My wife and daughter are chronic pain patients. On behalf of them and others like them, I have spent 22 years moderating social media support groups and analyzing medical literature so non-doctors can understand it. My degree is in engineering, not medicine, though I’ve learned a great deal about pain, pain relief, and health care in the United States.

In the 50+ Facebook groups I support, I hear from people in agony every week. To protect identities, here are some paraphrases from online posts:

  • My doctor forced me to taper down opioid therapy below a level that had for years given me relief from pain and good quality of life for years. Now I’m totally disabled and in constant pain.
  • My doctor’s practice says they will no longer prescribe opioids to anyone. But no other pain center in our area is taking new patients.
  • My doctor wants me to take Tylenol and learn to meditate.
  • I can’t take much more of this.

Doctors should have gotten the message by now that deserting patients is a violation of medical practice standards, not to mention human rights. But they haven’t. To the contrary, they’ve been hearing about other doctors who got raided by Drug Enforcement Agency swat teams, their patients terrorized, medical records seized, and practices ruined by announcements in local news media. Compounding such brutal tactics, chain pharmacies have compiled high prescriber lists, blacklisting “top prescribing” physicians and denying prescription pain medication to their patients.

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Much of the mess described by patients stems directly from the 2016 Centers for Disease Control and Prevention’s “Guideline for Prescribing Opioids for Chronic Pain.” In it, the CDC urged practitioners to avoid increasing opioid doses for new patients above daily doses of 50 morphine milligram equivalents (MME). For patients maintained on doses above 90 MME, doctors were told to conduct and document risk and benefit reviews.

The CDC guideline became controversial almost immediately after it was published. Despite major criticism, it was widely interpreted by physicians, hospitals, insurance providers, state legislators, medical boards, and the DEA as a mandate for hard limits on prescribing opioids — even for so-called legacy patients for whom long-term or high-dose opioids had already proven safe and effective.

Since the publication of the guideline, the American Medical Association, the American Association of Family Physicians, and other organizations have repudiated the science, logic, and conclusions of the CDC guideline and of the DEA’s witch hunt. But nobody in government is listening to medical professionals any more than they are listening to patients.

In November, 2018, the American Medical Association’s House of Delegates issued its groundbreaking Resolution 235. It reads in part:

“… no entity should use MME (morphine milligram equivalents) thresholds as anything more than guidance, and physicians should not be subject to professional discipline, loss of board certification, loss of clinical privileges, criminal prosecution, civil liability, or other penalties or practice limitations solely for prescribing opioids at a quantitative level above the MME thresholds found in the CDC Guideline for Prescribing Opioids.”

In April 2019, under fire from medical professionals across the country, the CDC advised against “misapplication” of the guideline. Writing in the New England Journal of Medicine, three authors of the guideline said it was never intended to become a mandated standard, even though more than 30 states had incorporated it into legislation in the three years since its publication. At about the same time, the FDA issued a safety warning against rapidly tapering individuals off opioids or suddenly stopping their administration, based on known harms to patients.

As many patient advocates said at the time, the CDC and FDA announcements were too little too late. Tens of thousands of patients had already been deserted by their doctors or forced to give up the pain medications that had allowed them to function.

Physicians have been stepping up their criticism of the CDC guideline and the DEA’s presence in their medical practices. Last month, the American Academy of Family Physicians and five other professional groups representing 560,000 physicians and students called on politicians to “end political interference in the delivery of evidence based medicine.” As they noted, “physicians should never face imprisonment or other penalties for providing necessary care. These laws force physicians to decide between their patients and facing criminal proceedings.”

On June 10, the AMA issued Board of Trustees Report 22 which, among other things, condemns the use of “high prescriber” lists by national pharmacy chains to blacklist high-prescribing physicians and prevent their patients from having pain prescriptions filled. Pharmacies aren’t the only ones using this tactic: Regional U.S. attorneys are also sending intimidating letters to “high prescribers,” warning them that their “prescribing practices may be contributing to the flow of prescription opioids into illegal markets and fueling dangerous addictions.” This claim, however, is not substantiated by medical evidence.

Against this background, there is an inconvenient fact that no one in government wants to hear: almost the entirety of the public narrative that shapes federal and state opioid policy is wrong. Using data published by the CDC itself, a colleague and I have shown that there is no relationship between state-by-state rates of opioid prescribing by doctors and overdose-related deaths from all sources of opioids, including legal or diverted prescriptions and illegal street drugs. In other words, there’s no cause and effect between prescribing rates and overdose deaths — and historical charting of the data reveal that hasn’t been the case in 20 years.

Opioid prescribing and opioid overdose deaths
Data from CDC Wonder

Even as rates of opioid prescribing dropped by 25% between 2011 and 2017, opioid overdose deaths continued to rise.

As opioid prescriptions decline, overdose deaths increase
Data from CDC Wonder

The central assumptions of government policy regulating medical opioids are directly contradicted by data on prescribing, mortality, and demographics. The implications are profound and obvious: regardless of the greed and misdirection of a few bad apple doctors, government restrictions on prescribing opioids to pain patients are based on mythology, not fact. And overreach by the DEA is destroying tens of thousands of patients’ lives for no good reason. I hear every day the stories of pain patients victimized by over-regulation. You can read some by scrolling through the comments on this STAT article, or this one.

Government policy for opioid pain relievers is now a vast tangle. Patients, families, and their doctors need somebody to cut this bureaucratic Gordian knot and end the madness. That somebody is Congress and the time is now — before governments lapse into even deeper paralysis during the 2020 election campaigns.

It is time for Congress to direct the CDC to withdraw its guideline for a ground-up rewrite by an agency like the NIH or FDA that actually knows what it is doing. Likewise, the Veterans Health Administration must be directed to withdraw its closely related “Opioid Safety Initiative.” Veterans tell me that medical practice standards embedded in the initiative are driving vets to suicide by denying them treatment with opioid pain relievers. Finally, the DEA must be told to stand down and stop persecuting doctors who are legitimately prescribing opioids to their patients with chronic pain for “over-prescribing,” something for which no agency has yet created an accepted definition.

There ought to be a law … and I volunteer to help write it. AMA Resolution 235 (described earlier) must become mandatory policy for all federal health care and law enforcement agencies: the CDC, FDA, NIH, DEA, VA, the National institute on Drug Abuse, and the Department of Justice, to name just a few. Then state-level drug regulators and law enforcement need to be informed of the policy change — pointedly.

It is time to end the madness!

Richard A. “Red” Lawhern, Ph.D., is a non-physician patient advocate, moderator of online patient communities, and co-founder and former director of research for The Alliance for Treatment of Intractable Pain.

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  • I was taking 200mg of Tramadol each day for chronic pain due to severe Fibromyalgia. I also have DDD. I have osteoarthritis in my neck and arthritis in my lower spine – very painful. I also took 2 Lorazepam for severe Insomnia that would not respond to anything else that was tried over the span of five years. I have PTSD and Severe Hypervigilance. My long term doctor retired, and after that, all hell broke loose. I was immediately informed that I would have to “choose between pain and sleep”. I was lied to and told “it’s the law”, when it is not. I challenged them to show where in “the law” it states I cannot stay on my meds. They had no response – because they know damn well it is not the “law”. Since being forced off all meds, my health has taken a downward turn. The pain is agonizing. I cry everyday. I wonder how long I will be able to keep my employment after 28 years with the same employer. I cannot sleep due to the Insomnia, so I have rationed what is left of my prescription, and do not take it on my days off from work. I do not sleep on my days off. The body needs sleep to repair itself, and for those with Fibromyalgia, sleep is critical. They do not care. I have burn marks covering my back from the neck down from years of using a heating pad for some comfort. Even on the Tramadol, which is very weak, I was still in severe pain, but I never asked for anything stronger. I was on these medications for ten years. No doctor bothered to ask any questions about my symptoms, nor did any doctor exam me. I have this “hump” growing on the top of my spine, on my neck from Cortisol (stress hormone), due to the Hypervigilance and PTSD. I have been treated like a drug addict, and shamed for taking those meds. I was told “you might overdose, and I will be blamed and lose my job”. Really? I have lost most of my life! At this rate I will lose MY job. I took my meds for ten years without incident. Now I am being treated like a child. If I was going to overdose, it would be on purpose. I have always been careful with my medication. The lack of empathy is stunning. I struggle every day thinking I will only have peace of I take myself out. I cannot do that though, because I worry for my soul. That is the only reason I am still here. I have argued, fought, tried to get someone to listen to reason. Nothing. I plan to file a complaint with the state against the medical board that controls ALL of the doctors in my town. This medical board bragged about their role in “cracking down on opioids”. This is how they crack down – by forcing people off the meds that have kept them stable for many years. My blood pressure has skyrocketed, it is hard to breathe through the pain. Add to that the sleep deprivation, and I have heart palpitations all day, every day. I have Mitral Valve Prolapse which is aggravated with severe stress. That is why I have the heart palpitations. I fear that by the time I finally get restored to the meds I took for so many years, it will be too late. No doctor will be held responsible for my death. It is cruel and inhumane.

  • Very informative article. Makes me sad so many people have been deserted by their drs because they misinterpret the guidelines. All of that suffering for no reason. Why don’t the drs fight back. Fight for their patients. Fight for the right to treat their patients without interference. As a group they could really make a difference in getting these “laws” changed

    • Patients need to contact Congress: Their state Senators and Representatives.
      Patients really suffering from lack of or NO treatment need to be Heard.
      Call, Write, Email, Fax and then do it again. If enough people do this they do worry about their voters and the election

    • My Dr. Is lowering the quality monthly, gave me a list of Drs. to call in pain Management, but tried before and noone prescribed opioids due to the new laws in Louisiana, he now stopped to not lose his lisence. I read these posts and know soon I’m gonna be suffering. Had a car accident no fault of my own, By a drunk illegal on the wrong side of the road.

  • Have been a chronic pain sufferer since 1991. Was taking hydrocodone 7.5 one in the morning one at 4pm. I was ok. In 2015 diagnosed with RLS. Given clonazepam 2mg TID. In Nov 2018 my hydrocodone was discontinued and was given tramadol 50mg two TID. My clonazepam was decreased to 1mg TID. Tramadol is classified as an opiod when it certainly is not an opiod. Now they have me down to Tramadol 50mg TID. Clonazepam 1mg QD. My sister has 2 strains of Lupus. We have MS and RA in our family. I dont care what you name my pain. There is something like 4000 connective tissue diseases. I just dont want to be made to hurt because my healthcare provider is scared to treat me. “Get your marijuana medicinal card” I kid you not. Really! I dont want to smoke pot! I want to have some level of quality of life.
    Thanks for letting me vent.
    Jetta from Oklahoma

  • Tell your disabled friends to file a complaint here. It just takes a minute. I did. I got a confirmation back. Every case is looked into. Backlog this thing. Here it is.
    https://www.ada.gov/
    complaint filing is right in the middle of the page.

  • Linda, If you are disabled file a complaint here. It is easy. Right in the middle of the page. They are getting lots of complaints from disabled elderly who have had their medicine tapered. Here it is. DO IT! https://www.ada.gov/

  • I am 65 years old and a chronic pain patient. I have been disabled for the last ten years. With the help from an implanted spinal stimulater and pain meds, I have been able to live with moderate pain. Now the pain clinic is cutting my pain meds by half because they have been mandated or intimidated by Government Officials that tell them no patient is to be taking more than 90 MME. My day now consists of laying down to sitting in a chair due to increased pain. I feel I have lost all hope.

  • I’m one of thousands of patients with chronic pain, I’m 62 years old and I’m mentally young with strong desire to became to a productive life, and with a history of many operations, fibromyalgia, lupus, foot , shoulder and bicep replacement, and many other trauma, like depression and multiple hernia repair operations., on top of that they removed my gallbladder unnecessarily. I think is cruel just to stop the opioids to patience that means to live without pain . Today 9-16-19 at 5:17 pm get out of my doctor he denied and I only have 24 days of a complete shoulder replacement. And both doctors playing game with my pain the orthopedic and my pc doctor. That isn’t fair.

    • I can so feel ur pain. No pun intended. I am 66 years old. And even tho I have lots of issues I think of myself as a young old person. I too was told today no more pain meds. By the pain management guy my family phys sent me to. He won’t give me any because I take a sleeping pill. I have taken both of these meds for years and years. Now all of a sudden some stranger thinks they know me better than I know me. I’m hurt. I’m angry. I’m worried. I don’t know how I will manage to move about. Mentally and physically I feel done in

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