Declarations from two federal agencies offer hope — and possible action — for people in pain who have lost access to prescribed opioids. These declarations come not a moment too soon for those who have been abandoned by their health care providers or denied appropriate treatment and are suffering in real time.
In 2016, the Centers for Disease Control and Prevention released guidelines for prescribing opioids for chronic pain. Although these guidelines have been useful for many clinicians, they have been misapplied by individual prescribers, institutions, and agencies, too often causing the kind of pain they were meant to address. Writing in this week’s New England Journal of Medicine, the authors of the guidelines admitted that they have been misapplied by those seeking “shortcuts” to safer prescribing.
The authors, Dr. Deborah Dowell and Tamara Haegerich from the CDC and Dr. Roger Chou from Oregon Health and Science University, noted that ranges given in the guidelines related to opioid dosages and the number of days for which an opioid should be prescribed were often translated to “inflexible” limits that have been pushed, mandated and incentivized by countless insurers, state agencies, and regulators in ways that exceed or even contravene the guidelines.
This misapplication of a few select provisions in otherwise useful guidelines, which wisely urge caution in starting and escalating opioids, has occurred at a breakneck pace since they were published, with real human consequences. Patients in serious pain face delays and denials when they attempt to fill their prescriptions, sometimes with tragic results. Some doctors have felt compelled by the guidelines to put patients who have relied on opioids to safely and effectively manage pain — often for decades — on lower doses or to take them off opioids altogether, even when they believe patients are benefiting from the medication, because they fear oversight and liability.
According to the authors, the guidelines have also been incorrectly applied to people they were never meant to cover, such as those with pain associated with cancer, surgery, or acute sickle cell crises.
This helpful perspective from the authors of the opioid prescribing guidelines comes on the heels of a related April 9 announcement from the Food and Drug Administration warning that abruptly stopping opioids or reducing doses too rapidly could cause uncontrolled pain, psychological distress, and even suicide in patients. The next day, CDC Director Robert Redfield issued a letter clearly stating that the opioid prescribing guidelines do not support abrupt or mandated tapering — reducing the daily dose of opioids in ways that are not undertaken in a carefully negotiated, patient-centered way.
The vigor of these warnings from the CDC and the FDA should discomfit those who have turned the guidelines’ cautionary thresholds into a shield from institutional risk, and what can feel like a sword to the patients who find themselves treated as liabilities by the clinicians and institutions charged with their care.
For us, the declarations are a welcome first step toward ending the trauma that we have observed and advocated against. One of us is a physician-researcher in primary care and addiction who has reported on patients’ fears, medical deterioration, and sometimes even death after opioid reduction. The other is a civil rights attorney who publicly described her own past experience with opioids and severe pain and who now receives daily emails and phone calls from desperate patients. Some are suicidal. Others who were once able to work or care for children are now bound to bed or home and unable to support their families because the opioids that had kept their chronic pain at bay were withdrawn. We have raised these concerns in published articles in STAT and elsewhere, as well as with policymakers and, by letter and in-person meeting, with the CDC itself. Indeed, the April 10 letter from the CDC director responded to efforts organized by one of us and his colleagues.
While we wish the statements from the CDC and FDA had come earlier, they required courage at a time of collective tragedy due in part to excess prescribing and are a critical first step. They also reflect the recognition that harms to patients with pain are a reality that can no longer be ignored.
But can these statements from the CDC and the FDA counter across-the-board reductions in opioid doses and patient abandonment when doctors work in fear of professional jeopardy? What about patients who have already been tapered and have lost the ability to work and function — will their medication be restored? What will happen to patients whose clinicians are willing to prescribe opioids for them but who then face delays and denials from insurers or pharmacists? Will law enforcement agencies and medical boards stop using dosage thresholds as surveillance for physician prescribing practices, or will quality assurance agencies stop imposing a dose threshold as the standard for quality which, when taken in isolation without consideration for the health or safety of the patient, may incentivize forced tapering and patient abandonment?
As the American Medical Association has stated, the opioid prescribing guidelines have been misapplied so widely that it will be challenging to undo the damage. Limits are in place throughout the health care system — where precise day and dosage cutoffs have become common. One-size-fits-all provisions have found their way into law in at least 32 states and two recently announced federal bills, and countless policies from insurers as well as major pharmacies like CVS, Walmart, Walgreens, and Express Scripts. Many invoke the CDC’s guidelines while, as the authors of the guidelines point out, contravening it.
Recalibrating policy regarding opioids will require concerted efforts by multiple players in the health care system, including people living with chronic pain. The guidelines’ authors discuss the CDC’s considerable work with partners in the health care system to implement the guidelines shortly after they were issued in 2016. We hope it can now undertake a similar effort to help health care providers mitigate missteps in implementation that, despite good intentions, have gone well beyond what the guidelines supported.
When a public health measure designed for patient safety ends up doing harm to some, correction is needed. As problematic as opioids often are, they are sometimes the only viable option for serious pain where nothing else works. Careful opioid dose reduction can prove helpful in some patients, but there is no evidence to support reducing doses by fiat. The health care system’s failure to allow for nuance has put at risk the more than 10 million Americans who take opioids to manage pain.
The commendable engagement of the CDC and the FDA now gives us a chance to protect them.
Stefan G. Kertesz, M.D., is a physician at the Birmingham Veterans Affairs Medical Center and professor at the University of Alabama at Birmingham School of Medicine. His writing represents his own views and not those of any federal or state agency. Kate M. Nicholson, J.D., is co-chair of the Chronic Pain/Opioids Task Force for the National Centers on Independent Living and a civil rights attorney formerly with the U.S. Department of Justice.
I just wrote a letter to the Department of HHS because the US Navy discriminated against my disability/disease civil rights. Just as I thought, it will not get involved because it claims that the US Navy is not within its jurisdiction. Kind of ironic of how CDC is supposed to be under the control of HHS and how the CDC is allowed to push its guideline and agenda without the approval of the HHS. All of these government agencies that claim that they have the best interest of the American public’s healthcare say the same thing, “it’s not my job “. When are our government agencies going to stop this madness and do the job that they are paid to do and stop passing the buck?
Thaanks for a glimmer of hope.I had a good life before dec 2019.I was tappered in 2 months off. Oipiods i had been taking for 12 years.Then they cut me off completly with no options! Ive only got suicide left I cant find or afford illeagle drugs.I hope somthing changes but ive lost hope.Drs are getying paid kickbacks for nonsense drugs like gabapintin lirica and cymbalta. Drs doing this should be in prison as the cdc persons resposible! Pesonally id rather see them suffer in pain with no where to go like me.
All physicians & pain clinics are now refusing to prescribe me any opiate( including Ultram). I ‘ve never taken narcotics except following surgery. I’m now in extreme pain with titanium poisoning & arthritis. I’m almost bedridden & sleep only 2 hours each night.l’m allergic to steroids & this is all doctors are willing to prescribe & fail to inform the patient of harmful side effects.Nursing home patients are allowed unlimited amounts of narcotics & l’m not entitiled to any pain relief or quality of life? This is a serious violation of my civil rights . l would be willing to join in any lawsuit to correct this injustice.
I am so tired of seeing people say if you experience “Opioid Withdrawal” than you are an “Addict”. No, Anyone who has been on any type of Opioid medication for an extended period of time will experience withdrawal when the medication is abruptly stopped. This is simply due to the body becoming accustom to taking the medication. It has absolutely Nothing to do with being “Addicted” or being an addict. In fact, many types of FDA approved medications will cause “Withdrawal” symptoms if suddenly or abruptly stopped. Many different medications have to be “Tapered” or “Weaned” down slowly to lessen withdrawal symptoms, it’s not just Opioids. There is a lot of people that seem to think if they experienced withdrawal than they are addicted. There is so much mis-information that continues fueling this Opioid crisis it’s ridiculous.
These posts were not aimed to just focus on me . Everybody is not the same as you. My point is that a normal person life can change in an instant. A normal person can become dependent and highly addicted to drugs just by being prescribed them. I have met many recovering addicts that have shared their stories with me and I listened. We all had one thing in common, we started out as normal individuals living normal happy lives. Saying they are mentally unstable is wrong. We all do not live the same lives or have the same access to resources as most do. I was normal, living a normal life, going to work, paying bills and enjoying my time off with friends. I shared only a small amount of my life and experience with opiates because it’s not all about me, there is so many other people out there who can relate with their own experiences using opiates. The hand injury was not when I started using 30mg oxcodones. I was injured in an accident involving a semi in 2016. I suffered a very painful back injury and I was again out of work for over a year and was on heavy narcotic pain meds for over a year and then cut off abruptly. I went through severe withdrawals and sought them out on the street. 30mg oxycodones to be exact but my tolerance was really high so I had to take more to balance myself out just to feel normal. When I could not afford them anymore, I again went through severe withdrawals and intense back pain and could not take it anymore, I decided to end my life and attempted suicide. After all of that, I would never be normal again. I was broken. Now I am a survivor and working very hard at trying to recover so I can live a normal life like everyone else. February 14th 2020, Valentine’s day, after I got off work and left the VA, I was riding my bike in Tacoma, WA to go watch my sister’s children so they could go out to dinner. I had the right of way and was proceeding through a crosswalk. A driver was waiting at a red light to make a right turn was not paying attention, got on the gas and slammed right into the left side of me, launching me forward in the air and landing straight down on my head. I suffered a closed left rib fracture, blunt chest trauma, a closed nondisplaced fracture of distal phalanx of my left little finger, nerve damage and a TBI. I was offered narcotic pain medication but I said no. I instead was prescribed Ibuprofen, Gabapentin and meet with a musculoskeletal doctor on April 17th at the VA to discuss starting physical therapy. The first 2 weeks were hell but I kept going and since my accident I have headaches every single day along with pain from my other injuries all while refusing to be prescribed any narcotic pain medication. My emotions are distraught because I must have bad luck or something after being injured in another accident and cant do my normal activities or even pick up my 4 year old son Issac when he asks me too but I am not unstable in any way. But saying someone is, was emotionally unstable before they became addicts and recovering addicts is terrible. I just wanted to share my story to an extent and put the focus on everyone else who suffered and is still suffering because of a lack of very vital information people should have been told before this opiate crisis ever started. Instead of trying to criticize me for sharing my story and trying to stand up for other people who suffered and currently are suffering, and outright saying I was emotionally unstable means you all are assuming that about every other addict refusing to hear our very true stories. I’m not on here to get in an argument with anyone, or constantly going back and forth to explain what I know is true about my experience. I just do not agree with being told I was emotionally unstable was the reason why I became addicted and Im pretty sure my fellow veterans in my recovery group will say the same thing. Feel free to send me an email if you want to talk more about it. [email protected]
Own it Jake, you are an addict because you are mentally disturbed, and emotionally unstable… What I hear is a big baby crying the blues and not accepting responsibility for your actions. There are many that don’t become addicts, and a few that do… Do yourself a favor and try Step One again, then Step Two, and then Step Three… God be with you man…
I am almost 35 years old and a recovering opiate addict and I have been opiate free for a little over 1 and a half years. In my early 20’s, I remember going to see my doctor for lower back pain due to the heavy labor work I was doing working 13+ hour days. My doctor at the time did an “initial check-up” which only consisted of my temperature, blood pressure and only pulling up my shirt to look at my back. Afterwards, he then wrote me 2 prescriptions for Ibuprofen and Percocet. The Percocet script consisted of a 2 week supply of 60 5mg pills at 1 every 6 hours with refills. No x-rays, CT scan ect. I had many other situations like this one through my young adult years as I have always been pretty accident prone, none of which I was purposely seeking opiate medications out because of an existing addiction. And anytime I was prescribed a narcotic, it was always an unnecessary amount and there was absolutely no discussion from any doctor to me, not ever about the severe risks of dependence and addiction of opiates. When I ended up being hurt at work, I was on narcotic pain meds for over a year and my injury was my left thumb being pulled backwards all the way, damaging my nerve and my bone. And then one day I was cut off completely without notice or a tapering plan implemented. The withdrawals I experienced were so severe that I can’t even describe to help anyone understand unless they experienced it too. It tore me apart and my life was forever changed. I ended up seeking pain pills out because I could not take the withdrawals anymore. I lost my job, my home, everything I ever owned, my wife and my kids, about 90% of my friends and the trust of my own family followed by them not talking to me anymore. I slept in the woods for years and had to survive harshly relying solely on my military survival skills I learned when I served and eventually tried to end my life and nearly succeeded before I was thankfully revived. Today I am now divorced, get to see my kids only every other weekend, I live in VA house for homeless veterans working at the VA in a Compensated Work Therapy program making 13.50 an hour to save up to move into my own place. I have gone through years of mental health therapy and rehabilitation and I attend weekly recovery groups at the VA. I got on the suboxone program and It helped me get my life back to remain sober and regain control of myself. All that from doctors not being told by the pharmaceutical company’s all of the dangers and how extremely addictive opiate pain pills just are. And if it wasn’t for me being a Veteran, I would never be able to afford all of the treatments I did and the Suboxen program I am currently on. We are all labeled drug addicts, cancers of society, criminals even though I have never been to jail or have a criminal record and many other things that I will not write on this post. I am in the hiring process now of getting a job at my local VA as a government employee doing the job I do now. We are not all bad people, only misunderstood because of poor, if not no, important information about the risks and high dangers of opiate pain medication. And because of that, all of the people that require opiate medications to live a normal, comfortable life like anyone else. I am just 1 of millions of people sharing my story. I hope that anyone who needs opiate medication to have a chance to live a comfortable life to enjoy time with their loved ones and not have to suffer are not turned away because of the people that lined their pockets pushing these drugs out to doctors to highly supply patients without also informing the dangers and then after the damage was done and is still happening, to then declare an opiate crisis and ruin even more lives of the people that need them by taking them away completely. And just a extra side note: don’t judge an addict because they are an addict. You know nothing about what they have been through to be an addict. Thank you.
You were on low dose and for a short term. If your withdrawals were so severe, it means you are mentally unstable, and emotionally disturbed. I guess it is rough for the baby’s, but your ‘addiction’ is in your head, not your body. Read on and see what heavy dose, long term ia all about, and then go get some counseling…
James McDermott. I completely agree with your reply to Jacob.
@ james mcdermott… Mentally unstable? So you automatically assume that I became an addict because you said ” I must be mentally unstable”? And I was definitely not on a low dose. The “low” dose I described was when I was first ever put on opiates and the amount of meds I was prescribed was not a low dose by any means for someone that never put drugs in their body, and second I was not nor am I “mentally unstable” by any means. I wish I had every single narcotic pain pill prescription paper with me and able to post it with this comment. I was allowed to serve in the Infantry of the US Army and allowed to carry an assault rifle with a grenade launcher attached carrying live rounds, I handled and shot many other weapons and explosives while training and even trained in live round shoot house scenarios with my other fellow soldiers right next to me doing the same thing without any incident “EVER” because I am not “Emotionally Unstable”. I am a father of 2 amazing children who I love very much, I hold a job and pay my bills, don’t go around breaking the law, I do not have a criminal record, I am able to socialize around people and do many other “normal” things that “normal” people do. And my previous hand accident was just the tip of the iceberg. I only shared minimal information about me being prescribed pain meds. By the time I decided to get help, I was taking 8-10 30mg oxycodone pills per day because my tolerance levels were so high and very dependent on the narcotic drug. You do not have to be mentally unstable to become an “addict” sir. Why don’t you come sit in on my recovery group at the VA that I go to every friday and listen to my other fellow veterans and tell them how low the dose they were on was not enough to make them become dependent on it and they are all just “mentally unstable” women and men who honorably went to war to fight for our country and end up with a single bullet wound or multiple bullet wounds, or getting blown up by an IED. Some I see everyday, and the others, every friday at the VA and they seem pretty normal to me.
And I am not just speaking for my fellow veterans or myself, this is about all people who were and still are dependent on narcotics created in labs. Not everyone needs to be on a “high” dose or even for a long period of time to become addicted. The whole “labeling” thing about addicts who just have an “addictive personality” is a bunch of crap made up to use against victims subjected to lies about a drug someone created in a lab from the poppy plant and did not present the dangers that came with it and many other highly addictive and dangerous narcotic “miracle” drugs out there right now. More and more people became guinea pigs for some “miracle” drug created in a lab that “helps” a condition and symptoms they are having without first fully informing them of the full pre-cautions and dangers associated with that said drug. Let’s just wait until people start dying by the thousands and then we will tell them how addictive and deadly it is. “Normal” oh wait I meant, “So many Normal people…, sorry man, my bad again, I meant Emotionally unstable” women and men become dependent on the narcotic “miracle” drug and when they got cut off cold turkey without a tapering system in place, they suffer from the extremely harsh withdrawals once the drugs Half-Life expires and slowly leaves the body through urinating until a few days to a week, it’s completely out of their system and when they are cut-off from doctors, the drug is then sought out on the streets and because of how insanely expensive it is, those “normal” oops I did it again, I again meant “Emotionally unstable” people had to lower themselves to start stealing and robbing people just to afford a pain pill until the cheapest they could find was ” HEROIN”. Another drug created in a lab. And then the “normal peop… Emotionally unstable” we’re criminalized and a label was held over their heads, “ADDICTS”. And then when it spiraled insanely out of control and the “ADDICTS” started dying, the “Opiate Epidemic” was created to cover the tracks of the real ” Drug Dealers”. And let’s not forget the most powerful opiate of them all, “FENTANYL” that is out there on the streets right now being laced in heroin, pills and who knows what else. That certain Highly Potent narcotic is so dangerous and deadly that even responding paramedics and police officers to a possible overdose or death almost die just from touching the person who overdosed because this said person ingested “Fentanyl”. I am not some grown man living in my mommy’s basement wearing a tinfoil hat thinking the earth is flat, “no offense flat earthers”. I am just a NORMAL man standing up for other NORMAL human beings, who were uninformed and misinformed about a narcotic “miracle drug” that helped with pain we all were experiencing in many types of ways. I have searched many, many different websites and read the comments left by a huge, mass amount of “normal” people suffering because they have been cutoff from their pain medication or had the amount of opiate mg dose they have been accustomed to for long periods of time, reduced taking away their comfort and therefore not being able to do the regular things if not the only things they can do to live a somewhat, normal and comfortable life doing the things they love and enjoying it with family and friends because doctors are afraid of losing their licenses from the new harsh regulations created from the “Opiate Epidemic” and therefore are left immobilized, unable to barely function or enjoy any sort of their lives nor even enjoying time with their families and 95% of them responded saying either they would either search for the drugs illegally or take their lives to end their suffering. Those comments coming from “NORMAL” people. I care less about ever being labeled an “Addict” because we are all “Addicts” in this world. Cell phones, sugar, fast food, tobacco, sex, television, money, spending and so much more and I don’t want to say the other sick and twisted things people are addicted to and not to mention almost every human being takes some sort of drug to live a “Normal” life. You say I am “Mentally Unstable” well then stop and take a look around because it appears that everyone else is as well. Don’t make assumptions and give your prognosis when you know nothing about me or my life or my brain or anybody else in the world from a comment made on the internet. Go spend some time in recovery groups and sit and listen to other addicts stories. You might see that they are all just normal human beings like you and me and you might learn something.
Well, Jake, I had no idea you were such a together guy. Then how did you end up taking 8-10 30mg Oxy’s per day if you are stable? I’ve been taking high dose for over 29 years, and have never misused my scripts, nobody has ever touched one of my doses, and I don’t go to ‘meetings’ with addicts where they lie to you and tell you you have a disease. The AMA did that, and now a million addicts get $800-100 every month to help pay for their drugs and alcohol. And guess what, Medicare pays for them to go to treatment centers where they are told “they are okay, they have a disease”. Interesting, they have all been to treatment several times, @ $20,000 a pop, and these treatment centers are owned by Doctors, Politicians, and insurance companies that reap the benefits of the lie, rather than tell these poor suffering folks that many people don’t become addicted because they are stable, it is the ones that are mentally ill, and emotionally unstable that become addicts. . I guess you are the stable one though, there always has to be at least one right? Be well Jake, and remember denial is not a river in Egypt…
I’m sorry to hear of your addiction Jacob. It should be noted that the addiction rate is 6% for people taking narcotics. I’ve been a nurse for 40 years and your story of physician prescribing is not the norm at all.Most physicians are careful and in my personal experience, unwilling to prescribe even when it’s necessary. A patient has a responsibility to use medications cautiously and research what they are taking. You are unwilling to admit to any part you played in this including your loss of self control. It’s people like you who have ruined pain control for vast numbers of suffering people who are driven to suicide and despair because doctors will no longer treat them. There are two sides to this story and it involves cautious people like myself and out of control persons like you.
Please someone who knows how to get ahold of the administrator of this forum needs to report Pain doc. He is confrontational and condescending. If he really does “practice “ he needs to find another vocation.
Yes Really!! Pain doc needs to be kicked out of here!! I’m sure he’s enjoying this, but no one else is.
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