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

 

 

Pain, Politics, Suboxone & Bupenorphrine


Please watch this informational video about the a patient removed from the only medication that helped lower pain. Also, much information regarding the dangers of Suboxone /Bupenorphrine.

Pain, politics & Suboxone/Bupenorphrine

Pain Warriors- The Movie


Hello Luvs,

I want you to really take a look at this post, please? I want you to “meet”, Tina Petrova. She is a fellow pain Warrior and a colleague of mine. She is not only a friend; but a friend/colleague in advocacy and awareness of chronic pain and people who live with chronic pain illnesses.

Honestly, Tina Petrova is an award winning film maker, a motivational speaker & chronic pain activist. This movie is about the real deal, chronic pain and everything that goes along with it! This movie has got to catch the attention of legislators and others who do not yet understand what it’s like to live with daily, unrelenting chronic pain.

“Pain Warriors- The Movie”, WILL catch the attention of anyone watching. But especially those who need to change the way they think regarding intractable pain and invisible disabilities. We need your help to donate and /or spread this crowd funding campaign. Please help to get more people involved in supporting this awesome film. The crowdfunding campaign will go through mid-September 2018.

Here’s the link to the Seed & spark crowdfunding campaign for “Pain Warriors- The Movie”!

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Link to the Trailer: Pain Warriors- The Movie

*Pain Warriors – The Movie

Needs Your Help! Please Help Support This Beautiful Project!

Inclusion Statement

Our story brings to light a deadly suppression of facts & figures. Chronic Pain does not discriminate against age, sex, or race; suicides in all groups due to under managed pain are on the rise. We are, all of us, only one car accident or one surgery away – from a life of chronic pain.

About The Project

PAIN WARRIORS ~ sets out to examine the invisible crisis of Chronic Pain in North America, and its devastating toll on society. Without proper and timely education of the masses this growing concern can and will reach a tipping point, beyond which there is no return.

Society’s lack of public information regarding Chronic Pain, has sadly forced this disease and its sufferers underground.

Not only are many denied adequate treatment , they are often looked upon by society as a whole as outcasts. We are , all of us, only one cancer or one car accident away from a life of chronic pain. As we age the numbers of chronic pain patients will only grow exponentially.

We intend to bring to light a deadly suppression of facts and figures. Without education and awareness, there can be no reform.

Compelling interviews showcase a broad cross section of pain patients, their loved ones and the doctors that treat them across North America. We share intimate, courageous and heart breaking 1st hand stories from pain patients in the trenches- the ongoing political and social issues they face and how they struggle to cope , just to get through another day.

Pain Warriors- The Movie

In recent months, several American pain specialists have been targeted by the DEA and currently face loss of license and potential incarceration, for attempting to uphold their Hipprocratic Oath and serve the U.S. pain population. The lines between “pill mills” and  legitimate doctors have become blurred and in many cases, unrecognizable to the general public and society at large.

In recent decades groups including breast cancer and aids patients have banded together formally with runs marches, rallies –  telling their stories in the press.

Doing so has garnered more ambitious and imaginative solutions to treatment and health care reform. The best hope for pain patients,  is to become more vocal and active in their own pain management.

The needed response to pain, it would appear, is to encourage patients to stand up and speak up.

PAIN WARRIORS  plans to do just that – give voice to the voiceless.  #givepainavoice  #painwarriors

Pain Warriors ~ the Movie has posted an update!

Pain Warriors shines a spotlight on Pediatric Pain ~

11 Yr. old Hunter,  battles courageously with a Chronic Pain condition, using Superheroe comic book characters – to inspire him to get up and fight yet another day. Pediatric pain is one of those growing pain conditions that is under- discussed and under- represented in the media.

Our new film Pain Warriors – seeks to identify and shine a spotlight on marginalized peoples and groups that have fallen through the cracks of both appropriate and timely healthcare and , societal compassion as a whole. In the pain community, we use the term” a slow death of compassion…” to denote societies overall shunning of chronic pain as a legitimate disease that steals lives, breaks hearts and destroys the very fabric of family life. There has been a deadly suppression of facts and figures for far too long. Pain Warriors  the movie ~ dives fearlessly into the muddy trenches,  where chronic pain patients & pain doctors who face a hostile regulatory environment live in apprehension, fear and suffering-  of what is to come next… live in fear and suffering.

Visit Pain Warriors ~ the Movie

Regarding Bupenorphrine – Suboxone


This information is “straight from the horses mouth”…please read this chronic pain patients horrific experience (he wrote this after reading my last blog post in one of my support groups):

Absolutely, I mean absolutely do not ever let anyone put you on Suboxone or buprenorphine – the primary component of Suboxone – when they try and shove you off of opiates because the stuff is absolute poison.

When my pain pump ran out of morphine sulfate after I lost my pain management doctor, thanks to the new CDC guidelines, I went into acute opiate withdrawal and ended up in the hospital. In the hospital they were supposed to detox me from opiates, they did not. Instead they pulled a really shitty bait and switch, and put me on Suboxone. Suboxone is extremely addictive and 10 times harder to get off of than conventional opiates, and much, much uglier.

I know this from personal experience. Getting off of Suboxone or buprenorphine – its active component – is an absolute nightmare.

For example: I can take 15 mg of hydrocodone – hydrocodone is the opiate in medications like Vicodin and Norco – per day for six months solid and I can just stop taking it, cold turkey, and I’ll feel kinda crappy for three or four days, I’m off of it, end of story.

After a single month of taking 16 mg of Suboxone per day, I have now been trying to wean myself off of it for nine weeks, every step of the way has been absolute hell, and it will take me at least another 2 to 3, possibly even four months to wean myself off of it. And then, I understand, I can expect to spend another couple of months feeling significant withdrawal symptoms even after I have stopped taking Suboxone/buprenorphine.

This has got to be one of the worst medical scams ever. I would compare using Suboxone to get people off of opiates to using whiskey to get people to stop drinking beer.

Suboxone is also hideously expensive $370, for a 30 day supply.

A 30 day supply of four Norco 10/325 per day is only $33.

If you get just straight buprenorphine – the active component of Suboxone – you can get it for about $90 for a 30 day supply.

The cost is actually the least of the worries where Suboxone/buprenorphine is concerned. If you are a longtime junkie who was been sticking a needle in your arm for years Suboxone may make it easier for you to get off the needle.

If you are a chronic pain patient who has been taking opiates for your chronic pain and they are going to cut you off of your opiates, you are far better off going cold turkey – hopefully your doctors will allow you to wean off of the opiates – and skipping the Suboxone/buprenorphine hoax because getting off of it is 10 times harder than getting off of conventional opiates, and the nightmare from hell every step of the way. It is hideously ugly.

I don’t know how to say it any plainer than this: Suboxone/buprenorphine is, in my estimation, absolute poison, and one of the worst travesties of medical mispractice ever perpetrated on the American public. it is a scam to make a pharmaceutical companies rich.

When it comes to Suboxone/buprenorphine: just say no.”

***Today I opened up Facebook to find this response regarding my article from July 31, 2018. That’s is where I discussed Suboxone, Bupenorphrine & Naloxone. Please refer to that article (July 31,2018) if you need to “fill in the blanks”, so to speak.

I thought I would add his comments here. To be fair to all of my readers, I will also post my responses. I want you to know my reactions and the words that I used to make sure that my original post is not “confusing” to anyone else.

Here are the words that he wrote underneath my article that was posted in my CRPS support group on Facebook; called “RASEforCRPS” (the letters represent the words: Reserach, Awareness, Support & Educate) (*it was also posted in other Various groups & pages) :

I’ve been safely and effectively using plain Bupenorphrine, an opioid, in the form of Butrans patch for several years! I have also used the antidepressants and have been fine with both.

Each of my docs can order it without certification or special classes. It HAS been approved by the FDA for severe pain that needs round-the-clock management.

There is a lot of different info out there and there are other medications with Bupenorphrine in them. Here is some info! Here is a pharmacy times article about this:

“Belbuca Is the newest formulation of you been or for an available as a buckle films and indicated for the management of pain requiring around -the -clock, long-term opioid treatment not adequately controlled with alternatives. This reflects the new standard labeling required of all extended-release of yours indicated for Chronic Pain.”

“Buprenex IV or IM is approved for the relief of moderate to severe pain. This formulation is also used off-label for the treatment of opioid withdrawal in heroin-dependent hospitalized patients.”……..(you can read this article in its entirety here: Pharmacy Times article * that patient also gave this article for reference: Second article given to me by that patient

*******Here was my response to her post underneath my article:

The writers of your one article make the medications you are being prescribed. The information I have is from several trusted news organizations, and our government has been saying for years how big Pharma has downplayed the negative affects of their products. Lastly, I’ve known people who say that it’s much worse to stop taking (Bupenorphrine/Suboxone) than others that are not agonist-antagonist opioids. All I’m saying is that if you want to take that medication, even though it’s not approved by the FDA; you should have the choice to do so! But if the other kind of long extended release Patch has worked for other people, including myself for over a decade, then I/they should be able to keep the medication that has worked and hasn’t caused any problems for me whatsoever! I also have at least six or seven different articles where I found my information on the Internet.

There’s also this information below, which says the medication can be used for pain/refractory depression for “off label use” (then why can we not use the fentanyl patch for off-label use?)… there’s also contradictory information and most state that it’s ” only a low analgesic at best”!

In this article here Bupenorphrine- Naloxone Therapy in Pain Management , it states that these medications In the past few years, they have been increasingly prescribed off-label for chronic pain management. The current data suggest that Bupenorphrine /Naloxone may provide pain relief in patients with chronic pain who also have opiate dependence or addiction. However, the pharmacological profile of this medication states that it is a weak analgesic that is unlikely to provide adequate pain relief for patients without opioid dependence or addiction.

Therefore, just as I stated in my original article, these medications are probably OK for people who are struggling with addiction to opioids. But if you do not have an Opioid addiction or an opioid use disorder and you’ve been using the same opioids for Chronic Pain for many years, and they still help to give you a semblance of life & relieve your pain, then you are not an addict. So the Bupenorphrine /Naloxone may work for low analgesic pain relief in addicted person but not in chronic pain patients. That’s what I tried to state in my original article as well. I also said that the company (*Reckitt Benckiser) that is responsible for making the medication Suboxone/Bupenorphrine started this whole fake opioid crisis so that they could have a monopoly on this medication and get rid of all opioids. Therefore it was a “get rich scheme” for them.

Lastly, I’ve copied and pasted for you, only one of the warnings for the buccal Butrans patch:

The risk for serious, life-threatening or fatal respiratory depression. Physicians should monitor for respiratory depression, especially during initiation of the treatment or after a dose increase, the company said. “Misuse or abuse of Belbuca by chewing, swallowing, snorting, or injecting buprenorphine extracted from the buccal film will result in uncontrolled delivery of buprenorphine and pose a significant risk of overdose or death,” the statement adds.

• The risk for accidental exposure. “Accidental exposure to even one dose of Belbuca, especially by children, can result in a fatal overdose of buprenorphine.”

• The risk for neonatal opioid withdrawal. “Prolonged use of Belbuca during pregnancy can result in neonatal opioid withdrawal syndrome, which may be life-threatening if not recognized and treated, and requires management according to protocols developed by neonatology experts,” the statement said. If prolonged treatment is required in a pregnant woman, “advise the patient of the risk of neonatal opioid withdrawal syndrome and ensure that appropriate treatment will be available.”

After reading the warnings on these medications I don’t see why they are any better than regular opioids or the fentanyl patch? All medications, including heart medications, Coumadin & chemotherapy, come with warnings! But sometimes the benefits outweigh the risks.

Articles:

1:Bupenorphrine has not been approved for pain- but possibly off label can be a weak anelgesic

2: Are there other uses for Bupenorphrine

Letter To Leaders of Oregon Forced Taper


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

To Leaders of the state of Oregon,

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

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

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

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

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

Peace & Hope,

Suzanne Stewart

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

Fighting For Chronic Pain Patients


This is the “Roy Green” syndicated radio show that is heard in Canada & the USA each week. I was contacted by Roy a few days ago and asked to come on the air and speak with him regarding the dire situation that chronic pain patients are living and dealing with these days. I also spoke of how I was informed that I’m losing my own ER/LA pain meds in 2 weeks. The starting point of my segment Is at 39:12 through 54:15. Please feel free to share this with our pain community. Thank you!

Suzanne Stewart on the Roy Green Show, Fighting For Chronic Pain Patients

Keeping Hope Alive is Tough!


You never think it will happen to you, until it does. I have been helping others and advocating for them for many years now. I have been writing for the National Pain Report and in my own blog (tearsoftruth.com) for several years as well. I try to give advice to others to help keep their hope alive. On my WEGO Health profile, my favorite words are posted. These are words that I try to live by and a phrase that originated with me, “Hope is a verb, You have to DO something in order to have it”. Now I have to practice what I have been preaching.

I think most of you know that in March 2018, I visited my pain Dr. And he did the usual random urine test. I was told in April that it showed a positive for PCP and something else, I cant even think of right now? Probably because I have no idea what these are and did not ever take them. It ended up being a “false positive” after we were charge $300.00, because HE forgot that I was taking a migraine medication that did not show up on the MAPS. He says it shows up sometimes, not others?

My PTSD symptoms have gotten worse prior to each upcoming pain Dr. visit. He has become less respectful towards me. I used to feel a mutual respect between us. I stopped taking some other cancer pain medication that was prescribed to me before I started seeing him in 2015. I felt that he respected me for being able to do that and go through the withdrawals process. My brain did not ever care about the medication, but my body got very sick when I stopped it.

The past few appointments I have not felt that respect that I had felt in the past. My Dr. was treating me differently. He got angry if I got weepy at all and he yelled at me for crying. Something changed in him and I could see it and feel it, but I was not sure what it was or why it was happening? This week I went to my appointment on Monday, 7-9-18. Things were pretty “normal” during the visit, but he was kind of “short” and “quick” with me, when he used to chit chat a bit and even smile when he told me about his children. At the end of the visit, he said this to me “so we are stopping your Fentanyl patch”. I was stunned because I’ve been on it for 15 yrs and taking less now than I was in 2015. I’ve had some semblance of a life with my husband, kids and grandchildren. I’ve been doing quite well and now he was taking away something that I’ve been doing very well with. Then came the “big lie”; (*which I know is untrue because I asked my Neurologist and Cardiologist and I was told it was not true whatsoever). He told me that I was “probably not getting more than 30% of the medication anyways because I’m not “fat” or “heavy enough”. That the fentanyl patch works better on “fat/heavy people” or “people with more body fat than I have”.” I questioned him, but I knew enough not to question him too much. I did not want to make the person that I depend on to have some kind of life at all, angry with me. My husband brought the empty bottle of my Migraine medicine to show him that I did have an 8 month old script and recently got a new refill. It was not showing up in the MAPS and my husband asked him if we should ask the pharmacy to make sure it is in that system? He told us that “they don’t like if you know too much, its best not to say anything”. What the heck is that all about? We are supposed to be lambs/sheep and follow orders and jump off the cliff if told to do so, without ever asking any questions? I’ve always found it better to be knowledgeable in my own treatment and healthcare. But this is not the case today, I guess?

Lastly, I put myself into old “abuse mode”. It was the same as the “old days” and I put myself in another place, disassociated until we could get the hell out of that room. All I wanted to do is cry and be hysterical for a few moments with the one person who loves me and who protects me to the best of his abilities and who is my soul-mate, my husband. I heard him tell me that he was taking away my patch and that I could take a different extended release medication “MS Contin”. But, I told him that I am unable to take that medication because I have Gastroparesis and even before I was diagnosed with GP, I could not take that medication because it made me sick, violently ill. That was the only choice I had and he gave me “one more month to be psychologically ready” but my dose was lowered and spread out for another full day. In one month I will be taken off of my patch after 15 years, with no tapering and nothing that matches the strength and pain lowering levels of what has worked for me for so long.

We are now at the mercy of the government in our patient rooms. He says that the state and federal government are making him do this to me. But there is no “law” that I can find in Michigan yet, stating that all persons taking Fentanyl for chronic pain must be removed from taking it now. I’m sorry that I don’t believe that you must be “heavy person” in order for the Fentanyl to work, because I was pretty much anorexic when I started it and it’s always worked for my pain. I have never had a “high” or any feelings except some relief from the pain of the several high pain illnesses that I live with and have lived with for many years. He also told me that “only those who have cancer are allowed to have these fentanyl patches now”. There is no evidence to prove that cancer pain is any worse than the pain that many of the chronic pain patients have to endure. I know there is a NORD website quote or a quote from the AMA, regarding this but I’m too sick right now to try and find it for you, I apologize. It’s easy to give advice, hope and love to people going through this, but when it is YOU who is going through it, all the love, advice and hope won’t make it better.

The same day that this happened, I awoke at 4:00 am with a feeling like someone was pressing on my left eye. When I opened my eyes, I could not see out of my left eye at all. It was totally pitch black. After a few minutes of screaming hysterically and my husband rushing to my side, I started to see patches of light in a dark mass. Then patches of the living room came into focus. After about 5-10 minutes, I could see again but not as sharp as usual with my glasses on. I went to sleep and in the morning I had a dull ache in my left eye and went to the hospital’s eye clinic that day. The Dr. Said that I had a “mini stroke” or “TIA of the eye”. My blood pressure had been high at the pain Dr. Appointment and my heart rate was 100 bpm before he even came into the room to tell me the news. He told me it was probably from stress and nothing they could do for me after all of the special testing that they did, they sent me home. I visited my heart specialist the next day and filled him in. He concurred with the eye clinic and said it could even have been an Ocular Migraine, but either/or both are from stress and can be a dangerous precursor to a stroke. I had a CVA or stroke in 2006, so I’ve been there and done that already. Today, we are like lambs going off to slaughter and nobody cares if we live or die. As my kind-hearted specialist physician of 15 years told me yesterday, “unfortunately you and people like you are collateral damage to the hysteria taking place right now”. I guess now it is up to me to see if I am able to follow any of the advice that I’ve been giving to others in this same predicament? Will I have another heart attack or another stroke because the legislators don’t care about me as an individual? Will I live to see my granddaughters and new grandson’s lives evolve or will I be a statistic? I guess only time will tell and all I can do is try to “keep hope alive”.