal efforts, help more physicians learn how to help patients manage pain, or enable access to alternative therapies.

In some cases, patients seeking to treat their pain have turned to street drugs like heroin or synthetic fentanyl, while others have instead chosen suicide. (In one high-profile case recently, a man who committed suicide left behind notes saying he could find no help for his chronic pain; at least two of the roughly 20 patients interviewed for this article said they had considered suicide because of their pain.)

Everyone wants the number of opioid overdoses to fall. But patients like Tausig don’t want to be made to suffer.

Tausig, a single father of two teens, said that every month he needs to fill a prescription, he’s fearful it will be denied.

Whenever he thinks he might meet with a new pharmacist or clinician, he dresses neatly to hide his tattoos. He said he thinks they can cause people to rush to judgment or even stigmatize him as an addict.

“You’ve got the wars on the medical side, but then you’ve got the governmental people stepping in, who have no idea,” Tausig said. “All they know is drugs: bad.

“They don’t see a struggling single dad in the most expensive place in the US who’s just trying to get through the day.”

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  • Not enough alternatives for pain medications. TENS unit works well and a different thought process. Accepting Natural herbs, changing life style and diet management for those overweight. Addicting, controlling behavior associated with narcotic use is gruesome. Does not differentiate between legal or illegal use….it’s all the same. Short course of narcotic use for trauma or illness acceptable. Otherwise we would be better off without it.

  • What ever happened with having eempathy for the patient? Wasn’t there an oath that used to be taken to have the patient come first & keep them as comfortable as possible? So sad that that is lost?

  • This is exactly what I’m going through. 62, Fe, disabled since I was 55. I have a Patra of issues. I am not an addict. I’m just Nana, and I care (or try) to take care if my 84 yr. old Mother. We need our meds. Period. Make ppl. have MRI’s, we are wiser than that! I have done the gammit, this is all I have or surgery (50/50) that it works. Already had 3 or 4 discs replaced in my neck. From cadavers. Then my right shoulder froze. Now it’s my L2,L3,L4,L5, S1 with a 7mm tear L3, L4. I wake up blessed, that I can shuffle to the bathroom. I can’t do alot of things I enjoyed. I take my doses same time, everyday. I do what my Dr. tells me. I still do PT at home, to stretch as well as I can. This is not fun! If we screen the patient’s with a little more screening I think it would help. First do no harm. The ppl. like me need this, until something better comes along. Thanks You for the vent, I feel better

  • additionally the fact that no opioid prescriptions comes with an out strategy, i.e. tapering off use once the pain is resolved, is a testament to how messed up this whole situation is. Living with pain is unacceptable. There is middle ground but that represents extra work for those prescribing them, who also, have many times, had extremely limited experience with intense pain and use of opioids.

  • I have had 8 back surgeries. I took myself off my pain medicine cause of all of this just to see if I could do it cause it’s getting so bad to get them. I am in so much pain that I can’t sleep,walk or think. I am going to get back to a pain dr. We should not be punished cause of stupid people that kills themselves cause they want to get high. There is a difference in getting high and having to have those meds to live. They do it the stupid way so we pay the price. I have been off mine for 3 mos but my primary care dr gave me my Norco. Sometimes I hurt so damn bad that if I don’t get something stronger I just don’t feel like living. Cause this isn’t living this is torture. Please please help us.

  • I believe Anna Lembke is a typical radical abstinence 12-Step industry ideologue and operative. Read her paper, “Sacrifice, stigma, and free-riding in Alcoholics Anonymous.” Scary stuff. She frequently cites Keith Humphreys, an old faithful 12-Step apologist who himself acknowledged in his contribution to the 2006 book, “Rethinking Substance Abuse: What the Science Shows and What We Should Do About It,” that there was not reliable evidence of 12-Step efficacy for coerced populations (almost everyone in rehab is coerced). A couple years ago in a New York Times article by Austin Frakt, “Alcoholics Anonymous and the Challenge of Evidence-Based Medicine, Humphreys denied the obvious : that 12-Step efficacy is largely an illusion of self-selection bias.

    I believe it is a fair interpretation of Lembke’s paper that she actually advocates the use of shame and stigma against persons who do not completely abstain from alcohol/drugs when they’re mandated to A.A. and other 12-Step ‘support groups.’ Read it for yourself if you disagree with my summary of Lembke’s paper. Keep in mind that government coercion into 12-Step/A.A. is actually unconstitutional since it is an inherently religious program: see Inouye v. Kemna; Hazle v. Crofoot; Warner v. Orange County Dept. of Probation; Kerr v. Farrey, among about 25 other cases.

    Lembke describes how newcomers to A.A./12-Step groups are *initially* told that simply having a will to quit using alcohol/drugs is all that is needed to participate. Then soon after initiation into the group, they are expected to completely abstain, with those who fail to meet the zero tolerance expectation being shamed and stigmatized by their peers as “free-riders” trying to avail themselves of the [alleged] benefits of support groups while not actually meeting the requirement of [radical] abstinence.

    Keep in mind many of these ant-opiate crusaders are deeply professionally, if not personally, dependent on 12-Step groups or the professional careers which that system creates. A.A./12-Step is essentially an extension of the Christian Temperance Movement (see Philip McGowan’s paper, “AA and the Redeployment of Temperance Literature”). A.A. is a variant of New Thought Christianity, which shares some similarities with Christian Science, for example, so a connection with the anti-vaxxer movement and 12-Step is not far-fetched (the latter often opposing certain ‘naughty’ medications, such as opiate pain killers and anti-anxiety benzos).

    The National Association of Addiction Treatment Providers (NAATP) is a rehab industry lobbying group that for years fought against the use of medications to treat opiate addiction. Since there is a considerably larger survival rate for addiction treatment patients who receive medications, including those using other forms of opiods as medication itself, versus cold-turkey 12-Step, the government finally started implementing incentives or requirements for the provisions of such medications in treatment programs as a condition of federal funding.

    Now that NAATP, Betty Ford Center, and other 12-Step-based providers and interest groups have lost the political battle to suppress adoption of certain medications for opiate addiction, and with loosening government restrictions on marijuana, many rehabs and drug testing companies (such as owned by former Drug Czar Robert DuPont and ex-DEA head Peter Bensinger) are looking for new ways to sneak in zero-tolerance policies as a pretext for railroading people into rehab or long-term drug testing, including crackdowns on opiate pain killer medications. It’s harder for rehabs to “trap” users of opiates if they can’t determine by drug tests if they’re prescribed legally or illegally. Hazelden started targeting “high functioning addicts” a few years ago; in other words, people who lead successful lives yet use drugs who are an untapped market for exploitation, as they’ve been more difficult to coerce into treatment via the criminal justice system, which is the single-largest source of referrals for most addiction treatment. Hazelden’s medical director, Marvin Seppala, was himself a patient at Hazelden at age 17 (as he described on NPR’s Diane Rehm Show). He has also claimed that some pain can be managed by acupuncture. If I’m not mistaken, acupuncture is basically a sham or placebo.

    The U.S. addiction treatment INDUSTRY is estimated to involve around $35 billion per year (I believe that statistic is from SAMHSA), estimated to grow to around $42 billion in several years. The vast majority of U.S. addiction treatment programs are 12-Step-based; the stat often cited of 80% is likely conservative.

    I recently read that the opiate medication industry was a several billion dollar industry. I don’t remember the exact estimate, but if I recall correctly, it was only about 2/3 the size of the addiction treatment industry. In other words, the 12-Step industrial complex, which is also a major financial and political components of the ‘War on Drugs,’ is actually LARGER than the opiate market component of ‘Big Pharma’ (though someone else can do a better job of fact-checking stats for the pharmacological opiate industry than me).

    Drug Czar Michael Botticelli is a known A.A. member who even opposes the legalization of marijuana under the pretext that it could endanger the “recoveries” of ‘recovering addicts.’ This should give you an indication of just how powerful, lucrative, and deeply embedded the New Christian Temperance Movement, aka 12-Step, is throughout government.

    Anna Lembke being cited as an ‘expert’ is another example. It’s not surprising for me to read that she demonstrates more loyalty to the 12-Step industry her career depends on than compassion for people in extreme pain.

    • Thank you so much for taking the time to type out your informational & succinct synopsis of things that I have also read Re: 12-step/Big Pharma/War on Drugs, etc. Only when people become more aware of how the system is potentially “rigged” against them, will there be sufficient outcry to at least attempt to remedy some of these issues. Calling attention to potential conflicts of interest will hopefully serve as a call to action.

  • I live with chronic pain. Without pain Medication my quality of life would be zero. I have had physical therapy, pain shots and a hip replacement . There seems to be a increase in the use herion has no one thought that some may be in such pain. they feel it’s there only choice. Due to new regulations they no longer abe to have access to legal pain management. I am fearfully everytime I go to get my prescription, never knowing if a new law may take my only means of living a daily life away. Please there are edlery, cancer patients and people living with arthritis that they depend on the medication to walk, spend time with their children.We have to help the doctors. they need to be able to give treatment. Without fear of the long arm.of the government.

  • jesus.stop lumping relatively mild drugs like 5mg percocets with Oxycontin and heroin…it makes those that need an occasional pill to sleep or get through the day..say 3-5 pills a month feel guilty..feel like they are junkies..there is a huge leap from the 5mg percocet/vicodin crowd who takes maybe a pill a week
    to the abusers of high potency pain killers and heroin…It does a disservice to
    people who don’t abuse…who use them sporadically .. there has to be some big pharma thing coming out that is pushing this whole opioid argument and suddenly lumping heroin users and people who take a pain killer a few times a month in the same basket

    • You definitely shouldn’t be made to feel like a junkie. Neither should someone uses them daily though. It’s not an indicator of abuse either. Plenty of people take opioids daily for years and continue to experience improved quality of life without encountering significant side effects or displaying signs of substance abuse.

  • I’ve been taking oxycodone since 2000 I had Polio when I was young I cannot walk real good maybe 30-40 feet tops workout watch a lots of pain my legs are no good I live in pain every night and day I take Oxycodone 10 325 they are taking away my pain pills I do not know what to do please help I cannot live in this much pain please someone help before it’s too late I don’t know what I’m going to do I have asked the doctor to cut my legs off they refuse to do that also I am 63 years old I am not a drug addict that is the first thing a doctor think of people like me are drug addicts no one that has a much pain as I do can live with it you have zero quality of life can’t walk can’t sleep I cannot live in this kind of pain I want to cut them off myself don’t have enough guts to do so I am 63 years old quad By-Pass all my heart I cannot stand the pain someone help me before it’s too late God Bless America 580-370-0328 identity oxycodone 8 years I know there’s drug addicts the world I’m not one of them everyone need pain pills are not druggies

    • I am 90 years old. My lower back is shot, car wreck injured my neck, arthritis has taken its toll on my body. A doctor explained he needed to cut his pain prescription down. He felt they may make me (this is a quote) goo-goo headed. I explained that I am 90 and without them I wont be around the pain is to much
      He cut my dose in 1/2, 5/325 then only 2 pr day. I had to find a doctor that understood some people have to have medication just to get out of bed. I dont have much time left and I want to enjoy my family, that means I have to have treatment that is opioid. Please dont take my life. Just had to give my point. all you hear is how bad pain pills are…..

    • I agree. I now live with pain and fear new regulations will take away the one thing that makes me able to get up.

    • Donald,

      I’m so sorry you are having to deal with this. It’s not fair that patients like us are forced to pay the consequences for mistakes others make. I can’t promise anything, but I’d like to at least try to help you find someone who can help you get some relief. If you look me up on Facebook, you’ll see a blonde haired girl with a pink bandana on her head. That’s me.

  • Don’t judge chronic pain unless you have experienced it yourself. Severe pain destroys your life. It’s no wonder people suicide when they loose hope for improvement.

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