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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.

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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.

  • Thank you for a well reasoned and comprehensive statement regarding this miserable situation.

  • Yeah I can only stand 2 hrs at work now my Dr cut.me cold turkey .You tell me how I can support myself .I’m in bed most if the time don’t want to go anywhere or live with the pain I have .You can tell them thank you for making.my life a living hell.not only.did I detox by myself.now the pain us horrible can’t sit sleep or feel like eating anymore and I’m 62

    • I’m sad and sorry to hear this, Debbie. Being cut off cold turkey is exactly what the FDA, specifically, came out strongly against. Is there any chance you might be able to hit the link to the FDA’s clarification and take it to your next appointment if you are still seeing the same doctor?

  • I feel like I am being singled out ,because I do not abuse my pain meds,but my doctor is going to taper me off which she has and is afraid of losing her license,and now is saying that she is tired of all of this and not being able to treat her patients,so she is going to do pain management anymore.She is so disgusted about all the paperwork she now has to do and checking urine samples which she pays for every time I go now I have to have urine test plus bring ALL my meds I am taking.I feel like I am being made out to look like a drug addict or a criminal because of my meds.I cannot get up in the morning or go to sleep or function at my.job because all of my pain .I have severe pain below in my private part that there is no cure for (vulvadynia) and it is so excruciating I cannot go on.Sometimes the pain is so bad that I want to put a gun to my head.But my pain meds take the edge off in a way I can tolerate my affliction. We need help ,and there are people going to the streets looking and paying a lot of money to sources who sell pain meds to get releif.It is so.sad that is illegal but what else are people to do.Drug addicts are going to abuse drugs no matter what ,its never going to end .Overdoses will still happen and fentanyl will still.be coming here.So stop.making is suffer because of the actions of others.

    • Debra, I am very sorry to hear that this is happening to you. Tacking physician fear of oversight is absolutely the next most important step in trying to rectify an untenable situation for pain patients.

    • I am very sorry to hear this Debra. You are right that until doctors cease to fear for their licenses and livelihoods, things are not likely to change for pain patients. These actions by the chief public health agencies was an important first step, but there is a long way to go to shift things in ways that will matter for patients like you.

  • I have had chronic pain for many years. My primary care physician treated me until all the government rules took place. He stopped prescribing and referred me to a pain management dr who treated me like an addict and was so rude I left. The 2nd dr was much worse. He subjected me a multitude of tests to prove I was in pain. Once he was satisfied I was he started treatment. He was the most verbally abusive person I have ever met in my life. He subjected me to hrs of unneccessary conversations about his personal life at every visit. As bad as he verbally abused me, a 75 yr old great grandmother, I can only imagine how he treated younger patients. I had rather live the rest of my life in constant pain than than be subjected to that every month. He should not even be in practice much less treating people that need help
    This is what people that take medication responsibly has been forced to endure just to get relief from pain because of the government making medical decisions that lump everyone into the same category.

    • Barbara, I am very sorry to hear that you’ve had such awful experiences after your primary care doctor stopped treating you.

  • Thank you! For some of us, opiods are necessary and carefully self monitored. The only med that does not make my stomach sick.

    • Yes, Lori, sometimes opioids are the only medication that work for people and they should be an option, especially in cases where other treatments have failed to provide relief.

  • I’ve had chronic pain for years. My doctors office was being taken over by another hospital 2years I’ve been suffering. I don’t know who can help me. My family physician can’t help me because of restrictions.. My pain level is 7-8 every day!!! Please help me!

  • Finally, a common sense approach to effectively treating patients who suffer with chronic pain. My adult daughter has chronic pain from a rare congenital defect. Her life has been ruined by heroin After being denied pain medicine by insensitive zealots who do not use common sense in treating chronic pain. Why can’t people use common sense instead of going from one extreme or the other. There is middle ground to consider when making decisions.

    • Kimberly, I am especially sad to read this comment – and to know that your daughter felt that there was no option other than to turn to heroin for pain relief. I hear from family members of others who have made similar choices. I am so sorry.

  • This has been a nightmare of pure evil and ignorance.The hell I have been intentionally put thur is inhumane,I do not know if I will ever recover from it all.Thank God someone is finally speaking out,I tried to speak out,but the doctors,hospitals,even the ADA beat me down so low,I no longer have the fight left in me.

  • This is a good beginning. However, there needs to be protection of the patient, the Physician who prescribes the appropriate dosage-meaning high dose opioids, and NOT be reprimanded by the DEA. Once that happens-everything from insurance companies, pharmacists, etc. need to ALL be on the same page! I say this-because every State has made up their own rules! The Govt. needs to step away from the Doctor/Patient relationship. This needs to happen NOW! Too many pain pts. have been harmed, and Drs. who have abandoned patients are going to have a hard time regaining the trust of a pain patient. But, if this can be remedied now-there will be a chance for good to occur. My one wish: there truly needs to be more education regarding intractable pain and air a National TV ad declaring the difference between pain management vs. pain addiction, which are two very different things!
    Sincerely, Kathleen Clark, RN ( retired).

  • I’m so Glad to see the serious change is needed & the important people are listening to us. So many patients have had their meds reduced & are truly suffering. Quality if life gone down s i much because o f pain. I myself have a Great Doc ty or who understands my severe pain. It’s a serious Epidemic. Pain is a real thing & we don’t take Medicine for our enjoyment. We need it to live & function. We do matter.

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