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The Good, the Bad, & the Ugly
• 2018 •
A Press Release of Events & Happenings in the Chronic Intractable Pain Community
The last 2 ½ years have been wrought with suffering for millions of patients who rely on Opioid pain medication to improve their quality of life & function. What started with good intentions, the 2016 CDC Guidelines for PCPs prescribing to Opioid naive pain patients were written as a starting point & general guidance has morphed into a tumultuous and torturous time of uncertainty for countless Americans who suffer from chronic intractable pain.
A Quick Recap:
Quite a Challenging Year for the Pain Community
Between the CDC guidelines being misinterpreted & misapplied, at least 33 states adopting new restrictive laws to reduce prescribing with the hopes of reducing addiction & overdose deaths, 2 massive federal bills being signed into law, stable patients being force tapered, abandonment of pain care, and #SuicideDue2Pain becoming everyday words for millions of people, many have had a rough go of it to say the least.
While reporting on bed-ridden patients and doctors choosing to discontinue treating pain isn’t nearly as dramatic as reporting on the less than 5% of the nations’ population that suffers from addiction, it should have been given at least comparable attention by media outlets. Since our side has received very little attention, yet huge events are happening soon, here we will give you a brief rundown of what’s recently happened as well as what’s coming up for the 25-28 million Americans who suffer daily from intractable pain.
After 2 years of virtual silence from leading medical associations, the American Medical Association passed resolutions (AMA Resolution 235) to lobby against, advocate against, and educate regarding the widespread misapplication of the CDC Guidelines. Even a prominent member of the AMA board had a patient nearly die from ‘an underdose’ due to many factors leading back to the guidelines being applied as law; finally, at the November 2018 Interim meeting, new resolutions representing the AMAs views were passed and made public. This included describing the ways that state & federal policy makers, insurance companies, pharmacies, and corporations have misapplied these guidelines as strict limits resulting in patient harms, including increased numbers of suicides.
In December, Human Rights Watch released their report of nearly 100 pages detailing the human rights violations existing in the United States medical system regarding treatment of patients in both acute & chronic pain and the failures of the states & federal government in protecting this vulnerable population.
On the final day of 2018, the Federal Register opened for comments in response to the Pain Task Force recommendations regarding gaps and recommendations for the treatment of pain in America. It identifies ~70 critical gaps in our nation's outlook on treating pain, with generalized recommendations for each. The draft report dedicates an entire section to important limitations and misuse of the above mentioned CDC Guidelines, as well as another large subsection to encouraging state and federal lawmakers to launch awareness campaigns to decrease the stigma created by seeking any treatment for pain including opioid pain medications.
A major news outlet (Fox News) produced an in depth 3 part investigative piece on the harms inflicted on pain patients. Within 10 days, there were over 2500 public comments just on the main site, with thousands more on social media, mostly heartfelt thanks for finally reporting the truth and exposing the real suffering being experienced daily.
*The pain community is highly disappointed that only one major news outlet was willing to cover the truth; a few others have put out calls for the most dramatic stories, but most have been unwilling to expose the day-to-day suffering and how this was allowed to happen; also other than Fox, most have parroted the same false statistics and narrative that have created the public's perception that doctors & legally prescribed pain medication created this crisis, instead of recognizing the severity of the untreated & undertreated pain crisis that is equally newsworthy here in the USA.
Even the CDC has outlined that it is illicit fentanyl analogs (with nothing to do with pharmaceutical grade fentanyl) responsible for this overdose death epidemic, yet (and this is expanded in ‘the Ugly’) even those who are most outspoken on this crisis do not realize the difference between the two drugs.
A lone veteran, Robert D Rose Jr, filed a lawsuit in Tennessee against the VA, Congressman Phil Roe, and other defendants bringing to light the horror due to the lack of pain management available to our country's veterans. Although the temporary injunction was not granted, many of the allegations were found to be true which has led to him filing an appeal in federal court. While this case is ongoing, he is now helping hundreds of others (veterans & private citizens) to file lawsuits, hopefully in every state. Dubbed ‘operation starburst’, on January 15, 2019 many, or all, states will have a federally filed lawsuit exposing the suffering that state & federal agencies’ policies/laws have created. This should be covered extensively!
Advocacy groups, such as The Coalition of State Pain Advocacy Groups, War on Pain, C.O.R.E., DPPR, CIAAG, and others met with hundreds of policy makers and attended medical board prescribing meetings (and other related activities) to advocate for proper treatment for patients and needed protections for the doctors that do treat pain individually. Some met with success, Texas for example, where others were met with the reality that following the CDC Guidelines, regardless of harm to certain patients, was the only way to allow their doctors to keep their medical licenses.
In April, and again in September, rally’s were held in nearly every state to protest the misapplication of the CDC Guidelines as well as highlight the widespread suffering. On January 29th a third simultaneous nationwide rally will be held in all 50 states. Each of the participants present at a rally represent hundreds more that wanted to attend, but due to their physical suffering are unable.
Over half the states in the US passed restrictive laws on Opioid prescribing. While reducing addiction and increasing access to benefits for those who are already suffering from addiction is admirable, it has been shown time & time again that prescribing to patients experiencing chronic intractable pain is not what caused or fuels this Opioid Crisis, yet this is the popular narrative that is repeated daily in mainstream media. If prescribing to treat pain is not the cause/fuel for the crisis, than logic reveals that limiting prescribing only leads to suffering and some patients turning to illicit drugs to obtain a small amount of relief.
The SUPPORT Act could likely go into all 3 categories here because in its over 1 million words there are portions that are huge wins for the addiction & rehab industries, as well as new funding & policies directed at ending the stigma & shame regarding the disease of addiction, yet so much of this document is geared towards restricting access to Opioid pain medications as if that is the only true cause of addiction. Many policy makers, and addiction & rehab industry stakeholders claim the newly passed law doesn’t go far enough and that the billions of dollars appropriated to fund addiction treatment are just a “start”; while members of the medical community & others claim it misses the point entirely and will do more harm to patients (both pain & addiction) due to its narrow focus and misinformation.
The number that is most often misquoted for 2016 & 2017 deaths when referencing the opioid crisis are 64,000 & 72,000 respectively, the CDC has quietly updated these numbers and admitted that these numbers account for overdoses of ALL drugs combined. Even when they separated out the deaths from opioids, it includes BOTH prescribed & illicit drugs, without regard to how the medicine was obtained or how many other substances were found in the decedent's toxicology report. For the record, most overdoses are due to polypharma or CDI* and have an average of 6 substances in their bodies at the time of death. Another important factor to note, heroin is metabolized as morphine which hinders the true overdose statistics reported to/by the CDC.
Once the CDC separated the number of deaths from prescription Opioid medications, it is less than 15,000 and still includes those with an average of 6 substances in their system and those who obtained the drugs illegally. A few sources have claimed that actual overdose deaths of patients who were prescribed such medication could be as low as 2,000, and even that number may include suicides.
*CDI: Combined drug intoxication (CDI), also known as multiple drug intake (MDI) or lethal intoxication, is an unnatural cause of human death. CDI is often confused with drug overdose, but it is a different phenomenon. It is distinct because it is due to the simultaneous use of multiple drugs, whether the drugs are prescription, over-the-counter, recreational, or some other combination. Alcohol can exacerbate the symptoms and may directly contribute to increased severity of symptoms.
In an article that claims prescribing was only down 5% (although 70% of prescribers say they have either drastically reduced prescribing or stopped treating pain with opioid medications altogether), the public face of the group that petitioned for the creation of (and then helped write) the above mentioned guidelines that have harmed so many said…
“The genie is out of the bottle,” Unless we do a better job of increasing access to effective treatment, overdose deaths will remain at record-high levels and we’ll have to wait for this generation to die off before the crisis comes to an end.” - Dr. Andrew Kolodny
On its own, this quote only sounds semi-offensive. Once you add this to his many statements that purposely conflate addiction & dependence while saying that chronic pain patients & addicts are one in the same, the message he is spreading becomes clear. Few media outlets (and even Congress) have ever questioned the word of this self-proclaimed expert, even though his credentials do not support his position as an “expert” of pain management or prescribing. This older NY Times article highlights the ‘dark side of the addiction & treatment industry’. The new ‘medication assisted therapy’ (MAT) that is being hailed as the cure to the opioid crisis by many like Andrew Kolodny, is also being called ‘the next drug crisis that no one is paying attention to’ by other addictionologists.
The fact that #SuicideDue2Pain is even a common place “hashtag” speaks volumes to answer the question the CDC has posed to researchers, to identify the cause of the spike in suicides that occurred in 2016 & 2017 (of note, the CDC guidelines were published in April of 2016). While the CDC has revealed that more than half of suicides have no known mental health issues, while other information released shows that at least 40% of pain patients have considered suicide due to untreated or undertreated pain.
During the last year, the anti opioid rhetoric has been ratcheted up including non stop media reports depicting prescription RX bottles with scattered pills, or pictures of RX fentanyl patches next to injectable needles suggesting that overdoses are the result of rampant prescription pain medication abuse. It doesn't stop there. There have been countless one sided Opioid Summits or Town Hall events, and overly aggressive public service announcements which have been widely broadcasted & further conflates medical use with addiction & illicit drug use. For example, ousted Fox News analyst, Eric Bolling incorrectly called for prescription fentanyl to be re-classified as Schedule 1 (at approx. 39:30-41:00 minutes into video), equating it with the most dangerous illicit drugs and calling for the elimination of its medical use. Last year, Bolling lost his son to an overdose, the toxicology report revealed many illicit substances in his system, yet he blames legally prescribed pain medication for this crisis. While everyone hurts for those who have lost loved ones to addiction & overdoses, there are millions who take their legally prescribed medicines correctly which affords them to have a better quality of life.
Now that we covered the effects on law abiding pain patients, let's shift the focus to the physicians and prescribers who are being wrongfully targeted by the DEA and state medical boards.
Over 1,000 health care workers have been criminally charged in ‘opioid related crimes’ and thousands of others have been sanctioned or lost their license due to accusations by state medical boards; and while there are surely bad apples in the medical field (just like every other field), many were simply charged with ‘over-prescribing’ or ‘prescribing outside of standard of care’ and deemed to be ‘outliers’ or ‘top prescribers’ opening them up to being scrutinized and targeted by State and Federal regulators.
These terms have taken on a new meaning since the release of the guidelines and subsequent policies/laws. A fact that is well known inside the medical community, but a well kept secret to outsiders, is that since medical providers are held to a higher standard than most of the community, medical boards are not required to afford civil rights or due process to the license holders they govern. Doctors of Courage details this process and spotlights hundreds of providers who have lost everything because of the ‘standard of care’ shifting away from individualized medicine when treating pain and has become hyper focused on strict, blanket prescribing limits. Many of these admonished providers are cleared, sometimes years later, once the patient's actual medical records are considered; unfortunately, by then many of them have spent their life savings to fight the allegations.
There are many more examples of unintended consequences as a result of the CDC Guidelines & State and Federal laws/regulations, but too many to list. We haven't even scratched the surface here, but hope that after learning the main factors as to how deep this goes, many will see the detrimental effects, and acknowledge that we are clearly dealing with two separate crises, neither of which will be resolved unless & until each are addressed and dealt with accordingly.
If things don't swing back in the direction of common sense and patient autonomy, the consequences will be a dark, ominous failure due to reckless policies that will be held in infamy for generations to come, and detrimental to countless Americans in the process.
A New Beginning…
Let's try to put the negative effects behind us and push forward as we embark upon a brand new year with a much brighter, promising outlook. We can now build on the latest favorable developments as we are finally making headway and our collective efforts will pave the way for this journey which will require each of us to take TOGETHER in order to be victorious.
Blessings to all & best wishes for a Happier and Healthier New Year in 2019.
~ The Pain Warriors Unite Team