Government Data Versus Government Policy

Government Data Versus Government Policy

By Angelika Byczkowski.

It’s truly astonishing how our schizophrenic government can straddle two utterly incompatible versions of reality.

On the one hand, the government collects drug overdose data and creates beautiful graphics and charts that show it’s now illicit fentanyl, not prescription opioids, driving the overdose crisis.

On the other hand, the same government is still creating new policies to limit the use of these prescription medications, supposedly with the goal of stemming the overdose crisis, which is no longer driven by prescription opioids.

Angela Byczkowski

Opioids are framed as “evil”, and any use of them and subsequent physical dependence on them is framed as a “substance use disorder” (thanks to the DSM-V). This taints even medicinal opioids with the spectre of addiction, putting them into the same category as the most famous opioid of all: heroin.

When the leading anti-opioid activist, A.Kolodny, reinforces this thinking by calling pain medication “heroin pills”. This effectively declares open hunting season on opioid prescribers for the Drug Enforcement Agency (DEA).

In the form of prescribed medications, opioids are carefully counted and documented, with this information held in various massive databases, like a Prescription Drug Monitoring Program (PDMP). Patient privacy is routinely violated as law enforcement officers look through these databases at will, without a warrant.

DEA agents only have to look in a database and run a search for the doctors prescribing the most opioid milligrams. And the doctor’s name and address is documented right there with those numbers.

This makes it easy to hunt down doctors who prescribe more opioids than average. Regardless of whether it happens to be a pain doctor or a dermatologist, the numbers reign supreme.

They assemble a SWAT team, call the local news to give them a heads-up, and stage a “raid” on a peaceful doctor’s office, executed as though they were going after a “real” drug dealer who is usually armed and dangerous. They arrive at the office in full body armor, bristling with weapons, terrifying doctors, staff, and patients. It’s a great photo op.

But completely ineffective.

The same government that’s forcefully reducing the availability of prescription opioids has itself published data that shows current overdose deaths are mostly from illicit fentanyl, not prescription pills.

Fentanyl is a manufactured opioid so strong that doses are measured in mcg, mere millionths of a gram.

From Wikipedia:

Even those with opiate tolerances are at high risk for overdoses. Once the fentanyl is in the user’s system, it is extremely difficult to stop its course because of the nature of absorption. Illicitly synthesized fentanyl powder has also appeared on the United States market.

Because of the extremely high strength of pure fentanyl powder, it is very difficult to dilute appropriately, and often the resulting mixture may be far too strong and, therefore, very dangerous

Some heroin dealers mix fentanyl powder with heroin to increase potency or compensate for low-quality heroin.”

Even a little bit too much is deadly, and illicit drug dealers rarely have the technology to measure such miniscule amounts. Cheap fentanyl has slipped into all kinds of illicit drugs, as a powder or even pressed into pills. The CDC’s own graphs show this is the cause of ever more frequent “opioid” overdoses.

But to find the drug dealers peddling this lethally potent mix is difficult, time consuming, and extremely dangerous. These guys know how to hide and they fight back with even more powerful weapons than those used against them. They are ruthlessly violent and rule by terror.

In these circumstances, it’s no surprise the DEA prefers going after well-documented doctors and their patients. With conveniently measurable numerical data – and none of that messy descriptive data about pain and suffering – milligrams of opioids prescribed becomes the de facto measuring stick for success of “opioid policy”.

To be seen as righteous warriors slaying the opioid demon, policymakers want numbers to prove it and prescription databases provide them.  Aspiring politicians can show concrete proof that the numbers of opioid milligrams are changing as desired.

That these declining numbers don’t correlate with the surging rates of addiction and overdoses doesn’t seem to be noticed, certainly not by policymakers, and rarely by the media, which recklessly ignores this truth in the pursuit of a good addiction story.

We hear only about milligrams of opioids – the levels of pain they are prescribed for are literally never mentioned, as if dosages were completely unrelated to a patient’s medical condition.

The arbitrary numeric dose ranges for pain patients set by the CDC are not based on any real-world data. They were simply “decided by committee” as though all those milligrams of opioids were prescribed for some generic “average” person with “standard” pain.

Fewer milligrams prescribed is considered success in the drug-war. And in corporate health care, doctors are being bribed with bonuses to ignore their “healing” purpose and effectively torture their patients with unrelieved pain.

Chronic pain is the only medical problem for which it’s considered “good practice” to deny effective medication without solving or even addressing the medical issue the medication was prescribed for.

All else is pushed aside by the single-minded focus to bring down the milligrams of pain relief prescribed, while the resulting misery inflicted on patients is just “anecdotal” and apparently, irrelevant. Doctors are not treating patients, they are treating medical charts.

Perhaps worst of all, the patients themselves are blamed for taking their necessary and prescribed medication because their pain is considered immaterial. Most believe that pain patients “caused” and are still “causing” the overdoses, even when those are from illicit street drugs.

The insane persistence in refusing patients the pain relief they need brings to mind a frightening scenario:

“Those who torment us for our own good will torment without end,

for they do so with the approval of their own conscience”

-CS Lewis

Until she was disabled by progressive pain and fatigue from Ehlers-Danlos Syndrome and Fibromyalgia, Angelika was a high tech IT maven at Apple and Yahoo, and a competitive endurance athlete. She lives in a rustic cabin in the redwood forests of the Santa Cruz Mountains just up the hill from Silicon Valley with her husband and various 4-legged kids.

When her pain allows, she spends her limited energy researching, writing, and blogging about Chronic Pain, EDS, and Fibromyalgia at http://EDSinfo.wordpress.com and writes poetry to sustain her sanity.

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Authored by: Angelika Byczkowski

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33 Comments on "Government Data Versus Government Policy"

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So true Angelika, what’s going on now is nothing less than domestic terrorism. As far as I’m concerned these people being need to be tried, convicted and thrown in jail for the next hundred and fifty years. What kind of people inflict pain on the elderly, disabled and Wounded Warriors for absolutely no valid reason. Terrorist do.
Great read thanks for standing up for people in pain.

Terrific article!! Totally agree! Thanks & I appreciate your many efforts!

I’d also add that what is being ignored is the fundamental moral and legal illegitimacy of these drug laws

The CS Lewis comment is definitely spot on! I agree with everything in your article, thank you.

Thanks ,great article. I would like 2 comment 2 Maurrean K’s post regarding her stating ,” chronic pain patients don’t show addictive behavior til pain meds r reduced”. I don’t know why she feels this way but not everyone has an addictive personality. It’s like saying everyone who drinks alcohol is an alcoholic. I can’t understand this thinking????? Everyone’s personality is different. If doctors spend more time with patients & their families they would have a better understanding of their patients behavior. Most people I know don’t take their opioids if they don’t have pain that day.The opioid epidemic has become a CRISIS for the chroinically ill/ disabled.Regulations r fine but let the MD’s who know their patients do their jobs.

Wow, your compliments feel like a shower of smiles 🙂 Thank you so much!

I’m so happy to hear that my viewpoints aren’t just echoes in my own head, that my words resonate, that I’m articulating the views of other pain patients.

With all your supportive comments, I’m thinking of sending this to my Congresspeople… maybe a local newspaper?

@Missy – your kind words send my spirit soaring.

This is the best, most honest article I have read about the way opioid deaths by heroin and fentanyl, are not reported enough as the main cause of opioid death here. There is no way a pain pt could oD on fentanyl(bootleg fentanyl) unless they could not get pain management.

Wow! Angelika reading your comments was so cathartic. It’s like what I’ve wanted to express myself, but could never put the appropriate thoughts together. You obviously did your homework and put out the best defense of pain patients and doctors I’ve ever read. I’m literally overwhelmed by your common sense article and the way it was beautifully delivered!
I wish every committee member, congress & the senate, our president and especially A. Kolodny (the anti-opioid crusader) would read your article. Of the many wonderful points you made I loved the visual you made of SWAT, all decked out for war, charging into doctors offices, scaring the hell out of everyone so they can drag a poor doctor out of his clinic and leave patients with no recourse and a doctor’s career ruined! Meantime the street dealers, pushing the REAL deadly drugs don’t seem to be mentioned at all. The governments single minded focus and publicity mission is on chronic pain patients & their doctors!
I’m astounded by the new prescribing guidelines as well. I know we have some doctors (angels) trying to help, joining in confronting those in power with facts. But it’s far too few. There should be dr’s in every field
joining us and using their experience & knowledge to fight back. Oncology, rheumatology,
orthopedist, anesthesiologist (our pain dr’s) to name a few. How we got to this place and time was about money, why we stay
here is about willful
disregard of facts,skewed, if not completely false, statistics and too many
who know better not
joining the fight! Bless you Angelika for an amazing article!

Bravo! Beautifully written article. Let’s try to get this into the hands of our lawmakers ASAP before proposals become laws set in stone.

Best I’ve read. Thank you.
Didn’t I hear that Human Rights Watch was looking into all this inhumane treatment of chronic pain patients and cancer patients that are left with inadequate pain relief or none at all? Laura Mills millsl@hrw.org
They want to hear stories just like this.

Thank you so very much for the facts. And I was thrilled that you wrote exactly what I’ve been trying to raise awareness of the real problem and exposing the truth about the lies they want you to believe to hide their true agendas and us chronic pain sufferers are the ones most affected but nobody mentions us and it’s inexcusable to ignore our pain that is torturous. This should never be allowed in a so called democratic nation. Ludicrous !! Wtf? And are we just supposed to be ok with it?? Hell no! Time we fight for rights to protect us. It’s bs and makes my blood boil when I think about it.

Excellent! Thank you!

VERY WELL articulated Angelika. It has been very well established that in the last year and a few months for civilians, and longer for our veterans that the “intended” opioid MEDICATION reduction to one and all patients to slow the drug overdose statistics, patients now face no “good” options to manage our lifetime, continuous, incurable pain. The drug overdose rate still continues to rise even with opioid medication reduction for many, many, patients with documentation that a tailored dosage for a particular pain managment health issue has been nothing short of 100% beneficial. The agencies that are the “experts” on drug abuse are torturing well established benefitted patients with resposible prescribing and responsible patients usage as the last resort, therapy to manage our relentless pain. The term “opioid crisis” is nothing but propaganda for the war on drugs. Fine, wage war on real killer drug dealers but, stop the threats on our doctors that have done professional work and responsibly, appropriately prescribed opioid medication as the very last therapy for so many patients. How about calling the issue an “illicit drug overdose crisis”. It is MUCH easier to call all pain management patients drug addicts and set a maximum medication limitation with disastrous results. Thank you Angelika for your correct insight that so many pain managemnet patients KNOW, that you tell truth!

Such a great article and a wonderful summary. Thanks for taking the time to summarize these important issue.

I agree with everything you said. The government is just being short-sighted and ridiculous! And tge chronic pain patients are left in thrme middle. We take our medication as prescribed and usually just go to one doctor and pharmacy! The illegal powdered fentanyl is cut with God knows what and is at God knows what strength! The same thing with heroin on the streets. But the CDC, FDA, AMA and all the government committees have GOT to acknowledge that tgere are 29 million chronic pain patients in the country, that diseases like CRPS, Fibromyalgia, etc. DO exist, and suicides are happening right now by patients who can no longer get their meds abd can’t stand the pain!

This is in reply to the person just posting the article against opioids. This is like talking to my pain doctor. I am in kidney failure using over the counter meds to cope after voluntarily cutting my opioid dose in half and going thru an unsuccessful back surgery, hoping it would help my pain. My pain doctor said “you are better off with NSAIDS than opioids.” Last time I saw him I reminded him he told me that. I told him worst case opioids would have ended my life peacefully in my sleep. Now NSAIDS have put my end of life in years of painful dialysis and untreated pain. He looked at me blankly and said, well opioids are bad news!!
Who do you believe? The patients or these brainwashed doctors??
With pain meds I bowled on 2 bowling leagues, and went about life almost like a normal person. Sure, a night of bowling meant the next day in bed. And I also use heat, ice, regular massages, memory foam mattress, lidoderm patches. Gentle exercising and physical therapy. But with my current dose of pain meds I stay in bed until 3 (if I move around I will need my pain medication), take one pain pill and take a power walk with my husband. Sit on heating pads and let my back settle down, and then cook dinner. That’s my life! Oh and I make it to physical therapy and exercise. That day there is no dinner made.
Travel? No way. Go out for the evening for a celebration? No way. Have a glass of wine? NO, I’m a responsible pain patient. Keep enough pain med in case I can’t take this pain and end my life, You bet!!

Quit relying on these Opiods are Evil for Everyone articles and LISTEN to the patients.

Could not have said it better
It is malpractice to not treat pain and opiods don’t have a dose that can cause renal , serious bleeding (nsaids) or Tylenol (liver) and when in severe pain patients will take more were as if treat with opiod after trying safe dose. Not all pain conditions respond to opiods it is reasonable to use when it works which
Is most pain Attorney General Jeff Sesdions what on this sight reported to have said something like chronic pain patients take two Biufferin go bed and buckup. I guarantee anyone in high levels of government or wrath ly if they
require opiods or there family the VIPs will get whatever is necessary regardless of arbitrary guidelines It should not be different in any city or any state and doctors who have cut cold turkey no wean on chronic patients should loose their medical license and I don’t believe in suing but to cause worsen unnecessary pain is unconscionable!
Sadly the “experts” on panels at cdc conferences and task forces are mostly if not always addiction specialists or sadly a
parent loosing loved one to either illicit or stolen opiates from someone
I lock them up
The real maddening is several cities is WA state have tried or want to have vending machines or mobile trucks for sterile needles for heroin users but want take away or scare via DEA legitimate pain doctors
A pain doctor would write more prescriptions and higher doses unless they are without humanity like UW pain clinic I heard from a doctor will give zero opiates
Cancer is horrible but not the only painful illness and with advances often thankfully can be cured but may have chronic pain from treatment years back or since
Many pain conditions are often more rare illnesses or from several surgeries or car accident none of the fault of patient and really should not matter; but having to live with untreated pain can lead to chronic pain or suicide which has increased in chronic pain
Every big clinic should have trained medical pain doctors physician assistants and or ARNP nurses and they should get paid better It is hard to find a pain doctor willing give medications/opiates More money in procedures and I don’t mean for patients it helps
An implanted pain pump as part of treatment but many just want do steroid injections over and over $$$ Finally remember addiction is an emotional need .“drug seeking” I hate that statement it is usually what some call pseudo addiction because poor patient is under treated.

Maureen Keilian,

You seem to be trolling information, that is obviously skewed to the people who claim that all of us, on daily opiates, are addicts. That judgmental attitude might come back to bite you! Karma can be bad. When there is that much ignorance, we cannot expect anything truthful coming out of such articles. You don’t seem to have to deal with severe intractable pain. I hope that God forgives me, for my thoughts. I just pry that the pompous people have to deal with chronic pain, some time in their lives! I tell you how you can feel the pain that patients with neuropathy feels. Put on TENS unit and turn it all of the way up, and that is what my neuropathy feels like without treatment. Dose is patient dependent. It depends on how the medication is metabolized. but, we have plenty of couch potato quarterbacks who have all of the answers. It is sad to see people spreading disinformation that results in mistreatment of patients, and loss of life, from suicide, when they cannot get adequate relief, from their misery. And in the end, is preventing suffering, and misery, not what we doctors are supposed to do? We sure as heck can’t stop death! Having participated on both sides of the pain problem, I know that suicide is not considered a bad thing. That would be classified as “preventable suicide”. Is that not murder?!

My doc, in his 70’s, suffered the humiliation of such a dea raid. Ya, just like the post said. Arrested for Trafficking in Narcotics. Full press release, etc etc. Raid on his office. Why, well dumb [edit] was treating some long term patients for pain, so they wouldn’t have to travel to a pain clinic. We ain’t talking about 100s of prescriptions, just more than the average. He cared, he helped. Staff didn’t file the right paperwork so became public enemy #1, and was arrested as if he was selling prescription pads in an alley. Wont say his name, but pray for him.

The split between political fantasy and objective reality grows even wider when one examines the hard science for which our Government spends money. After 30 years of research, it is now proven beyond the shadow of a doubt, that morphine and anandamide are normally present in the human body. We have opioid and cannabinoid receptors in our brains and other organs, that respond to these two substances. Abstinence from them is literally impossible, because we make them in our own bodies.

Yet the political fantasy continues to promote abstinence as the only solution to “addictive” behaviors.

Why is nobody ever interviewing the NIDA-supported scientists at Stony Brook University who made these important discoveries?

Who decided that Dr Kolodny was the pre-eminent expert?

Perhaps people should look into growing their own poppies. They’re easy to grow (and it’s currently planting season!), will grow virtually anywhere, and are not illegal unless/until the milk is extracted.

Lots of info available online, if one was interested in digging a little…

Nancy, why can’t we get these idiots on Capitol Hill to listen to us the Chronic Pain sufferers. I want to scream at the top of my lungs how in previous administrations the war on drugs didn’t work. I know there are some bad doctors out there running pill Mills and rightly they should be punished. But don’t put us under the same umbrella as the addicts on the street whom are causing the majority of the overdoses. There is a bug difference between me and them. I take Percocet to be able to function “normally” and not to get high. This is the difference between me and an addict. The government needs to stay out of my pain management period!!!

It breaks my heart to hear stories of patients being denied pain relief.

I had a period of a few months where a neurologist started “tapering” me and I ended up in a suicidal depression. Anything besides lying down caused pain, and sometimes the pain didn’t stop when I laid back down.

I was saved by dumb luck when my PCP said she could prescribe them for me, but I’ll never forget my misery or the rage I felt that a “doctor” had believed this was “best for me” – because, as she told me, “opioids are bad for you”. What nonsense.

When I hear of other patients being denied, I feel “survivor’s guilt”. It makes me so painfully aware that the same could happen to me next month, or the one after that, or after that…

Maureen, I want everyone to know the difference between dependence and addiction, and memorize it to dispel the lie being perpetrated by the media, which even the Dr.’s believe.

ADDICTION: The healthy person taking opioids for reasons other than pain will have empty neurotransmitter receptors that are flooded with Dopamine the feel-good chemical creating Euphoria!

DEPENDENCE:. A person in pain will have receptors overcrowded with pain signals that are neutralized by the Dopamine creating only the sense of effective pain reduction. Pain SUFFERERS DO NOT GET HIGH!

Having said that I have CRPS from a crush injury to both legs and feet 19 years ago resulting in excruciating nerve pain. It also left me with severe back and hip pain NEITHER of which my Fentanyl patches helping the slightest. I asked my Dr. Why? and he said they didn’t know.

There is another lie the media is putting forth and that is: ” A study was done showing that opioids are ineffective for treating chronic pain and that Ibuprofen and Tylenol are more effective.” That study was for BACK pain ONLY!

Angela, your Article was brilliant! Thanks for the information.

Great frame of wording on the differences and proof that I, the chronic pain patient, the one who suffers not only with my never ending, unrelenting, intractable pain because my medications have been taken away, my quality of life has been taken away, and now my right as an American Citizen with a disability has been taken away. Because of the CDC and DEA I am being forced into an unwanted surgery because I cannot take the pain any longer from damage in that area. I just spent 10 weeks in bed because my pain from C1-S1 has been so severe, many days I can barely walk, move my arms, turn my head or sleep. In 21 years I’ve gone through 5 spine surgeries, over 30 failed procedures, PT, acupuncture and so much more to no avail. The only thing that has helped my pain is opioids. In 2011, I woke up and couldn’t walk. I found out that I had 2 herniated lumbar discs that needed surgery, my spine surgeon didn’t want to cause more pain from another surgery that “would be the end of me and I won’t be able to handle any add’l pain,” he said. That 120 mg MME more than I take today. I’ve reached the ten week mark in bed. Not a day of quality of life again. I have to have lumbar surgery because I can no longer keep the pain down below an 8 every day from more damage to my spine. I’m furious and I blame the government for making my life a living hell and making me have surgery I do not want. I know if I were able to go back to the medication level I was at prior to the 2016 cut, I might be able to wait a while longer. I could control my pain with medication, but the government won’t allow me the option. I have to wear a neck brace backwards to keep my head still when I sleep and wear it forwards during the day. I have to wear a back brace that leads from the base of my neck all the way down to my hips for 5 hours a day. It helps with the pain until the brace comes off. Right now, my biggest fear is I will not be able to walk down the aisle with my daughter in 2 months. I cannot do this surgery and I don’t want this surgery. How would I ever stand any add’l pain than what I’m in now? I know I won’t and it will most likely put me in a wheel chair. This means I’ll have to sell my home because it has steps that lead into every room and a second floor. So, Mr. Kolodny, put that in your hat and eat it! Oh, and, Mr. Kolodny, you can buy my house too if you think that may help my pain.

This is one of the best articles I have read regarding chronic pain patients and the horrible torture being inflicted upon us!! Please send this to every Senator, Representative, the White House, etc.
This is the truth, the only thing I might add it that we are the taxpayers, the voters, and we are 100 million strong. We are looking for a HERO and we will vote for the person (s) that aid in our struggle!!

This document expresses the real situation so well. Please get it in the hands of Congress. Angelika has expressed the situation better than anything I have read before.

Great article…so sad that the truth is out there yet ignored!

That was a nice read. I would like to see some links when talking about statisticts.

Ms. Byczkowski, This is so very well put. Please StandUp for the cause as long as you have breath to breathe, fingers to tap, words to form. Just as you have here. A spectacular peice this is.

I’m a 24yr Crps/Rsds Survivor. I have had every treatment in the book & now just want to have some quality of life. I had my pain meds withheld in ’16
when the 1st CDC guidelines cameout. With no plan in place for any dependance or withdrawal symptoms.

I’m not in much of a position anymore to fight for others, I must put me 1st. I somehow manage to Live alone with upper & lower Crps/Rsds.

This may end up being the quote of the year for Pain Sufferers!!!
Thank you

Those who torment us for our own good will torment without end,
for they do so with the approval of their own conscience”
-CS Lewis

Angelika Byczkowski. what a thought provoking article . Beautifully written.
We are in a sad state ,when lies are being made into facts by a little bit of a word change here and there.
/www.countable.us/articles/3309-trump-unveils-three-pronged-opioid-plan Trump this is a must read article from countable

Angelika:
Your article is one of the clearest explanations of this war on patients I have seen. I wish everone reading this would copy it and send it to their elected officials and to their doctors, with your permission. I am living through the hell of watching my sister (who was literally crushed in a car accident that took the jaws of life to free her) have her pain meds cut in half with no tapering and the threat to keep cutting them down every month. She told me a few days ago she did not know how much more pain she could tolerate. During the months since the cuts she spends most hours moaning, crying out from pain and then just laying in bed. She ended up in ER- the FIRST time since the accident because taking too many OVER THE COUNTER MEDS had caused internal bleeding. We never had anthing like this on the opioids. We don’t know how she can tolerate this-literally begging her pain management dr. to reconsider the drastic cuts only garnered his off the cuff “We have now learned patients don’t need high doses of opioid anymore- you will adjust to the pain!” Well, she hasn’t adjusted in months and this incredible woman who has endured so much is now being tortured by the very docs who said they would help her after the accident and all the surgery. I wish some high powered law firm would decide to represent the patients for the bodily harm and torture being done to them when they have done nothing wrong. My sister had No choice to get pain control to live through the agony that will never end-and now she has No choice as the docs/CDC etc., are turning her into a low functioning bedridden disabled person. Something she never was when her pain was relieved and she could function! This is immoral what is happening to chronic pain patients.
Please anyone reading this do all you can today to fight all this madness before all these regulations become laws.

Lives are being compromised by opioid dependency.
Many chronic pain patients will not show addictive behaviors until medications are reduced.
Plenty of misinformation in this article, and much ofvbit damaging to chronic pain patients.
https://www.politico.com/magazine/amp/story/2018/03/13/opioid-overprescribing-is-not-a-myth-217338?__twitter_impression=true