In Response to @AndrewKolodny

In Response to @AndrewKolodny

Ed Coghlan.

As we know, the illicit use of nonprescribed chemicals that fall into the opiate class has overtaken the public imagination and strained public resources in some locales. The media is replete with the latest stories of addiction, overdose, overcoming addiction, and resuscitation from overdose. The stories are supported by reports from state departments of health to CDC and incorporated in their public data for all cause mortality.

The public debate has approached a fevered pitch that has rushed the halls of Congress influencing the discussion on what form health care should take and how many dollars should be allocated to the ‘opioid epidemic.’  At the local level, some communities are debating how many times repeat offenders should be resuscitated and where the money will come from to support policing and public programs. Genuine debate about what constitutes harm reduction is now entering the design process of local public health policy and regulation development.  In July, 2017, a cross section of sixteen Senators issued a letter demanding that the Drug Enforcement Administration continue to ramp down the production quotas of prescription opiates – even though the evidence is clear that prescription drugs have been steadily reducing and now represent a very small part of the national overdose numbers.  Attorney General Jeff Sessions has announced a wide scale public ramping up of resources to fight the ‘scourge of drugs in our communities’ by conducting crackdowns targeting Medicare and Medicaid fraud through prescribing, suggesting that we reinstate programs with poor evidence of effectiveness such as DARE, and increasing actions aimed at civil asset forfeiture.

President Trump appointed Governor Chris Christie as the nation’s ‘opioid czar.’ To date, one hearing has been held with invited participants representing various sectors of the addiction community speaking strongly for more consistent and better public response to addiction as a disease deserving of treatment.  A commissioned summary of recommendations has yet to be issued from this process.

New voices are emerging that raise notes of caution in the public conversation reflecting that substance use disorders and their treatment should not get priority over the treatment of the whole person, their disease processes, and  their characteristics and needs. There is increasing recognition that the public conversation conflates substance abuse disorders (SUDS) and their associated interventions, with the needs of caring for persons of all ages with chronic and intractable diseases who rely on medication assisted treatments which include opiates in one or more forms, used singly or in combination with other methods and medications.  Along with this is the continuous reminder that each patient is different in their ability to benefit from and process opiates or other substitutes and that a one size fits all approach to care may create more risk of harm than benefit.  Training practitioners to be sensitive to and treat these differences in a team environment is likely to be far more effective than managing dose regimens.

States have proliferated a variety of laws and regulations in response to the national ‘crisis,’ often in response to the urgent public conversation. Many incorporate some features of the CDC Guidelines (March 16, 2016) and others have gone off in their own direction based on the advising of local medical boards. A summary of the laws is found on the National Association of State Pain Laws (NAMSDL) link – http://www.namsdl.org/. The Federation of State Medical Board Guidelines for Chronic Pain is found at this link -http://www.fsmb.org/Media/Default/PDF/FSMB/Advocacy/pain_policy_july2013.pdf

Alternatives to opioids have also emerged for use with addiction sparing, reductive treatments – Naloxone, Buprenorphine (Subutex), and Narcan, and combination drugs like Suboxone (a buprenorphine, naloxone combination).  Into this fractious mix of CDC Guidelines, VA Guidelines, state pain laws, and insurance rationing, some practitioners have resorted to utilizing drugs clinically trialed for addiction intervention for the purpose of treating chronic and intractable long term pain. Other states, like Tennessee, disallow the use of buprenorphine and its cousins for any application except where there is documentation of addiction or substance use disorder.  This has led to the conflation of addiction or substance use disorder with dependency resultant from utilization for long term chronic illness outside of palliative care programs.  This is further separated from caring for the psychological aspects of chronic illness through mental health supports and patient education.  If there is benefit to be gained from easing pain with opioid alternatives, the addiction treatment filter in fact short changes the chronic pain patient by failing to conceptualize their treatment needs properly. There are increasing reports from the patient community of persons who are enrolled in palliative care programs being denied opioids for relief of even cancer related pain due to the conflation of dependence with risk of addiction or harm for end of life care.

This uneven public response has resulted from poor leadership of federal policy development, misalignment of public outcome objectives, and failed implementation.  It seems as though nobody is in charge and every public agency is flailing in the absence of clear and thoughtful public goals that address patient centered practices. Is addiction a crime that must be prosecuted or an illness that must be treated? If persons with chronic pain are abandoned and turn to the street for palliation, at great risk of self-harm, does this make them addicts who risk prosecution or desperate patients seeking relief?  It’s a set of problems that invades every socioeconomic and demographic strata.

No voice has been more insistent on characterizing long term opioid use outside of palliative care as substance use disorder than that of Dr. Andrew Kolodny, medical director of Phoenix House, founder of PROP, Member of Steven Rummler Foundation, and Professor of Addiction Studies at Brandeis University.  Dr. Kolodny’s message has proliferated throughout the media, magnified by Annenberg School of Journalism, HBO, Rummler Foundation’s participation in the development of CDC’s Guidelines, and miscellaneous media outlets.

There has been pushback to this messaging from his colleagues and the patient community. The pushback is increasing as suicide among chronic pain patients who have been abandoned is documented, and as treating professionals increasingly observe that stable patients who use opioids become decidedly less stable with forced tapering imposed by practitioners who opt to adopt CDC Guidelines or alter the course of treatment altogether by discontinuing the prescribing of opiates.

What is our goal? Is it to manage a dose regimen or to increase or maintain the functionality of the persons who seek care in their community? As a nation we are conflicted about our objectives. Social media is alive with the opiate debate. Facebook groups and twitter accounts magnify voices and provide a platform for debate and thoughtful discussion.

It is within the social media platform of twitter, that Dr. Andrew Kolodny issued a challenge to his colleagues that has been picked up by the patient community. Speaking to his colleagues he asked so all could overhear,

“Outside of palliative care, dangerously high doses should be reduced even if patient refuses. Where exactly is this done in a risky way?”

He further inquired,

I’m asking you to point to a specific clinic or health system that is forcing tapers in a risky fashion.”

Excellent  questions.

The most affected by this conversation are persons in pain who are keenly aware that they have been removed from policy formulation discussions which lack a consistent patient presence at every level. There are three communities of care to be concerned about here: (1) Those who need consistent care for illicit substance use and abuse, (2) those with chronic illness that generates intractable pain, and (3) those who are members of both communities of care.  These are complex communities without consistency of policy or service.  Of course, consumers who are treated for chronic pain, no matter their primary identification with a community of care, have taken up the challenge of providing this information.

At National Pain Report, we believe in dialogue across all sectors of the health care community. We assume that Dr. Kolodny’s inquiry to his colleagues is made in earnest, is genuine and best addressed by affected persons.  So, in the spirit of good science and wanting to help a colleague expand his understandings, we offer our patient readers the opportunity to answer Dr. Kolodny’s two questions exactly as he posed them to his colleagues in the twittersphere:

  1. If you have been on a stable routine of care that involved opiates and were forced to taper and you have been harmed by this process, please respond to Dr. Kolodney at @andrewkolodny, and at the same time copy @NatPainReport. Use the hashtag #forcedtaper.
  2. Identify the location and city and state who has risked your safety by abandoning your care or forcing you to undergo a taper that was unsafe or led to complications.

We also offer our practitioner readers the same opportunity to tell Dr. Kolodny  (@andrewkolodny) and the National Pain report  (@NatPainReport) whether you  have reduced your patient loads, tapered patients in accordance with CDC or VA Guidelines, or discontinued opioid prescribing regimens altogether in favor of other methodologies or practices.  Tell us what’s going on within your practice discipline and your state location. Share with us how you are making decisions within this increasingly labile and complex care environment.

If you don’t have a twitter account, now is a good time to get one. Tell it like you have experienced it in 140 characters.

If you don’t want to set up a twitter account or don’t know how, share your answers with us at National Pain Report. We will make sure they are shared with our colleague Dr. Kolodny.  Let’s work toward an improved and solution focused conversation.

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Authored by: Ed Coghlan

There are 35 comments for this article
  1. HAZZY at 1:06 pm

    I’ve had two failed back surgeries, one was a Fusion. Couldn’t do a thing without Pain meds, i was given ms contin and percocet, now I’am being cut back on my amount, i suppose these doctors and our Government want us Chronic-Pain Patient’s to suffer and just lay around and do nothing. Without these Meds like yourself i wouldn’t be able to do anything, i’am not addicted and the amount i’am on works great for me. Government Stop Your Meddling in our Meds !!!!!

    THANKS

  2. Carolyn Margraf at 8:00 pm

    Such excellent descriptions of the various causes and results of chronic pain.
    I have had various surgeries over the years. Never one that I did not have any left over pain medications. Until my lumbar disc replacements (5). My arthritis has become severe and all body joints involved. My lumbar surgery was expected to be about 3 hours, recovery 3 to 4 months. Surgery was over 6 hours with expected 18 to 24 months recovery. My nerves were found to be all entangled in my lumbar spine, with as my doctor described, dust for discs. My pain before surgery was almost unbearable and that didn’t change. Noone expected the outcome. After over 3 weeks in hospital and rehabilitation, on discharge my hyrocodone was decreased by 1/2. It did not relieve my pain. I was sent to pain management. He was horiffied and never believed I wasn’t addicted. I wasn’t. After my hydrocodone med, I was up, walking, getting better, surprizing the staff with all my activity. I was placed on extended release morphine which provided minimal relief, extending my recovery.
    I still need an occasional hydrocodone, which is extremely difficult to obtain. I use only when I feel pretty desperate. I don’t misuse it, nor am I addicted.
    Addictions are brain disorders and should be treated as such. Alcohol the most common addictions, is legal and treated far too seldom. The attitude is lock them up. Alcohol kills far more people annually than all the other drugs.
    Our biggest problem in this country is our attitude on brain diseases, otherwise called mental disorders or diseases. To many people consider any brain diseases as shameful, keeping them secrete, treating a disgrace and unaffordable for most. Patrick Kennedy’s book “A Common Struggle”. I strongly recommend it and I feel all elected officials, city, state, national, should be required to sit in chambers and have it read to all.
    Until we treat everyone with any brain disease, regardless of income, drugs will never be controlled. This should be our goal at all levels. Until this happens drug addiction will never be controlled. That is what we should be the goal for our time, energy and money.

  3. Sandy Auriene Sullivan at 12:06 pm

    Dear Heather of Orange Park Florida, I am also a Clay County resident. Feel free to contact me on FB @facebook.com/axollot or twitter @axollot

    We can stick together in this fight. I’ve been put on a forced taper myself but I also fight my doctor and tell him to CYA by documenting everything and being my ADVOCATE. As now they are looking at myeloma – a terminal blood cancer that is crippling, attacks one side of the body and the immune system – affects both white and blood cells. You see my forced ‘taper’ was due to more lose of weight, when he saw me Tuesday he chided me about losing even more weight. I looked at him and asked if he really believed cutting my meds down was going to help me gain weight?! No. He said, he didn’t.

    Two weeks prior in the same office I had seen his pain counselor. Because of people like Mr Kolondy I don’t trust in office pain ‘counselors’ and took a friend. Put in front of me was a piece of paper stating I was on x amount of MME. I disputed the numbers and told the physician’s assistant and the counselor; I’ve initialed the mme amount and stated I dispute the number, I will *NOT* be signing the paper work to ‘agree’ to go to 90mme. What they don’t know is my doctor is always interested in my personal opinions on his staff. I’m one of his longest patients. I told them what happened. Threats. Was threatened repeatedly – bullied one could say – with sign or be 100% denied. I said “tell him if he doesn’t want to write the script because I refuse to sign that I want to speak to him [my physician/specialist]”

    I refused to sign, received my script tho. Two weeks and I’m in to see the doc. [not counselor or PA]

    I saw the sheet again on Tuesday; the MME was adjusted; the numbers *were* wrong.

    I told him 1) that his ‘counselor’ was making threats if I didn’t sign and that I didn’t find it to be very productive. 2) was never given the time to READ said document either [he agreed both are bad form; that one should *never* sign something they haven’t read! duh]

    3) disputed the amount of MME. Because as I told him Tuesday if my ‘mme’ is so damn high then give me morphine instead as clearly that dose would be better than what I am going thru currently.

    And he gave me a sly eye and smile; He also knows I cannot take morphine outside a surgical hospital setting because it makes me ‘nod’ – but I’m alert on my other meds.

    – I told him about this coming years and years ago [2011 and 2015 including what I wrote to the CDC] before he even knew; so I am one of the only patients aware of it. And if I am terminal? It shouldn’t matter anyway these guidelines are for chronic-intractable pain with no cure; not terminal. So I said, CYA – let the record show he thinks I am terminal. I’ve known for 2 years that something shifted and progressed. Document it because eventually they all get an audit.

    Many of his patients are unfairly aware of it when hit with the new CDC guidelines. They also don’t know they can remind their doctor it is a *directive* not a *legally binding order* these guidelines are *suggestions* for the physician and they are making doctors treat by policy rather than sound medical judgement.

    They struggle to speak up for themselves and/or make the case for *why* it is so damaging and to be open about what it does. It is hard to make a case for ones self when a doctor doesn’t want to see or hear you.

    I asked him *when* I will be put on 90mme? He said ‘it is the goal, but not over-night but he hoped to have me down to an even lower dose and I told him well thanks for signing my death warrant” he asked what I meant – I told him “my family would like to write you – to have in my file, their words of support to keep my pain management as it is and have it mailed to you certified…as you’re triggering my exit plan forward some 5 years – the plan is to live for as long as I can take it; then go to the EU for end of life care aka death w/dignity aka as assisted suicide in the US” [my own mother doesn’t want to see me put down like dog but at 78yrs of age; she too knows how much her youngest can take – which is a LOT of pain. No parent wants to consider that and say they’ll be there!] and it opened his eyes some… further, I stated, just put me on morphine 90mme before trying to make me fit into that bottle on the current medication.

    It took the better half of a decade to have my doctor realize that I stay up on news that will hit his practice and to trust me as a person and patient. For example,
    The OD epipen was an area he disagreed with and he *still* will not talk to me about it. Why?
    Since I have believed that every home with a CPP should have it – possibly a medical bracelet and one on their person. My doctor felt the epipen would increase abuse due to a simple ‘save’ and I said one, the process of saving someone from an OD is never simple; despite the ease of use of the epi-pen style naloxone. And, at the time I told him “to think that the average patient would abuse *with* an epipen for a save is telling me you don’t value the life of an addict; where I am telling you all lives have value, even the addict who makes our pain treatment lives hell.”

    He said he would look into it and 2 years later I had my first script for one. [Around the time that it became POLICY to do so.]

    /rant off….

    Heather, I do hope you get into contact with me since we are in the same county. Also, as soon as we have MMJ sorted better in the state [Clay has a moratorium on dispensaries in our county. Because of course they do. *eye-roll* but Ive had the chance to try concentrates; they work! But until costs come down – and we basically go legal-recreational – 2018/2020 ballots; we will be ‘priced’ out of availability. The state wants to allow several of it’s cronies to make millions before they allow it more widely. I try to work with the state and county officials often on these issues and stay in constant contact with our state senator Rob Bradley – many of us are trying to ‘fix’ this problem in county.

    OPM told a friend of mine they wouldn’t do surgery on her illness. She’s since had 10 surgeries in 12 mos. A life-saving procedure the state and medicaid said was ‘cosmetic’ because 50lbs of tumors in one arm is a ‘cosmetic issue’ [heavy eye rolling] even tho they were infected to the point of nearly killing the patient and can turn malignant at any time.

    By telling you they won’t help you right at the door? They feel they’re weening out those who don’t TRULY need their services. I know I never go there anymore and the new hospitals aren’t better! St V’s nearly killed me TWICE and nearly killed a friend. Though the Riverside primary care is much better. Taking a friend to them currently. Many new medical students and resident MDs are in this office but they seem more willing to help my friend who has had 13 surgeries for internal problems [stomach/gall bladder/hysterectomy partial twice etc. She has a poz dx for IC and that’s just the beginning of her pain!] in 6 years. Average 1 surgery every 6 mos and she’s only 38!

    She said ‘St Vincents doesn’t have pain management’ and I told her sure they do but you won’t just ‘get in’ – while there with my friend to see this young, eager new primary doctor I told her the current cost of pain management to my indigent friend who actually needs a far lower dose currently and cannot afford to pay for the current doctor’s care which is ONLY pills and nothing else. Soon as I said that the new primary stated “She is putting her in for emergency pain management access” so just say OK the next time they say “we do not prescribe pain medications” and in some cases these doctors very well may not but a hospital DOES.

    They just have to screen patients and sadly many of us are so frustrated with the system and in so much pain we don’t have time for these games.
    I hope they end soon. Hopefully, the tide will change again and Kolondy and PROP can go the way Dr Wakefield did. Down in flames for the joke he is where it comes to his expertise in opiates he is in it for himself. $$$

    Well so was Dr Wakefield, when he stated vaccines cause autism! His paper was peer-reviewed. They ripped his license to practice from him for fraud. For lying and for having financial stake in splitting up the 3 vaccines that included a measles vax. That’s right, he needed to kill the 3 vaccine in one to profit from his single vax. Thousands of kids, adults, cancer patients – those who need herd immunity are dying because of one man’s fraud. Took 10 years to out him and it will take one or two generations to get that line of thought out of so many heads!

    Never under-estimate the damage one man on a mission to enrich himself can do to millions of people globally.

  4. Dana Shore at 5:09 pm

    Sandy, thank you. I am glad that people with some common sense are adding their thoughts. The FDA is far too stupid to figure this out. I am surprised they can even find their way to work if that’s what you call what they do.

  5. Sandy Auriene Sullivan at 11:19 am

    Addiction and abuse happens with anything. Food is a ‘drug’ for some; do we take away food? No we manage it because people *need* food to live.
    Foods can provide a ‘euphoria’ eating certain foods; and seek to find that euphoric feeling again and again no different than any other substance or *activity* including athletic euphoria’s can get dangerous.

    It’s not the same as coping with and living through a chronic debilitating illness that requires several approaches to ‘cope’ including medications for some people and that means opiates or MMJ the wider it is available the more hope I have in concentrates helping CNS disabilities/diseases and inherited disorders of.

  6. Danny Elliott at 8:45 am

    There is not a single thing to add to Lauri’s post. Well said!!

  7. Lauri at 1:51 pm

    Ignorance on addiction and chronic pain:

    A pill, a drink, a plant does not “cause” addiction. Sex does not “cause” sex addiction. Gambling does not “cause” gambling addiction. Shopping does not “cause” shopping addiction. The abused substance (or activity) is merely the symptom of something much bigger and more complex. If this were not the case, every single person in this country would be addicted to something — medications, sex, porn, alcohol, smoking, gambling, shopping, overeating (poster child: Chris Christie — and he’s supposed to be the “opioid czar”?), the list is endless. Mr. Kolodny is the epitome of this ignorance and has played a huge role in the American Holocaust on Pain Patients. You have a LOT of blood on your hands, Mr. Kolodny.

    Any substance that can be used (and consumed in any way) can also be misused and abused. This includes alcohol, which is still the most abused substance in America. 88,000 people die each year in this country due to alcohol or alcohol-related accidents and injuries. It is legal, cheap, and widely available. It has no medicinal value but is a wonderful form of revenue for federal, state and local governments (as it is taxed at a higher rate).

    Who is the DEA, CDC, PROP, etc. to determine who gets pain relief and who doesn’t? They are building a false crisis with lying statistics, taking the focus of a patient’s right to treatment by their physicians (which will do NOTHING to relieve the addiction problem – addicts will always find what they want). Very, very few chronic pain patients become addicted to opioid medication – fewer than 2%, fewer than 1% if there are no addictive behaviors in the family.

    In fact, we are seeing the very opposite effect!!! Overdoses and suicides are UP — all because of the government’s foolish attempts to prohibit the use of opioid medication. Desperate pain patients who have been cut off and thrown under the addiction bus resort to street drugs. If that doesn’t kill them, they move on to suicide — ALL BECAUSE THE GOVERNMENT INTERFERES WITH MY PHYSICIAN’S RIGHT TO TREAT ME!!! It is orchestrated genocide of a fragile population by torture, deliberate and heartless.

    Chronic pain patients, who for years have been stable on their prescribed, supervised regimens, are being cut off (many not even titrated off of their dosages) and being kicked to the curb for the actions of the addicts. We have never abused our medication, but it is being stripped from us. This increases our pain, limits or eliminates our functionality and productivity, and imprisons us in our homes and beds, all to fight a war we were never invited to.

    We are second-class citizens who are abused in hospitals, emergency rooms, pharmacies, and in our own doctors’ offices. We are treated like the addicts we ARE NOT. We are patients, not addicts.

    CHRONIC PAIN KILLS!!! Untreated and under-treated chronic pain results in early death from adrenal failure, chronic-pain-induced diabetes, strokes, heart attacks, uncontrollable blood pressure, and suicides. Why must we die early, pain-filled deaths due to the calculated lies and baseless statistics spewed by Mr. Kolodny?

    Mr. Kolodny and others often spout off that there is “no real evidence” that opioids are beneficial to chronic pain sufferers. Well, Mr. Kolodny, how about the evidence presented BY THE PATIENT???? It’s no different than diagnosing someone with depression. There are no tests, no studies — you HAVE TO LISTEN TO WHAT THE PATIENT TELLS YOU to determine what is going on. I am one of millions who will testify wholeheartedly that YES, OPIOIDS ARE EFFECTIVE THERAPY FOR CHRONIC PAIN. Get off your high horse and listen to the truth!!!

  8. Kristi at 9:54 pm

    Is there any collaboration with the pain organizations in regards to being an advocate for the pain community? I feel these organizations need to unite and be very loud right now. Is there a class action lawsuit being raised at this time?
    I have been pretty lucky in Nebraska with my pain medications. I think my insurance contacted my Pain Dr 1 time in regards to the quantity of morphine I was given. My pain meds have not been reduced. I have 3 rare diseases and one of them is considered the 2nd most painful rare disease.

  9. Dana Shore at 3:03 pm

    To all cronic pain suffers. Now is an excellent time for a class action lawsuit. What the FDA has done to us deserves that type of attention. I will start a Facebook page for people to sign up that are interested. It is time to fight back with any means necessary, this is just the beginning. Good luck to all of you.

  10. Jan Kane at 2:44 pm

    Let doctors be doctors (minus a few bad apples). Let politicians be sent to sensitivity training, or better yet, not a day…but a year in our shoes of pain! I’m talking about the pain that escapes my opiate treatment.

  11. nana at 10:46 am

    I moved from Oregon to the Boise, Idaho area because of my Husband’s disability.

    When we arrived here 3 years ago I couldn’t find a doctor at first. When I found a doctor (then another and another) they all said they did not prescribe opioids. I was given a denervation under anesthesia but denied pain medication during recovery. The doctor finally called my home and told me to take some expired morphine I had from a past surgery. Doctors here are just too afraid to prescribe opioids.

    I have had 4 prescriptions now here. In 3 years I have had 2 for 30 oxycodone and 1 for 56 and 1 for 60. In 3 years!

    I am sole caregiver for my husband but I live my life sleeping for the most part. It doesn’t hurt as much when I am asleep.

    I have c-2 to t-3 fused and laminated bilaterally and L5-6. Fibromyalgia, CFS, RLS, psoriasis and leser trelot`.

    The CDC is happy but my life is contained within our home. When I shop I bend over in pain and become incontinent. I need another surgery (nissen fundoplication) but am terrified! How will I survive it without pain medicine?? Three days worth? I have read it takes about 6 months to begin to heal.

    I am almost out of old medicine I had hoarded. What will I do then?.

  12. Don Whimpey at 10:03 pm

    I agree, I was set on the correct amount of medications and was able to start walking again with meds , therapy and help from a manual called Brain on Pain. Everything has improved my life to walking again even jogging in my therapy program. Now my meds have dropped 110 mg in two months. I can’t jog any longer, my job is in jeperdy since going from full time to having to take 2 or 3 days off to recuperate. I haven’t abused my meds and have got my life back to a normal but the medication has been dropped for my benefit but it’s going to make me disabled because I can’t do what I did with the proper treatments.

  13. Jean Harris at 8:22 am

    As a chronic pain patient, I have personally been forced to taper my opioid medications due to the CDC and state guidelines to fit into the one size fits all – no matter how much it causes problems with my ability to function in daily life. I live in TN where this supposed high opioid epidemic exist. I have been successfully treated with opioid medications for approximately 10 years without any addiction issues.
    These opioids have helped me to function as opposed to not being able to get out of the house at all and spending my days laying on the couch and at times in so much pain that I have been in tears. It is cruel to be forced to change my daily dosage when, my doctor and I found a dosage that worked for me. I cannot go out with friends, or drive 3 hours to visit my Mom, or simply go to pick up groceries at times because I don’t have ample medications. I view the opioid medications as necessary just like a person who has diabetes needs insulin in order to function. My doctor is a pain specialist and a very good one, but he is limited in his ability to help me. The specialist should be allowed to prescribe based on individual needs – not based on a daily morphine equalivant set by the powers that be – who do not know me!

  14. Danny at 8:19 am

    In the interest of truth, the “cross section of Senators” included 15 Democrats and 1 Independent.

  15. BL at 6:43 pm

    Dr. Kolodny did not ask for patient’s to answer these questions. Patient’s answering these questions will not make any difference. Perhaps the patients this applies to should ask their doctors or previous doctors, to answer Dr. Kolodny.

  16. mist at 4:30 pm

    after level 3 neck surgery I was refused proper pain meds very low dose, BP close to stroke Surgeon refused to up dose .family doc meds were raised fenytal patch 3 weeks,then I agreed to quit patch 50 mg of Oxycodone per day, then tapering 30mg of oxycodone per day had a complete MS relapse,pain was in no way under control at 30mg of oxycodone BP was 163/110 and I was put on a machine that kept showing same numbers over and over . 50mg oxycodone and blood pressure has been 110/72 .
    Gundersen Luthern healthcare WI
    Multiple Sclerosis ,Fibro. Scoliosis, Degenerative Disc Disease, blood tested positive for Ankylosing Spondylitis

  17. Ibin at 1:03 pm

    I CAN tell Dr. Kolodny, my personal plight before the “opioid crisis”. A single back surgery for a herniated disc was the repair for a blue collar worker. A year after the repair surgery, I had another herniated disc. This incident called for a fusion surgery with surgical plates and screws. BEFORE the second surgery, same surgeon, the surgeon made the statement, .quote, “you are going to go on disability”. I responded,. not going to happen. I had two children in college, a mortgage to pay, and all the remaining recurring debt to meet. I built a small business that I did not wish to abandon.

    After two back surgeries, the second being very invasive, I STILL was in incredible constant pain, after ample healing time, even though the surgery was a….success. The surgeon remarked after about 8 months of “heal time” that he could no longer prescribe opiate medication. This was 22 years ago. I was on a very low dosage of a small amount of opiate medication. I gave it my best attempt to use OTC medication. The pan was unbearable night and day. I was seeing my General MD whom I still see after 30 years. He referred me to a pain management specialist. The specialist was an anesthesiologist and the management was done inside the building of a local hospital. I truly believed that pain management may not include oral medication.

    Infusions were done without any success, the doctor knew of my sincere wish to continue working at my business. Oxycontin was prescribed and continued to be prescribed for about a year. Unfortunately OC was not the “best” pain reliever for me. After some trial runs on different opiates, I was prescribed, methadone. The doctor knew me very well by then. He knew that I did not use illicit substances,drink alcohol, ( and it’s OK if one does), and my desire was to be able to simply work, sleep, and provide for my families needs. I seen this particular physician…..for 14 years. One medication, the same, for about 13 years.

    I am now at the second of only two pain management specialists. The current is a spine specialist. After having ALL tests done available on me for my condition, he, it, was decided that the pain would never cease. It was NOT induced by opiates. The pain was from the surgeries. He prescribed the same medication at a 33 percent lower dosage than the first specialist. I have been able to continue working with only the methadone, in a smaller dosage, for 5 years, without increase, and without any other opiate medication.

    He was forced to reduce ALL his patients and comply with the conversion chart, CDC chart of 90 milligrams of morphine equivalent daily, regardless of my personal records, constant analysis to “make sure” I was the ‘ultimate user” and I was not using ANY type illicit medication. January 1st, 2017, I was began to be reduced by 80 percent, which meant only 20 milligrams of medication per day. It was more than obvious to my physician that I was in great pain, constantly. My medication was changed, after a discussion with him and he and I thought that maybe, just maybe, a medication change might “keep me on my feet”.

    I have not been able to work for almost 4 months with the medication change. Last visit, I stated this fact. The physician was truly sorrowful but, he was powerless to help me. He records his summary of my visit, every time I go. His last statement was “I do not believe that I, have an “addictive nature”. Yet, any dosage of ANY opiate medication that exceeds the 90 mme daily will NOT be prescribed even with my failure to be self reliant, self sufficient, and treated on an individual basis. Even with a documented history of about 20 years of “successful” treatment with opioid medication and, with ZERO negative incident in the entire time.

    I now stay home, burning through LIFE savings, very worried about the future of my spouse…..and myself. I continuously write the state medical board stating my case, without any positive outlook. I have been forced to “retire”, at age 58 because of 90 mme. I am probably more healthy than most 40 year old folks because of my very active nature and the business……I had. Healthy in the aspect that my last yearly physical, all measured “chemical” statistics were within the healthy perimeters.

    The CDC mis-guided-line, an attempt at curbing drug abuse of all natures is having a ridiculous negative affect on documented patients with pain, that is not…..”curable”. The CDC “policy”, and especially 90 mme, daily, is an around the world trip to walk across the block. I.E., a very bad policy in the attempt to help folks that maybe have become addicted to illicit, possibly prescribed opiates but, there a great many patients with pain that ARE enduring worsened pain, extra hardship,needlessly because of the lack of thought placed into the mis guided-line policy. Patients with severe, continuous pain that HAVE documented beneficial use of the ONLY medication known at this time to ease constant, disease, injury causing…….pain. A policy forced upon the physician to NOT prescribe to the patient with pain, an effective dosage of recorded, prescribed, medication A unilateral minimum regardless of what type of medication.

    I am NOT able to be self reliant, a sovereign patient able to supply my families and my own needs because of such an asinine policy. EVERY physician has been warned NOT to exceed 90 mme daily, or there will be very serious repercussions if they do, regardless of years or decades of documented treatment to any and all patients with pain. CDC “policy”, Department of Health and Human Resource, or state medical boards are all in compliance. There is no other “resource” for patients treated “successfully”. beneficially, with “proof” if you will of no misuse, redistributing of their personal medication. No where to turn. Comply or die.

    My state medical board stated that the “policy” is for the patient that “MAY” misuse their medication. How many years or decades does the patient “need” to be vetted? The entire policy is a joke. A bad one.It is doing nothing but causing unnecessary hardship on the many, without real help for the few.

  18. Kathleen Kempken at 12:10 pm

    I still don’t understand why chronic pain patients who fall under palliative care and have been taking opioids long-term, without any issues, why are we being accused of medication abuse, death due to opioid overdose and sharing our medications?? I understand there is a small percentage of patients that abuse the system, doctor shop and sell their meds and those are the type of people who should be targeted along with the folks who are getting street drugs. Unfortunately, we all know that street drugs will always be here and the folks buying those meds will always find a way to get their fix; one theory the abusers are dying so rapidly, could be the street sellers are finding different ways to boost the “high” and the abusers are paying the ultimate price! Please don’t harm the responsible ones suffering from longterm chronic pain or life long chronic pain patients. We didn’t ask for these injuries/illnesses, but it’s the hand we’ve been dealt and we’re only looking for some relief to manage our pain, be able to enjoy our families, work, and do very basic duties each day. I’ve tried going without opioids and the pain literally brings me to my knees. It’s only fair that we get a chance at somewhat of a normal life just like everyone else! Thank you, Kathleen

  19. Joanna Pinne at 10:07 am

    I do not think Kolodny is even asking the right questions or starting from the right premises. Clearly he is out of touch with the reality of what is happening to millions of people. Why the insistence that everyone be tapered? I think is he is most ingenuous, at best, and, and worse, and from a look at his twitter feed, he appears to me to be obsessed with one side of the opioid issue to the point that he entirely dismisses their efficacy for pain.

  20. Heather at 5:55 am

    This is all so true. Everyone is so focused on the “opioid epidemic” and finding ways to stop it all while harming more innocent people who truly suffer from chronic debilitating disorders called the REAL PAIN PATIENTS!!!! We are being mistreated, undertreated, or not treated at all. Just last month I went to my regular monthly pain Dr appt and a bombshell was dropped in me as I was told I was being weaned off of my Morphine ER because he wasn’t going to have the government in his office. This is in Orange Park, Fl by the way and don’t want to release my Drs name and practice. And I said what, why??? AS a nurse who is unable to work due to my many chronic autoimmune and immune disorders, I started crying and simply asked what is going to happen when your patients start coming in on wheelchairs or worse bedbound due to you saying all patients are going to be taken off of all ER medications. He said I don’t know but I’m not going to have the government in here. I said well I follow this all very closely and don’t understand why all of you Drs don’t stand up for your patients when we all have legitamiate diagnosis and treatment is working and we are not abusing our medication. We take our routine drug test and pill counts or whatever is asked of us? He said it is past that point, you know that. I said this is all from illicit synthetic HEROIN and FENTANYL not the REAL PAIN PATIENTS. He said I know but they are down our throats. So Drs afraid and now weaning all patients including myself off my ER Morphine I have been on for almost 4 years with no difficulties or side effects. Now as I’ve started the process I’m so sleepy it is horrible and I was never that was before. He told me of o started having had withdrawal symptoms he would order me a medication for it. I will be weaned off over 3 months supposedly. He will only be ordering short acting breakthru meds from now on. This is very scary as I use a cane a lot as it is. The government doesn’t give a [edit] about patient care or quality of life or will they even listen to the Pain community. You are also absolutely correct when I keep writing them asking what there plan of action is for increase SUICIDE amongst pain patients because it is happening rapidly and no one should ever have to take their life due to lack of care and failure of medical community. And by the way forget about going to the hospital. Orange Park Medical Center will NOT see you of toubsee pain management. They will flat out first off say we are not here to give you drugs. No one ask for them we need care. They discharge you to follow up with pcp. This has happened to me several times to the point I quit going. I will not be belittled, treated inhumanly and neglectful and in an abusive way. Yes there is a problem on the street but every patient that comes in in pain is NOT an addict……This infuriates me that America has let this happen to our healthcare. So I will continue fighting for us and writing CDC, FDA, DEA, White House, and my local representatives. Please do the same. We have to make a STAND, SPEAK UP, STAND TALL, LET OUR VOICES BE HEARD, and MOST IMPORTANTLY BE YOUR OWN ADVOCATES!!!! Fight the Fight!

  21. Linda at 9:58 pm

    Thank you. So well written. So appreciate the opportunity to address our issues here. The pact mentality here will go down as a real black eye American Medical History.

  22. Bob Schubring at 6:33 pm

    There’s a massive disconnect at the federal level, between the 435 members of the House of Representatives, and the 100 members of the Senate.

    The House healthcare bill passed, after a large block grant to support mental health care was put into it.

    The Senate bill nearly passed, after (illegally) inserting a $45 billion provision for “opioid addiction treatment” and $100 billion (also illegal) in bailouts for health insurance companies.

    The US Constitution requires that funding bills originate in the House. Not in the Senate. The Senate is free to cut House spending, but lacks the Constitutional authority to insert new spending provisions that the House never authorized.

    Apart from that procedural problem, there’s also clear confusion about the difference between substance-abuse treatment, and mental health treatment.

    In objective reality, substance abuse is a symptom of mental health issues, and generally results when a person with a mental health problem attempts to self-medicate for that problem, but does not comprehend the nature of the problem, or the effects of the medication, or both.

    Repeatedly sending people to Detox, is ineffective at fixing what is basically a lack of skills and knowledge, related to the cause of one’s own mental health troubles and how to remediate them. At best, the Addiction model championed by Andrew Kolondny and cults like the Church of Scientology, presumes that one’s beliefs and ideas have no connection to one’s state of health, and that merely regulating one’s intake of substances, will make one into a healthy person.

    Actually, that’s false.

    The brain has no sensation of pain, when it is injured. It responds to excessive stress, not by hurting, but by shutting down essential functions.

    If one’s ideas and beliefs induce one to waste too much mental effort in an unattainable pursuit, and not enough mental effort to ensure one’s survival, the consequences of that result in psychosomatic illness.

    I can’t pretend to know what Governor Christie wastes his time and effort at, nor the exact nature of the frustrations that his ideas and beliefs have caused him, but clearly his efforts to self-medicate with massive overdoses of food are not helpful. (Author’s note: I used to have obesity once. Dieting was completely useless. Learning the causes of my anxiety and learning the skills of self-assertion, helped me to notice the difference between eating for pleasure, and eating out of fear. Sharing my skills with others and sharpening them, have moved me along to where I clearly see that if I’m endangered by something, I need to escape the danger and find a safer place to be. Eating to distract myself from the fear, does not make the threat disappear. As a guy with a significant scoliosis of my spine, my pain level is also much better, now that I’m 100 lbs lighter than I once was. It took a lot of work to carry all that excessive weight around! I raise this issue in connection with Gov Christie to point out a problem with the ideology he’s using: His ideology isn’t working to protect his own health, from the causes of his obesity. Accordingly, he would do better to open a productive dialogue that seeks answers, rather than try to impose his obviously-failed ideology upon the rest of us, as if it were actually workable.)

    To use one’s mind effectively, one must understand the difference between fact and fiction. Truths give every one of us, the means of using our personal efforts, to make our lives better and to exert a helpful influence upon those around us. Falsehoods cause us to blunder, fail, and occasionally, burden our neighbors with the consequences of our errors. (Like my error of eating when afraid, instead of either figuring out how to put a bigger lock on my door or else bugging some trusted friends to take me in as a roommate.)

    A mentally-healthy individual comprehends the difference between truths and falsehoods.

    A person with mental illness, needs help in learning this skill.

    Since the teaching of that skill, of distinguishing truths from falsehoods, improves not only the moral character of people, but also strengthens their capacity to participate constructively in their community with their neighbors, it’s a benefit to a community to promote as much mental health as can possibly be had. Even people with the most extreme of disabilities, those who require assistance from family or other caregivers, to care for themselves, benefit personally and socially from better mental health. The severely-disabled person imposes less of a burden upon his or her family and caregivers, by knowing how to make their jobs easier.

    And of course, people who are not severely disabled may, thanks to better mental health, identify ways to support themselves and their community, becoming productive people again.

    The House bill, by looking at the entire spectrum of mental health issues and making funding available for treatment, invests in people. If people get better at solving their own problems, over time, they become more productive and are better able to sustain their own level of consumption.

    With all these benefits arising, from the mere teaching of the skill of how to tell fact from fiction, one wonder what politicians are playing at, by refusing to invest in mental health, and instead, focusing only on one symptom of mental illness, substance abuse.

    Is it conceivable that politicians fear an electorate, who can apply their skills at telling fact from fiction, might ask serious questions of those who seek public office?

  23. Angel at 3:58 pm

    I’m one of the patients who’s had my health and life destroyed by a forced opioid taper after the state of washington suddenly suspended my pain physicians license. My doctor had no patients overdose and no diversions and was targeted with 4 other physicians the same day for the simple fact they prescribe to very sick patients in amounts over the new recommended limits. I’ve been a pain patient since age 12, I am now 36 yrs old. I have multiple serious chronic diseases including epilepsy, Crohn’s disease & subsequent primary sclerosing Cholangitis (bile duct disease) polycethmia and endometriosis. This list is not complete and does not take into account problems suffered due to primary diseases and their treatments. My forced taper began at less than 1/3rd of my stable opioid dose and have now gone even much further down. I’ve had increases in every bad measure, seizure activity no longer controlled, rapid weight loss, alopecia, loss of function/mobility and high blood pressure, depression anxiety and sleeplessness. I’m at my wits end I’m not sure how much longer I can continue living this way. Thank you to everyone at the national pain report for advocating for those of us in severe chronic pain.

  24. Rick at 1:50 pm

    My story is nuts. I’m going to try and get on paper. Full body CRPS progressive and active. Taken off.

  25. Kathy C at 1:33 pm

    There may be reason to distrust Kolodny’s Motives and Agenda. Patients are already under attack, and providing this information can expose them. Many will avoid providing specific which will feed into Kolodny’s false narrative. We really don’t know who to trust anymore, especially when our remarks can be turned agaisnt us, to make us appear pathetic, Mentally il or our to get something. We are in Post Fact America. He is seeking “Anecdotal Information.” In some cases these anecdotal Stories are used against. As if for every argument they have a slick counter argument.

    Vice News on HBO did a good Segment. They actually Interviewed Hard Working people in Maine, where they have some of the most restrictive prescribing measured in the country. They told the side that the Media avoids. They also interviewed a Physician.

  26. Ron Blanton at 1:24 pm

    Where’s the voice of the people that need to have pain meds be sure to save the people thT wont to get high when u take the meds off the market do u really think people are going to stop getting high welcome to a dream world

  27. 4kids4ever at 12:48 pm

    I wish more Pain Mgmt Physicians would chime in. They’re purported to know more than anyone about pain management, so let’s hear from them. They surely must know about what’s really not an opioid epidemic, but an illegal drug epidemic.

  28. Deborah babcock at 12:12 pm

    What about this. In response to stop blaming the drug addicts !! Well the pain medication has been taken away from us people that are truly in pain z d need them. There are people out there that get them and don’t need it. So,,what about living every day of your life in pain,severe enough to cry myself to sleep just to wake up an hour later in pain again and how about not being able to function or work or do much of anything how about the many people going without their meds and contiplate suicide or commit suicide already..Now tell me who is to blame for this non prescribing of pain medicine to the true people who ared suffering ???? If it’s not the junkies fault then who?? Cause I live with chronic pain daily. I never have been hooked on drugs not even the pain medicine that I use to get before they yanked me off of it abruptely..finally I would like to say….RIP to all that have commuted suicide because they couldn’t take the pain away or even just some of it..i pray that you all have found peace…Amen

  29. HAZZY at 12:06 pm

    I WAS TOLD, THE LAST TIME I WENT TO PAIN MANAGEMENT, THAT MY INSURANCE COMPANY SAYS I HAVE TO BE GIVEN A 28 DAY OF SUPPLY, AND THEN LESS AND LESS EVERY MONTH. I CONTACTED MY PRESCRIPTION INSURANCE COMPANY AND THEY TOLD ME THAT WASNT TRUE. IVE BEEN ON OPIOIDS FOR ALMOST 18 YEARS, IM 64 YEARS OLD AND I TAKE MY MEDS AS PRESCRIBED, THIS MAKES NO SENSE, I DONT KNOW WHAT TO DO.

  30. Anonymous at 11:59 am

    I think I was actually the first person to respond to Kolodny’s request by stating that he can start by looking at the VA and work out from there. He of course, has now blocked me. Someone else has passed on the info that I have also been reduced because of the CDC Guidelines, now the whole clinic is going down to 90 MME regardless of function, medical condition or pain. This is in Washington State. Don’t want to proved more, afraid clinic will kick me to the curb.

  31. PaulC at 11:01 am

    I’m glad to see this post. I think there is enough to bring a class action suit against the CDC for the harm caused to pain patients by their continual recommendations to prescribing doctors that has caused pain patients ti be kicked to the curb and these actions were all in an effort to reduce OD deaths from opiods, which has not worked. Not only has it not worked the addiction and death since 2009 have increased by such a large number they should have realized by 2013 that the problem was not prescription drugs. No the problem is the addict themselves. In fact they should revert back to 2008 and let all physicians prescribe the way they were, which will get the addict off of the street drugs ‘heroin’ that has been poisoned by dealers, which has caused the huge amount of OD deaths we are now seeing and this will allow the addict to go back to purity controlled prescription opiods until there is a actual solution for the addiction problem.
    Oh and I have the solution. There’s only one solution if the government is serious about fixing this problem and its going to cost a lot of money.
    Everytime someone that ODs comes into the ER and their life is saved what do we do with them? Jail? Nope we let them go.
    The government is going to have to take a page from the time when Tuberculosis was a big problem. What did we do? We built and housed the TB patients in facilities isolating the patient from the public.
    So here’s how we deal with this.
    We have to build and staff Treatment facilities across the country on a large scale. Not a prison, but a mandatory drug addiction treatment facility. When an OD patient comes to the ER the first time they go into these mandatory treatment facilities for 6 months. (they stay at the facility locked in) you cant treat addiction in 30 days. Second offense 12 months in rehab with mandatory random drug testing. The 3rd time I believe should be a prison sentence of 3-5yrs. The problem isnt prescription drugs, or the doctors. All the government has done is to cause more suffering to those who have actual pain that had been treated successfully. If you ban every prescription opiod the addict will still exist from drugs created on the street. I can’t believe the government is this stupid. Yes I said it.

  32. Don Whimpey at 10:16 am

    So what you are saying is the 240 mg I was taking and living a productive life I now have to deal with the current 150mg that has cause calling into work to say I won’t be coming in because of the pain where before I never missed a day and was listened to that certain changes need to me made and they listened to me. Now I’m struggling to get 20 hrs in a week that when on the correct medication and therapy I’d work 40 to 50 hours a week with great results.
    THIS IS NOT FAIR AND GIVES ME OTHER PROBLEMS AND PAUSE WHEN I GIVE A SOLUTION AT WORK. This was never a problem until 4/17 and my actions at work we’re accepted and pushed forward now I’m the last person they look to with possibilities of being laid off.

  33. Annie at 9:56 am

    I would further explain things as I see them.

    Now it is PC to say: Let’s not bash addicts. They too have a medical problem.

    I kind of disagree. I think they have a mental problem expressed by stealing to support their habit, destroying families, overwhelming medical facilities with OD and other medical problems. They are greedy and overindulged people who will get what they want regardless of the “price” both to themselves as well as to the community.

    So let’s not force them to stop. Indeed there are “shooting galleries”, nice ones being built and staffed so they can safely indulge in illegal activities. Steal the drugs or steal to buy the drugs then take them to a clean, supervised safe house to shoot them up.

    BUT LET’S NOT VILIFY CHRONIC PAIN PATIENTS who have a verified medical need to have access to what works best for them. Let’s set up “safe” places and safe ways for them to get and use what they need to relieve some of the incredible pain involved. Let’s weed out the obvious doctors who sell prescriptions. But stop the witch hunt. Stop jailing doctors who care about their patients. Let doctors decide what is appropriate for their patients.

    The biggest difference to these two groups is THE CHRONIC PAIN PATIENTS are being forced to lower or stop pain control and most I know are law abiding citizens who can be controlled.

    The criminal aspect of addicts for the most part is that they just won’t be controlled. Their pretty digs for shooting up “safely” paid for by the states. Mr Kolodny gets more addiction patients maybe.

    This is no war on opioids, it is a war on chronic pain patients and their doctors.. At least insurance won’t be paying the pain relief costs for this law abiding group..

  34. Dana Shore at 9:40 am

    This is so similar to the mentality of the gun grabbers. All the FDA and the idiot Kolondy are doing is promoting the illegal manufacture & distribution of illegal opiotes. When that happens there will be more money lining the pockets of the CIA, BUSH CRIME FAMILY, the Clintons, Soros and Rothschild families and deaths which they could really care less about. These 18 Senators are either too stupid to know what they are doing or are complicit. Either way the legitimate users are thrown under the bus and forgotten. A class action lawsuit is going to happen and rightly so. If any of you have tried the embeda or nuycynta you have seen first hand as to how kickbacks to the FDA decision makers get a drug approved. The current idiots in the Senate and FDA never take time to look at people with decades of opiotes use and no problems. They intentionally confuse the OD’s of people who bought the drugs illegally with people who follow the rules, after all we are coming up on an election year and they must have something to champion all at your expense. Kolondy doesn’t have the guts to meet with a room full of legitimate users and have a conversation with them.