A Letter To RFK (Human Rights) Foundation


RFK Human Rights Group: Watch Video

Hello Luvs,

I was sent a video about the RFK, Human Rights Group. It’s led by Kerry Kennedy, daughter of the late Robert Kennedy. She is an attorney and she now leads this human rights group: RFK Human Rights group website

Immediately, I drafted a letter to her and sent it. Below, I have copied/pasted the exact letter that I sent to Ms. Kennedy. Something must change! The “Opioid Hysteria Crisis” is one of the worst nightmares I’ve witnessed &/or experienced. Watching a large group of approximately 26 million (out of the 100 million people living with chronic pain) human beings, systematically tortured to death has been horrendous. To be a witness to this despicable, willful & planned money making scheme, is nauseating to say the least! I’ve watched as the innocent chronically ill people in our pain community die and continue to die on a weekly basis. Maybe I will be next? So I pray that doesn’t happen and that I keep fighting.

I have been a very active advocate/activist in fighting for the rights of people in the chronic pain community. I have led the fight as far back as 2007, in spreading awareness, doing fundraisers, leading several online support groups & then being certified & leading “in-person” chronic pain support groups as well. I’m certified in pediatric RSD/CRPS, as well as being the Social media assistant for RSDSA. I’m a freelance writer with a blog (this one, @tearsoftruth.com) that has been nominated twice for “Best In show- blog by WEGO Health Awards. I was invited by IDA ( Invisible disabilities Association) to do & ultimately did a featured video on their “Invisible No More” YouTube channel. In 2016,’17 & ’18, I had 42 articles published. I was one of the many advocates/Drs/nurses etc., who helped edit & sign the letter to Brandeis University, demanding that Andrew Kolodny be fired for his leading role in the torture & deaths of multiple chronic pain patients (due to forced tapering & the 2016 CDC Guidelines).

Lastly, I was awarded the “US Pain Ambassador of the Year Award” in 2016. Afterwards, I was asked to be on the USPF Board of Directors (*a volunteer position which I accepted & later resigned after only 8 months. If you want to read more about that, visit: Why I resigned from the US Pain Foundation).

There’s more, but you get the idea. Sadly, since last Summer, 2018, I had my LA/ER pain medication forcibly & quickly tapered between July 22 –September 1st, 2018. I’d been doing reasonably well on a stable dose for 14 years. Since then I can often be found in my “Lazy boy” type of recliner, approximately 16 hours per day. I continue to do my best with my online support groups and I continue to fight for us via my blog/writing, support groups, mentoring for RSDSA, Social media Support for RSDSA & Deaf/HoH communications Director for CIAAG. I try to support everyone and stay out of any drama. I’m doing all that I can do at this point in time.

This is inhumane and torturous for the USA to be treating their citizens this way! Someone please help us!

Here’s the letter that I wrote to the Human Rights Watch group, run by Kerry Kennedy:

Dear Ms. Kennedy 

I’m writing to you today because I know that you help people who’ve had their human rights violated. I represent only one out of 100 million people in the chronic pain community. Out of that number, there are an estimated 26 million of us who urgently need your help.  Many people in the United States of America are  dealing with horrific pain on a daily basis.  I stand along with them  & implore you to help put an end to the violation of human rights that is taking place. 

The CDC, DEA and “Big Brother” Pharma companies are “hurting” the American chronic pain Community. We are losing access to medically necessary medications that enable us to live some semblance of a life. 

We are and have been losing access to our pain relieving medications since the implementation of 2016 CDC Guidelines.  We are  being “lumped together” with illicit drug users and addicts. Every time a celebrity dies of an overdose, they blame the pain meds as the cause of death. But really it’s the misuse and abuse of pain medications along with the use of recreational street drugs. 

A Dr. should not be afraid to prescribe Opioid pain medications to their patients because of repercussions from the CDC or DEA. But our pain Physicians are leaving in droves because of them & the 2016 CDC Guidelines. 

The  “Opioid epidemic” is about illegal/illicit fentanyl brought here from Mexico & China. It’s not about us, the 100 million chronic pain patients in the USA. Only 1% of legitimate chronic pain patients who are legitimately prescribed opioids, for high amounts of pain, ever become addicted. It’s as though our country is now torturing and punishing people for being ill.

Ms. Kennedy, we are not addicts and we are not “addicted”.  A person can be “dependent” on a medication and not be addicted! They are two very different situations. We are not addicted to our medications and we do not get cravings nor do we get “high” from them. An addict seeks out their “drug of choice” at any cost.  They look forward to taking them because of the “high” they get. A legitimate chronic pain patient who’s done well for years on a stable dose of opioid pain medication, doesn’t get any sort of “high”.  We also take our medications responsibly.  We get some relief and reprieve from the daily chronic pain that we live with. 

Please help us get back the physician / patient relationship, without interference from Pharmacy’s, insurers, the government and politics.  Please help us to keep our Drs in charge. It should be the decision between patient/physician to choose what is necessary and best for our pain control. They went to medical school and the government did not.

Many pain management Dr’s are leaving the practices they’ve built and the profession they’ve worked hard at, to achieve. They’re  afraid because they are being wrongly targeted by the DEA . They aren’t free to prescribe medications that help to relieve pain anymore. 

People in the USA in 2019 are being tortured and hurt by this on a daily basis. Just yesterday, I read the story of a 94-year-old woman who shattered her kneecap and was taken to the hospital emergency room. They immobilized her knee and sent her home without any pain control at all. Can you even imagine shattering your kneecap and not getting any thing to help with a torturous pain like that?
Ms. Kennedy, please help us? I understand there are people who die from overdoses. But they are a totally separate group of people who need a different kind of help. It shouldn’t be at the expense of an entire separate community of citizens. People In pain are being taken off of their Opioid pain medication during one visit to the Dr’s office. Often it’s a Dr. that they’ve gone to for years and they’d been living some semblance of a life while on a regimen of medication for pain control. But because of “fear”, Dr’s are taking away the little bit of life that some of us have left. 

I also don’t believe that anyone should be FORCED to have an invasive surgery in their spine or anywhere for that matter; when an inexpensive & safe pill, with little side effects can help so much. 

I implore you to help the estimated 26 million chronic pain patients in the USA, who are “dependent” on opioids for pain control & who are diligent and take these medications responsibly. Help us to get back the freedom of choice. Get us back to the pain management medication regimens that are life sustaining for us with more tolerable pain levels.

Please read my letter and talk to me if you’d like. We need you to understand that we are “chronic pain patients” and not “addicts”! We are just real people living with unfortunate circumstances & high pain illnesses. Please help us to receive the medications that give us some semblance of a life for ourselves & our families.

Sincerely,

Suzanne B. Stewart
Recipient of U.S. Pain Ambassador of the Year Award‘16, Mentor & Social Media Coordinator @RSDSA, freelance writer, Blogger/Blog “Tears Of Truth” @tearsoftruth.com, Patient leader WEGO Health, HoH/ASL, Director of communications for Deaf/HoH for CIAAG, patient advocate for Deaf/HoH
“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars” ~Khalil Gibran~
DISCLAIMER: The contentI is not intended to be a substitute for professional medical advice, diagnosis, or treatment. We do not recommend the self-management of health problems. We can not and do not give you medical advice. The information in this e mail should not be considered complete. Information obtained in this e mail is not exhaustive and does not cover all diseases, ailments, physical conditions or their treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this e mail. If you think you may have a medical emergency, call your doctor or 911 immediately. I do not represent to be an authority but I’m just helping pass information from other organizations, advocates and or websites.

Frontal lobotomy for the relief of intractable pain • CERGM


Hello Luvs,

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

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

9 Pieces of ‘Health Advice’ It’s OK To Ignore if you Have Chronic Illness


Hello Luvs,

Well, I’m sure that you all have those friends &/or that family member who always has “advice” for your chronic illness? Don’t you just want to make them feel how you feel for about 30 minutes, at times? Let them feel the pain and suffer as you do, just for awhile? Better yet, don’t tell them that it’s only for 30 minutes! Let them think they’ll feel that way forever; for life! No end in sight just like you(us) and no cure! What if they thought they had to live with it forever? Do you think they’d be changed?

I get so tired of people giving advice, when they have absolutely no idea what it’s like to look pretty much “fine” on the outside; while feeling so much pain & fatigue.

9 Pieces of ‘Health Advice’ It’s OK to Ignore If You Have a Chronic Illness https://themighty.com/2018/12/bad-health-advice-chronic-illness/

Are Imposters Preying On Unsuspecting Patients In Our Pain Community Again?


Hello Luvs

Once again I’m so sorry to be giving the news regarding the possibility of imposters (or at the very least, these are persons who don’t have the best interest of our pain community in their hearts) infiltrating our pain community. Last I wrote about this subject, was a month ago, inside of several groups, to warn them! It was regarding the notorious “Kate Ashworth” aka “fake RSD/CRPS guru”(see article link below). She was back again; hurting unknowing chronic pain patients! Those affected, just happened to be persons who also live with the unbearable pain of RSD/CRPS. (To find out more about RSD/CRPS, please visit: For Real Facts & Information About RSD/CRPS, follow this link to RSDSA Home Page (Reflex Sympathetic Dystrophy Syndrome Association)

*(To Read the article about the imposter,“Kate Ashworth”,who recently came back a second time & infiltrated the RSD/CRPS community; visit this link: This is the Link to the article about Kate Ashworth, an Imposter to the Chronic Pain Community) “Strangers Among Us”

On Tuesday night 3-6-29; I saw a message from a long time RSD/CRPS friend on Facebook. I saw the message very late in middle of the night and it was written by Mary Mattio, in a “closed & secret” Facebook support Group for RSD/CRPS. Posting with permission, this is what I read at approximately 11:30 pm:

I’ll show you everything that was written underneath. But first I want to say “thank you” to Mary Mattio for posting about this to the Facebook group, . When digging deeper, I’d like to say “thank you” also to Tracey Tipton-Morales & Marisa Gravett for their “detective work”, involvement and postings. But we need to all give a special thanks to Sarah Lesley, for being the first to figure out all of this mess which I’m going to try to explain. So thank you to everyone who’s been involved in getting the word out, sharing, reporting and blocking these alleged fakes.(I have to say “alleged” but I believe it is true, with my whole heart!)

This was the full post shared from Sarah Lesley & Marisa Gravett:

⚠️ ATTENTION CHRONIC PAIN COMMUNITY⚠️

* Shared from Sarah Lesley & Marisa Gravett *

Okay CRPS Community: If you are in the group “RSD/CRPS and Neuropathic Pain Syndrome” beware… This was brought to my attention this morning. One of the admins actually works for a treatment center that focuses on getting pain patients to stop talking about their pain, basically making it seem like it’s all in our heads. I just saw a YouTube video shared in a post on that page this morning of him doing a presentation about his research and recovery centers and how it focuses on getting pain patients to stop focusing on their pain and to be able to return to be active members of society again. Basically making it sound like we don’t really need medical care, treatment etc…

I am infuriated at some of the things that I have seen and found out. We believe that many of the admins are either fake or using fake names and or involved in depth with Dr. Rand and his treatment centers as one of his treatment centers is referred to as the Bay Area and the last name of many of the admins is Bay…

Think of this as a conspiracy theory if you wish but I have just seen with my own eyes a YouTube video by Dr. Rand speaking about these treatment centers and it is very clear that this group and possibly other groups that we may all be involved in with similar admins, maybe using the information that we give against us as research, or to turn it in to help with their research or so-called research.

It is clear that this group is not created to help others. Many of the members I am sure do their best to help many people in this group to share information to ask questions and I do not blame or think any of the members are involved except for the ones that are listed as admins.

If you are in this group you are advised to check it out for yourself and if you feel the same way to delete the posts that you have in that page as well as get out of it. Also I would advise all of us to take a better look at who the admins are in many of our groups if we do not know or have never checked it out. We need to do all we can to look out for ourselves and our fellow CRPS Warriors and if there is any chance that this group is not on the up-and-up or could be using our information for any purpose other than to help each other live a life with this horrendous evil monster of a disease, I want no part of it and I do not want any of you to as well.

I was originally going to tag everybody in the post within the group that I’m friends with but there are so many of you I ran out of room on a piece of paper writing your names. I’ll be tagging as many as it will allow. Please if you are a CRPS Warrior check out this group check out the information for yourself and be careful out there.

I urge you all to please report all the fake profiles & all the groups that the fake profiles created & are Admins of, it’s the only way we can get them shut down. This post is now public, please feel free to share. Marisa Gravett has additional information on this as well.

Look up Jerrod Rand on YouTube if you want to see for yourself. Be careful out their Warriors. We are finding way too many wolves in sheeps clothing within our community.

** BELOW ARE SCREENSHOTS OF THE ADMINS & A FEW OF THE GROUPS & PAGES THAT ARE LINKED TO THEM **

**BEFORE I REPORTED & BLOCKED THIS “JERROLD RAND” facebook account (whether someone is using his name, or it is truly this person; we don’t know yet?)- I FOUND THIS POST VERY INTERESTING & TELLING OF PROBLEMS ON/WITH THAT PAGE:

I wanted to add that we all need to be vigilant, but we cannot allow ourselves to overreact or get too upset over this. Though it is very upsetting, our main goal is to stay calm and get the “word out” to the RSD/CRPS & Pain Communities. If everyone who reads this can go and report each of these groups and the 5 accounts that appear to be for the sole purpose of “pushing” these 30 or so “support groups” on unknowing people in pain! If we all can do that, Facebook will be able to shut them down!

Please understand that I’m in no way condemning those who have joined these groups. It’s not their fault. It’s the admins (whoever they truly are??) of those groups who are to blame. They are violating our community and others. Once again, people had recently been asked to send in photos of their Rsd/CRPS affected limbs. People, please don’t send your photos to anyone who asks. If you’re friends with someone who you know & feel comfortable with; and you want to share a photo; go for it! But please, just a bit of advice from my heart: “please don’t send your personal medical photos to anyone who requests them from you”. Also, PLEASE don’t take any medical advice from anyone online. They could be impersonating anyone! Only take therapeutic, medical advice from your own personal medical professionals. The ones who know you and your personal mecical history.

Any questions, please don’t hesitate to ask: Sarah Lesley, Mary Mattio, Marisa Gravett, Tracey Tipton-Morales or you can ask me & I’ll do my best to get the right answers for you.

Please share this public blog post everywhere that you can. We need to look out form& take care of each other! Thank you for your time!

Lastly, here’s a link to a video by Jerrold Rand who seems to be the ringleader:

1: “Dr” J. Rand on Opiate use” at his Youtube channel called “Bay Recovery”

2: “Dr” J. Rand talks about Methadone on his Youtube channel

3: THIS ONE MAY UPSET YOU- if you’re fighting for your life-saving pain medication right now (just forewarning you): “Dr.” J. Rand’s patient talking about chronic pain etc. (On Youtube)

I hope that you will all just take this information and do what’s in your heart. I cannot honestly write here, that I know anything “for sure” about this quack! I’m writing an opinion piece (because we are all allowed to have our own personal feelings and opinions). But my opinion is that this guy and his 30+ Facebook groups, fake admins (possibly?) and several fake accounts, are frauds! I’m just sayin’—–check the one photo screenshot above especially!! The one that shows that his license was revoked in 2012!! Then look at the News story underneath that one! About him self-prescribing sleeping pills etc! Also, it appears from that News piece, that he somehow may have been responsible for a women’s death??

Sorry for the bad news! But I love you all with my whole heart & soul. I feel an inner tug at my heart to protect you in any way possible.

Anti-Opioid Zealots


I opened up facebook to see that a person who calls herself an “investigative reporter”; doesn’t actually have a clue about the subject for which she stands upon her soapbox and spews hate and prejudice! Her hate speeches, disdain, lack of knowledge & empathy for the chronic pain community are outrageous. She also states that she’s a pastors wife! Which in a stereotypical sense, should make her more kind, loving & empathetic (on the contrary). I’m definitely not a cold or callous person. I deeply care about others & especially my fellow chronic pain patients. But I pity her in her for the way she’s unable to get help for her grief. I’m terribly and deeply sorry for anyone who’s lost someone that they love to any kind of addiction. She lost an adult child to overdose of prescription opioids. She’s made it her fight in life now, to rid the world of the “evil narcotics”. Do you think she knows that the statistics prove that only 1-3% of prescription opioids ever result in overdose?Check out this new report from the Cato Institute

It’s the illicit fentanyl and Cara-fentanyl from Mexico & China that are the problem! It’s not legitimate chronic pain patients with legitimate prescriptions from licensed pain management physicians that are to blame for this manufactured “opioid crisis”. The opioids are only a tool. Just as guns, kitchen knives and cars are all tools. These tools don’t kill people any more than opioids “kill people”! There’s a genetic link to addiction. There’s also a distinct difference between addiction and being dependent physiologically to a medication that one has taken for several years to decades. With addiction, the addict must make a conscious decision to get the meds, tell lies, keeps secrets and physically take the increasing amounts of drugs to give them a “high” or a euphoric feeling! They ruminate look at the clock, just waiting for their next fix! Chronic pain patients, for the most part; were never given the “luxury” of a choice! Most are people living the rest of their lives with high amounts of ongoing daily chronic pain; with no end in sight! The average chronic Pain patient, is living a life sentence in agony through no fault of their own! Usually an unsuccessful surgery, freak accident or a motor vehicle accident. Today we have an “under & untreated pain crisis”, with suicides from pain mounting in numbers weekly. A very knowledgeable and vocal physician and chronic pain patient advocate, Dr Thomas Kline, MD, has kept a record of these rising number of suicides.

Chronic pain is in fact a disease; as explained in this article in Health Magazine (February 2016) and in many other news articles. It’s Origin is Neurological. Scientists now believe that one cause of chronic pain is a dysfunction of the nervous system & includes the misfiring of nerve signals long after an accident or injury. According to this article: http://amp.timeinc.net/health/health/condition-article/0,,20187942,00.html, Neurons (cells in the nervous system that communicate with each other) become overexcited and keep firing, even after the original cause (injury or illness, in some cases) has long since passed. The person receives persistent pain signals.

If I may be so bold as to speak for the majority of the chronic pain community, we are not insensitive or calloused persons. In fact, I’ve never met a more caring, empathetic group of citizens. We care very much that people have lost their family members to the disease of addiction. We grieve for their loss of lives and love.

But we are grieving too! We have had so many deaths due to either suicide, untreated or under treated chronic pain since the CDC Guidelines appeared in 2016. Read this: Article by Dr Jeffrey Singer MD, Cato Institute. Dr Singer states that, “patients have become the civilian casualties of the misguided policies addressing the opioid crisis.” These “guidelines”have somehow become “law” to the majority of anti-opioid zealots; along with many physicians and pharmacists!

I wrote to the CDC and if you look at their response to my letter here(*& in photo below) A Response letter sent to me, from Exec Secretary of CDC, they state that “the CDC Guidelines are not meant to be rule, regulation or law. It’s not intended to deny access to opioid pain medications as an option for pain management”. I also agree that nobody should be denied pain care. That these are just supposed to be nothing more than guidelines. They weren’t meant to become the Law!!

Now there are admissions of the over fabrication of statistics by the CDC. Also, the AMA has come out with their own resolutions to these Draconian CDC Guidelines. You can find what they’ve written in this article by The Pain News Network https://www.painnewsnetwork.org/stories/2018/11/14/ama-calls-for-misapplication-of-cdc-opioid-guideline-to-end

This person calls herself an investigative reporter. People like her feel that because they have an audience & a platform; that they can stand on their soapbox and spew misinformation and hatred due to unresolved feelings of loss and grief! But they are just plain wrong!

When I opened up Facebook to try and reason with her. To attempt to discuss and/or debate like adults; I found that her page was blocked from any comments or discussions. That’s when you know you’re on the side of light and good. When you’re willing to discuss hard subjects in a civilized manner. But when discussions are cut out and blocked; that’s when we know that a person just wants to pontificate and spew hate!

Lastly, I wanted to add that this person should be in violation of the ADA, for her written comments regarding Cindy Steinberg. She made derogatory remarks about Cindy, a very well known pain patient advocate and friend of mine! I don’t think she is allowed to say the things that she said about Cindy supposedly being “theatrical” because she used a cot in between her statements regarding the opioid hysteria. This reporter even went so far as to say that Cindy was “laying in her her cot while testifying to Congress.”! Gee, I saw the video and it sure appears that she’s sitting in a seat discussing the situation in an intelligent manner. Here is part of Cindy Steinberg’s message:

“In the near term, we can and must restore balance to opioid prescribing with depoliticized, rational and cleareyed recognition of the risks and benefits of these medications,” she said, according to her prepared remarks. “In the long term, we must invest in the discovery of new, effective, and safer options for people living with pain.”

What’s wrong with that message? How could any sane person find something incorrect or one-sided, with that direct quote”. On the contrary, Cindy spoke intelligently! She discussed ways to help end opioid hysteria and the under-treated/untreated pain crisis today!

Lastly, if this one-sided, so called “investigative reporter”, would share an ounce of the truth with her readers; she’d have not lied about Cindy “laying in a cot while testifying to Congress”. Cindy, as you can see from the video of her testimony, is sitting upright in a chair as she speaks to Congress. But would there have been a problem if she had been in a cot while testifying? NBC & this reporter could very well be violating the Americans with Disabilities Act? In what world is mocking a disabled person OK? Isn’t there an ADA law that calls for accommodating persons with a disability?

Below is a photo from a portion of the return response letter that I received from the Executive Secretary of the CDC:

Here are some great resources for those who are skeptical of my words here today:

  • ALSO: Here are a couple of articles written by the person being referred to in my article today:
  • Lastly, I just want to add (so that I an not accused of being a “mouthpiece” for the USPF) that I resigned from the US Pain Foundation in September 2018; after only 8 months as a Board Member & 3 1/2 years as a volunteer Ambassador. I was planning on staying to try and help them rebuild. But the moment that I felt my integrity was challenged, I resigned.
  • AMA Guidelines


    Hello Luvs,

    I wanted to make sure that you all have heard about the new AMA Resolutions, regarding the CDC Guidelines for opioid prescribing? The guidelines that have been taken as the “word and the law” by many pain management physicians and others.

    Those CDC Guidelines are and were supposed to be voluntary and just be what they’re called, “Guidelines”. Doctors, pharmacists and government officials have been turning them into “law”. Many people in the chronic pain community have been negatively affected, including me!

    I wanted to post a copy of just the AMA resolutions that pertain to us; the chronic pain community. Below I will have that available for you to print. You should take it with you to each Dr appointment & especially your pain physician. But first let me give you the link to the full AMA Resolutions here: The AMA Resolutions for Chronic Pain Patients

    *(The above link is working again)

    ***Also, I’ve posted just the AMA Resolutions pertaining to the chronic pain patients: Please be sure to print out and take to each of your physicians & especially your pain Physician:

    Sending Hope, Light & Peace!

    Suzanne

    Letter To Brandeis University


     The letter below was written by Richard “Red” Lawhern & signed by many Physicians, Pharmacists, Nurses and pain patients/Advocates (Including Me). It was sent approximately October 2017. Here’s a full article from the Pain News Network about it: https://www.painnewsnetwork.org/stories/2017/10/3/patient-advocates-call-on-brandeis-to-fire-kolodny and below is the letter in full, and which I signed:(my name is in bold print just here to share with you)….sadly, it didn’t do anything, but seemed to give Kolodny more resolve. We need to keep fighting this! We cannot give up. I’ve lost my LA/ER pain meds now and I’m not stopping the fight until my last breath. Here’s the letter in full:

    To:  Ronald D. Liebowitz, President, Brandeis University [president@brandeis.edu]

           Nancy Winship, Chief Philanthropic Adviser to the President, Brandeis University 

    winship@brandeis.edu  

           Constance Horgan, Founding Director, Brandeis University Institute for Behavioral Health,  [horgan@brandeis.edu]

            David Weil, Dean, The Heller School of Social Policy and Manageme  [davweil@brandeis.edu]

           Mark Allen Surchin, President, Brandeis Alumni Association msurchin@goodmans.ca

        To the Administration of Brandeis University,

    I write as corresponding secretary of the Opioid Policy Correspondents List.  We are a group of medical professionals, healthcare writers, social media group moderators, knowledgeable chronic pain patients and family members.  This group of volunteers receives no funding from any source.

    We call upon the Opioid Research Collaborative and Brandeis University to immediately reevaluate your relationship with Dr. Andrew Kolodny, MD and to consider termination of his relationship with Brandeis.  The basis of our request is as follows:

       1.  Many of us are patients dealing with medical disorders thatcause levels of intractable pain among the most severe known to medical practice.  Others are physicians and nurses who have treated such disorders, most of which are incurable at the present state of medical knowledge.  Several of us have published work on this area of public policy and are highly conversant with the practice standards issues involved.

       2.  For millions of Americans, prescription opioid analgesic medications are a central element of patient pain management plans.  Without compassionate care employing these analgesics, many tens (perhaps hundreds) of thousands of patients will lapse into agony and disability.  Some will very likely die. We have each been witness already to multiple unnecessary deaths reported in social media and in articles by medical professionals. 

       3.  Chronic pain patients are increasingly being denied access to these essential life supports — in large measure due to the actions and advocacy of Dr. Andrew Kolodny and like-minded others. 

       4.  Because of genetic polymorphism, many pain patients are “hyper metabolizers” or “poor metabolizers” of one or more opioid medications.  Opioids are broken down in their livers at much faster or slower rates than in average patients.  To manage their pain, many require much higher doses than the 90 Morphine Milligram Equivalent Daily Dose (MMEDD) threshold of risk that is asserted in the March 2016 CDC opioid prescription guidelines.  No provision is made in the guidelines for hundreds of thousands of such people.  Based on his published work, Dr. Kolodny seems to ignore that such people even exist, despite the well established body of science thatdetails their conditions.

       5.  Dr. Kolodny has been prominent in a National campaign to deny chronic pain patients even minimal management of their pain.  His actions are directed toward forcing draconian restrictions or outright withdrawal of this class of medications from medical practice. He calls for forced tapering of patients formerly prescribed opioids. Policy positions for which he advocates are leading to the deaths of hundreds of chronic pain patients by suicide or pain-related heart failure and medical collapse — also incontestable facts that Kolodny has publicly denied.

       6.  Dr. Kolodny was a central figure in panels that wrote the 2016 CDC opioid guidelines.  The resulting document is widely understood by medical professionals to be profoundly flawed and actively dangerous.  The guidelines incorporate gross errors, anti-opioid bias, cherry-picking of published findings to support a political agenda, and omission of pertinent research thatcontradicts guideline recommendations.  As a consequence of these distortions and of a related US DEA witch hunt against pain doctors, large numbers of physicians are leaving pain management and hundreds of thousands of patients are being deserted and abused across America.

       7.  Dr. Kolodny may also have failed to acknowledge financial and professional conflicts of interest incompatible with the work he was hired to perform at Brandeis. He helped to found and runPhysicians for Responsible Opioid Prescribing (PROP), an anti-opioid lobbying group.  This organization has several times petitioned the FDA to restrict opioids (many aspects of PROP petitions have been outright rejected as unfounded).   He has also been Chief Medical Officer for Phoenix House, a chain of addiction treatment centers which has been challenged over deaths among those they have treated and released without follow-up or community support.   He has represented the interests of insurance industry groups that seek to deny coverage to chronic pain patients because of associated expenses. None of these affiliations is compatible with balanced or science-based positions on opioid policy.

       8. Some who have described Dr. Kolodny in public press have characterized him as “controversial”.  This designation is entirely too kind.  Among people in pain, he is one of the most polarizing and hated figures in medicine.  His public statements are widely rejected by those whom they directly affect.

       9.  Although Dr. Kolodny has a work history in public health and addiction psychiatry, he is neither qualified nor Board Certified in pain management — a closely related field that has been profoundly and negatively impacted by his assertions concerning public policy.  From his published articles and interviews, it is clear to many readers that he knows or cares little about chronic pain patients and their treatment.  A lot of what he thinks he knows about addiction is unsupported or contradicted by medical evidence and by the lived experience of many thousands of patients.    

      10.  In our view and those of many people whom he has harmed, Dr. Kolodny makes no positive contribution to the work or reputation of Brandeis or its research centers.  To the contrary, we believe it is ethically and morally imperative that he be dismissed immediately from the University, before his presence further damages both your reputation and your financial endowments.  We urge you to engage staff in a due-diligence review of his published positions and advocacy, to verify the concerns we have offered above.  

    You surely cannot align yourselves with someone who has made the following kinds of public statements:

    “We lack evidence that opioids help chronic pain. Evidence is mounting that tapering improves pain and function.”   [From a Tweet by Dr. Kolodny addressing his statements in a CNN article at http://www.cnn.com/2017/07/17/health/chronic-pain-opioid-tapering-study/index.html ]

    “When we talk about opioid pain medications, drugs like hydrocodone and oxycodone, we’re talking about drugs that are made from opium the same way that heroin is made from opium.  The effect that hydrocodone and oxycodone produce in the brain are indistinguishable from the effects that are produced by heroin.  [When] We talk about opioid pain medicines we are essentially talking about heroin pills…”  Summer 2017 issue of Heller Magazine

    “Prescribing opioids for chronic pain is pennywise and pound foolish….” …”overprescribing of opioids is associated with sharp increases in the prevalence of opioid addiction, a chronic disease that is expensive to treat and strains the economy in many other ways. Some of these costs were nicely outlined in a recent New York Times article called “The Soaring Cost of the Opioid Economy.” 

    “We’re just talking about the economic costs but we also have to consider human costs. By prescribing opioids to chronic pain patients, a treatment that’s unlikely to work and may even worsen pain, the medical community is undertreating pain and failing in its responsibility to ease suffering. And if the pain patient becomes opioid addicted, they’ll be left with a devastating chronic disease that may kill them. Of course, there’s also the collateral suffering experienced by friends and family members, especially when an opioid addicted individual dies from an overdose.” https://www.centerforhealthjournalism.org/2013/10/24/qa-andrew-kolodny-busting-pain-medicine-myths-0

     

    “Outside of palliative care, dangerously high doses should be reduced even if patient refuses.  Where exactly is this done in a risky way?” wrote Andrew Kolodny, MD, Executive Director of Physicians for Responsible Opioid Prescribing (PROP).  “I’m asking you to point to a specific clinic or health system that is forcing tapers in a risky fashion. Where is this happening?”   

    https://www.painnewsnetwork.org/stories/2017/7/20/prop-founder-calls-for-forced-opioid-tapering

     

     

     

    Among many published articles that contradict positions advocated by Dr. Kolodny are the following:

    Neat, Plausible, and Generally Wrong: A Response to the CDC Recommendations for Chronic Opioid Use, by Stephen A. Martin, MD, EdM;  Ruth A. Potee, MD, DABAM; and  Andrew Lazris, MD.  https://medium.com/@stmartin/neat-plausible-and-generally-wrong-a-response-to-the-cdc-recommendations-for-chronic-opioid-use-5c9d9d319f71

    Opioid Abuse in Chronic Pain — Misconceptions and Mitigation Strategies, Nora D. Volkow, MD, and A. Thomas McLellan, Ph.D.  N Engl J Med 2016; 374:1253-1263, March 31, 2016.

    The MEDD myth: the impact of pseudoscience on pain research and prescribing-guideline development  Jeffrey Fudin, Jacqueline Pratt Cleary, and Michael E Schatman,  J Pain Res. 2016; 9: 153–156. Reprint at Medscape:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809343/

    An Opioid Quality Metric Based on Dose Alone? 80 Professionals Respond to NCQA  Stefan Kertesz, MD, MSc. Medium, March 22, 2017. https://medium.com/@StefanKertesz/an-opioid-quality-metric-based-on-dose-alone-80-professionals-respond-to-ncqa-6f9fbaa2338

    Pain Wars, Suzanne Stewart, Opinion, National Pain Report, September 20, 2017,  http://nationalpainreport.com/the-pain-wars-8834381.html

    Let’s Stop the Hysterical Rhetoric about the Opioid Crisis, Jeffrey A Singer, MD, Cato Institute, August 31, 2017. https://www.cato.org/publications/commentary/lets-stop-hysterical-rhetoric-about-opioid-crisis

    Even the most basic due diligence will find many more substantive contradictions to Dr. Kolodny’s public statements. 

    This issue is not going to go away.  Brandeis needs to act promptly and decisively to preserve your academic reputation,lest you provide a forum for biased science or fraud.  We look forward to your confirmation that action is underway to separate Dr. Kolodny from your institution.  

    Note:  you may also receive amplifying letters from others among our membership.  

    All of the following have authorized their do-signatures here:

     

    Richard A. Lawhern, Ph.D., Healthcare author and 20-year patient advocate
    Corresponding Secretary, Opioid Policy Correspondents List

     

    Dr. Forest Tennant, Editor Emeritus “Practical Pain Management”

     

    Dr. Aimee Chagnon, MD

     

    Dr. Steven R. Henson, MD

     

    Dr. Mark Ibsen, MD

     

    Steven Ariens, P.D., R.Ph. Owner/Operator “Pharmacist Steve Blog”

     

    Thomas N. Dikel, Ph.D., Developmental Psychopathologist; Pediatric Neuropsychologist; Adult and Child Clinical Forensic Psychologist.

     

    Jon Aumann, certified in Community Based Participatory Research and as Biomedical Research Investigator

     

    Kristie Walters, RN, medically retired as a chronic pain patient

     

    Jennifer Barnhouse, LPN, medically retired as a chronic pain patient

     

    Julianna Hodgman, RN, Chronic Pain Patient

    Michelle Wagner Talley MSRC, LPC, BCPC

     

    Patricia Davidson, medically retired EMT, 12 year chronic pain patient

     

    Duane Pool, Former Registered Nurse, Technical Writer, Social Media Consultant

     

    Kristen Ogden, Co-founder Families for Intractable Pain Relief

     

    Louis Ogden, chronic pain patient and advocate

     

    Sherry Sherman, CRNP, MSN, BSN, CPC, CCS, CCA, CPPM, US Pain Ambassador,            NAPW 2014 Woman of the Year 

    Tammi Hale, surviving spouse of a pain patient suicide

     

    Angelika Byczkowski, chronic pain patient, advocate, writer, and blogger

     

    Donna Corley, Co-director ASAP – Arachnoiditis Society for Awareness and Prevention  

     

    Denise R. Molohon, LTCP, CLTC, chronic pain patient, patient advocate: ASAP, Arachnoiditis Society for Awareness & Prevention

     

    Susan J Elliott, chronic pain patient

     

    Duff Lambros, chronic pain patient stable on opioids over 20-years of treatment 

     

    Suzanne Stewart, chronic pain patient, patient health advocate, CRPS Mentor, blogger & freelance writer (>30 articles in National Pain Report).

    Mark J. Zobrowski, chronic pain patient and advocate

     

    Spencer Dunstan: chronic pain patient and advocate

     

    Sandie Hamilton, Community Care Coordinator, Hope Outreach Ministries

     

    Timothy E. Mason, BA Chemistry, Research Chemist

     

    Kevin Mooney, chronic pain patient

     

    Michelle Ziemba, Writer and Editor, Chronic Pain Patient: Trigeminal Neuralgia (13.5 years),

     

    Robert W. Schubring, BA, U.S. Co-Founder, GivePainAVoice

     

    Gary Snook, chronic pain patient

     

    Shirley Wallace, chronic pain patient

     

    Sally Balsamo, chronic pain patient

     

    Nancy Calahan, chronic fibromyalgia patient, prescribed Tramadol

     

    Caryn Abrams, chronic pain patient

     

    Sandy Hamilton, chronic pain patient

    Lisa Hess, chronic pain patient

     

    Steven Rock, chronic pain patient

     

    Tootie Welker, MHS Rehabilitation Counseling

     

    Randie Parker, chronic pain patient (diagnosed hyper-metabolizer)

    Robert D. Rose, Moderator “Veterans and Americans for Equality in Healthcare” 

    Lana Kirby, chronic pain advocate and activist 

    Greg Downey, medically retired machinist and chronic pain patient

    Shirley Wallace, chronic pain patient

    Anne Fuqua, BSN, pain patient / patient advocate

    Roberta Glick, chronic pain patient, social worker, advocate

    Heidi Schlossberg, chronic pain patient

    Christine Falk, chronic pain patient (fibromyalgia, sarcoidosis, rheumatoid arthritis, failed back surgery)

    Audrey Liebl, owner of “Fibrom-L”, former EMT/firefighter, chronic pain patient and advocate since 1998

    Christine Smith, B.A. Social Welfare, M.A. Rehabilitation Counseling, CVE, retired. disabled. chronic pain patient 

    Kathy Kempken, chronic pain patient 14 years (trigeminal neuropathic craniofacial pain syndrome).  Fifteen years professional experience in safety, health and environmental affairs for The Boeing Company

     

    Kimberly Miller, Director of Advocacy, KentuckianaFibromyalgia Support Group 

     

    Stacey Milligan, chronic intractable pain patient 

    Mary A Rooney, LCSW, chronic pain patient.

    Theresa Boehm, chronic pain advocate

    Rose Bigham, disabled chronic pain patient 

    Elana Trefzer, chronic pain patient

    Kena Gottier, RN, CMT-US Group Administrator, Chronic Pain Patient

    Calvin Kramer, chronic pain patient

    Richard L Martin,BSPharm, chronic pain advocate

    David Becker, chronic pain advocate

    Cathy Kean, chronic pain patient, writer, advocate