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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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  • the harmful effects of pain-pain is killing people although this is not recognized; pain can cause hypercoagulation leading to blood clots which causes a multitude of problems. Untreated pain or undertreated pain may be the cause of a heart attack (blood clots, increased cardiac output, and stress on a heart which already has heat disease can produce that heart attack, yet the pain portion is never recognized. Pain has a negative effect on every system in the body including mentation.The harmful effects of pain are evidenced based and a great chart can be found here; Not seeing the whole patient and “cookbook” medicine is leading to prescribing medication which is potentially harmful as well as ineffective for that person. Not seeing the whole picture leads to potential interactions with other medications (for other health issues) as well
    Pain is complex problem and people with pain should not be suffering and dying because of prejudice and opiophobia.

  • I have been following these comments with interest. It is difficult for me to spend too much time on the computer (health reasons) so I am behind on addressing these issues. The first thing I want to address is the importance of people recognizing what has become a core problem; the separation of “pain” from the whole picture. “Acute” and “chronic” are just periods of time. There are many different reasons for pain including accidents, surgery, diseases such as fibromyalgia, arthritis, EDS (and many more, and acute episodes heralding the onset of an illnesses such as cancer, and other diseases, and acute episodes such as kidney stones, ovarian cysts, intestinal blockage and so on. Chronic pain and acute pain are frequently intermingled (breakthrough pain) The whole person needs to be seen and addressed. Now people are being turned away, dismissed, and even threatened when the word “pain” is even mentioned. I recently had an article printed in the Pain News Network on this topic; “Pain is Not that Simple (daughter’s pain doctor actually has it posted in his office).
    Then there of the harmful effects of pain-pain is killing people although this is not recognized; pain can cause hypercoagulation leading to blood clots which causes a multitude of problems. Untreated pain or undertreated pain may be the cause of a heart attack (blood clots, increased cardiac output, and stress on a heart which already has heat disease can produce that heart attack, yet the pain portion is never recognized. Pain has a negative effect on every system in the body including mentation.The harmful effects of pain are evidenced based and a great chart can be found here; Not seeing the whole patient and “cookbook” medicine is leading to prescribing medication which is potentially harmful as well as ineffective for that person. Not seeing the whole picture leads to potential interactions with other medications (for other health issues) as well
    Pain is complex problem and people with pain should not be suffering and dying because of prejudice and opiophobia.

  • Physicians must be exempt from prosecution in the prescribing of medication to a patient they attend. I realize this exemption may sound dangerous to some folks, however, the alternative of criminalizing physician practice is far more dangerous to the wellbeing of our national physician culture and the multitudes of patients they attend who are not Barbie, not Ken, or otherwise do not conform to the algorithms being pumped out of medical schools seeking administrative perfection in the abeyance of the human body to the dictums of non-attending physician bureaucrats who practice malpractice for a living.

    • No you are entirely correct. The first line of any sort of discipline should be the state medical board/society/association whatever they call it in your state. It should not be the DEA and doctors should not face a court of law for an error in judgment rather than actual criminal behavior (pill mills). There are doctors who have spent time in prison because they believed lying scumbag junkies when they claimed they were pain patients and got prescriptions. That, to me, is an error in judgment. The actual criminals are the junkies, and they either served no time or short sentences, because the DEA made deals with them to go after their doctor. Now, you may understand why your own doctor treats you like a criminal. What if a junkie gets past his screening and gets a prescription? Will that doctor go to prison too?

  • I’m 35, I’ve been on combination opioid therapy for 23 years. I have extraintestinal Crohn’s disease from my mouth to my external and internal most private areas, I cannot sit stand lay down I have tried every chemo drug biologics and steroid available for my disease. I have lost my ovaries uterus 3 reconstructive surgeries to my pelvis and lady parts to this disease but somehow now no doctor will prescribe my medication because of the federal gov war on patients like me. I am blessed to be married to a man I met in pain support for the last 12 years or I would’ve been a suicide statistic. My husband has a rare form of porphyria, he cannot so much as be exposed to light through a window without excrutiating pain. My husband also has been forced after 50 years to go off of his medication leaving him trapped unable to so much as go to the doctor. We are real people we are hurting our lives have been absolutely destroyed. We have been forced to go onto disability to sell our home we have lost everything but each other while these worthless doctors test their theories. Jayne Ballyntine is a monster. History will not be kind to the Doctors and Politicians who willingly caused this much suffering on the sick and disabled.

  • There is a petition on line to sign. Goigle “sign petion for pain rights”. I think that is what it is under. We can also get the aclu invovled.

  • The thread of comments on this article must be over 200 by now, and still going. Which I applaud. However, we need to make our voices heard effectively. I am personally trying to do so by lobbying the healthcare legislative assistants of several US Senators , to brief their bosses on the need to withdraw and rewrite the CDC opioid prescription guidelines.

    Just this morning, there has been a very valuable and credible posting in a blog dedicated to Ehlers-Danlos Syndrome and Fibromyalgia. The posting collects in one place a series of landmark references written by doctors, which thoroughly debunk the CDC guidelines on grounds of inadequate science, financial self-interest, and potentially outright scientific fraud in the cherry-picking done by the consultants working group which wrote this atrocity. The references may be found at https://edsinfo.wordpress.com/2017/02/01/evidence-against-cdc-opioid-guidelines/

    I urge all readers of this STAT thread to phone the offices of their Senators and demand that the CDC withdraw its guidelines on grounds of grievous harm being done to chronic pain patients and their doctors. If you would like to join in this effort, then send mail to lawhern@hotmail.com and I’ll send you a list of phone numbers and names to start with. Even if you don’t get to talk with the legislative assistant, you can tell the staff “I am calling to demand that your boss take effective action to require the CDC to withdraw its March 2016 opioid prescription guidelines. Hundreds of thousands of chronic pain patients are being harmed by the abuse caused by these restrictive de facto standards. Patients are not addicts. Stop the war against chronic pain patients!”

    Regards all,

  • I am a Disabled Veteran of The US Army and a retired nurse. While in the military I had issues with terrible chin splints, achelies tendonitis and broke my toes just marching. I attributed all to the strenuous activity of boot camp and daily five mile runs. After the military I served the public as a Emergency Room Registered Nurse for 18 years. Throughout my nursing career I suffered with terrible migraines and joint pain and lost down to 102 lbs. Since 2006 i have had 9 bowel obstructions. I have had Doctors call me crazy. Been placed unwillingly in mental facilities. I pushed myself to work out at the gym. In 2010 things came to a head and I just did not even have the energy to breath. It was this year I found out from a specialist that I have a rare genetic disorder called ehlers danlos syndrome type 3. I lost my marriage, my home and my three step children and my 32 acre great grand fathers farm. I was placed on pain management in 2010 only to watch the medical field that i dedicated 18 years of my life to ridicule me, judge me, and talk to me like a street urchin. I had gotten to the point where I found myself telling them what they wanted to hear just so I could get what I needed to be out of pain. I also had a special DNA test that showed I have two bad allels that keep me from metabolizing certain meds which means it takes more pain meds for me to stay out of pain than it does some others. Recently I have had to change doctors again because my medical doctor did not feel comfy prescribing me such strong meds. Pain clinic did not know what to give me. So out I was again. Now my new doc could care less what the DNA test showed. I ask him today to change my pain med or increase what I was taking but yet again i got shut down, yelled at and sent home. I have four curves in my spine. Cervical stenosis. Bulging disc in thoracic and lumbar regions, herniated disc in neck and lumbar region, osteoporosis in both hips, wrist and left jaw which the disc has desintergrated, trigeminal neuralgia, migraines, TMJ, irritable bowel syndrome and dysautonomia which all are a part of my disease. My local hospital ER refuses to see me for exacerbations of pain which has thrown me into having to take extra meds just to function at times which I was honest with my doc about today and he refused to increase or change anything and sent me home in pain. I fell on a concrete sidewalk 2 months ago. My right rib cage is compressed and right hip has its own heartbeat, and he refused me pain relief. I am appauled at how my medical counter parts have treated me and others when it comes to pain. Everyones pain is different. Medicine works different for everyone and the compassion has gone out the window. If the government does not get off the doctors backs and let them treat the patients there is going to be more problems than they can shake a stick at. People are going to commit suicide, steal or go to the streets to get relief. With my disease i cannot have surgery unless its life or death. So those who are medling in my health care, you tell me how Im suppose to have quality of life, play with my grand child, cook for my mom, get to my appointments and try to do some excercise being in pain cause you want to take the only thing that keeps me moving. My daughter has inherited this disease. God help her. This needs to stop. It is not our fault there are people who want to take these drugs for recreation puposes and i am sick and tired of people telling me how I feel. You have no right and no clue. God bless and fix the mess.? M Wilson, love ur comment.

  • Hello listener I’m 49 now
    At the age of eleven I was run down riding my bike next to a major free way.. I was in the operating room for hours it’s well documented. After I was on pain meds for a very short time.. By the age of twenty I was still taking ibuprofen and Tylenol ex strength. By twenty One I had graduated from high school and obtained my small degree in HVAC and refrigeration I was serving the general public keeping them warm and cool and their food cold now at no time was I ever the type in Utah to take drugs street or need prescription drugs.. But now I was around all kinds of chemicals in refrigerants you can’t help it if your testing a system with your gauges you get the stuff on your hands.. Well by the time I was 35 and over worked and under paid I started having hormone problems then my joints started hurting come to find out my body had stoped making testosterone it was at 132 and should be 600+ ..
    If you can think of a person in temps more than normal and around chemicals that are chemically hormones witch I did not know till later in life may have complicated my medical problems with the bone deformities and joint problems and now intense pain I find my body not recovering due to white matter on my brain that could complicate my health and hormones. Then you come along and say after all the years of hard work….
    Oh we’re sorry you can’t have any pain medication in less your at the end of your life…
    Insurance company’s messing me over doctors messing me over..
    This is my point if you are going to take pain medication away from every one now..
    Then all the young need to be told don’t take that job you may get hurt if you can’t take the pain suicide will be the answer… You need to tell every stock person every warehouse person make sure all the young in this country in the work force knows that if some thing happens they will not get any pain meds only for a two week period! Then let’s see how easy it is for you to get a fridge delivered or your groceries put on the shelf… We need to tell all the young kids now!!! if you put your health at jeopardy at doing any kind of job you will not get any help you need !!!!!!

  • Yet another example of shameful, unscientific prejudice; crude and uncivilized prejudice as vile and vulgar as any other form of bigotry in modern society but for one difference. However painful bigotry and prejudice might be, it is only amplified by magnitudes of suffering when compounded by acute chronic pain.

    The burden of proof is on the patient to prove the unprovable. How does one human prove to another — to a legal certainty — the extent, relativity and reasonableness of the pain and suffering being experienced by them?

    The policies today will only make law enforcement more desensitized; the administrators predisposed to sloth become more entitled, more tyrannical, more cruel and more dominant.

    This is what we get when we allow non-physicians and non-attending physicians to dictate what is medically necessary for a patient being attended by the physician of their choosing.

    As citizens we face a great crisis. This lynchpin issue in the health insurance reform debacle. Until this lynchpin is pulled and removed and the sanctity of the physician-patient relationship is restored to primacy and made the sole arbiter of what is medically necessary for the patient, there can be no meaningful reform; no meaningful dismantling of the morass of dysfunction, price fixing and presently lawful otherwise RICO-type behaviors normalized and being protected in the present orthodoxy.

    This is the civil rights issue of our time.

    • I agree that discrimination is significant, and arguably mqedical professionals are most guilty. In such matters beliefs tend to trump facts, as is the rule in prejudices and all forms of discrimination. We must not underestimate the fear and ignorance regarding opioids and their risks and benefits.

    • Bill & Dr Rotchford, I couldn’t agree more. My fear is the attitude toward patients in pain will not change just with rolling back regulations. The garbage passing for science these days in regards to opioids is being believed and it’s appalling. Today I read a study that concluded that patients on long term opioid therapy have higher mortality rates than people not on opioid therapy….obviously people on opioids are suffering disease & disability they’re obviously not even comparable to the healthy population. This is what’s passing for science that study was promoted by the NIH & CDC. Compassion is gone from medicine it’ll be generations until it comes back if ever.

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