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, 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.

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  • I have been in pain mngmt for around ten years I live in extream pain pain doc had me on 10 mg Pecocet 4×daily and 2×daily morphine and live with debilitating disease I’ve tried everything some stuff like Kratom helps some people but in my case it didn’t touch this pain they took all of my meds now they just gave me tylenol 3 cuts the edege for maybe a hour then pain is back I tried going to a Chiropractor he did exam and xrays came back in after looking at them and said you know and now I know your body is screwed then said you ever thought about taking care of this yourself then said you have haven’t you I won’t tell anybody I thought man he just told me to go kill myself Dr Wienstien of Tulsa OK I couldn’t beleave what I heard how professional is that sad excuse for a doctor.now I an desperate and don’t know what to do am very depressed pain mngmt. Ask me why I’m depressed my reply was well if you lived with what I live with for years on a pretty heavy dose of opiods then have them taken away you’d be depresed to the tylonol barely does anything I tried the Buprenorphine patch with a opioid antagonist in it with a Nash side affect fainting spells and a few ocaisens so dizzy couldn’t even sit up.I just want the help I need but they just don’t seen to care anymore. Desperate in Tulsa OK.

  • I am a chronic pain sufferer who was told Boom no more Tramadol after 13 yrs. I appreciate the work being done here and receiving this information. I did attempt sucide, but didn’t succeed. Thanks for this, I know I’m not alone.

  • How much longer do we have to suffer! How long will till this be legal.My doctor is a good Dr. But not willing to lose license.Could you please do something soon.

  • Lisa, A veteran marine, Robert D. Rose in fact has a class action suit going nationwide, well it is in several states with more joining on board daily. Go to sickofsuffering.com He is NOT an attorney but has taken on this fight for our rights to live as painfree a life as possible all on his own, fighting for ALL vets/civilians alike being denied lifesaving pain medication. God bless this man for all he is doing. All info and the motion to join for every state is on the website and it is very easy to do. THere is a nationwide protest next week May 22nd in just about every state capitol I believe. Go to dontpunishpainrally.com for all info and another major protest taking place in June at the CDC in Atlanta.

    • Witnessed how they treated my ww2 vet father in 90’s…now its even alot worse! What the hell is wrong with them doing veterans wrong like that? Really troubling stuff.

  • I am a chronic pain sufferer and have been on pain management since 2014. I have had two (2) back surgeries with complications and I am disabled. I need additional surgery, but I am trying to put off future surgery, because of past complications from the surgeries and neurological damage. My pain management doctor cut my fentanyl medication in half due to fear of reprisal from government retaliation (due the guidelines being lowered for opioids.) I have been stable on this regiment of prescribed medication for four (4) years. My quality of life has changed drastically since my dose was cut in half and this current dose is inadequate and I will be lowered again according to my pain management doctor. I am bed bound/chair bound, due to pain and had in the past worked with the doctor to reach a dose where I am able to function. I could get out of bed, and do the little things in life that normal people take for granted. I now have to live my life in a bed/chair. I am very vigilant with locking up my medication so that no one else can access it. My pain management doctor drug tests me almost every time I walk into the doctors office (I go to pain management every 4 weeks), and the my drug tests are correct with what is prescribed. In the past I have tried a plethora of things, physical therapy, injections, different medications, etc. and nothing has helped the pain. I do not want to be on medication, this is not how I planned to live my life, but this is what I was dealt, and it helps me get through the day. The opioid crisis should be divided into two (2) groups, one being heroin/illegal fentanyl and the other is pain management patients controlled by the doctor. The pain management patients should not be penalized by people who abuse street drugs. I truly wish that you could walk a few days in my body and feel the pain that I am in, and what I have to live with, the burning/knawing/constant pain in my spine, and pain of arthritis in my arms, hands, feet, and knees. The doctors should be allowed to make that decision patient by patient without the government interfering. My previous prescription dose did allow me function, but now I am bed bound again, which is not living. You are hurting the people who truly need the prescriptions to function, because of the people who abuse street drugs. The guidelines are changing for political reasons to show that the government is containing the epidemic and not helping the patients that are truly and most vulnerable and in need. Please help me. This is a plea for sanity.

    The government is lumping everyone into one bag, which is not the case for people who have genuine intractable pain. So therefore, the people who are in most need of opioid prescriptions are not getting the help they need, because criminals are breaking the law and people like me are being punished who suffer with intractable pain, with no other options, just cutting my medication dosage down, so that I suffer and can not function in life. I did make it past the withdrawal stages, but the pain is unbearable. I have tried all other treatments, physical therapy, exercise, injections, etc. I can not take anti inflammatory medications, due to allergies. People with intractable pain should be exempt as are the cancer patients. I have been on the same medication for 4 years, never abusing it. I always go to one doctor who is in charge of my narcotics. I do not ask them to increase my medication. I am only asking to keep it the same dose that I have been on for 4 years and it helps me function throughout the day, but because of the guidelines they decreased my dose and will be decreasing it until I am down to the 90 MME, which means that I am going to have to live in unbearable pain. Vast majority of the drug overdose that are quoting are from illegal drugs. I am under the direct care of pain management, who closely watches and drug tests me every 4 weeks, and still they are under pressure to decrease their doses to their patients. You are condemning us to a life not worth living. What the government is doing is in humane!

  • What should i do i was on my pain meds for 13 years last 9 years was same dr. He wanted me on fentanyl or morphine i said no he got nasty i left Went to new dr she walked in door saying we do not write for pain meds never touched my body or did exam..sent me to pain management..he walks in door saying .i only treat with injections and again never gave me exam. He wrote a bunch of meds i never took before ..i told him i was in thetphy for years do to a pill phobia i told him i will suffer if ya dont put me back on meds ..he did not i suffered. Full blown withdrawal. I call my dr emergency hotline dr said and i quote.you are not gonna die you will feel like your going to die but you qont .take a Tylenol and get a bath youll be ok i was not ..it was horrible i prayed to die. Its been a month. Ive been on a low dose for 13 years only went up 5mg in all those years. Now what do i do who do i go to. Im in constant pain ..no relief..i need help my family helps me do things i just cant do ..on my pain meds i could do things like cook a lil or food shop ..now nothing .im in pa any advice .

    • Hello Diane … Have you heard of Kratom? … It has tremendously helped me. Your experience sounds similar to mine. The main problem is doctors and the current medical models do not have medical training to treat chronic pain. Try Kratom and start slowly … Doctors do not know what Kratom is, so just go slowly. The worse thing it has done for me is make me sleepy. Also, if it works for you, fight to keep it legal. The DEA and FDA, are currently trying to ban it.

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