Office of the President, MS 100
Irving Enclave 113
Brandeis University
415 South Street
Waltham, MA 02453
Dear Sir,
I suffer from the spinal cord disease Adhesive Arachnoiditis.
There was testimony before the FDA in 2014 that the pain this disease produces is “Beyond all human comprehension” I can afford to go to the best, highly skilled doctors, so I have been well taken care of. I can drive, go to church and take care of my family. Opioid pain medications are a small but vital part of my treatment plan. Since I carry a genetic difference that makes my body metabolize opioids rapidly, I am prescribed a stable dose that is higher than the CDC suggested daily limit of 90mg of morphine equivalent.
Doctor Kolodny refuses to acknowledge that patients like me exist.
People are different in size, disease and pain tolerance. Removing opioid pain medications from the pharmacy, that are of a certain milligrams. Which Dr. Kolodny is now petitioning the FDA to do,is withholding adequate pain treatment from those who are different. E.G. people of large stature, people who absorb opioid pain medications at different rates ( CYP450 Enzyme Defects), different disease pain. All tools should be available for trained physicians. Removing these medications before new ones are developed and tested is neglecting to treat pain adequately for those who have tried all methods to reduce pain and have only found success in using prescribed opioid pain medications in adequate formulations to reduce pain to a tolerable level.
Without compassionate care and pain control I will die. I really do not care what I take to treat my pain and I have tried everything any doctor has suggested to get better, to manage this pain. Opioids have been the only thing that tempers it. I feel trapped, trapped in a Warsaw Ghetto of my own, filled with unspeakable misery and suffering with no way to escape the coming destruction, destruction the withdrawal of compassionate care will surely bring.
I am writing this to ask that you publicly speak out against the Nazi ideology coming out of Heller Opioid Policy Research Collaborative, Brandeis University.
Please let me remind you of what the world was like when Brandeis University was founded back in 1948.
Because those who don’t identify the mistakes of the past are destined to repeat the same mistakes
Brandeis University rose from the ashes of World War Two to be a beacon of open inquiry, justice, and truth.
It’s chosen motto: “ Truth even unto its innermost parts” (1)
Just a few months before Brandeis University’s founding, Doctor Karl Brandt, Hitler’s personal physician, who had been chosen to administer the German Aktion T4 program, was executed on June 4, 1948 along with 6 other doctors for crimes against humanity at the close of the Nuremberg trials. He had been found guilty of mass murder under the guise of euthanasia.
The German T4 program empowered physicians to kill anyone deemed to have a “life not worthy of living”. The program directed all psychiatric institutions, hospitals and homes for the chronically ill to murder those the Nazis referred to as “burdensome lives” and “useless eaters”. Authorities directed mental institutions throughout the Reich to “neglect” their patients by withholding food and medical treatment. The murder of the handicapped was a precursor of the Holocaust and Dr Karl Brandt was the driving force. Although the T4 program appeared to end on August 24, 1941 it continued underground killing around 200,000 and became a precursor of the final solution in which millions of Jews and other minorities were murdered by the end of the war in 1945.(2)(3)
Is the Heller Opioid Research Collaborative trying to save lives and reduce opioid deaths?
Or is their goal to change the present U.S policy of treating the pain of the most unfortunate citizens among us with opioids* to a policy where pain treatment is withheld, even if it leads directly to the patient’s death
It saddens me to say that, from the chronic pain patients point of view. Patients who are suffering from a plethora of this world’s most painful conditions, the war on drugs has become a war on pain patients. A modern day German Aktion T4 program which has been snuffing out the lives of pain patients daily under the guise of saving lives.
So Then?
What is the truth even unto its innermost parts?
One indisputable truth is that pain patients are dying at an accelerated rate and they will continue to die as long as those making the policy changes regarding pain treatment ignore what has been happening in the pain community.
A Second Truth
To ignore what has been happening in the pain patient community and the deaths these policy changes have been causing is encroaching on the fundamental human right to pain control of others.(7)
A Third Truth
To deny that right to pain control to a legitimate pain patient who is chronically ill is torture (7)
How, may I ask is denying pain patients compassionate pain control, and letting them die by suicide today any different than Hitler’s T4 program and the murder of the chronically ill by “neglect and withholding medical treatment”?
Please ask yourself.
If these deaths of pain patients had occurred in Nazi Germany as part of Karl Brandt’s T4 program, would the military tribunal at Nuremberg have found him guilty of crimes against humanity?
If we are looking for the honest truth. We would have to answer Yes!
I have talked to Dr Kolodny and when I brought up the fact that the new CDC guideline was killing pain patients at an accelerated rate, he vehemently denied it was doing that, and demanded that I provide him with the names of pain patients who had taken their lives after losing pain control. More recently in his tweets Dr Kolodny issued this challenge to the pain patient community. He first said “Outside of palliative care, dangerously high doses should be reduced even if the patient refuses.” He then asked “ Exactly where is this done in a risky way?” … and … “I’m asking you to point to a specific clinic or health system that is forcing tapers in a risky fashion.”
I understand many patients responded by sending replies to his twitter account only to have their comments deleted and be blocked from further posts.
So I will answer that challenge in this letter regarding events at Benefis Pain Management in Great Falls, Montana recently. Upwards of 1000 chronic pain patients were abruptly tapered or cut off completely. Shortly afterward, Byron Spece of Lewistown, Montana killed himself.
Here is his obituary
http://helenair.com/news/local/obituaries/spece-sr-bryan-bonz/article_d3a222f9-efda-5205-a933-71003026064c.html
The account of his death and interviews of family members were published online in a story by Pain News Network and you can read that here: https://www.painnewsnetwork.org/stories/2017/5/26/patient-suicide-blamed-on-montana-pain-clinic
Another Montana pain Patient suicide was the death of Robert Mason who shot himself after losing his pain doctor. You can read or listen to the Montana PBR account of his death here:
http://mtpr.org/post/pain-helped-him-pull-trigger
Dr. Stefan Kertesz, an addiction medicine specialist at the University of Alabama at Birmingham School of Medicine had to say about patient suicides . “A significant number of chronic pain patients are killing themselves, and that should be a concern to society at large when people die as a result of something done to care for them.”
There are many more if you would care to know that I was hoping to share with you as our group has been keeping a list but I have to tell you that many in the pain community believe that there is an undercover T4 program designed to put chronically ill patients to death under the guise of preventing opioid deaths that is being managed by Heller and there was strong objection to sharing our list with the person who many believe is the driving force behind these deaths.
The state of Montana leads the nation in suicides. Around 40% of them are patients with medical problems, terminal illness and, or under treated pain patients ( 2014) (5) because it is almost impossible for a pain patient to find treatment there. No doubt that number will grow when we are completely cut off from pain control as the CDC and Dr Kolodny continue their attack on pain patients.
Please let me refer to the words of Justice Louis D. Brandeis the Founding father of Brandeis University:
“ The greatest dangers to liberty lurk in the insidious encroachment by men of zeal, well meaning but without understanding” (6)
Dr Kolodny certainly is zealous.
But if Dr. Kolodny is really interested in preventing opioid deaths and addiction as he claims, why has he been silent about the flood of illicit fentanyl analog pouring into the country, which even the CDC has admitted is the major cause of recent overdoses?
Why has he been so silent about deaths caused by withdrawal of care in the pain patient community?
Why has he been silent about the profound physiologic effect serious untreated pain has on the endocrine, cardiovascular, immune, neurologic and musculo-skeletal systems?
It is called involuntary passive euthanasia and unless someone will stand up for me, for us, unless you stand up for us our lives are lost.
A final truth to think about is this:
If nothing is done to put a stop to this modern day genocide of pain patients, it will be a stain on the Brandeis University reputation that will be a legacy remembered long after Germany’s T4 program is forgotten.
* Now used as a last resort when all other treatment options fail in harmony with the World Health Organization 3 step ladder which is the world’s gold standard for treating pain (4)
Brandeis Education Mission and Purpose
Karl Brandt – Wikipedia
T4 Program Nazi Policy – Encyclopaedia Britannica
Practical Pain Management Editor’s Memo: The WHO 3-Step Ladder Still The Gold Standard In Pain Management – Forest Tennant MD, DrPH
Karl Rosston – Montana State Suicide Prevention Coordinator – Missoulian
Justice Louis D. Brandeis – Brandeis University
Human Rights Watch World Report 2010 – Abusing Patients -Health Providers Complicity in Torture and Cruel, Inhumane and Degrading Treatment.
(8) The Opioid Crisis- Patients Pushed to the Brink -The Bulletin
(9)Complications of Uncontrolled, Persistent Pain – Practical Pain Management – Forest Tennant MD DrPH
Filed under: General Problems
How in God’s name is anyone still listening to this Suboxone whore who benefits financially from freaking addiction treatment centers?!?! Even if we ignore the fact that he doesn’t know wtf he’s talking about, doesn’t the concept of “conflict of interest” mean ANYthing any more??
I wonder if the cpp that wrote this letter would mind if I use it as a model to write a letter of my own to Brandeis University (BU)? I think it would be a good idea if more of us in the cpp community did this. Surely, the president of BU would want to know if one of his employees was causing harm to those millions of people in the cpp community.
I would think that he would also be concerned if that employee was implementing/supporting policies that would reflect negatively on the image of the university. Having the University become associated with a modern day version of the “T4 Program” being promoted by one of its employees would historically “mark” this facility with “blood stains” that could never be erased. BU could potentially be right up there with such infamous names such as Auschwitz and Dachau.
Again, if I were the BU president, I would appreciate hearing from those people being harmed by the policies of one of my employees.
you have my permission
We all know about the problems in the cpp community and the fact that patients are being pulled off their meds because doctors are afraid to prescribe over the 90 MME (or in some cases 50 MME) limit of the CDC Guidelines. Those Guidelines exempt palliative care (PC) and cancer patients, but now the fear has grown to where even PC facilities are reluctant to accept patients.
There are 3 basic criteria for PC care These have been in place for decades. If a patient meets these criteria, then there should be no other obstacles in the way of being accepted as a PC patient. The 3 criteria are: (1) the underlying disease has no cure, (2) there is a likelihood the disease will shorten lifespan, and (3) Symptomatic treatment has a high probability of improving the quality of life.
So, if a facility is offering palliative care services, they should not have the right to impose additional criteria. But, in my experience, that’s exactly what they are doing. They do not want to provide medication for intractable chronic pain patients that need more than the 90 MME limit even though most all State and Federal documents that refer to opioids dosages exempt PC patients. I was a palliative care patient, then my doctor left the state. I was not contacted in any way to be offered a replacement PC doctor when I called (2x) I was told I could not be a PC patient at their facility. Some of the things I have been told (by this facility and others) as to why I can’t be accepted as a PC patient include:
I had to drive too far for the appointment, only our nursing home patients can receive PC, I potentially will live for too long with my disease to qualify for palliative care, and (last but not least) I must promise to not ask for any medication from this PC clinic; otherwise we will not even consider you for being a PC patient with our facility. All this in spite of the referrals that they had received for me.
My pain clinic is cutting my medication out of fear of persecution, you think that they would welcome a palliative care patient because they are “exempt”, and the pain clinic would not be persecuted for providing medication over the 90 MME limit. But, that is not the case here either. My clinic said that they will not accept PC patients in the clinic at all. If I do get to become a PC patient once again, my pain clinic will toss me out asap. If the PC facility will not provide medication and the pain clinic tosses me out, I will have no way to control my pain.
So, things are not getting better, they are getting worse. The fact that PC facilities are creating their own definitions as to who can be a patient and who cannot is ridiculous. They are redefining the meaning of PC. If asked, they cannot provide any source for their new definition. They just ignore the definition that has been in place for decades. It is the equivalent of someone redefining the meaning of 2+2 as equal to 5. I don’t thing it is legal to do this. I believe it is discrimination under the ADA. Critically ill handicapped people are being discriminated against on the basis of their disease and the medication amounts they must take to control their pain. Does anyone else have more information on this? Has anyone challenged one of these facilities with the “fake” criteria and filed a complaint with the DOJ Civil Rights Department?
Thanks for reading my long comment. Please pardon any typos.
This letter should be sent to the major media. Is the writer doing this? I believe that it is very important! This is the kind of word that needs to circulate the nation. I am in this horrible pain as I was force-tapered off oxy and Fentanyl. My pain is killing me. I can’t do anything anymore. It hurts my back to carry a glass of water from the kitchen to the bedroom. I tried to kill myself twice but didn’t succeed, so I ended up in mental hospitals right after those attempts. Now I’m labeled “opioid use disorder” (I never took my pills EVER out of their prescribed plan), and didn’t take them in my suicide attempts. But my medical records are a big mess. My family stepped in and made decisions about me that were completely their opinion “out of the blue,” and completely untrue. So I’m stuck. If I went in to the doc about my pain I wouldn’t get an aspirin. Please send this letter around to the big media and thank you for writing it!
So sorry Kristine. Please try and arrange to move less. I have been cut off 2.6 years with canal and foraminal stenosis. I won’t move and rub all of that up to white hotness ever again. I now have heart failure and Diabetes for the mobility I lost. I used to walk a mile to pick up my 3 x 40, $80 bottle of oxycodone at Walgreen’s and was none the worse for the wear.
We have been so severely disrespected, what I really am afraid of is what all of these with blood on their hands will have to deal with the day judgement comes their way. Compared to them – we are not THAT SICK or in THAT MUCH trouble.
Whether he is a psychologist/pain specialist or not, …nothing prevents him from knowing the truth about Opiates/Opioids, like WE DO, …all the worse for this self-serving clown.
“Outside of ‘ palliative care… ‘ A K. states in header quote, doesn’t matter if a pr. is ” palliative care” or left with weeks, days, even hours, due to dzs which are non cancer related or cancer related, fact is millions of ppl in horrible pain have been left to suffer til the bitter end.
It has been apparent A K. has no clue regarding anyone who is an intractable pain pt whether pain is non malignant nor related to malignancies. His mindset has been ” Equal Suffering Opportunity for All.”
What a travesty top Pain Clinicians from around the world were not present when the CDC developed their so called ” guidelines for opiate prescribing specifically for GP’s only. All done behind closed doors and with AK as a lead. A shrink with 0 experience in the treatment of any intractable pain pts. CDC called in and relied on the pumber and got the electrician instead. The patients have, are and continue to pay the price, 7/365 with no end in sight. We are NOT the addicts. We are ylthe intractable PAIN pts. and we’re damned sick and tired of suffering thanks to the endless Mickey Mouse Antics. ( Apologies to my fav Disney character, BTW.)
OMG!! This man has found the parasite causing all the trouble with pain medicine.
Dont no why that happens Maybe because Im slamming keyboard from being pissed off.
I will cut to the chase with this dirtbag Kolondy I have asked,I have tried to do “research” on him and I get no response to either. The little bit I could find out about him, He is a SHRINK! He has no schooling treating pain patients. Dont no what he did for the people in “charge” though I will tell you if you D.M. This guy somehow I guess by following Bernie Madoff’s book on how to fool the public out of nowhere became an “expert witness!!” HOW? What did he do to get this tittle? I would love for someone with deep pockets to go after this jerk. Because like the pt mentioned Hitler in his post,this parasite is the HITLER of the new era!
And like he mentioned,I tried to find out about this shill and he to blocked me. He is the root of the problem today. But if you “buy” into his B.S he will gladly put you on SUBOXONE his drug of choice and might even recommend a rehab that he might or might not own..I hope this pt finds someone to listen to him
Andrew Kolodny is nothing more that a piece of s–t, psychiatrist, he
Should have nothing to do with pain meds. No one in their right mind
Should have anything to do with him. Agreeing with/him or believing
Him just shows how Stupid you really are.