An Open Letter To All Who Hold Public Office In America From Painful Disease Patients
We are crying out to you today as intractable pain patients who are citizens of the United States and registered voters. We believe any measures considered to reduce the amount of pain medication permitted to intractable pain patients, or any measures that try to regulate the way a physician can practice medicine to be a mistake and will fully explain with cited scientific and social references why.
There is an agenda in America to delegitimize pain, to reduce pain to a mere annoyance that is manageable by Tylenol or other OTC medications, and to paint persons who require more intervention as “addicts” or medication “seekers” when this is the furthest from the truth. Painful disease patients with lifelong chronic illness are suffering persecution and backlash unheard of since the days of the Holocaust.
To fully understand the machinations behind this campaign against prescribed opioid pain medication, all Politicians or political figures must consider all the following facts.
In 2005, the magazine Wired (1) released an article entitled, “The Bitter Pill” , about a promising new addiction treatment drug making the rounds in New York City called buprenorphine. It featured a 36-year-old New York health department psychiatrist named Andrew Kolodny. Dr. Kolodny allowed the reporter to shadow him as he attempted to convince reluctant physicians to prescribe “bupe” instead of methadone to people suffering from substance abuse disorder. It also featured stories from those who proclaimed that buprenorphine had given them somewhat of a normal life back. The reporter also spoke of Dr. Kolodny’s appeals to prison physicians to switch prisoners from methadone to bupe.
In 2018, Dr. Andrew Kolodny is the co-director of Opioid Policy Research at the Heller School of Brandeis University. He is also the co-founder of Physicians for Responsible Opioid Prescribing (PROP). He achieved these positions without returning to hallowed halls to receive any further higher learning in opioids, pharmacology, or intractable pain and its effects on the body. He achieved this status without treating a single patient with intractable pain, and he has never written a single prescription for an opioid drug (well, outside of buprenorphine, a very powerful opioid -which the government allows to be prescribed without consideration of that fact). He achieved this status without continuing to prescribe buprenorphine for more than a few months in 2005. He is a psychiatrist who has no patients or couch. It is difficult indeed to address him as “Dr. Kolodny” when he has done little in the way of true patient care, yet has titles and accolades heaped upon him for what appears to many to be keen sales acumen and cunning abilities of persuasion.
The only thing that Andrew Kolodny has achieved since Wired made him known in 2005 is sales of buprenorphine and demonization of traditional opioids with exaggerated stories, backed by his credentials. He managed to travel the United States throughout the end of the 2000’s, convincing prison physicians and hospitals to switch prisoners and patients from generic methadone to name brand bupe, sold under trade name Suboxone, raking in untold fortunes for its maker. As you know, prisons operate on state and federal contract, and with the contracts now locked into Suboxone, Dr. Kolodny had scored an unheard-of victory for the Suboxone maker Reckitt-Benckiser, an unlikely pharmaceutical contender, as they are manufacturers of Durex Condoms and Lysol spray.
Surely, Dr. Kolodny did this all out of the kindness of his psychiatrist heart and received zero compensation. A real champion of the people.
In 2010, a faint alarm sounded. Esteemed science journals began to realize that intractable pain patients were soon to be damaged if hysteria being whipped up by Dr. Kolodny and his esteemed friends in the pharmaceutical industry, who had much stake in the rise of buprenorphine (enough to keep tweaking its formulation to keep the patent), were to be taken seriously.
The esteemed scientific journal Cochrane published a study entitled, “Opioids for Treatment of Long-term Noncancer Pain” (2). The authors arrived at the conclusion “proper management of a type of strong painkiller (opioids) in well-selected patients with no history of substance addiction or abuse can lead to long-term pain relief for some patients with a very small (though not zero) risk of developing addiction, abuse, or other serious side effects”. The authors added a caveat that their study had the parameters of a shorter window of time than other medication review studies, simply due to humanity. Plainly put, a control group of intractable pain patients can only be asked to go so long without pain relief in a civilized society for the purposes of medical research. This is a particularly sad and astonishing fact to ponder, as medical professionals are daily force tapering and abruptly cutting off intractable pain patients prescribed opioid medications and anxiety medications that they have taken for many years at stable doses, as directed, with no signs of substance abuse. Yet, the research community feels this is too inhumane to do for study purposes!
In addition, the National Institutes of Health also published a paper supported by the nonprofit group Human Rights Watch, entitled “Access to pain treatment as a human right” (3), in which the authors argue, “According to international human rights law, countries have to provide pain treatment medications as part of their core obligations under the right to health; failure to take reasonable steps to ensure that people who suffer pain have access to adequate pain treatment may result in the violation of the obligation to protect against cruel, inhuman and degrading treatment.”
State Legislators began to implement tracking programs in their states, called the Physician Drug Monitoring Program or PDMP- in some states known as the PDMD-the Prescription Drug Monitoring Database. This program was slipped into states without a single patient voting. Many had no idea it was even in place! No consent was given. It is a controlled substance tracking system, which pharmacies use to see where a patient gets controlled medications, and how much each patient receives. Supposedly to control “double dipping”, this program has become a Gestapo type program with the boot squarely on the throat of chronic pain patients. In some states rampant abuse of this system occurs, with no punishment. Veterinary offices have full access to the state PDMP, though they treat animals and not people, and HIPAA does not apply remotely to veterinarians. There is absolutely no way on earth to legally justify this. Law enforcement also has access to the PDMP system in some states. Additionally, in some states as well as in some pharmacy chains nationwide, there is an added program named Appriss NarxCare(4), in which the physician can enter a patient’s name and date of birth, and the computer will use an algorithm to decide whether or not that patient “deserves” to receive prescribed pain medication according to the “score” received by the algorithm. The algorithm searches the state database and decides this “score” based on how many prescriptions have been filled of what medications and in what amounts.
These algorithms are very secret and proprietary, so little is known of their formula, however what IS known is that they do not take into consideration diagnosis, scans, labs, genetics, surgeries, length or time of conditions, doctor patient relationships or any other variable outside the medication and amount. What kind of medicine is this being practiced and how is this allowed? What is the point of a $100,000 + medical education if a physician is going to push a button to decide care instead of using an education? Why are algorithms being used to determine worth of human suffering, a very personal and partisan experience that a machine cannot possible determine the worth of?
Enter Gary Mendell, a billionaire hotel tycoon who decided that he wanted to channel all his rage and frustration over the loss of his son into making opioids inaccessible to 99.9% of America. Brian Mendell died in 2011 of suicide after years of substance abuse disorder, starting with early teenage marijuana experimentation(5) . Mr. Mendell claims his son “had been clean for over a year and had committed suicide over shame of his addiction.” To date, little else has been released publicly regarding Brian Mendell’s SUD and no one knows what drugs Brian was abusing after marijuana. Mr. Mendell was exactly who Dr. Kolodny had been waiting for. Angry with very deep pockets. Mr. Mendell founded Shatterproof(6) , an organization that spreads fear and lies about opioids on a daily basis through their paid media sources. A recent example reads:
“Opioid Addiction can begin in just three days exposure”.
A patently false, outrageous claim that no one in the media questioned before they ran with it, pulling quotes from the air. A simple logic check, without having to consult medical journals, reveals this lie. If this were true, most of the United States would be addicted to opiates. This kind of fear mongering only causes people to go through unnecessary pain when they could be comfortable, because they are “afraid” of addiction after a painful surgery or dental procedure. Unmitigated spreading of these lies helps no one in America.
The ship of fools gathered steam and courage, bolstered by the a few dishonest doctors and fake patients they uncovered, exposed and shut down in the early 2010’s, the “pill mill years”, and then the magnum opus, the CDC guidelines for chronic pain management, were issued in April 2016, after a premature attempt by Kolodny was rejected soundly by the FDA in 2012(7). However, at least Dr. Kolodny finally received somewhat of an education in what an opioid actually is. Dr. Janet Woodcock gave him a very good education on the subject while telling him to get stuffed in the most scientific way possible, to the immense enjoyment of all who think the paper the letter was written on has more substance than Kolodny himself. Alas, the 2016 guidelines were rushed through. However, the guidelines were never given proper vetting by a peer group, they were convened by a secret panel led by Dr. Kolodny and Ms. Deb Houry, another wrongly invested CDC point person with a past tragedy fueling her rage against opioids. Also, the CDC guidelines were never meant to apply to existing intractable pain patients. Nor were they supposed to read as a standard- they were guides, not laws. However, the media, led by Mendell, soon shook the guide at physicians who dared to prescribe over 90 MME per day, labeled patients as addicts who required pain control over 90 MME per day and doctors were soon threatened with license revocation for daring to prescribe AT 90 MME per day.
All we will say further about the CDC guidelines are they are presently destroying people’s lives. Intractable pain patients are committing suicide daily in large numbers due to the cut off their life-giving medicine because of the imposition of these guidelines(8) . How could any state consider ending coverage of prescribed pain medication? Especially considering the revealed truth about present CDC director Dr. Redfield? One more person in this scheme against intractable pain patients who has a personal score to settle. His son suffers from substance abuse disorder and overdosed on cocaine laced with illegal Chinese fentanyl analog . Dr. Redfield responded by vowing to take away intractable pain patient’s abilities to obtain legal prescriptions of opiates in amounts needed to relieve their pain(9). How does cocaine overdose by a person who purchased an illegal street drug even compare to prescribed pain medication that is carefully vetted by a physician before being given to a patient who faithfully attends regularly scheduled appointments? Furthermore, prescriptions have sharply decreased in the past decade and RX opioid addiction treatment has declined as a result, nearly flatlining as the lowest population in addiction treatment centers according to the Substance Abuse and Mental Health Services Administration (SAMHSA). This graph supplied by that administration shows the incredible truth of addiction in America, with illegal heroin leading the way, followed by alcohol, marijuana, and lastly prescribed opioids. Yet, incredibly, recreational marijuana is being legalized in states across the country! How does this make any rational sense?
When is someone finally going to stand up for intractable pain patients? There are voices in the medical community who have tried to speak out for us and they get shouted down! Dr. Michael Schatman wrote a lengthy peer reviewed piece (10) pointing out that the CDC’s own data collection mechanisms were flawed and inflated . He showed that in OD’s, almost every time, there were multiple drugs present, usually 5 or more illicit ones. Overdoses were not happening in the chronically ill patient population, but in the recreational user population. Exactly what happened with Eric Bolling’s son(11) , what happened to Dr. Redfield’s son, Deb Houry’s loved one, and almost all others who have exacted their vengeance on prescribed opioids. Millions of intractable pain patients are paying the price for this revenge play! How can this be happening in the United States of America in 2018?
Please, we beg the you to review the links footnoted and to understand that this “opioid crisis” is not a crisis that involves prescribed drugs to intractable pain patients. This is/always has been an illicit drug problem that involves heroin and illicit Chinese fentanyl analogs that are deadly, analogs the DEA didn’t even attempt to begin to control until late 2017(12) . It is also could be fairly called a manufactured “addiction crisis” to help the sales of Suboxone(13)!You must use logic and dispassion.
Strike any bill that would take away medication that restores life and function to millions of people who need it every day. Would you force taper and cut off insulin to diabetics? Our carefully prescribed pain medication is no less vital to our health. We should not be held hostage to those who are suffering from substance abuse disorder, or those who have stolen pills and gotten off scot free due to “who they know” in your ranks(14)!
We are not addicts. We do not suffer the ridiculous notion of “buprenorphine deficiency” that has been suggested by unscrupulous, incentive driven ER physicians trying to score points with a pharmaceutical company. We do not deserve the outrageous violations of civil rights and constitutional benefits enjoyed by our fellow citizens who take their freedom for granted, without a second thought about being tracked or judged, without worrying about denied treatment due to a computer algorithm that has no idea of human characteristics or charted information.
If you can read through this plea and continue your course to reduce and discontinue prescribed pain medication after reading all these facts, then you are either in league with these soulless people or have antisocial personality disorder. If you can stand by, wringing your hands while we send our letters and call your offices, and reply with silence or your pithy form letters, you are no better than those who went before you while wholesale slaughter went on and did nothing to stop it, back to the days of Herod.
They will be judged harshly, and you no less. Will it be worth it?
Sincerely,
The Chronic Pain Patients of America
_____________________________________
(1)-https://www.wired.com/2005/04/bupe/
(2)-https://www.cochrane.org/CD006605/SYMPT_opioids-long-term-treatment-noncancer-pain
(3)-https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2823656/
(4)http://www.modernhealthcare.com/article/20171009/TRANSFORMATION03/171009954
(5)-https://www.cnbc.com/2017/11/17/opioid-abuse-should-be-treated-as-a-disease-not-moral-failing-ceo.html
(6)-https://www.shatterproof.org/about/history
(7)-http://paindr.com/wp-content/uploads/2013/09/FDA_CDER_Response_to_Physicians_for_Responsible_Opioid_Prescribing_Partial_Petition_Approval_and_Denial.pdf
(8)-https://tonic.vice.com/en_us/article/8x5m7g/opioid-crackdown-chronic-pain-patients-suicide
(9)-https://www.livescience.com/63088-cdc-chief-son-fentanyl.html
(10)-https://www.dovepress.com/pain-management-prescription-opioid-mortality-and-the-cdc-is-the-devil-peer-reviewed-article-JPR
(11)-https://people.com/tv/eric-bolling-son-death-ruled-accidental-overdose-included-opioids/
(12)-https://www.dea.gov/divisions/hq/2017/hq110917.shtml
(13)-https://www.nytimes.com/2013/11/17/health/in-demand-in-clinics-and-on-the-street-bupe-can-be-savior-or-menace.html
(14)-https://www.salon.com/1999/10/18/drugs_3/
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