An Open Letter to Dr. Andrew Kolodny

Update 6/27/18: I am overwhelmed by the positive responses I have received for this letter. I would ask that readers also take a look at all the articles and references cited in this piece, and share those as well. Those references go into much, much more detail and research than I have had space or time for here. Thank you all so much for reading and sharing, I believe we will make a difference and win this fight for our lives! #wearehere

See also: A Rock and a Hard Place, The Truth About the Opioid Crisis, and Strangulation on Medicine

Dear Dr. Kolodny,

I am one of millions of chronic pain patients in the United States who has been continually and increasingly oppressed over the past few years by progressively invasive and prohibitive laws at the state and federal levels concerning the delicate relationship between doctors and patients, particularly when it comes to a certain class of drugs, i.e. opiates.

Ever since my very real, physical condition began about 4 years ago, my family and I have been disoriented again and again by a lack of what might be termed, “help,” from doctors. We have discovered a very confused medical community, corruption, and a growing collection of laws being passed so fast and furiously hardly anyone seems to know just what is going on.

This has resulted in doctors leaving my city, doctors outright refusing to accept chronic pain patients (or, if they do accept these patients, refusing to treat them with medications that suit the patient best) or new patients, and unprecedented referrals to pain management clinics and psychiatrists. I have a detailed post planned addressing the pain management clinics, but the psychiatrist referrals were more baffling to me. My local psychiatrists even refused me as a patient about a year ago because, “we don’t see chronic pain patients.” That made sense to me as I don’t suffer from mental illness, still my providers insisted I must be mistaken.


Down the Rabbit Hole

I began researching you and your career last night out of curiosity. I wanted to answer the question, “Who is this Dr. A. Kolodny, that everyone from journalists to policy makers and bloggers keep quoting as an “expert on opiates”?” And I found out. You, sir, are a psychiatrist and board-certified addiction specialist-turned policy maker (1) and buprenorphine (Suboxone) “evangelist” (2).

Your first private clinic was a Suboxone clinic in New York City, established sometime around 2003-2005, and it appears you (and/or other health officials) felt stymied by the federal limit at the time of just 30 patients for such clinics (put in place to stem corruption), because said health officials have been in the background, quietly working away at this very limit which was amended in 2006 (called DATA), to allow 100* patients after 1 year, and is now up in the House for being overturned altogether, along with expanding legal prescribers to nurses and other non-doctor medical staff. And look what has happened as a result:

Health officials, concerned about restricted access, lobbied alongside Reckitt Benckiser for the patient cap to be raised. “Why should we bind a healer’s hands from helping as many as he or she could?” Senator Hatch said, getting an amendment passed in 2006 that allowed doctors, on request, to go from 30 to 100 patients after a year.

The stage was set for more patients, prescriptions and problems. “It’s when the limit was raised from 30 that doctors started to get commercial about it,” said Dr. Art Van Zee, whose buprenorphine program at a federally funded community health center in rural Virginia is surrounded by for-profit clinics where doctors charge $100 for weekly visits, pulling in, he estimated, about $500,000 a year.

“They are not savvy about addiction medicine, don’t follow patients very closely, don’t do urine testing and overprescribe,” he said. “That’s how buprenorphine became a street drug in our area.” https://www.nytimes.com/2013/11/17/health/in-demand-in-clinics-and-on-the-street-bupe-can-be-savior-or-menace.html (4)

“In the early days of Suboxone, with Reckitt Benckiser barely marketing its own drug, Dr. Kolodny, then a New York City health official, crisscrossed the city with colleagues to spread the word about the new medication, entice public hospitals to try it with $10,000 rewards and urge doctors to get certified.”

https://www.nytimes.com/2013/11/17/health/in-demand-in-clinics-and-on-the-street-bupe-can-be-savior-or-menace.html (4)

Since at least 2005, you have been marketing buprenorphine as if you had a personal stake in the drug, to government institutions and agencies including prisons, public hospitals, and rehabilitation facilities (2). In the fall of 2013, you were appointed Chief Medical Officer (5), of the largest chain of non-profit detox/rehab facilities in the USA (cited for questionable practices and abuse from at least 2012-2015) (6) called Phoenix House, which received $131 million in June 2013 (7), championing the use of MAT, or “Medication Assisted Treatment,” and which now funds your non-profit, policy-influencing group, PROP, or Physicians for Responsible Prescribing. I wonder which drug Phoenix House used?


Hang ‘Em High?

salem witch hanging.PNG
An innocent “witch” (woman) is hanged at the Salem Witch Trials, much like other innocent pain patients are persecuted.

Since you often cite the United States vs. Purdue Pharma (2007) settlement in your interviews and writings, perhaps you saw an opportunity to expand the use of buprenorphine by targeting and demeaning chronic pain patients as mere “addicts”.
It was odd to me in researching that incident, in the official “Purdue Guilty Plea” document (8), the very words they were condemned for, claiming OxyContin to be “less addictive” and “less subject to abuse and diversion” (8), appear to be the exact words you use time and again when describing the benefits of buprenorphine (2).

Kolodny reminds his colleagues of the drug’s advantages. He stresses that bupe in the form of Suboxone is safe and almost impossible to abuse, a huge selling point at many of the clinics they will visit. Suboxone has a second active ingredient in the mix, he explains, an anti-overdose drug called naloxone.

It does nothing if you take bupe as directed. But if you sniff bupe or inject it or otherwise try to pack enough into your bloodstream to get high, the naloxone acts like a chemical booby trap, erasing the effects of any opiate, bupe included, and bringing on sweaty, nauseating withdrawal. “That’s the last time you’ll do it,” Kolodny says dryly. https://www.wired.com/2005/04/bupe/

In 2016, your organization, PROP (Physicians for Responsible Opiate Prescribing), got the ear of the CDC and helped to write the now-infamous, misinformed, and rushed guidelines for prescribing opiates. While these guidelines were fairly general in nature, they have been used as a springboard for countless pieces of state legislation and DEA investigations, which has, in turn, led to the above-mentioned abuse and abandonment of chronic pain patients and doctors, as well as opiate shortages in hospitals and ERs (The DEA, in an attempt to prevent diversion of opiates to the black market, has cut production by an incredible 45% in the past 2 years). I imagine that suits you just fine, since you have publicly stated you believe opiates should be discontinued for all but the dying and post-major surgery “for a few days” (https://www.ket.org/opioids/inside-opioid-addiction-10-questions-with-dr-andrew-kolodny/), and that “more treatment” is needed (https://www.vox.com/science-and-health/2017/8/3/16079772/opioid-epidemic-drug-overdoses), i.e. MAT/Suboxone clinics like Phoenix House.

'The National Gesture' 1926
“The National Gesture” 1926

You have hailed local municipalities and states in their further pursuit of legal action against American Big Pharma, the companies who make such things as Vicodin and Percocet, but not Suboxone/buprenorphine (which is also an opiate), which is made by an overseas company, Reckitt Benckiser, or Naloxone (Narcan), which is produced in a nasal spray exclusively by Amphastar Pharmaceuticals (10), a relatively new company founded in California in 1996 (11),  whose stock (and Narcan prices) have been rising quite a bit, lately (12, 13). Are you truly against the use of opioids, or just the ones that help pain?


The Opioid Epidemic!

mccarthyism
McCarthyism Propaganda

Although your policies, based on inaccurate data (14-15) https://www.acsh.org/news/2017/10/12/opioid-epidemic-6-charts-designed-deceive-you-11935 (15), and http://www.mdmag.com/journals/pain-management/2012/october-november-2012/just-how-responsible-is-prop, have been wildly ineffective at stopping heroin/fentanyl overdoses; although you are not a pharmacologist, opiate researcher, pain doctor, pain patient, surgeon, or even general practitioner; although you ran a private clinic for a short time in 2005 (as far as I’ve been able to learn) that dispensed buprenorphine/Suboxone, you have, for the majority of your career as far as I can tell, been a policy-maker and not directly involved with addiction patients or chronic pain patients whom you recently claimed were simply addicts who needed compassion and “treatment” (and, presumably, Suboxone).

“Many Americans are truly convinced that opioids are helping them. They can’t get out of the bed without them.”

“Policy makers were told by industry-funded pain organizations not to penalize pain patients because of drug abusers. We realized that this wasn’t true. We don’t have these two distinct groups, one for pain patients and the other for drug abusers.” https://www.kolmac.com/2015/12/qa-dr-andrew-kolodny-chief-medical-officer-phoenix-house/ (15a)


If You’re Not For Us, You’re Against Us

sen. joe mccarthy demonstrates the communist threat
Senator Joe McCarthy Demonstrates the Communist Threat in America

You are cited and quoted in an impressive number of articles and interviews as a compassionate person who wants to see people and their families heal from the devastation of addiction, which is why it surprised me to find quotes from you that didn’t seem, well, “nice.”

It is the FDA’s role to vigilantly regulate the approval, labeling, and promotion of  pharmaceutical products, not that of counties or municipalities. County and municipal lawyers are inadequately qualified to make or enforce federal drug policy, and these lawsuits serve as a vehicle for local governments to seek revenue  through ill-informed measures under the guise of drug abuse prevention. In a May 30,2014, interview with   FDA Week, a CLAAD spokesman voiced these positions and expressed concern that these lawsuits are part of “a trend that will distract us from the real meaningful approaches to reducing prescription drug abuse.”

After reading the interview, Dr. Andrew Kolodny, president of Physicians for Responsible Opioid Prescribing (PROP)and Chief Medical Officer of Phoenix House,  contacted CLAAD via telephone to condemn its comments. During this conversation, Kolodny threatened that the Internal Revenue Service would revoke CLAAD’s tax-exempt status when alerted to the comments, which he believes conflict with CLAAD’s charitable mission.  CLAAD takes these false allegations and threats very seriously, and  responded in a letter which is publicly available for view on our website.

Critics who categorically dispute the motives of organizations like CLAAD and its diverse coalition members are, at best, narrowly focused. Their zealotry reveals their otherwise undisclosed health insurance industry bias.  At worst, they endanger the lives of people who live with pain and other conditions that can require controlled substances by stifling access to quality care. http://paindr.com/claad-and-phoenix-house-square-off/ (16)

Anyone who questions your authority, expertise, policies, or the efficacy of your pet drug, buprenorphine, is loudly dismissed by you as uneducated (17), addicted (15a), or corrupt (15a, 18), regardless of how closely they actually work with addicts and pain patients (17).

But Dr. Kolodny, I have nothing left to lose — your policies and attitudes have directly impacted my health, my freedom, my ability to be a parent, my work, my hobbies, my family, my finances, my friends, and my personhood. I have no problem announcing to the public, as loudly as I can, “The Emperor is not wearing any clothes!”

emporer has no clothes


Citations

(1) http://www.cecentral.com/search/faculty/136145

(2) https://www.wired.com/2005/04/bupe/

(5) https://www.phoenixhouse.org/news-and-views/news-and-events/phoenix-house-appoints-dr-andrew-kolodny-as-chief-medical-officer/

(4) https://www.nytimes.com/2013/11/17/health/in-demand-in-clinics-and-on-the-street-bupe-can-be-savior-or-menace.html

(6) https://www.reuters.com/investigates/special-report/usa-rehab-phoenixhouse/

(7) http://www.phoenixhouse.org/wp-content/uploads/2014/06/2013-Financial-Report.pdf

(8) https://assets.documentcloud.org/documents/4378824/Purdue-Guilty-Plea-Copy.pdf

(9)

(10) https://www.npr.org/sections/health-shots/2015/09/10/439219409/naloxone-price-soars-key-weapon-against-heroin-overdoses

(11) http://www.amphastar.com/about-us.html

(12) https://www.equities.com/news/naloxone-stocks-who-s-really-winning-the-battle-against-the-opioid-epidemic

(13) https://thinkprogress.org/pharmaceutical-company-with-monopoly-on-lifesaving-treatment-jacks-up-prices-3883e95f88c7/

(14) https://medium.com/@stmartin/neat-plausible-and-generally-wrong-a-response-to-the-cdc-recommendations-for-chronic-opioid-use-5c9d9d319f71

https://www.ket.org/opioids/inside-opioid-addiction-10-questions-with-dr-andrew-kolodny/

(15) https://www.acsh.org/news/2017/10/12/opioid-epidemic-6-charts-designed-deceive-you-11935

(15a) https://www.kolmac.com/2015/12/qa-dr-andrew-kolodny-chief-medical-officer-phoenix-house/

https://abcnews.go.com/Health/deaths-drug-overdoses-continue-rise-us-blacks-hispanics/story?id=54094943

(16) http://paindr.com/claad-and-phoenix-house-square-off/

(17) https://www.nytimes.com/2016/05/29/opinion/sunday/addicted-to-a-treatment-for-addiction.html

(18) https://www.kolmac.com/2015/12/qa-dr-andrew-kolodny-chief-medical-officer-phoenix-house/

https://www.vox.com/science-and-health/2017/8/3/16079772/opioid-epidemic-drug-overdoses

https://www.cdc.gov/drugoverdose/prescribing/guideline.html


Further Resources

https://www.cdc.gov/drugoverdose/prescribing/guideline.html

https://www.bendbulletin.com/topics/5342867-151/opioid-crisis-pain-patients-pushed-to-the-brink

http://www.mdmag.com/journals/pain-management/2012/october-november-2012/just-how-responsible-is-prop

http://nationalpainreport.com/cdc-does-not-comply-with-federal-law-8828305.html

https://www.chronicle.com/article/To-Counter-Opioid-Crisis-NIH/240219

https://www.painnewsnetwork.org/stories/2016/8/11/prop-ends-affiliation-with-phoenix-house

https://www.drugabuse.gov/publications/research-reports/relationship-between-prescription-drug-abuse-heroin-use/introduction

127 thoughts on “An Open Letter to Dr. Andrew Kolodny

  1. Thanks for writing the letter! It would be nice if somebody actually listened to pain patients and looked at the data without bias. Kolodny’s a liar and a fraud, far as I’m concerned he should spend the rest of his life in prison celled up with Bubba. I’ve only hated one other person in my life, that guy beat up my mother. At sometime his lies will be exposed.

    Liked by 1 person

  2. When are the Disabled and Elderly going to start getting the Pain Treatment needed to live a half way normal life?
    Because of the CDC guidelines Andrew Kolodny and Prop created we have seen to many people suffer because of them. It’s time to reverse course and start treating pain. Pain and addiction should have never been put in the same content.

    Most these people in leadership that create pain laws don’t realize the harm they are causing. They have bought into the advertising and hype that somehow Opioid Pain medicine is associated with overdoses.

    This is a lack of education. They have only absorbed info from what they have seen on TV and never actually did any real studies about Chronic or High Impact Pain.

    AG Wm. Barr said back in April 2020 they now realize those overdoses were caused by illegal drugs coming across the border. But when you see a large bust you will see a picture of a pill bottle and the general public automatically thinks it pain pills from a doctor. This is part of misleading info by the media.

    Newsweek also wrote an article that studies prove less than 1% get addicted to pain medication that takes it for pain. I’ve seen many studies saying 1% to 2% so my question to these lawmakers, why are you passing laws on opioid pain medicine that actually harm or kill 98 to 99% of those who suffer in horrific pain?

    The answer is because you are passing laws from someone’s opinion and not looking into research or any scientific evidence. This is so wrong for you to act carelessly with over 19.6 million that suffer in high impact pain.

    Liked by 1 person

  3. I am a member of Don’t Punish Pain Rally and also struggling with chronic pain for the past 5 years. I am not going to share my story right now but instead I would like to bring up a very important issue regarding our elected officials that we are deciding on today. This is President Trumps war on drugs that we are living in. He hired William Barr, AG who has mandated the DEA to go after the medical profession and pharmaceutical industry. Why isn’t anyone talking about this. Our only hope is that this election brings us a new admistration.

    Liked by 1 person

    1. While Trump and Barr have made things even harder, unfortunately, this is one issue our government leaders have been aggravatingly bipartisan on. It actually began under Obama, and many state leaders on all sides mandated the hardline, arbitrary laws that bind us and doctors today.

      Money talks, and of course most chronic pain patients are disabled and poor, and bewildered by the complex web of corruption that oppresses us.

      Liked by 2 people

      1. That’s for sure. The problem lies in lobbyists paying 1000s of dollars to legislators. Money is just one way to influence people illegally.There is stock fraud at work too.After contacting PROP about Kolodney’s Suboxone investment a news wire went out that he had none.He and other PROP members may feel ok now but every dog has his day.Life is like a vapor, it appears for a little while and it’s gone.He’s entering the side gate, if you know what I mean.I choose the FDA guidelines on drug inserts.He and Jayne have tried to hijack FDA authority but it did not work.They did not even meet the vetting protocol for consultants. This is why he hid his stock investments. Happens everyday.

        Sent from AT&T Yahoo Mail on Android

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  4. Thank you for your well written words. This doctor has abused his position long enough. By getting the information on him you took the personal aspect out or I should say the emotional aspect out of it and made it about the facts. Once again thank you, none of us have anything to loose anymore. This all has to change!

    Like

  5. So as a patient who has Chronic Pancreatitis with past issues with liver, pancreas and kidneys. With additional problems with spinal stenosis of the cervical and lumbar spine that causes chronic pain daily. Have tried all the nerve block medications and injections as well. Has been on opioid medications with no issues and has complied with all the regulations.
    Can’t take the risk on taking NSAIDS. Take away the meds I’m looking at a lifetime of pain. I’m fine the way things are! What gives someone the right to take it away and cause pain and misery to a pain patient. We have spent thousands of dollars in the past three years and hours upon hours of testing, imaging, physical therapy and multiple doctors and visits.
    Where are my rights? I’m fine taking the medications and I respect the medications. Who has the right to take that away when I have done nothing wrong. Kolodny is a disgrace!

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  6. Draconian government overreach is literally killing legitimate chronic pain pts. These discussions should be between Dr and Pt. Stop going after compassionate and knowledgeable Drs! The problem is Illict Fentanyl and Heroin, Not pain medicine!

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  7. Patients and their physicians together should determine each person’s pain management on a case by case basis. The federal government’s pain management task force and the American Medical Association both arrived at the same conclusion and soundly rejected Andy’s PROP aka CDC 90 MME “guidelines” that Director Redfield clarified in his letter of April 10, 2019 were meant only to apply to new patients and not any existing chronic pain patients, and that tapering was not mandatory and should be left to the patient and doctor on a case by case basis. Why do adults need the federal government to limit their care based on one man obsessed with destroying Purdue Pharma when 95% of overdoses are due to street drugs? What happened to individual accountability and freedom and the constitutional right to pursue life, liberty and happiness? What happened to the Human RIght Watch’s condemnation of CDC guidelines as torture? Why is Klonody not in prison, PROP discredited, and CDC restaffed with compassionate leaders who actually care about more than the addict who illegally chooses to inject an illegal substance? Even addicts need compassion and rehabilitation, not condemnation and prison. It seems our leaders could really care less about human suffering and have illegally enabled torture that are banned even by the Geneva convention or enemy combatants? Is 74 year old grandpa and 85 year old grandmother ina nursing home or hospice less than a captured ISIS terrorist?

    Liked by 1 person

  8. I speak and write widely on public policy for the treatment of pain and regulation of opioid analgesic prescriptions, as a non physician subject matter expert. From that background I would offer a measure of hope for patients and their doctors.

    In June 2020, the American Medical Association went on public record, calling upon the US CDC to greatly revise or retract almost all of its 2016 recommendations concerning the opioid guidelines. Central in these recommendations were calls for the CDC to advocate for repeal of all State and Federal legislation which places hard limits on opioid prescribing dose or duration.

    For an expanded overview of the AMA positions, I offer my article on the nationally recognized and respected blog of Dr Lynn Webster, a former President of the American Academy of Pain Medicine.

    https://www.lynnwebstermd.com/2020/10/10/american-medical-association-takes-on-cdc/

    “The American Medical Association Takes on the CDC Opioid Guidelines.

    Liked by 1 person

  9. To be honest I think this Dr. Kolodny has no intention of doing right by his patients. The fact that they prescribe Buprenorphine to chronic pain patients says it all…at 1% effective for pain, its being used to treat every chronic pain patient that can’t get their opioid relief. The damn drug Bupe is for 99% addiction, pain patients aren’t addicts and the science shows less than 2% of pain patients become addicted. So why are you pushing this horribly addictive drug that doesn’t treat pain to so many? It’s because you’re a greedy bastard and don’t care what you do to other people as long as you have your power and money. You are a despicable human being and I’m sure you will enjoy your tenure in hell. What you have done to make people suffer is worse than Hitler did in WWII. You should be ashamed of yourself and seek reparations, but you are too stupid to see this. Enjoy your eternity in hell you son of a bitch.

    Liked by 2 people

    1. Even my cat was given Bupe post-vasectomy last month. I asked the vet if that was too strong a medication, and they simply said that was their “current policy.” Huh?

      Like

  10. I have been on pain medication for 21 years and for the last 3 years I have not been able to care for myself nor do my daily chores. I was at 130 to 150 mg aday for the first 18 years ,then cut off and put on suboxone it did NOTHING to help with my pain . I have been able to get back on morphine first 60mg aday till I started to file a clame with the Arizona Medical Board. My pm doctor raised my meds to 90mg aday as soon as he found out then told me to find another doctor. This has to stop or there is going to be law suites against you and all involved in this INJUSTICE TO PEOPLE WHO SUFFER FROM CHRONIC PAIN. We did not do this to ourselves just to get pain medication bad things happen to us . You have no clue the damage you have caused to alot of people and families across this country. I cant understand how you sleep at night .

    Liked by 1 person

    1. I’m so sorry for your pain, Robert! I truly hope this nightmare will soon be over for all of us. Please hang in there.

      Like

  11. Best article I read to date about the truth behind the war on chronic pain patients. I could write a long list of all my spinal problems but I will spare you the details. I know I had managed to make some sort of quality in my life when I was being properly treated. i have been degraded, embarrassed, demoralized, dismissed, and forced into thousand and thousands of dollars worth of useless injections. I had plans and goals. Now, my goal is to make through another day without thinking about killing myself. Way to go with the research! I will be researching this a bit more myself of this 12 month headache lets up. I hate to be spiteful, but right now I hope they all break their backs and suffer in pain.

    Thank You!

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    1. Thank you so much, Marnie! I completely understand what you are saying, and I am so very sorry for your pain and suffering. I don’t think it’s wrong to hope for change, which is, I think, ultimately what you are wishing for. I do believe our severe trials are almost over. Have you heard of the “Don’t Punish Pain” group? I’ve spoken with the leader, Claudia, over the phone, and she is one feisty, smart advocate! Hang in there!

      Like

    2. This is in a letter I got from CDC which had passed thru the Bureau of Vital Statistics.This was an obvious PROP motive to do this, in particular Andrew Kolodny. This constitutes Scientific Fraud and is punishable by imprisonment. This was done to inflate the numbers. CDC and the Bureau concurred that the data was invalid. Now PROP is gone from CDC. Each one pointing the finger at each other. Justice needs to be carried out.
      “an opioid death due to heroin (opiate) is in the set of Rx overdoses” per CDC and Bureau of Vital Statics.

      Liked by 1 person

      1. We certainly do deserve justice! I strongly believe it will be coming soon, and no one wants to be the fall guy. Kolodny went around the FDA’s flat-out denial of his radical ideas, and got his buddy Tom Friedan (sp?), then-head of the CDC to put out those guidelines. It all went political and downhill from there, but our state leaders and Governors on both party sides certainly had a hand in it as well!

        Thank you so much for reading, and I am so deeply sorry for your pain. You said you received a letter from the CDC? My curiosity is piqued! Would you feel comfortable sending me (privately is fine) a picture of that letter and the date? What prompted such a letter?

        Like

        1. I got the door open at CDC with Dr. Anderson. I was a pharma researcher for 40+ years. Dr. Anderson and I discussed the data at length via email. He felt uncomfortable continuing but admitted the data set was off. He copied our last encounter to the Bureau of Vital Statistics. Surprisingly, they wrote me back and confirmed that the Rx overdose data set contained all heroin overdoses and Heroin is not prescribed. I brought all this up on my last comment on the June Docket. Suddenly PROP disappeared
          email me at mason.tim@att.net and I will send you the document. It may be tomorrow..

          Liked by 1 person

          1. Oh. My. Thank you for challenging them at their own game! How fantastic! Are familiar with Claudia at “Don’t Punish Pain”? She’s trying to get a class action lawsuit going. I think she would love to hear your story!

            Liked by 1 person

  12. As a retired RN who graduated in 1982, and a responsible woman at age 60, this letter is so on point.
    We need the return of the MD/patient relationship without interference from PROP, the DEA, or any government overreach agencies. We need the return of proper pain management to the American public! We are not children who need babysitting!
    Chronic, acute and surgical patients are suffering unnecessarily due to government overreach!
    Opioids are a necessary tool in the doctor’s bag, and are completely safe when monitored with the MD/patient relationship in tact.
    Mr Kolodney seems to have an agenda which is lining his pockets.
    This is the United States of America and people have a right to be pain free.

    Liked by 1 person

    1. Amen! Thank you so much for reading and commenting. I’m so sorry for your pain. I feel the tide turning towards more sensible policies, but of course, it’s too slow to help many people. Hang in there!

      Like

  13. Wow thank you and God bless you for writing this letter!! I’ve been in pain for 15 yrs and now I can hardly walk due to nerve damage after a lumbar fusion surgery- I’m sick and tired of this CDC guidelines being used as “ the law”. Pain management physicians will not go to the 90 MME that’s allowed due to fear of the DEA arresting them! Then who suffers? The 30 million chronic pain patients in this country — Shame on each of the doctors and supposedly health care workers who contributed to these guidelines and the horrible injustice that we are dealing with.

    Liked by 1 person

    1. Aww, thank you so much, Debbie! I hope the tide is finally turning in our favor. I’m so sorry for your pain. 😦

      Like

  14. Every one of us needs to do the same as this marvelous lady. Write Kolodny for what it is. I plan on doing it myself, just having one person doing it when we all should.

    Liked by 2 people

  15. I shared this with the meager 1,500 followers on my Facebook fan page and encouraged them ALL to click through and read it. Great work! Thank you for advocating for yourself, me and millions of others like us! Again, great work!

    Liked by 2 people

  16. I have Raynaud’s, and PAD in my legs as well. There is no cure for Raynaud’s, so I will have this for the rest of my life!! When you have chronic pain, It’s like having cancer but without being told when you’re going to die. You have the horrible pain but you haven’t been given an exit date so that you know when your torment is finally going to be over!! I’m on my 18th year of living with excruciating, horrible pain, something that I would not wish on my worst enemy if I had one!!

    My Raynaud’s cause me to have ulcerations on my feet. My PAD makes it difficult for me to do a lot of walking, if I walk too much I get horrible cramps in my legs and my feet that are excruciating!! Mostly the leg and foot cramps will hit me in the middle of the night while I’m trying to sleep. I’ve had leg and foot cramps hit me while I’m driving, so I have to pull over and try to make them stop. And because of my bad circulation my doctors don’t know how far back they would have to cut in order for the areas to be able to heal, so they don’t know if I would lose toes, my feet or even parts of my legs. So they don’t even want to operate.

    Whenever the weather changes and we’re going to have any kind of dampness, I generally have excruciating pain for two weeks before the rain and or dampness happens. Everything from rain, humidity, fog, cloud cover and even the threat of snow causes my pain level to go up to an unbearable level of pain. Normally without the threat of dampness my pain level is high as it is, but it’s generally controlled by the lowest dose of an opioid, I have been on the same low-dose of an opioid for 16 years and it still works to control my pain for the most part. I take it the way that I am supposed to take it so I never come up short of medicine. But just like an alarm clock going off my pain hits me every six hours.

    I live along the coast in Southern California, the cost has constant dampness of fog, cloud cover, humidity and even rain. I can no longer afford to continue to live here due to the high cost, so I’m going to have to sell my home and move. And what’s crazy is we don’t always get the rain so I’ll get the pain for two weeks and then we don’t get the rain!!

    I’m 61 years old soon to be 62 years old this month. I’ve had Raynaud’s most of my adult life. Always in the past I was able to deal with my pain, it was always manageable although it could be quite uncomfortable. I worked for 30 plus years of my life, the last 16 years that I worked I worked for the Federal Bureau of Prisons as a Correctional Officer.

    In 2001 after 911 our Prison housed some of the 911 terrorists, we housed them due to their crimes being federal and them starting here in San Diego and because ours was a federal prison. Needless to say housing the terrorists in our facility raised the stress level up exponentially in our facility. Prisons are very stressfilled places to work in as it is, but housing the terrorists added a whole new level of stress to our facility.

    I believe it was the added stress of us housing the terrorists in our facility that causes my Raynaud’s to go completely out of control in January of 2001. Our facility sat right in the middle of downtown San Diego, so we had constant foot and vehicle traffic walking and driving past our facility day and night. Some people would purposely drop white powder on the sidewalk just to screw with us. There was always the constant threat of having to worry about people possibly trying to break the terrorists out of our facility, prisons are crazy Animal to work in!!

    When my Raynaud’s went totally out of control suddenly I was in horrible pain from the ulcerations that developed on my feet. Every time it was going to rain, for two week prior to the rains coming it felt as though someone had poured gas on my feet and they had lit them up with a blowtorch. It was a horrible Constant burning pain sensation that nothing stopped. After the rain would come my pain would ease up where it didn’t feel like someone had poured gas on my feet and lit them up with a blowtorch, so the burning sensation would stop. I would still be in pain but with my pain medication it was far more tolerable.

    From January of 2001 my doctor tried every kind of non-opioid he could think of to ease my pain, nothing seemed to help. They even partially implanted a nerve stimulator into my back, to test that to see if that would help me with my pain. In the end it only gave me about 25 to 30% pain relief, so they decided not to fully implanted it into me. This year I found out that often times these devices break down and they fail, and if they fail doctors will not remove the battery and or the wires from your body. I also learned that if this device is implanted in you you can no longer have an MRI even if you need one. None of these things were ever fully explained to me before, so I’m now glad that I did not have this procedure done. The first year when my pain became so horrible I went to 42 doctor appointments all in an effort to try to get better, but it was all to no avail.

    My sleep pattern went from 6 to 8 hours of sleep a night to the following schedule. I would literally get 1- hour of sleep each day for 3 days in a row, by the 4th day I would sleep 4-hours. By the 5th- day I was again getting 1-hour of sleep each day for 3 days in a row. Followed by 4-hours of sleep the next day, so it was literally called rinse and repeat !! I had the sleep pattern from January 2001 to November 2003.

    Most of my time off from work was literally spent pacing the floor in agony, I couldn’t sit still. I couldn’t sleep and all due to my horrible pain. Every day I had thoughts of suicide due to my pain. I was working a 40+ hour work week at the prison, I drove my car and I carried a fully loaded 9 mm pistol every day that I worked . It’s only by the grace of God that I’m still on this earth.

    Stress causes my ulcerations to get larger and deeper. I never knew how much stress really got to me until my ulcerations developed. One morning 20 minutes before the end of my shift, my lieutenant called me on the radio and asked me to call the lieutenants office. When I called him he told me, sorry but I have to mandate you. Meaning he was telling me he was going to mandate me to work another eight hour shift. I had a five minute phone conversation with my lieutenant, where I explained to him that I had come to work in pain and I needed to go home. After a five minute phone conversation I had horrible wretched pain, I was literally in tears driving down the freeway. To this day don’t know how I got home. When I got home and I took my pain medication it was as if I taken sugar cubes, because it did nothing to stop and or control my pain!!
    I was in this wretched horrible pain for four straight hours!! You see I didn’t take my pain medication when I was at work, so when he called me and told me he was going to mandate me it stressed me out which caused my blood vessels to go into spasms. Doctors don’t know why stress causes the blood vessels to spasm or why cold temperatures cause the blood vessels to go into spasms which shuts off the blood supply which can cause horrible pain!!

    As I stated previously I’ve been on the same dose 5/325 for 16 years and it still works for me. Although my medication has been cut and that has not helped me at all. I finally medically retired in 2005 because I couldn’t take working in agony anymore. I felt that I was too much of a liability to my fellow officers. And walking up and down stairs was nearly impossible, so it made it hard for me to check the inmates to make sure they were in attempting to commit suicide. So predominately I was working outside on the 10pm-6am shift out in the cold, So that I could avoid working around the inmates. Because if I would’ve had to run from them, I couldn’t of ran even to save my own life!!

    My warden practically begged me to continue working for them, since I was their best female Officer. He knew he was going to lose his most experienced female officer who could work any post in that prison, so that would be a major hit to them. I was four years short of retiring with 20 years in at age 57, but I couldn’t have done another four years if you would have paid me $10 million to do it. Because pain like that pecks away and who you are mentally. Four years and I would’ve had my full retirement and I couldn’t make it to the end of it!!

    I think what made it even worse from 2001 to 2004 was knowing that my mom was dying from kidney cancer. I’m sure the added stress of that didn’t help matters it either.

    When my daughter was born in 1978 I gave birth to her naturally, that was because I never liked pain medicine. And to this day I still don’t like it, But when you’re in agony you have no choice but to take what helps you. And I did not have a spinal block, so when I say I gave birth to her naturally I gave birth to her naturally without any pain medicine or spinal block. I used to tell people at work I would rather have given birth to 10 babies in a row one after another than to go through this kind of pain, because seriously labor pain couldn’t hold a candle to this kind of pain. I had two shoulder surgeries on my right shoulder, I never took any pain medicine after my surgeries. The first doctor botched my first shoulder surgery, not only did he use the scope but he also cut the top of my shoulder as well, it was something he did not need to do. He took way too much bone out of my shoulder and he cut the tip of the bone in my shoulder off , ever since the first surgery I’ve had nothing but problems!! All of the muscles in the right side of my neck and upper back rope up so Tight that my daughter who is a massage therapist cannot get the knots out of my muscles, so I get horrible pain in my neck and upper back and I also get headaches from this. My right hand goes completely numb and I drop things due to this.

    As I always say the only difference between people with chronic pain and cancer patients is that we have not been given an exit date! We get to
    have the horrible pain but we don’t know when We’re going to die, and in a way that in and of it’s self does something to you psychologically, it’s like we’re being put torture year after year with no end in sight!!

    People who don’t live in or with with chronic pain need to think long and hard, because there but for the grace of God can go any one of you too!! And that’s because human beings are very fragile, all it takes is getting into
    a horrible car accident, or a doctor gives you a botched surgery or you get a disease that causes you horrible pain. And suddenly you’ll become one of us, where no one will want to treat your pain either. The very rules that you helped to make for all of us, will come back to haunt all of you or your loved ones! And your own laughter will ring hollow and flat in your own your ears, And you will remember your own laughter and how funny you thought it really is was, only it won’t be so funny when it’s one of you going through what we go through!!

    Liked by 3 people

    1. I’m so very sorry for your pain. You are right, all it takes is an accident or freak illness/surgery to end up like this, and I wish more people would realize it can happen to anyone.

      Gentle hugs, and thank you so much for reading and commenting! I believe things are changing, but it feels like trying to steer the, “Titanic”.

      Liked by 2 people

    2. I feel as if I am now being punished TWICE by something that wasn’t my fault! Back in 1989 I was hit by a drunk driver. I have had too many surgeries to even count as a result of this accident. I had tried everything possible to help me with my pain. My only option was pain medication which enabled me to lead a somewhat normal life. Now because of the regulations my life has been taken from me once again for something that wasn’t my fault! Most of my days now are spent in bed and I don’t even know what a good nights sleep is anymore! I’m not a drug addict, nor have I ever abused my medication. I would love to know exactly what my options are now??? All I want to do is to lead a somewhat normal life once again. Don’t I deserve that? I know that I speak for myself and many other chronic pain suffers. We didn’t choose to live our lives like this for sure.

      Liked by 2 people

      1. I’m so sorry, Karen. I do understand how you feel and all you’ve been through. Please keep fighting with me and the many others who are consistently calling and writing our government officials, and letting our doctors know we stand with them.

        Liked by 2 people

    3. Spot on ! Being an RN who graduated in 1985 in sure we have similar experiences in caring for pain. Sadly my medical issues made me retire in 2010. Having good pain management allowed me to continue for 13 years without any impairment before my disease progressed to the point I couldn’t continue. I had good professional pain intervention until everything started going crazy several years ago. Thankfully I have a great PMR pain specialist for now helping me. But, I had major spine surgery in July and suffered horribly until I was discharged and my pain doctor took over my pain management. We really need to get back to ordered and logical approach to managing acute and chronic pain. Both of which are different things. We know that patients heal better and faster if their pain is well controlled. That doesn’t mean we give them insane scripts like I saw several years ago. At the same time e we need to develop appropriate management of those like me who suffer with pain every day. Raising up an unqualified alleged professional as an expert on pain, all while profiting from a drug that he pushes is not how we should approach medicine.

      Liked by 1 person

      1. Yes! Thank you so much for your insight! Now we are punishing nurses who physically suffer for doing their jobs? What about those nursing shortages? The essential workers?

        How much disability can states afford to pay, when a safe, known, cheap, effective medication could easily put many of us willingly back in the workplace?

        Like

  17. This is awesome Loura! I began researching this little worm of a man about a month ago and discovered many of the same things you have, but you have also filled in some of the gaps for me as well. Thank you! This entire nightmare has been about the money! I just began to look into the money that treatment centers are raking in as well as the “patient brokers” . This has become such a problem that now there is legislation in the works making it a crime. Then tonight I heard about a company called Axial Healthcare. They are collecting insurance data on all of us chronic pain patients, using an algorythm to determine who is at risk for an overdose, which doctors are prescribing too much pain medicine, and then contacting both the doctors and patients in order to get our prescription patterns changed. Take a guess what it is they are providing people with? Yup you guessed it, medication assisted recovery drugs. They also claim to be in the pain management field. They are going to Target treatment centers who have a low success rate in terms of recovering addicts in the state of Arizona. Everyone it seems wants to get in on the opioid crisis goldrush. Just imagine all the money that will be available after the drug companies have all been sued. I have no doubt that much of that money will “accidentally” fall into the bank accounts of various politicians. I would love to get a peek at Kolodny’s portfolio. I am baffled at how so many worship Kolodny and how it is that one man has been able to cause so much harm! I believe we are watching the next Hitler in the making. This is truly so very scary. I often wonder how many of us CPP’s will survive this reign of terror.

    Liked by 2 people

  18. Yeah, I’m within about 7 wks of my 68th birthday. I started having symptoms of CRPS in 1994 following back surgery, needle-like pain, severe cramping in my calf in the middle of the night, extreme coldness, pain, Pain & More PAIN! The only thing one doctor fixated on was my bunion, which made no sense to me, I WAS an OR nurse,as well. Finally, in late 1999-2000, I received a diagnosis. CRPS, type2. No cure. They tried the usual series of blocks(epidural), then sympathetic, but none gave any persisting relief. I was placed on Neurontin which destroyed my esophagus and still suffer from those side effects. Then oxycontin, which at that time was beyond my income-I was disabled, but still had not received benefits! Then methadone & Soma, which helped. Then we moved to another state, & was able to locate a doctor in the little town who would prescribe those meds, however he left his practice. I had to go through detox. Then I did find a pain doctor who did a DNA test which discovered, my body does not metabolize methadone, but it does metabolize oxycodone. I was place on a schedule of that w/ Xanax to help w/ all the other symptoms that go along w/ this “syndrome.” I never ONCE overused, abused, misused, but once I reached the age of 66, I was officially OVER THE AGE to received opiates. Had I ever gotten dizzy or had adverse effects I would have understood, but NO! So now I’m in constant pain, intractable pain which COULD be treated but the government inserted itself into the physician-patient relationship, which I had always been instructed was as sacrosanct as the client-attorney privilege. Why are Pain Patients being punished while we are being law-abiding citizens, for what drug users do?

    Liked by 2 people

    1. I’m so sorry for your pain, Lorna. I do believe the tide is turning in our favor, finally, but we must continue to fight and bring attention to our plight. Wishing you well.

      Liked by 2 people

  19. In Jan., 2015, my 68 year old dad (a disabled chronic pain and palliative care patient with many painful diseases/conditions confined to a wheelchair 24/7 and on oxygen 24/7 and on 19 to 20 different medications, not one for the pain he suffered from) was denied pain relief while hospitalized just a week prior to being placed in hospice care, three weeks prior to his death.

    He developed avascular necrosis of both hips in his lower 30’s and had hip replacement surgeries on both hips that were botched. It took him three or four years to find another surgeon willing to clean up the last surgeon’s mess. By that time, severe infection set up inside his hips, which he carried for over 30 years. He ended up having 7 (or more) major hip surgeries on one hip and one on the other.

    Throughout my life, he was hospitalized many times due to becoming septic (from the infection), along with other complications. He also went on to develop chronic gout (acute flare up while hospitalized), rheumatoid arthritis, osteoarthritis, COPD (end-stage at the time of his hospitalization), chronic kidney failure, emphysema, congestive heart failure, severe diabetes with large open wounds up and down his lower legs, black/blue often numb toes and feet, mixed connective tissue disorder (unspecified), along with the chronic infection.

    He eventually ended up having a drain implanted in one hip that was so badly infected. This was so the infection (pus) would drain outside of his body instead of back inside).He’d been on a low dose of oxycodone for over 20 years when his doctor retired and he was unable to find another one willing to continue prescribing the medication that he’d taken for over 20 years with no issues.

    Within a year or two of being taken off the pain medication, he no longer could stand to put any pressure on his hips. The medication had allowed him to stay somewhat mobile though he could only walk short distances with the aid of a cane or walker. Due to his untreated pain, he missed watching youngest daughter’s wedding and his only grandson’s high school graduation. Although these two events took place less than 5 miles from his house, his untreated pain confined him to his hospital bed or lift chair/recliner.

    When he told the nurse that he was in severe pain (along with spiked blood pressure, which put him at risk of a stroke, despite pumping him full of bp-lowering medication) and needed something, she came back after speaking with the “doctor” (hospitalist), who said he did not want to give him pain medication and “risk addiction.” When we demanded he be moved to another hospital that would also treat his severe pain, they threatened us that medicare would refuse to pay for any of the medical services he had needed up to that point if he left AMA. (Mind you, he could hardly sit in a wheelchair, much less load himself into a vehicle).

    I finally went back up there and (nicely and calmly) told the nurse that if they did not address his pain and he ended up having a stroke or heart attack in this facility, the hospital would be hearing from our attorney. (I was bluffing at that point because I did not know much about how severe pain could affect the human body). I guess it got her attention since she relayed the message to the “doctor” and finally was receiving adequate pain relief.

    Our government and their restrictions have become cruel and barbaric. Forcing one group to suffer for the actions of another group (a much smaller group btw) does nothing to stem the tide of substance abuse and addiction. If anything, it just drives some who are often chronically ill, disabled, and desperately in pain to search for relief from black market substances with pain-relieving properties, large amounts of alcohol, and/or suicide.

    I suspect many of them invested years ago in pharmaceutical companies that are now pumping out Suboxone and new, “improved” Suboxone-like formulations, naloxone, naltrexone (and newer, “improved” formulations of both), and newer, fancy implants (Probuphine about $1,000 to $1,500 a month) and are ensuring they make a profitable return on those investments. One of these days, karma will come back to bite Special K and his lemmings on their rear ends. I wish I could be there when it happens!

    Bravo to your letter to he-who-shall-remain-nameless. You said everything I’ve been wanting to say to him (except you said it much more eloquently, with more class and details and without using a few choice 4-letter words that probably would not have been printed lol). I found this thanks to Pain News Network posting another article of yours on their facebook timeline, Kudos to you! I look forward to reading your other articles 🙂

    (Please keep in mind that I have no issues with MAT becoming easier to access – though I believe recovering addicts should also take part in counseling, therapy, and mental health screenings to also treat the underlying issues that lead to their abuse of substances resulting in an addiction. My issue is with the sheer hypocrisy and double standard policies he-who-shall-remain-nameless and his gang of zealots place upon opioid prescribing . . .

    advocating easier access to an opioid that is 40 times more potent than morphine (buprenorphine, the active medication in Suboxone, Subutex, etc) along with chronic, lifelong use for those with recent histories of abusing opioids while denying even moderate access to opioids, even weak ones, for those experiencing chronic physical pain

    Liked by 3 people

    1. Tracy, oh my…I am so deeply sorry for the pain you and your father and family have suffered because of such laws. Reading about your dad has made me nauseous and furious, and I agree with your thoughts about investment “opportunities” at the expense of the least of these. Such people are not ignorant, neither are they innocent or full of compassion. I believe karma is coming…

      Liked by 2 people

      1. Very informative and I will be sharing this far and wide ! Question
        Is Andrew Kolodny related to feminist and eugenicist Annett Kolodny?this would explain his ghoulish and morbid views of pain and addiction

        Liked by 2 people

        1. Thank you so much! I’m not really sure. I’m not familiar with Annett Kolodny, but after a brief search yesterday, could not find anything discussing her personal or family background. I’ve found a similar lack of information about Dr. A. Kolodny, which is odd to me since he has become such a public figure.

          I didn’t see anything regarding eugenics associated with Annett K. Could you please point me to a source?

          Like

          1. its Anthony. and their is plenty about him. The Letter to Anthony Kolodny has links to MANY places to research the idiot. And he is a He. not she.

            Liked by 1 person

          2. So there is an Anthony Kolodny who is a eugenicist, not Annett Kolodny, the feminist?

            Like

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