Frontal lobotomy for the relief of intractable pain • CERGM


Hello Luvs,

Ohh My Goodness!!! Has our society gone completely mad now? These “sickos” may be taking us back in time to a period when people were given a Frontal lobotomy for the relief of intractable pain!! This is absolutely crazy, when a safe pill, called an “opioid” can help our chronic intractable pain patients. Who in their right mind would choose a frontal lobotomy over a safe an effective pill? The opioids that are getting a bad rap from anti-opioid zealots (read more about them, here: Anti-Opioid Zealots ), are not hurting the legitimate chronic pain patients. People who’ve been prescribed opioids for years, (a decade or even more) & have done well; are NOT addicted! Only about 1% of true chronic pain patients actually ever become “addicted” (Writer Josh Bloom, gives you statistics here: The Opioid Epidemic in 6 Charts, Designed to Deceive You ). It’s not prescription opioids that are the problem! It’s the illegal fentanyl from China & Mexico that are hurting, addicting & killing people! Addiction and dependence are two very different situations. You can find out more information about that here: Addiction & Dependence Are Not The Same

Who are the bad actors? Government, Healthcare or Patients? • CERGM
— Read on cergm.carter-brothers.com/2019/03/28/frontal-lobotomy-for-the-relief-of-intractable-pain/

Pushing Pain Patients into Labels “Opioid Misuse”


Hello Luvs,
My fellow advocate and friend, Bob Schubring sent me this message via email. I wanted to share with his permission. It’s regarding a bit of a turn around regarding this under-treated & untreated pain crisis. So without further ado, here is the message sending love & light:
“I’ve taken the liberty of clipping and dropping the entire article below.  It is compelling and I believe highly representative of the experience of many chronic pain patients.  Please feel free to reference these published findings in your own editorial or advocacy work.  I also attempted to submit a comment,  but NEMJ isn’t accepting input from non-subscribers.  I’ll look for a comment gateway direct to the editors. 

Title:  Reported Outcomes for Mister O are Highly Representative

As a non-physician advocate for chronic pain patients with 22 years experience, I see the story of Mr O repeated widely and horrendously.  The current regulatory environment on opioid analgesic therapy is grossly distorted by mythologies about who becomes addicted and from what sources.  Public policy is actively denying treatment to hundreds of thousands of people in agony.  Doctors are fleeing practice, deserting their patients;  those who do not flee are refusing the therapies that are often the only effective measures.

The largest mythology is the least acknowledged:  physician over-prescribing did not cause and is not sustaining our public health crisis in addiction and mortality.  CDC statistics reveal no cause and effect relationship between State by State prescribing rates vs opioid-related mortality from all sources, legal, diverted, or illegal. Contribution of medically managed opioids is so small that it gets lost in the noise of street drugs.  Moreover, the demographics don’t work and never have.  Seniors have the highest prescription rates and the lowest mortality due to opioids. People under 30 are six times more likely than seniors to die of opioids. 
Regards, 
Richard A “Red” Lawhern PhD

Director of Research

Alliance for the Treatment of Intractable Pain  

on Twitter: @theatipusa
Facebook:  https://www.facebook.com/ATIPUSA/
My Publications: http://www.face-facts.org/Lawhern
Personal Website:  http://www.lawhern.org

https://www.nejm.org/doi/full/10.1056/NEJMp1811473

Structural Iatrogenesis — A 43-Year-Old Man with “Opioid Misuse”

  • Scott Stonington, M.D., Ph.D., 
  • and Diana Coffa, M.D

Mr. O., a 43-year-old man with severe, destructive rheumatoid arthritis, had been receiving acetaminophen–hydrocodone at low doses from his primary care provider (PCP) for 15 years. He worked in an auto-parts factory in southeastern Michigan, and pain control was essential to maintaining his employment. His pain had been well managed on a stable regimen, and he had not shown evidence of opioid use disorder.
In 2011, his primary care clinic began requiring patient–provider agreements (“pain contracts”) and regular urine drug testing. Mr. O. participated willingly, and his tests were consistently negative for unprescribed substances. In 2014, his insurance company began to require annual prior authorization for all controlled-substance refills. Although there were small delays in receiving medication once a year when the authorization was due, the patient was able to keep his pain level stable on his usual regimen.
In 2016, Mr. O.’s PCP retired, and his care was transferred to another PCP in the same office, who followed the patient’s existing pain-management plan. The same year, the insurance company began requiring more frequent prior authorizations and then that prescriptions be sent to the pharmacy every 15 days. The new PCP was occasionally late providing these prescriptions and approving prior authorizations because of the required multistep interactions with the insurance company. Mr. O. did not own a car and had difficulty making frequent trips to the pharmacy. He began to have several-day gaps in medication. During these gaps, he experienced severe pain and mild withdrawal, as a result of which he performed poorly at work and received a citation. He became very concerned about losing his job.

Mr. O. made an appointment with his PCP and requested an increase in his number of pills, wanting to “stockpile pills so that I’ll never run out.” The PCP noted that Mr. O. seemed nervous during the conversation. She noted in the chart that the interaction “made her uncomfortable.” She knew that the previous PCP had reported that Mr. O. had shown no evidence of opioid misuse, but in the current environment of vigilance regarding the risks posed by opiates, she did not feel comfortable increasing the number of pills.

Three months later, the patient submitted a urine sample that tested positive for unprescribed oxycodone. When the PCP discussed the result with Mr. O., she learned that he had obtained oxycodone from a friend during one of his gaps in medication. 

The following month, oxycodone was once again found in his urine. Already overwhelmed by the frequent need for prior authorizations, and noting that Mr. O. had “violated his contract” by submitting two urine samples containing unprescribed opioids, the PCP referred him to a local pain clinic.

The wait time for an appointment at the clinic was 4 months. The PCP continued to provide prescriptions during that period, planning to stop prescribing as soon as Mr. O. had his first appointment. When he arrived at the pain clinic, Mr. O. learned that it had a policy of not prescribing opioids for the first two visits. Facing a prolonged period without his usual regimen, and having previously failed to obtain any “extra” acetaminophen–hydrocodone from his PCP, Mr. O. began purchasing his full narcotic regimen (in the form of oxycodone) from a friend.

Social Analysis Concept: Structural Iatrogenesis

Through a series of events, Mr. O.’s therapeutic relationship with his PCP deteriorated, and he became compelled to obtain medications outside the medical setting, which in turn increased his risk of overdose, as well as his risk of arrest for possession of unprescribed opioids. This shift was not precipitated by physiological changes in Mr. O.’s disease, need for medication, or personal attributes. Rather, it was caused by structural forces outside his control, ranging from clinic policies (pain agreements, a drug-testing initiative, a moratorium on prescribing) to corporate bureaucracies (insurance companies, factory management) to larger-scale social forces (poverty, lack of availability of transportation, lack of opportunities for work appropriate for someone with a painful condition).

We call this type of harm “structural iatrogenesis” (see box). Drawing on a long history of social science scholarship,1the use of the term “structure” emphasizes that Mr. O.’s poor outcome was determined by social forces and structures outside his control. The term “iatrogenesis” specifically focuses on the harmful role of bureaucratic structures within medicine itself. In Mr. O.’s case, many of these structures had been instituted to protect patients at risk for opioid use disorder: clinicians acted according to prevailing standards of care in chronic pain management; his prior clinic’s pain contract and urine drug screens were meant to prevent deviation from prescribed opioid use that might place him at risk for overdose or addiction; the pain clinic’s protocol of delayed prescribing was meant to prevent patients from “shopping” for opioid prescriptions; prior authorizations required by the insurance company were intended to reduce overprescription of potentially harmful (and costly) medications. But these systems were not beneficial to Mr. O. in the context of his economically and socially precarious life, which was shaped by a lack of transportation and a need to perform painful manual labor for economic survival.

Structural Iatrogenesis

Structural iatrogenesis is the causing of clinical harm to patients by bureaucratic systems within medicine, including those intended to benefit them.

Structural iatrogenesis is a type of “structural violence,” defined as the systematic infliction of disproportionate harm on certain people by large-scale social forces such as resource distribution and hierarchies of race, gender, or language.2,3 “Iatrogenesis” points to the causation of such harm by bureaucratic systems that are potentially under clinicians’ or health systems’ control.4

Clinical Implications: Stopping Structural Iatrogenesis

Clinicians who identify structural iatrogenesis may alter structures or create action plans to prevent them from causing harm. Generalizing from Mr. O.’s case, we would offer the following approach:


1. Recognize and alter structures that systematically harm patients.
 Clinicians may be the first to identify a structure that is systematically harming patients and can then advocate for or directly effect change. For example, in the 1980s, the Food and Drug Administration and physician organizations recommended that women undergo pelvic exams before receiving hormonal contraception. Some clinicians noted that these exams were a barrier to contraceptive access and stopped requiring them in their own clinics. By the 1990s, these local changes led to removal of the recommendation from national policy, which increased access to contraception and rates of effective use.5

Similarly, if Mr. O.’s PCP noticed that her clinic’s opioid-prescribing policy generated frequent gaps in medication coverage for patients in general, she could have advocated for a new approach. It’s important, however, to avoid the pitfall of thinking that structural harm emerges only from “broken” systems. All structures carry a risk of harm, even when they are functioning “properly.” 
The policy in Mr. O.’s PCP’s office might have been working well for most patients, but it turned out to be a poor fit for Mr. O.


2. Bend policies according to context.
 Attempts to standardize clinical care in order to ensure high quality often inadvertently lump complex phenomena into simplistic categories. Such oversimplification, in turn, can create structures within clinical care that harm patients more than help them. By questioning how such categories (such as “opioid misuse”) apply to particular patients and types of patients, clinicians can work to reduce the risk of structural iatrogenesis. The label of “opioid misuser,” for example, negatively affected Mr. O.’s care by failing to acknowledge reasons that he might be acquiring medications outside the clinic.
Similarly, clinic policies that penalize patients for arriving late to appointments disproportionately harm people who don’t own a car or control their work schedule. And policies of rewarding clinicians on the basis of quantitative measures of practice quality, such as reductions in glycated hemoglobin levels, may ignore complex disease interactions and the social factors contributing to diabetes and may create an incentive for clinicians to drop particularly sick patients. Instead, one might identify patients with particular vulnerabilities and adjust policies on the basis of their life context
3. Address implicit agendas head-on. Mr. O.’s care deteriorated when he was labeled an “opioid misuser.” This designation was putatively a clinical diagnosis, but it also marked a tacit category shift from “good patient” to “bad patient,” reflecting the mixing of clinical reasoning with moral judgment. Similarly, the insurance company’s rationale for requiring more frequent prescriptions mixed a harm-reduction agenda (reducing risk for addiction and death) with a profit motive (reducing payouts for medications). Mr. O’s poor clinical outcome was due in part to tensions between these implicit agendas. Clinicians often consider such agendas to be outside their purview, but given that they have such a significant impact on clinical outcomes, it may be more effective clinically to identify these agendas, assess their interactions, and decide which ones to prioritize. The staff of Mr. O.’s clinic, for example, could recognize the moral judgment involved in the diagnosis of “opioid misuse” and instead set an explicit goal of identifying behaviors that could increase a patient’s risk of addition, overdose, or dangerous side effects. They could then assess whether their established protocols were achieving that goal and how to balance it with other goals.

Case Follow-up

At Mr. O.’s next visit, his PCP expressed concern about risks of overdose and legal harm from use of unprescribed oxycodone. She persuaded him to return to the pain clinic, and in the meantime she agreed to continue prescribing his opioids. A medical assistant appealed for an exemption to the insurance company’s 15-day prescription rule, citing Mr. O.’s lack of transportation, fragile work circumstances, and long-standing treatment. At the time we wrote this article, it remained unclear whether these modifications would stabilize Mr. O.’s treatment and prevent his use of unprescribed opioids.

Disclosure forms provided by the authors are available at NEJM.org.

The editors of the Case Studies in Social Medicine are Scott D. Stonington, M.D., Ph.D., Seth M. Holmes, Ph.D., M.D., Helena Hansen, M.D., Ph.D., Jeremy A. Greene, M.D., Ph.D., Keith A. Wailoo, Ph.D., Debra Malina, Ph.D., Stephen Morrissey, Ph.D., Paul E. Farmer, M.D., Ph.D., and Michael G. Marmot, M.B., B.S., Ph.D.

The patient’s initial and some identifying characteristics have been changed to protect his privacy.

Author Affiliations

From the Departments of Anthropology and Internal Medicine, University of Michigan, and the Veterans Administration Medical Center, Ann Arbor (S.S.); and the Department of Family and Community Medicine, University of California, San Francisco, San Francisco (D.C.)

They Fell like Dominos: My License, My Certification, My Profession


Hello Luvs,This blog post is actually something that was written and sent to me by Dr Mark Ibsen, MD, a physician from Helena, MT. He wrote and says:

“I had similar experience. 
Guilty. 
Not even “guilty until proven innocent”
Just guilty. 
Once they set their sights on you,
You
Are
Fkkd. 

This system is feudal. 
Primitive. 
Insensitive. 
Ineffective. 
Unchecked, as in no checks or balances. 
Run by appointed people who are completely unaccountable. 
No recourse. 
In the name of “safety”, 
With no evidence of harm. 
Like a trip to the Gulag. 

The key is for patients to realize that doctors have become so vulnerable that we cannot risk ANY exposure to ANY accusations. 
A risk-averse environment due to the hostile regulatory environment we now have. 

So, as more and more patients despair over being abandoned by this system, the sacred physician patient relationship is further tarnished. 

I, for one, will continue to stand by the patients I can, and pray for those I cannot.” 

Here’s the article that accompanied the email from Dr Mark Ibsen, MD:

They Fell like Dominos: My License, My Certification, My Profession

Mark Ibsen MD
Helena MT

Draft Report on Pain Management Best Practices | HHS.gov


Hello Luvs,

What do you think of this?Request for Comment on the Draft Report, proposes updates to best practices and recommendations for pain management, including chronic and acute pain.
— Read on www.hhs.gov/ash/advisory-committees/pain/reports/2018-12-draft-report-on-updates-gaps-inconsistencies-recommendations/index.html

So, after you read about what the HHS task force has decided is best practices for people living with chronic pain. If you read the list of meds; it starts out with Acetaminophen, NSAID’s, Anti-convulsants & Anti-depressants. Then they discuss aqua therapy, PT, massage, Tai-chi, etc!!

What the heck don’t they understand about real pain, nerve pain, chronic pain? We don’t want to be touched because it hurts! I don’t know about you, but aqua therapy isn’t good for someone like me who has open sores from years of CRPS and Eczema secondary to that! How about NSAID’s that I cannot taste because of chronic kidney disease? Acetaminophen taken too much, too often causes liver failure and even death! Sooooo my opioids do not/did not cause any issues to my body except for occasional constipation! Big deal! Get Miralax or some “Smooth move tea”!

This once again, is upsetting to me and to many others! On one hand they advise to treat people as individuals case by case. On the other hand, they’re advising people with large amounts of ongoing chronic pain, most probably for a lifetime, to take Acetaminophen. How is that right or even thinkable for someone like me, for example? I was quickly tapered from Fentanyl patch after doing well on it for 14 years!! Now I sit in my recliner 16+ hours a day due to pain and fatigue. I honestly cannot take NSAID’s and “Tylenol just won’t cut it, Mr. Sessions!!”

Let me know what you think about the HHS task force recommendations?

Kratom, Great Help For Most but Deadly for Some


Hello Luvs,

There was a bit of a debate in one of my groups, regarding Kratom. I know it’s so helpful for many people. I do not think the government should step in and ban this too!! It’s relatively safe but I was discussing that it can and may help loads of chronic pain patients, but not everyone!

Like anything else, you need to discuss it with your Dr ahead of time and please get an EKG first. I have several complicated heart arrhythmias. One is pretty uncommon but most people don’t even know that they have it until they die from “sudden cardiac death” (which is its only symptom). It’s called “Long QT syndrome”. There are many thousands of medications on the “DO NOT TAKE” list with long QT syndrome. The list updates daily and herbs such as Kratom, Turmeric & Ginseng are among the things that people with LQTS cannot take. Please just be safe and I hope you continue to have or get access to whatever kind of pain relief works for you!

But please check out this article I’ve posted below:

**This article is mysteriously gone now? It disappeared from the internet: **Just a little info about Kratom before you take it

**(4-2019)now this is what shows up instead:

Letter To Leaders of Oregon Forced Taper


Below I’ve copied the letter that I wrote to the leaders of the state of Oregon, regarding their new proposal for forced taper off of all opioids in their state:

To Leaders of the state of Oregon,

I am writing to you with a plea for all of your constituents, as well the entire chronic pain population in the USA. What you are proposing to do, by eliminating opioids, is considered torture by the World Health Organization. You are also setting a precedent for other states, if this action against all opioids goes through!

When I’m proposing a big change, even just in my own household; I try to put myself in the place of other family members that my change will affect. Please put yourself in the “shoes (so to speak)”, of the thousands & later on, millions of chronic pain patients that you’ll be affecting and in reality, torturing. If you remove all opioids from your state, the suicide rate will increase dramatically and many intractable pain patients and their families will suffer.

Please think about what you are doing to trauma victims, burn victims and people with horrible chronic pain illnesses and cancer. Would you want to suffer with daily horrible pain, or would you want to take something that has been working for possibly even a decade (or more); to give you some semblance of a life with your children, grandchildren and/or your family. 

Please reconsider this act of cruelty and torture on those living with chronic pain in your state (& then future areas as well).

Thank you for reading my letter and I truly hope that your conscience will help you make the right decision for people who live with pain 365/24/7. Also remember that it could be you or your child, wife or parent at any time. We never know from day to say, what might happen. One minute I was sipping lemonade at an art fair; the next moment, I was hit by a car when the driver ran through a red light. This started my life of pain and I never could have imagined what this new life would be like.

Peace & Hope,

Suzanne Stewart

**Below is a photo screenshot that I took Of the reply that I received back from them:

Nowhere To Run



Going to the doctors office has never been one of my favorite things to do. When I was 5 years old, I filled my suitcase and “ran away” because I was afraid to get my Kindergarten vaccines. Now, I’m all grown up and looking forward to retirement; but I’m still that 5 year old deep down inside, more afraid of doctors than ever before. Why do they have so much power over us? Why do some use that power to make us feel inferior? Eleanor Roosevelt said “No one can makes us feel inferior without our consent”, but I feel it and I don’t remember giving anyone permission? We are living in difficult times for anyone who has debilitating, intractable chronic pain. There also is no place to “run”, no matter how big your suitcase is or how much money you have. There’s no grandparents at the other end to scoop you up and tell you that “it’s going to be OK”. Mostly, because it’s NOT OK.
Have you ever seen an action/crime movie where an innocent person was being tortured and/or thrown in jail, for something they did not do? A person being “beat up” but totally innocent? This is what is happening to the chronic pain patients in America today. I’m going to share a short story about what happened to me the other day. We always think these things only happen to “other people”. That “it won’t happen to us”. That is wrong and untrue. We live in a civilized nation, or do we? How can they treat us like this?
Here is a summary of what happens to me every 30 days. Each time I have to visit the pain Dr.’s office, I get physically ill, worse than usual. A few days prior to my upcoming appointment, I get more frequent stomach aches. I want to stay inside more and just sit in my “Lazy Boy” chair, with my blanket and with my cat cuddled up next to me. I wonder if “this will be the visit that “it” happens to me”? As the appointment time gets closer, I get more clingy to home and all things comfortable to me. A fear deep inside of me grows worse and worse. Then the morning of the appointment comes. I get nausea, dry mouth, diarrhea and I don’t want to leave my house. I cannot leave because no matter how much I talk myself out of these feelings, they won’t go away. My blood pressure, which has normally been low to normal, is very high for me at about 150/95 to 155/100. I feel sick and afraid. But I’ve never smoked anything and I have never taken any kind of medication or “drug” that was not specifically prescribed to me by a licensed physician.
The time of the appointment grows closer and I get even more distressed. Sometimes I cry and I just verbalize to my husband that “I don’t want to go”. I wonder why is life so cruel to those who are already living with agonizing pain and illness? I’m not one to feel sorry for myself. I really trust and like my pain Dr. too, don’t get me wrong. But I know he’s not my “friend”. He has heard every excuse in the “book”. He has no reason to believe anyone and he must go by what he sees in text. All day long other people have ruined it for the “good patients” who don’t deserve this kind of questioning, contracts and treatment.
It’s time to leave the house. But I cannot leave the bathroom. I take a bucket with me because I don’t want to vomit in the car. It’s a 30 minute drive and my painful RSD/CRPS feet are shaking even though they hurt. I cannot control it. My husband chuckles, kindly telling me that I’m “shaking the entire car”. We arrive at the pain Dr.s office. There are cameras everywhere, in the parking lot and in the office. For all I know, theres one in the restroom? I know that I left a urine sample last time, so I feel pretty calm about that not going wrong. I had not heard from them, so Im just sure that there’s no “false positives” with me. That only happens to other people, right?
We sign in at the front desk. I answer the several questions that I am asked every 30 days now. For crying out loud, what changes in 30 days? It’s just too often to put people through this, aside from the cost. My name is called and my stomach is in knots. I’m sweating and sick to my stomach with my heart is pounding. I feel afraid and “guilty”. I hear the footsteps faintly coming down the hallway and then a knock at the door. I calm my inner fears and I tell myself “Suzanne you are a good person. You’ve never done anything wrong and you follow the directions exactly. This is crazy, why are you so afraid?” I’m afraid because of the horror stories of others who are also innocent. The pain Dr. enters the room and asks me the same questions each month. Every 30 days, the same dialogue. But this day I hear different mantra than usual. I feel as though I’m in a tunnel as I hear these words “Your urine test came back positive and I had to send it out to another lab. In case you wonder when you receive a $200.00 or $300.00 bill from an outside lab. I just wanted you to know.” I started to cry and then I was asked “why are you crying?” Next, I was informed that no matter how long he’s known me, if the test had ben positive, I would be kicked out of the practice with no place to turn. Innocent or not, I would have been “guiilty”. It doesn’t matter that these tests are many times false positives and false negatives. Nothing matters anymore. The truth doesn’t matter any longer. I was literally terrified just hearing those words come out of his mouth. I asked him “What could it be positive for? I did not do anything different?” He proceeded to tell me that I tested positive for PCP and Oxy-something? But I don’t take those! I don’t even know what “PCP” is? I had to ask and he did not answer. He could not understand why I was crying uncontrollably and inconsolably.
We had received a $265.00 bill from a lab just a few days prior. We were going to call because we thought it was a mistake. Now we are supposedly responsible for this very large bill. I never signed anything promising to pay for all of those tests? But what happens if I fight it? Next time there is a “false positive”,they won’t perform the tests, therefore I won’t be exonerated and I will be kicked out for no reason whatsoever? It was explained to me that no matter who I am, how exemplary of a patient I might be and no matter how long I’ve been going there with a perfect “record”. I will be treated as if it were my first visit and there are no second chances. We are perceived as “guilty, bad and lying” if the tests says it is so. Yes, there is a second test, but then you are hit with this grossly overblown bill and there’s no way to pay for it. The second test, of course, came back negative and I was exonerated. He told us that his regular office urine test has a “90 to 95% accuracy”. So that means every once in awhile there can be a glitch or a mistake. That means that every once in awhile someone gets hit with this huge bill, through no fault of their own.
I am tired of people telling me that I should not be on this medication. People who are supposed to love me or at least care about me. It feels like nobody understands the predicament we are in. I take medicine that still helps to relieve my pain even though I’ve been on it for quite awhile. I have almost no side effects and I’ve tried many many other medications and therapies first. This was a “last resort”. It helps and I don’t want to stop because it gives me some semblance of a life. I get the pleasure of being a grandmother. Without it, I would be in bed or in my chair 24/7. I’ve been there and done that. I don’t want to go back. I’m tired of being judged by people who don’t know me. I don’t get a “high”, and I never take more than prescribed. Why can’t I just continue to do what has worked for me? Why can’t we all? Why do we have to feel persecuted and judged? Why do we need to feel traumatized and terrorized every 30 days, to the point of feeling physically ill?
My story up to this point, ended on a positive note. My Dr. still had to send out the first test because he said that “it is the law”. I have never done anything remotely considered to be “bad” or “wrong” and definitely not “illegal”. I’m a good person who graduated college with honors. I raised my daughters mainly by myself for about 8 or 9 years. I worked full time and took care of everything and everyone who needed me. I try to be kind, thoughtful and I am always trying to think of new ways to help others. Nobody deserves to feel this way. Theres something definitely wrong with this and someone needs to fix it.