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.

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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 (CVS), Walmart, Walgreens (WBA), 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.

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  • Is there anything we can do about being force tapered off our medications by our Doctors? Is there anyway to go about turning these Doctors in for Medical Malpractice or Negligence? If so, I really need to know where to go specifically whether it’s to the State Medical Boards or Who it is directly to file a “Formal Complaint.” I am going through absolute hell as I know many, many other pain patients are…but this is damn inhumane. I am suffering greatly and my doctor shows no mercy or compassion. I begged him to slow down my forced taper to which he shook his head positively No. We will continue your opioid taper at the same rate. I had been on my medications at the same dose for 2 Decades with no issues, no problems until now when out of the blue My Dr. Told me he will begin force tapering me off. I am in immense pain that will not seize. I have broken 3 teeth recently from clenching/grinding my jaw from sickening constant nauseating pain. I am at a loss of what to do. I have 3 children and do not want to put them through the loss of their mother. If it wasnt for my children I would have ended it already. If anyone knows who to contact to at the very least file a formal complaint against the Dr. Please let me know. I have been treated by this Dr. For 10 years, and now have been completely abandoned and left to suffer through an inhumane taper against my will for nothing more than the Dr.s fear of continuing to prescribe. This Dr. Is an Anesthesiologist mind you who owns his pain mgmt practice. If they cannot/will not prescribe anymore who can?

  • Madeleine: I’m also in Austin so I know what you’re talking about. Avoid Advanced Pain Care but try Capitol Pain Institute & see Selina if you can. It’s not great but beats nothing. There’s another doc who’s supposed to be really good but won’t take new patients without a referral from another doc.
    This whole thing is such crap. Hang in there.

  • I’m appalled that someone smart enough to become an MD isnt smart enough to see these are suggestions & not mandates. I’ve been on some sort of pain management for 30 years. I’ve had 40 surgeries & im 48. I’ve never asked for them to increase my dose, ran out early or failed a UDS. Yet I had to come out of pocket (I have no insurance) for an MRI, injections in both hips (which didn’t help at all) only to be told every 30 days my doses will be reduced. I have bulging, herniated discs in neck & lower back. Arthritis in back & hips, scoliosis, spinal stenosis, a tear between joints. Degenerative disc disease & have settled being at about a 7 daily. I accepted a long time ago I will never be pain free. I’ve had surgery on L knee twice & was told I need a total knee. Surgery on a torn labrum in L shoulder which hurts constantly. Can’t sleep, eat or get comfortable. I’ve quit ‘living’. It’s changed who I am as a person. Over 3 months I went from 120 15mg Percocet to 3 5mg Lortabs. I mean, wtf?! Am I the idiot that’s paying out of pocket to be seen at a torture chamber?! They tell me well you need surgery. Just how they propose I afford that is beyond me. I don’t work bc my grandson & his little brother were Safety Placed with us in Sept 2018. The baby spent 31 days in the NICU as he was born addicted. The mother is a hardcore drug addict. Pregnant again & due any day… still using. My husband travels 75% of the month for work & clearly the baby has to attend a ton of drs appts to include physical & occupational therapy weekly. I’ve devoted my life to them. I hold him bc he wants me to love on him & I WANT to love on him but I do it with tears rolling down my face bc it’s so painful! I feel desperate. I 1000000% understand why people take their lives. We aren’t part of the epidemic of overdoses. We have pill counts, drug tests & sign contracts. It’s those shooting up
    dirty heroin that are dying. Why do I have to feel like a criminal (never been in trouble in my life) bc I want to be able to survive. Just survive. Keep my house clean, grocery shop & take care of these angels. I’ve done all they asked of me for nothing! I’m so sorry for all of you innocent people forced to suffer daily. FOR ZERO REASON! There is nobody going to come shut down honest & legit pain mgmt centers or strip licenses from MDs for doing what they say is our right… to assist us with managing our pain. I’m just beyond baffled. Thanks for listening.

  • I came home in tears today. Rejected by another pain Dr. The reason today was that I’d been to 2 other Drs who had in turn sent me to her. One was from the hospital, then to a specialist for my foot, then to a primary & finally today a 2nd pain Mngmt Dr to get a second opinion.
    Talk about Austin Tx medical runaround. I’ve been taking Ambian with no problem & I have 5 left. According to all these Drs – I’m on my own. Seizures, sleeplessness, death? All in the literature. No more pain meds, even down to Tramadol. What I don’t understand is how can Drs read about my physical traumas yet have no empathy, sympathy or understanding for my situation.
    So where do I go now? I’ve already been bedridden for months. Now I’m also hopeless. How can you medical experts do this to your clients (patients) not realizing that you ARE DOING HARM? Just another old fashioned thing called an OATH!

    I’m without the energy to throw myself on an “industry”s mercy. The businesses you run nowadays don’t care about me….why should I?

  • I thankful some of the people that belong to these organizations and have see or know how pain and pain medication does help a person or some of the people may them self seeing what’s happening. I had some explosive incident in military in early 70s and one or two injuries lead to others I’ve be taking opioids for 20 years now and have never ran out from one appointment to next and have been able to have some kind of a near normal home life . My wife has passed this year and there is no way I would going thur some of the painful days that we share before finding this Dr. I’d have to do something. And if a shame that with injuries and ptsd the the VA as a disabled veteran will not help so in comes out of home money and has so for 20 plus years I’m so thankful to see this group explaining that some people should not be grouped together as addicts cause of what and how much medicine one is taken.

  • Really who do you work for Deb. Now your grouping all disabled people in another category. Now we sell our meds. because we’re poor. Come on. I have money and would never sell meds. to take money. I took what I needed to have a life and now that has been ripped away from me. Because someone may be poor maybe they still want a life they can live like me and would never think of selling their meds. What a comment that’s just how the disabled roll. Your are disgusting and I’m hoping others find you the same way. To me it sounds like these people want their life back not MONEY you idioit. I do know getting this kind of a remark from someone just pisses me off. I want help not money which is why I stated if a attorney took this case for everyone who needs it they can have my share I just want to be able to get outside and go get my mail. Now I broke my foot in 4 places on top of what I’m dealing with and if someone would help with the pain I wouldn’t be selling it. Dammit you have pissed me off.

  • Well after all of this now there’s medical software available that decides how much risk YOU are to THE DOCTOR! So everytime he sees you he h gets a it graphically illustrated to him that allowing you to remain on even the 90 MME puts him at risk! Why you might ask well because you are living with a disability and therefore you are poor because the amount you receive from SSDI is not above the threshold for poverty and everyone knows that if you’re poor you are going to sell your own medication! That’s just how the disabled roll. They were once decent people who had lives and jobs and were trustworthy but then we got sick or injured and because of that we’re going to break the law in the most egregious ways! I don’t know of anyone who has had their does restored to levels that allow them to function again! There are no long term studies on the effects of opioids for chronic pain but thanks to the CDC and PROP and their greed there’s data on the outcomes of massive forced reductions!

    • Hi Deb,
      I kind of need some clarity here. Are you saying that because of this new software that docs have that poor people will sell their meds, Or are you saying that poor people on SSDI will sell their meds because “that’s the way the disabled roll”?

  • Charles Arndt: I’d bet she’s a medical assistant and not a RN-the true definition of nurse. These days, anyone walking into the exam room is called ‘nurse’ which is SO disrespectful to real nurses, who have advanced degrees and years more training than any medical assistant. Of course, they also cost more. Hence the reason for all the medical assistants these days.
    Twerking!!!! Seriously? Lmao

  • I am going to start taking a copy of the cdc recommendations with me to all my drs appts they should give u at least the minimums it is discrimination and u can sue for that remind the cdc of that there was a case won in va for being refused because he was a chonic pain sufferer as well if your dr just took u off your meds without a taper . Cdc says that should not be done i mean if the withdrawal is so bad like they say ask your dr is it wise do it folks look forward to your stories to deliver!

  • Unfortunately u cant sue dea cdc or fda or senators but u can your congressmen in. Certain instances they are not under the same gov protection they have managed to pit dr against patient now . All of a sudden the company that makes the varkous forms of pain meds with opiods os the bad guy !if u were on business u try to promote your product that all i can say is that i was somewhat pain free and functional. There are a few things we can do we have to get loud real loud . There are 2 things we have numbers and votes. Start with ypur local reps most u can contact on social easy make it clear to them if they dont change and soon not in 2 years your vote changes tell them your sory and be honest sincere. They haven’t heard your story but they sure know u have a vote let them know your going to contact every social media paper u can as well as all the tv personalities u can think of and do it then do it in writing . Yell them your hoing to start posting the names of the drs who have just stopped and dropped you believe me the cdc dont want that write or email them i am starting
    own writings and u can send me your story im delivering when i get 250 thousand to cdcif u send me i will take yours to them or a copy my address 1656 mooresboro rd shelby nc 28150 we can win we have to start telling them instead of each other bless u all !

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