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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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  • There is absolutely nothing “thoughtful and balanced” about anything once politicians become involved. Lack of these qualities is like an occupational disease for them. The drug problem has got to be evaluated without political involvement and the findings turned over to them to act on in as thoughtful and balanced a fashion as they are collectively capable of. Those who rely on these meds to function are in big trouble because the politicians are only able to restrict and punish just about anything.

  • Why are pain patients being victimized by Dr. Nora Volkow, Dr. Anna Lembke, and Dr. Mark Sullivan? Why are these doctors clinging to outdated opinions regarding addiction posited before 1914? “The idea that drugs fall into a special forbidden, uncontrollable category because of their special addictive effects has been rejected by the very people who invented it. That is, the APA Board of Trustees who hold the final approval for the criteria in the newest edition of the American Psychiatric Association diagnostic manual (DSM-5), which does not describe drugs as addictive…” I am a chronic pain patient. I am not addicted to my pain medication because I choose not to be an addict. Based on my personal experience I came to several conclusions. It is not the availability of medication causing people to become addicts. Very few chronic pain patients become addicted. It is not patients’ inability or unwillingness to handle pain that drives the abuse of opioids. This conclusion is especially offensive. Many patients, like me, gave birth when pain medication was not an option. It is not doctors, indiscriminately prescribing opioids that is driving the so-called opioid crisis. Drug addiction, like any addiction, can occur when a person is unable to cope with actual or perceived negative experiences in their life. I reached this conclusion on my own. I was surprised to discover that Dr. Stanton Peele and Dr. Charles O’Brien, agree with my conclusions. “Like the early marijuana results, this finding seems to contradict the brain disease theory of alcoholism and addiction, which holds that the greater the consumption level, the more substance problems will occur. There is an alternative theory, however, called the social-control model. According to this model, the greater the integration of a substance into a society, the fewer problems that will occur. When drinking is done in normal contexts—rather than in anti-social outbursts—it will be guided by social custom and norms.
    Thus, in Europe, insofar as alcohol goes, and in Colorado and California with marijuana, the social-control model is winning. This begs the questions. Why are chronic pain patients being scapegoated and abused? What is driving the war on drugs and chronic pain patients? https://www.thefix.com/content/legalizing-drugs-disproves-addiction-brain-disease-theory. https://www.psychologytoday.com/articles/200405/the-surprising-truth-about-addiction-0.

  • Now they say the abuse of opioids has been reduced among young people and now older people are the abusers. How convenient. Here’s what they have done to categorize you as an addict when you are not. As a chronic pain patient, your doctor requires you to submit to urine drug testing every two-three months. Now, in order for your insurance to pay for drug testing, insurance companies require doctors to use an ICD treatment code that states you are drug dependent. This is supposed to mean that your medication must be tapered to prevent severe withdrawal symptoms. The same is true when discontinuing blood pressure medication. The new name for addiction, created specifically for chronic pain patients, is Opioid Use Disorder. The ICD code regulations define physical drug dependence as an Opioid Use Disorder. Of course, this would falsely inflate the number of people diagnosed as addicts when they absolutely are not addicted. If you go through opioid withdrawal when your pain medication is stopped without tapering or become tolerant and require an increase in your dosage you are considered to be an addict by your insurance company and any bigoted medical employee you encounter. Ask your doctor, Check your medical records. Demand that your medical records be corrected or add a letter of protest to your medical record. I almost died from a DVT that extended from arm up into my jugular vein. One doctor refused to prescribe anticoagulant medication because this was listed in my chart. Understand, I was dying because of a DVT blocking blood flow and she was refusing to prescribe my warfarin. She was going to let me die because I am a chronic pain patient which is the reason the DVT wasn’t diagnosed in the first place.

    • Ms White,,,,,,well said,and 10,000 %%% truth!!!!but a corrupt government have no use for truth,do they,,,,OBVIOUSLY,,,maryw

  • Big Pharma & Insurance companies get to kill two birds with one stone. First, if they no longer produce opioids, then the drug cartels can’t divert them. If the opioids aren’t diverted, insurance companies don’t have to pay for them. That’s the first benefit. The second is, if the chronic pain patients can’t access the medication, who knows what they will do in desperation. It’s easier to target the weakest members of society than to deal with the core issue. As Scrooge once said, “Let them die and decrease the surplus population.”

    • To Maureen,,,u nailed part of it,,and take a wild guess Maureen who in our government at the time is the Director of Malpractice insurers and consulting firms for hospital insurances??Andy Kolodyn,,,,who was the head of the cdc when all this false ADDICTION crap came out and all these new defintions to make innocent people guilty,,,U might even say,,their plan against humane care of the CHRONIC medically ill WAS ,,”shatterproof”,,,,Always,,nowadays,,,FOLLOW THE MONEY!!!!its sickening,torture,and genocide,,,maryw

  • Late Sunday/Early Monday you can hear “The Other Side of Opioids”. Learn how the DEA is persecuting pain patients and their doctors: coasttocoastam.com/show/2017/11/26.

  • I’m in Canada,Am 55 years old,Dissabled,degenerated disc disease,Cervical nerapathy.cronic pain 24/7.Sir I do not have good days and bad!.I have bad days and worse!.Please Help Me.Been on a overwhelming amount of pain medication since 2003.No Quality of life.
    until this year,on hydromorphone,And hydromorphcontin.and gabepenten.and mixed with medical canabis,past nine months,Just past few months,Finally got an incling of AType of Quality of life again Finally! These mixed meds took my doctors and I 12 years to find,Something to finally want me to exist.Because before I didn think I could take the pain much more.I was ok somehow at least relief.At times.Look I’m tired of pain first thing as your eyes open at first light,I wake and say Well.Not another day!.The pain is there right away,And all day even while trying to sleep.Im lying in bed saying please no more.then again day miniutes after miniutes,hour after hour day after day month after month year after year.Every waking moment Excruciating pain.Then you need refills again,So go to doctors.to tell him everything’s ok.Stoped the sleeping pills,and the middle of day gabapenten solflax and senokot,because after 12 years of being constapated I’m not anymore,and pulled or pooped my muscle right arm.He suddenly says the government says I’m supposed to cut all my patients narcotics in half.Didnt bother even hearing my earlier comments.Just said that,I was in shock,he said I could overdoes like others,or sell them and degraded me,I said I’m not a dealer,or a drug dealer,you can’t put me in some category with them,Comon! I said he said he was scared to be sued for my overdose.I was overwhelmed,distraught.confused,Worried,scared and couldn’t believe what I was hearing.tonight I can’t sleep.I got in my truck and cried.If my pain continues what am I to do.I have the thought of asking to be put down as I’m being treated like a dog.PS I know your in America.But do you have any way to help me.Please and Thank you kindly.Alexander Posthumus
    From Dunnville Ontario Canada

    • Most doctors feel or are being told that pain doesn’t kill which unless you live with it 24/7, the thought of suicide comes into picture.

      I wish I could give you a go to support group. Chronic pain patients that are well documented are being included in the black market heroin, fentanyl, carafentanyl, drug trade.

      I would suggest to your physician that you and I need to be patient centered treatment. Meaning your a square peg that doesn’t fit in a circle therefore conventional treatment or patient management has to be thrown out.

      Only and I mean only 1 in 10 patients with a prescription for opioid or opiate management become a statistic. The United Nations considers withholding healthcare or pain management a form of torture to patients like you.

      This Opiod or Opiates propaganda is really taking hold and no one is looking at the hard numbers.

      Here are the numbers pulled from a published author from the CDC, NIH, and many other sources. Maybe you can show your physician this. There are bigger problems than Dr to RX treatment.

      2016 deaths per day & cause
      16,850 heart disease
      16,500 cancer
      1,315 tobacco*
      684 medical error
      175 OD(all drugs)
      121 suicide
      109 car accident
      101 alcohol*
      98 gun
      59 Fentanyl*
      41 heroin*
      ~40 CPP* suicide
      39 Rx opioid*
      <10 legal Rx opioid only OD

      * related
      #OpioidEpidemic

      When I hear a physician not being able to think or use science on his or her own then they are not the person you need treating you. No one persons human genome is the same as the other nor is everyone else’s environmental exposures that create chronic health concerns either.

      Arm yourself with knowledge and facts as the truth has no sides.

  • I live in Tacoma Wa. Im interested in joining any protests in my area? Im unable to travel to AZ. Good luck and best wishes

    • Sonya, the link I posted was to the march in Washington, DC. If you are a member of any pain groups on facebook, or know other patients who would be willing to organize and participate in a march in your area, you are encouraged to do so in any local community, particularly on the same day as the DC march — April 26, to encourage national attention. http://www.painpatientscoalition.com/pressrelease2018.html

  • Here is the link to an entire week of pain patient protest activities, including a March. We’re way out here in AZ, but we are going to take this trip, rent a mobility scooter and participate in any way I physically can. I thank God that my husband is understanding, compassionate, and supportive of this. We need to have as many advocates, disabled and able-bodied alike, to participate and swell the numbers. http://www.painpatientscoalition.com/

  • i’m disabled,have very great pain every second of my life,had four major surgeries,two neck fusion,every pain treatment non-opioid been done with very little or no pain help,two yrs ago was given 30mg’s of oxcontin which reduce my great pain in half,now my rx pain medication has been reduced to an 10mg loratab every 8 hrs and these medication in 2017 have made not with the mindset to reduce very great pain,but they were made to reduce drug addiction which make them the only last treatment i had to work only one to two hours that if i don’t hardly move and the pain relieve is 1 out of 10 which leave in the state of mind while i grit my teeth because the pain to have to pray all the time,because i just want to kill myself to get out of this pain hell,lpus even being disable i still have to live as an disabled person the last 2 yrs i just haven’t been able to do that sometime using the restroom in my pant’s because to move the pain would shy rocket,chronic pain patients are being tortured left to die in pain so great and unhuman, this is wrong,someone needs to stand for those who can’t,chronic pain patients need their lives back.

    • The politicians don’t give a damn about your pain or much else except their jobs. Now they can say they are “doing something”. Whether or not it actually works is irrelevant to them. If we want better politicians we are going to have to really put the hammer down on them.

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