My Story: Has the CDC Confused Addiction and Tolerance?

My Story: Has the CDC Confused Addiction and Tolerance?

Editor’s Note. Celeste Cooper is a registered nurse and author who frequent comments on chronic pain and what follows is the comment she submitted to the CDC on its opioid guidelines.

Celeste Cooper, RN

Celeste Cooper, RN

I believe the CDC and many others have confused addiction/abuse and tolerance. Opioids are usually the treatment of last resort. Other medication options available have far wider reaching consequences, yet we never here about those or related deaths.

Why is the CDC suggesting any restrictions of opioids to patients who need them to function? Pill mill doctors should be dealt with through other channels. Those who are addicted should have access to free treatment that is not based on their ability to pay. Both communities of people deserve to be treated humanely, so why are you wasting time and money when it would be better served to improve health and function.

There are no long-term studies to prove that opioids do not work for treatment of chronic pain. Not all patients require escalated doses of opioids and those that do, can be and should be educated according to individual needs, but it is the patient and physician that need to make these decisions based on the patients individual needs, not some cookie cutter biased approach.

Stop judging people simply because they have an untreated condition that causes chronic pain. Hindering their access to care they know provides relief will not treat the addict, only family support and available treatments known to work will curb the drug abuse conundrum. Someone from every aspect of pain care should be included to make any policies regarding patient care, including the patient.

Follow Celeste on Twitter https://twitter.com/FibroCFSWarrior

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Authored by: Celeste Cooper, RN

There are 21 comments for this article
  1. Sandy Auriene Sullivan at 11:00 am

    Sorry for the late reply but this one topic alone makes for a story that should be presented here. Doc Anon wrote: ‘Until that misbranding is corrected, the war on pain patients will continue.’ Absolutely. And any doctor faced with such branding has to fight an uphill battle of dependence v addiction.

    That the law makes no legal distinction between normal physical dependency that thousands of medications have attached vs addiction which is an entirely different response to taking medications is of very serious concern. [buying lotto tickets, alcohol, cigs…anything and I mean anything can be addictive and end in self destruction]

    All of us; doctors, pharmacists and patients have to take every step we can to ensure a legal distinction is made in the law.

    The Feds must be consistent and charge psychiatrists who prescribe the myriad of medications that cause dependency and should not be stopped suddenly. I know too many people who cannot get off of Effexor OR Paxil due to the dependent nature of it.

    Effexor was prescribed to me early on after fracturing my skull 23yrs ago; I didn’t realize that was the beginning of my early onset CP at the time. Not until the car accident 16yrs ago rearranged my entire world. Did I realize what I was dealing with; getting doctors to understand however wasnt so cut and dry.

    Effexor didn’t work but I couldn’t stop it suddenly. Took me 6 weeks to come off of it completely by breaking the tablets, which was the lowest dosage at the time. Had never been on a medication that caused dependency requiring tapering previously and the dependent nature of Effexor was not labeled nor was the prescribing psychiatrist aware of that nearly 23yrs ago.

    The dependent nature of medications isn’t just for opiates which is why I question the US Att. However, as a prosecutor of Federal drug charges; I have no doubt that is HIS position when prosecuting doctors for so called ‘overprescribing’ or negligence in handling of paperwork. His job is to win cases against those the ‘State’ has charged – he’ll use a legal loophole. It’s his job.

    Does anyone have a link to this statute in Federal Law or even your State Law regarding that there is no distinction? If there isn’t one then dependency and addiction are still two different things unless the *law* has it in a statute.. I’m interested in the wording of it and further IF such statute exists – we must know the name/number/Fed/State ACT name to get it changed.

    IF doctors are being charged with a violation of their DEA licensing; based upon the fact that dependency and addiction in the eyes of the law are the same that sounds like unequal protection under the law. Which is a HUGE violation of the law as well.

    Especially since the DEA doesn’t go after any other medication for dependency; that is *UNEQUAL PROTECTION UNDER THE LAW* meaning only ONE sort of specialist or medical doctor is being prosecuted for a legal distinction that would have many other specialists and/or doctors in the courtroom too.

    I’m betting the US ATT cannot produce such a law – what he can do is muddy the waters in the courtroom so that a jury doesn’t understand the distinction. And that my friends is how people go to jail.

    Regardless, we must lobby for a law to make such a distinction.

    West Virginia has said patients may now sue doctors for making them addicts. So such distinction is going to be made at some point. Either we help define it or we’ll all get screwed by it.

    There is a story here. Two in fact. 1) W. VA allowing patients to sue their for addiction and 2) what is the name of the law that mentions legal responsibility of a doctor in prescribing when the packaging of the medicine states ‘must not stop suddenly’ [ie dependency]

  2. Chris at 1:06 pm

    Thank you so very much, Celeste Cooper, RN !! I know there are exceptions to almost all rules. The RN behind you name, instead of the Dr. in-front of your name, can be the difference much as night and day. I have meant a few, seen the words Drs., here, yet far and away Nurses are so much more effective in the care of patients. Nurse Cooper your commonsense words and train of thought, give Hope to, if only me, yet I am sure so many people feel as I do, again Thank you.

  3. LouisVA at 10:01 am

    Would anyone be denied access to heart medications? I think not. What of medications for diabetes – NOPE! Medications or radiation treatment for cancer patients – NEVER HAPPEN! How do pain patients differ? Oh, you do not know either I’d bet? In my opinion, torture is illegal under the US Constitution and withholding pain medications from those that need it is torture.

  4. Scott michaels at 8:54 am

    i confused. Arent there many medications such as steroids which u must be weaned off of.
    if you abruptly stop you go thru withdrawls and get sick. Just if a person with chronic pain is taking opioids, its for life. we would never go through withdrawls. that is what makes us dependent. if we ran.out of our medication 13 days early, went from doctor to doctor to get prescriptions or misused them via snorting injecting or mixing with other druga or alcohol in order to alter ones state of mind, those are addicts. With that said, the DOJ, DEA,PHARMACIES AND DOCTORS HAVE A DATA BASE. THIS ENABLES A PHARMACIST TO SEE ALL OPIOID PRESCRIPTIONS WRITTEN. EVERYBODY KNOWS THIS. THAT IS WHY THE CDC and prop SHOULD JUST BACK OFF. THE JOB IS DONE. NO ADDICT IS GOING TO COMMIT SUCH A STUPID CRIME. HEROIN IS EVERYWHERE. THEY JUST GO TO THE STREETS. THAT WHERE THE MONEY AND EFFORTS SHOULD BE. GO AFTER DEALERS AND CARTELLS, NOT OUR SICK, WAR VETS AND ELDERLY.

  5. Doc Anonymous at 7:28 am

    Sandy Auriene Sullivan, and anyone reading these comments, make no mistake. The US attorney who equated addiction and physical dependence was NOT confused. He was verbalizing a firmly entrenched standard that is used by the Department of Justice to convict or accuse doctors of crimes. It is a federal crime to prescribe opioids to an addict, and therefore it would be a crime to prescribe opioids to anyone who is physically dependent. And that is what the DEA and DOJ have been doing consciously and deliberately for many years, but with increasingly virulent attacks over the past 10 to 15 years.

    Until that misbranding is corrected, the war on pain patients will continue.

  6. Susan Barnes at 3:42 pm

    I am feeling a sense of accomplishment . I too, suffer from chronic pain from multiple sclerosis and lesions on my spine , I also suffer from numbness in my legs and the entire left side of my body . I also has my medication reduced and spend time on my couch I want my life back and after signing many petitions. I am so thankful we have finally a voice .

  7. Sandy Auriene Sullivan at 10:56 am

    Carla, “I read the 2016 CDC Guidelines to Prescribing Opioids for Chronic Pain and was shocked that this report is not based on scientific studies run by the CDC, it is based on Contextual Evidence gathered from searches on various websites and Expert Opinion”

    That is why in my comment to the CDC [posted here Dec 26th] stated they need to use the scientific method not some weird roundtable that leaves off experts in the field of pain treatment and even pain patients. There are tons of guinea pigs out there for them to gather evidence off of. Opiate medications for pain and clearing of the lungs [it dries the lungs and has been used for fluid build up in the lungs and for pain since the opium plant was discovered; some 5000 years ago or more. Written human history is about that old. The other plant with such a history? Cannabis. Oh the universe has a sense of irony]

    Doc Anon,

    Well isn’t that a sticky wicket? As there are thousands of drugs that cause physical dependency and shouldn’t be stopped suddenly. The only difference I have found is street value v no street value. Seems that’s the distinction the law is making too. At least upon doctors and pharmacists.

    Cymbalta didn’t disclose it’s dependent nature in *full* it did in part and ads on TV for lyrica disclose the dependent nature of them at the end when they list off all the side-effects. Which are very long and often sound worse than the offending illness they purport to treat. Gabapentin on the other hand, while it can cause dizziness at first and some strange feelings initially [which is why people quit it early] goes away and has not required an increase in dosage for me in over a decade – after reaching the right dose for me.

    Doctors are under enormous pressure but I find what the US Att stating as [and forgive me if this isn’t the case] someone who is not up to breast on these issues. [lawyers specialize in different areas and do not always know; unless he was a prosecuting att who did Fed drug cases; I can see why HE would make no distinction – that would be up to the defense to explain and specialists to explain in a hearing to the judge and on the stand. *law nerd w/a business and legal degree – Australia; English Common Law]

    It is very important a distinction is made within the law if one does not currently exist. To protect doctors and patients. Dependency is very normal. Addiction and addictive behaviors; should be addressed properly without the doctor having little to no choice but kicking the patient to the curb [CYA] – where the patient is at a greater risk of overdose or suicide.

    All doctors who treat pain should be up to date with SAMHSA [licensed?! Certified? Certifiable… Lol! An example only some doctors can prescribe suboxone] to treat addiction too. The best way to confront addiction is in a clinical setting with a trusted doctor and where the patient/doctor relationship is already established. Addiction is not the lack of will. It is a medical issues with a greater community concern when addressed improperly.

    Sorry I’m trying to make government policy make sense; government policy rarely makes sense! I learned in the US if a law in enacted the name of the Act usually means the opposite of the claim. Not pointing fingers just we have far less of this in Australia. [it’s there but not so bad!]

  8. Carla Cheshire at 11:04 pm

    An important fact from Celeste’s post: There are no long-term studies to prove that opioids do not work for treatment of chronic pain.

    I read the 2016 CDC Guidelines to Prescribing Opioids for Chronic Pain and was shocked that this report is not based on scientific studies run by the CDC, it is based on Contextual Evidence gathered from searches on various websites and Expert Opinion. There seem to be no studies on the efficacy of long-term opioid treatment for say 5 to 15 years!

    This concern was raised in the Summary of Stakeholder Review Group Comments on page 14 and 15:
    There are also significant concerns regarding the quality of evidence upon which the 12 specific recommendations are made. In 5 cases recommendations are made in the setting of low quality of evidence and the remaining 7 recommendations are made in the setting of very low quality of evidence. Thus the “contextual evidence” and expert opinion really form the basis of these entire guidelines rather than scientific data. This unfortunately is the status of the literature and our scientific knowledge and it is certainly not the CDC’s fault that this data is lacking. However, it should be recognized that interpretation of the “contextual evidence” is prone to bias as is the input of experts, (including our own).

    • It also is not clear from the discussion whether the same efficacy standard for opioids (controlled trial of one-year duration) was required for evaluating the efficacy of non-pharmacologic and non-opioid pharmacological treatments. If not, then this significant limitation should be noted in the discussion.

    • I wondered why the literature search did not look at some of the data for the period of time when we had the gold standard of multidisciplinary pain programs that actually allowed people to regain control of their pain and their life. We have lost the components of pain management that actually made a significant difference in individual lives as well as their families.

    • There is concern that given the lack of scientific evidence for this review that there is an over reliance on the “contextual evidence”. There are not clear distinctions between patients with opioid use disorder and patients diverting drugs, from the compliant patients. Many of the conclusions from the “contextual evidence” in regard to morbidity and mortality at a societal level may be much less applicable to the compliant patient. Thus, the “contextual evidence” introduces a bias against the compliant patient with few medical or behavioral co-morbidities.

    These Stakeholders comments I find troubling.

  9. Jon at 10:13 pm

    I totally agree with Holly. Good point ,well made Holly.
    I am a severe chronic back pain sufferer. I have been barged from pillar to post between some idiotic Doctors in my time. Some I refuse to see any longer . They were Barbaric. If I had the strength I would have reported them for malpractice and their disgusting bedside manners. How on Earth did they become Doctors ? I will never know ? But it is my word against theirs ?
    Been using Opioid pain relief for a long time and now being told to come off it as they think I should be using a different class of Opioid ??An Oral dose instead of Patches etc..
    Watch this space?

  10. Sheri Kay at 8:01 pm

    We all need to be aware of the statistics in this report released February 2015 by the National Institutes of Health Pathways to Prevention Workshop: The Role of Opioids in the Treatment of Chronic Pain. This is the link, http://annals.org/article.aspx?articleid=2089371 The statistics given regarding the amount of chronic pain sufferers in the USA have been overlooked by not just the media and the general public, but also by many attempting to make regulations without seeming to comprehend what this study affirms. Regulations that already affect many of us, and will affect the majority of US citizens due to the fact that 1 in 4 will be affected by chronic pain at some point in their life.

    Among the many other subjects covered, this report states that there are 100 million chronic pain sufferers in America. Of those, 25 million suffer with moderate to severe chronic pain.
    This report by the National Institute of Health also states that 2% abuse their prescribed narcotics! We cannot overlook that at all, but, what about the 98%?

    There are 98% of these sufferers that are using their prescribed medications APPROPRIATELY! Medications, that by the way, are needed to try and live somewhat of a functional life…a life shredded to pieces by chronic pain! A life some may describe as a “life of hell!” Many cannot comprehend such a life! It can be hard enough for those living with unending, all encompassing, overwhelming moderate to severe chronic pain to even comprehend the magnitude of such a reality!

    This report stated, “Yet, evidence also indicates that 40% to 70% of persons with chronic pain do not receive proper medical treatment, with concerns for both over-treatment and under-treatment. Together, the prevalence of chronic pain and the increasing use of opioids have created a “silent epidemic” of distress, disability, and danger to a large percentage of Americans. The overriding question is: Are we, as a nation, approaching management of chronic pain in the best possible manner that maximizes effectiveness and minimizes harm?”

  11. Lynda at 3:56 pm

    Thank you for making a very important point that continues to be ignored in the drive to make some sort of dent in the war on drugs they continue to loose. The CDC are trying to use these misguided, made by uninformed individuals making choices for patients they have zero understanding or experience with, by making unfair not realistic guidelines that will hurt more then it will ever help in a feeble attempt to cut off addicts. History and evidence from years of this battle over drug & alcohol abuse shows over and over cut an addict off put out all the restrictions in the world & it won’t it hasn’t stopped addicts yet. They will simple find another avenue to continue on using by finding something else to get high. With the CDC’S guidelines the damage that will be waged on the chronically pain ridden community will be devastating. The untreated & under treated pain in chronic pain patients will cause people to be severely disabled more crippled and bed ridden. Ultimately they will end up causing what they were trying to stop. Left with no other options for pain relief patients will find themselves seeking out illegal drugs off the street. In an attempt to get some sort of pain relief their trusted doctors will no longer assist with out of fear with these CDC rules put in place. The fear of abuse will end up causing exactly that abuse. The suicide deaths are sure to skyrocket and already have as of today I was informed of 2 suicides in the last week from the under treatment of their pain and they couldn’t go on suffering in unrelieved pain any longer.

  12. Doc Anonymous at 3:26 pm

    Very well written. I differ only with one issue: It is polite to state that the CDC has “CONFUSED” addiction and tolerance. I assume that you also mean that they have also confused addiction and dependence. I have actually heard a US Attorney say that there is NO DISTINCTION UNDER THE LAW between addiction and dependence. That is in fact the CHOSEN standard applied by the federal government. They are not confused at all and that same US Attorney made it clear that any doctor whose patients became physically dependent was guilty of prescribing to maintain an addiction. No exceptions for the Department of Justice.

    Now anyone who is at all familiar with the science of addiction and dependence knows that they are distinct and different conditions. But as long as the war on drugs is prosecuted on the erroneous declaration that addiction and dependence are the same thing, the doors are wide open to bigot like those in PROP. Oh, by the way, PROP is a program of Phoenix House which is a federally funded program and some of that funding may (emphasize MAY) come from the DEA which in turn runs the War on Pain Patients as part of their war on drugs……and it is all based on their CONSCIOUS AND DELIBERATE (and NOT confused) active identifying dependence as addiction.

  13. Kim Miller at 1:11 pm

    She’s right on every count. Please make sure to comment on the ridiculous CDC “guidelines” that have every chance of causing massive restrictions to chronic and acute pain patients’ care.

    Say your piece, speak your mind at regulations.gov before JANUARY 13th!!!

    It may be the most important thing you do for you or your family member or loved one who suffers daily from chronic intractable pain. Only o few days left to try to make a difference!

  14. Deb at 12:56 pm

    It is wonderful that people are sharing their posts with us. I’m in a flare right now and can’t think. i don’t want to sound really stupid to the CDC. That won’t accomplish anything. I’m thinking of having my son help me write something.
    Thanks to everyone that is sharing maybe it will help me organize my thoughts better. I finally have an appointment with a new pain dr on monday……wish me luck

  15. Scott michaels at 11:28 am

    I do agree with some of the comments however, when a person like myself has an inoperable condition that causes extreme pain daily an have tried everything to relieve my pain, opioid therapy is the only resort.
    Since there is no cure for most of us, the only thing that gives us a chance of any activity is our medication. Yes, people have abused them! People have abused opioids for millennia. whether sucking on a stem to using heroin.
    If a person takes more then the doctor prescribed even without asking the dr. 1st is an addict. Actually they were an addict long before they took the 1st pill.they were born with the gene of addiction. THIS IS NOT THE POINT FOR OVER 20 MILLION CHRONIC PAIN PATIENTS.We are lifers. We will be taking this medication until we die, its the only way to live and be part of society. We cant lay in bed 24/7 screaming with terrible pain.
    When these meds are taken as directed, we dont run out, we are not high on the medication. If we ran out 4 days early, we know what would happen to us, withdrawls! So we dont.Our doctors see us often, monitor or suffess or failure of the medication. So please dont blame the drug maker, their meds work when taken properly. For acute pain a person should take for no more the 2 weeks then be weaned off. Stop trying to hurt us.
    We are not criminals nor are our doctors. Do not compare us to Australia, we have a much larger population of elderly, war vets that were injured and people like me.

  16. Holly at 10:34 am

    Dependence upon pain medicine to function enough to clean one’s body and get a meal is neither addiction nor tolerance. Suggesting that one merely needs to try alternative or multi-modal methods to manage pain, rather than take medicine designed to alleviate that pain, is as absurd as telling a patient having a heart attack or going into diabetic shock to do the same! Pain patients are denied their Constitutional right to equality. Instead, they are systematically being segregated from other types of patients and forced to endure a barrage of civil injustices; discrimination, verbal, emotional, and psychological abuse, neglect, and mistreatment. They are bullied for being different; for not possessing the ability, even when they have tried, to prevent what is occurring physiologically inside their body! NO other patient is subjected to such abuse!

    Constant pain is exhausting, The invisible; the sick, weak, disabled, elderly, and our veterans; the most vulnerable among us, are being ignored and used as pawns merely because the anti-opioid propagandists possess the health and energy to scream the loudest. Patients whose conditions cause pain are suffering; patients who NEVER experience a “high” from pain medicine, who don’t have an addictive personality, but only experience enough of a reduction of pain to allow them to shower and attend to the activities of daily living; activities that healthy people take for granted! Silence among this group does NOT equate with an agreement of the proposed CDC guidelines. It merely means that many do NOT have the ability, whether physical, technologically, or financial (access to the internet) to FIGHT back!

    Forcing people to suffer with untreated and under treated pain is barbaric and should never take precedence over the lives of a few with addiction issues.

  17. Sandy Auriene Sullivan at 9:04 am

    “Those who are addicted should have access to free treatment that is not based on their ability to pay. Both communities of people deserve to be treated humanely, so why are you wasting time and money when it would be better served to improve health and function.”

    Yes yes yes!! Those left out in the cold completely are addicts. The US [I lived in Australia too] treats it’s addicts like criminals rather than people who are also sick; just in a different way than those of us in chronic pain.

    I know Australia has needle exchanges – turn in a dirty one get a clean one in return. WIN/WIN for the community. [the debated on that happened while I lived there. in the 90s. I also have friends in the medical community there.

    The addict gets face to face time with healthcare professionals and the community pays a lower cost for communicable diseases that dirty needles are a result of [HIV, Hep C to name two major ones] and prevents needles being left in public restrooms or our beaches [Australia in particular]. In their version of DC; Canberra they even ran clean heroin clinics. Sort of like methadone but heroin instead. As part of public health.

    We could learn a lot from the methods employed in Australia regarding addicts.

    Though they are still learning how to treat chronic pain they are trying to improve their treatment and ensuring they do not leave anyone in CP out in the cold.

    The US is tossing the baby out with the bathwater. Florida pill mill doctors? between 2010 and 2012 so called pill mills went from 300 to 16 today. 16 doctors who prescribe a higher than the national average of pain meds – which could be for many reasons and none nefarious.
    [http://health.wusf.usf.edu/post/study-fl-crackdown-pill-mills-saved-1000-lives#stream/0]

    Thank you for sharing your comment with us.

  18. Jeremy Goodwin, MS, MD at 6:26 am

    Opioids are not necessarily a treatment of last resort. Sometimes they are wonderfully affective as a means of first resort along, with a multi-modal approach, in order to minimise pain-induced poor body mechanics that can rapidly lead to prolongation of the initial problem or to a spread into subsequent and resultant ones.

    Yes, the CDC and state medical boards and the peanut gallery of so many clinicians who want any excuse to assuage their almost non existent guilt at having no interest in managing acute, recurrent-acute or persistent pain have taken advantage of it without any clear understanding of the short or long term issues involved, both real and imagined.

    Sad is the way we deal with chronic issues in the USA. We have much to learn snd even more to unlearn.

    May a new dawn of enlightenment brighten the day that had been fogged and darkened by ignorance, prejudice and self righteousness that serves no one but those who suffer not and who prefer to bury their heads in the sand.