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 have been living with chronic pain since 2007 , some days the pain is debilitating. I get severely depressed when the pain gets so bad, I hate living with chronic pain. It takes away your quality of life. It makes me feel worthless. The pain medication that I was on lowered my pain levels , I was able to have some Quality of life. They should all be responsible ( including doctors)for what happens to people who have to live with chronic pain with no pain medication ,that gives them some quality of life.
    Living with chronic pain is not easy to live with , people take their life because they can’t handle the pain.
    We wouldn’t treat our dogs like this.
    I am only 50 and I don’t know how long I can take living with this pain.
    They will be 100% responsible for the people who live with chronic pain and they take away the one thing that gave some quality of life. people suffering that just can’t take it anymore and they take their life ( pain doesn’t just affect you physically it affects you mentally)
    They should be held responsible for the lives that they will take for making people suffer with chronic pain or other illnesses. They will all be murderers. I myself will not live with this pain forever, I am 50 and because of them taking our pain medication away, “that gave us some quality life” they just cut my life shorter and they will be to blame.
    They won’t give a —- about that though.
    I bet if their loved ones were suffering in debilitating chronic pain, they wont be denied pain medication.

  • I have been in the worst condition than I ever could have imagined when the doctor that I have been seeing for years closed up on me without any notice at all. It was then that I realized that the medication I was taking, Oxycotin, and Oxycodone for years was helping me live a progressive lifestyle, and now I didn’t know what my next step was going to be. It has been a serious struggle, and yes it’s torture ever single day, and every since that dreadful day that I showed up for my regular scheduled appointment,,it has never been the same! Now I would had expected this from what I’d call a script_writer, but my doctor,truly was a caring Pain Mgmt doctor that picked his patients carefully, and only working with Chronic Patients! Since that day I can’t find a doctor that will prescribed the prescriptions that my other doctor was writing, and that I needed to function and maintain at the production level as I had grew accustomed to, and yes I can see why people are dying, and trying anything that might help them from being sick from withdrawals and pain ever single day. It’s horrible for anyone that has to live like this. and will continue until US THE PEOPLE SPEAK OUT.. The DEA, CDC and FDA isn’t qualified to treat patient’s!
    I found out later my Doctor left his practice due to pure frustration of the bully’s that tried to come in and run his practice., Also he has never lost a patient due to an overdose!

  • The accustion about you lying re: pain if your “neck isn’t broken on X-ray” is very revealing. In short (and I can go on and on, but I will spare y’all that), you have the wrong doctor, and in fact the wrong KIND of doctor(s). For decades doctors have been trained that pain is pretty much always associated with a structural issue (boken bone, cartilege or disc issue, bone on bone in some joint, etc). Fact is, my wife kept on getting shots and various “replacement parts”and other surgeries, but the pain never changed, except to get worse at times. Eventually, we deduced that the pain wasn’t caused primarily by any one or any combination of structural issue(s).

    After an accident in 2008 and nine hours of surgery to rebuild the upper spine, C-3 to 3-7, Carol’s central nervous system “revolted” and started sending pain signals to the brain all day every day (and night). The ONLY thing we ever found (and we tried everything) that would calm down the pain signaling (and only partially, at that) was opioid medication.

    Do some online research yourself concerning cencerning pain that is the caused by a whacko central nervous system. Then have a discussion with potential doctors to see what they know about this subject, specifically. The malfunction could be a condition within the nervous system itself and unrelated to a specific “other” anatomic location (neck, back, shoulder, hip, knee mostly) or a condition of the brain misinterpreting the endless and “normal” non-pain signals that occur millions of times, and instead mischaracterizing them as real pain impulses. If the doctor can talk intelligently about these more recently uncovered theories of pain, then he/she is not as likely to lead you down blind alleys like surgery, etc. But let me reemphasize that you need to take the lead in discovering the facts about the central nervous system as a potentially root of your pain issues; that is to say, it can be the attacker itself, not just the passive conduit to the brain where pain registers.

    I strongly suggest you (and others) watch and listen to Jay Joshi (world renown paid expert) discuss pain, especially central sensitization (VERY KEY), and how to think about numerous other types and aspects of pain. He is quite candid in criticizing the pain treatment community; he tells it like it is in terms of what practitioners usually do NOT understand about the science of pain. I think we will all learn and become more qualified to explore what your doctor knows that will put “us” (laypersons) on the same page with the right kind of specialists who are highly knowledgeable, science-orientated, and open-minded re: chronic pain causes and treatments

    Start here, and look everywhere: master the subject area — because it’s likely your doctor is not “up to speed”. If Dr Joshi could be cloned, we’d soon be marching boldly toward relief, personally and as a class of patients.
    https://www.youtube.com/watch?v=.

    p.s. If you are not yet aware of research and treatment around neuroplasticity of the brain, catch up on that also. Amazing stuff.

    Another great “leading edge thinker” source is Dr. Daniel Clauw at the University of Michigan. See what he says in articles and videos.

  • I have had chronic neck pain for about 4 years now. I have gone to many different doctors for a diagnosis but no one could agree on what is wrong. I have tried physical therapy, chiropractor, different medicines besides pain medicine, heat, nothing touching my neck etc. but my neck is constantly on fire from the moment I wake up until I lay down. I finally started seeing a pain doctor here where I live and he dropped me out of no where then got raided (so I’m assuming he knew he was doing something wrong but not with my medication) so I went to another pain doctor. He took me seriously and prescribed what I needed but then he got scared and retired leaving me out in the cold once again. So I found one more pain doctor and she will not do anything but Botox shots or trigger point injections in my neck. That’s fine, if it worked but it doesn’t. No change and actually more pain. I went to the Mayo Clinic for help and the neurologist said maybe a mixture of pain medication, shots, and muscle relaxers would help. But no one where I live will help me. I am in so much pain, I need to find someone who understands just because my neck isn’t broken on an X-ray, I’m still in major pain. Does anyone have any recommendations? I don’t even need the strongest medication . Just hydrocodeine is all I was getting and it helped tremendously where I could hold and play with my kids again. Please help

  • I just had surgery where i would be awake. The doctor doing the surgery went over my med list and saw that i was getting xanax which im only using short term for my anxiety and panic attacks. I got interrogated by 3 to 4 nurses on the day of surgery. I felt so bad . I felt myself shrink so small. My vision went black. I went home and cried all weekend. Im still messed up. Its sad. Because the only time i was finally getting releif. Inwas shamed for it.. This is out of hand. Thank for letting me share..

  • Hello:
    I just dropped by because my pain doctor of 13 years just fired me to reduce the total number of pills (Oxycodone 10-325) he prescribes in total to all of his patients. I heard yesterday 1/23 he lost his license to prescribe. My 5 pills a day wasn’t too hard to kick, I started cutting back a week earlier. Just profuse sweating for a few days, no throwing up (empty stomach). Lower body on fire, so I reduce the flames with beer, which I stopped drinking decades ago. Not bad when you consider the way in which they are torturing and killing people.
    When I was in college (20+ years 4 degrees) I had the opportunity to examine academic papers in several disciplines. I would like to examine their statistical work from the definition of a data observation through all of their analytical work. Choices of parametric, and nonparametric work which brought them to their results.
    An old Econometrician/Statistician

  • What are they cutting people back to now? I would like to know what they’ll have to take this time. So far I’ve not had to worry much about it. But ppl always asking me and I just haven’t heard much so I’d like to have an answer for them.

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