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
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E08: Live Interview With Tennessee Senate Candidate, Kent Morrell