How to Clear Up the Opioid Confusion

How to Clear Up the Opioid Confusion

Government, media, and PROP especially continue to confuse the young addicts who shoot up heroin and snort fentanyl to get some presumed euphoria, with chronic and acute pain patients. There is no correlation between the number of opioid prescriptions and the number of overdose fatalities, period. No correlation means there is no causal relationship.

Worse, regions that have cut back hard on pain medication have driven up overdoses, as former pain patients are forced to resort to street drugs for analgesia or commit suicide due to unmanaged pain, thereby exacerbating the overdose problem, which in typical fashion causes more tightening of opioid regulations, and producing more deaths. Do these people belong to a secret drug cartel or something? It is purely speculative, but otherwise none of this makes any scientific sense.

Not only are such policies torturing legitimate victims of chronic illness such as sickle-cell anemia, terminal cancer victims, hospice patients, and those like me who inherited autoimmune disorders which destroyed my joints, fused my spine, and injured my spinal cord, such ill-conceived regulations are also not helping the addicts who are not effected by tighter government regulations, prescribing limits, and other ignorant measures to rein in overdose fatalities.

Jeff Edney

Locations that report success in reducing fatalities in large measure inevitably report that such success stems from making naloxone more available, not by reducing prescriptions for opioids.

Why not do something that actually works and without hurting anyone, instead of begging government to take over all health care decisions away from physicians, who actually have the training to know how to administer pain medications, as opposed to a group of ex-attorneys now turned bureaucrat who seem to not comprehend statistics. One DC politician recently claimed that 40% of Americans are not just taking opioids, but are actually addicted to them. This can of reckless commenting in our US Congress fuels the poor decisions that only do harm.

How about instead of imposing ever tightening restrictions on physicians and prescribed analgesics, we do two things that might actually solve the problem?

  1. require all insurers to make naloxone available free of charge to any pain patient, acute or chronic. It is a low-cost solution that many reports corroborate actually works.
  2. pass a national chronic pain patient bill of rights to prevent or reverse state legislation erroneously based on the federal government’s CDC “guideline” issued in 2016 that the CDC had to clarify on April 9th that the 2016 “guidelines” were never intended to apply to chronic pain patients, and any such use to was outside the scope of both the CDC recommendations and modern science. The FDA followed up the CDC announcement warning the next day of harm from acting erroneously on the CDC regulations and forcing chronic pain patients to taper or stop taking long term analgesics.

Since the federal government initiated this mess, they need to step up to fix it by protecting the people they have inadvertently harmed. Why do we have a government if it doesn’t protect those who cannot protect themselves, the fundamental supposition of modern society?

Jeff Edney is a chronic pain patient with ankylosing spondylitis, cervical myelopathy, and systemic generalized osteoarthritis that damaged every major joint in his body from the waist down. He also edits the Chronic Pain Patients News Source page on Facebook, which you can see here.

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Authored by: Jeff Edney

Jeff Edney is a member of the Alliance for the Treatment of Intractable Pain. Jeff is a former Director of Engineering (disabled), chronic pain victim & advocate and is married with pre-med son.

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Heather

Jeff,
I agree so much. Thank you for writing this. I am worried for friends and horrified by what’s happening. People who are scheduled for surgery take for granted that their pain will be adequately managed too. I wish the part.pf the population without chronic pain could see things from the perspective that it isn’t just happening to a bunch of chronic pain patients who are probably actually addicts… Opioid and “addict” now are seen as intertwined, inseparable by many people who don’t suffer with chronic pain.

I also have OA that is widespread and my mother was disabled by it in her 50’s. I feel as if something systematic is occurring but doctors tell me no. I think I had an… antibody…? test for anyklosing spondylosis that was negative… my memory is vague.

I wish you well and I am sorry you struggle with chronic pain.

Kathy

The money goes into the polititions’ pocket and to the lawyers

Janice

With all the factors of this chronic pain problem, didn’t the FDA as well as CDC okdoky opioids ? The litigation of the drug makers apparently recieves a hasty fine and once that fine is paid to the govt where do those billions go,? I ask you… Where do the billions in dollars go paid in fines for the govt accusations toward ” pharmacy” go??? Shouldn’t any residual money’s or fines n their payments go toward helping those in cronic pain with n for discovery of new alternative drugs. Or does our govt get to win billions off a case in court against big pharmacy and line their pockets while acting like they care about us ” opioid ” users who could become addicts . Let’s face some facts, no cronic pain patient is addicted to collecting money by the billions the way govt special interests are…..

Cindy

To Cindy
I just wrote an email to NPR ( national public radio), to ask them to at least look at the other NPR ( national pain report). I have written them a couple of times as well saying their reporting on opioids is incomplete.
Please write them and let them know you are a listener and their reporting is incomplete when it comes to the “opioid crises).

Alyssa Langer

Beautiful post! Thank you for speaking up and educating others!

I had one surgery to help with pain that has not worked ,surgery failed was told need hip replaced & need 3 other surgeries. I no longer receive pain meds due to pharmacy mistakes on csmd, which i got corrected but has done me no good bc state i live in is one of the strictest state regulations. I will not have my hip replaced nor the other 3 surgeries. I suffer 24/7 and surgeon will not give pain meds due to failed surgery just offers more surgery. I am too afraid if the other 3 surgeris fail & leave me worse off like i am now. No thanks . The 1 surgery i had Hospital made $35,000 surgeon made 10,000 so did his asstistant, don’t kn what anesthesiologist made. So they will be missing out on more than that on two of suppose surgeries and make the same on the 3rd surgery. The only 1 be happy about this will be the insurance company not having to spend the $. I lived in chronic pain 28 yrs now the surgeries the physician say I need to have, All for the promise that it might make me better but no guarantees that I wouldn’t have scar tissue pain or continual tendonitis pain or a failed surgery again Etc. I choose to live with what I’ ve been dealing with & learn to live with now the extra pain caused by surgery.

Sara Bowerman

I completely agree with Jeff Edney on both his points, especially on #2. This needs to be done as soon as possible. I live in a very small town and have heard of several suicides of chronic pain patients who were dramatically cut back or completely cut off from their pain medications. I fight with that decision more often than I want to admit, because I was cut back dramatically. I don’t DARE admit that going through my head though, because it will be turned on me with “it’s your addiction talking, so you can’t have the meds anymore”. There is a HUGE DIFFERENCE between drug dependency and mental drug addiction/abuse!!! One pain pill a day doesn’t even get me through daily household activities, let alone being able to clean my house regularly. I now basically live in filth, which adds to the depression and PTSD I have struggled with for years before my pain issues became so prevalent that I had to make the decision to take opiates that had been offered years before. My physical issues continue to worsen, while my doctor tells me he cannot prescribe any more than 30 per month, because he will not risk loosing his medical license. The whole situation is beyond frustrating. It’s downright maddening.

Old-Goat

The problem is the federal government is impotent in controlling the flow of illicit drugs and substances. They always have been impotent and always will be, since you can’t legislate bad behavior in a free society. So they regulate what they can, even if its not the problem and has no effect on it. We should be asking why while people have been dying from illicit fentanyl for most of a decade the DEA only tightened up on this illicit fentanyl in 2018. It would be slightly less insulting to those of us in pain if the had taken concrete action to reduce the dying while we are being tortured, but they didnt bother, focusing only on what they can control. And it was completely ineffective, deaths didn’t slow down until the DEA bothered to address the real issue. How blind can everyone remain to these facts?

I would also question the scenario that portrays CP patients going to street dealers and black market to get illicit drugs. No studies back this behavior up, its hearsay without a shred of evidence. I am not saying many CP patients wouldn’t consider the black market, but by the time you exclude those too afraid, too poor, too old and lacking the means or know how to go about scoring drugs on the street, how common can it be? This is BS, we are saying to the public, “we ARE drug addicts, but its okay because we mean well.” I don’t pretend to speak for anyone else, but I find the idea that I would participate in the very problem that has been created for us more than a little insulting.

Cindy

REQUEST FOR HELP TO ED COUGHLIN AND ANYONE ELSE WHO IS PROFESSIONAL IN THE PAIN FIELD –

On today’s show “1A” on NPR (national public radio), the hour was spent about Purdue and the Sacklers and how RX Opioids are the nations’s scourge.

The 1A show focuses an entire hour on one subject, and so is very in depth. This was its umpteenth show about the opioid epidemic.

As always, the host read one listener comment expressing concern for legitimate CPP’s, but as always, that barely registered as a footnote, and the host of this show, who I generally admire, continues to let me/us down on this topic.

Today’s guests were the N. Carolina AG, and then, even worse, was WAPO health reporter Lenny Bernstein, who near the end of the show, made this terrifying comment: He said that yes, there is a place for opioids — for cancer patients; end of life; and post-surgery.

That was it. Those 3 short term situations. For this WAPO reporter, we simply do not exist.

Given how prominent Wapo is, I find this terrifying.

I left v-mails to the show a few times during it; none were read on-air.

The last time 1A did one of these shows, I emailed them, explaining our situation and asking that he do a show about us.

After today’s show, I am even more frightened by the influence the show and that reporter exert.

So, I’m asking Ed, Red, and all your friends to please contact 1A and ask to be on the show.

I’m also asking everyone who reads this to do the same, even if you are simply lay people CPP’s like me.

Other NPR shows as well, but because 1A does a full hour on one topic, and will do more of these shows (he said so today), I think that 1A is where to begin.

Anyone reading this can contact 1A at : 1A@wamu.org or 855 236 1212

Thank you.

Adam Selene

The worst enemy in being recognized as patients is the media. The CDC retracted their statement, but the DEA, the Media, and PROP continue to portray severe pain and intractable pain patients as wild-eyed drug addicts slavering and scheming to get their next “fix”.

https://www.acsh.org has presented repeated articles concerning this issue and Dr. Josh Bloom has spearheaded the campaign to have pain patients viewed as simply that: patients in pain that need treatment. Perhaps if we all placed those articles on social media, it would help to present the other side of the coin !!

Cindy

Replies to some below posts — to Lisa Hess and others —

Lisa, I saw your post on STAT, and posted to you about lots of OTC remedies for constipation.

To others, I agree that state law is also a problem, but if there’s a federal bill of rights, that should help

Cindy

Great column. Love the idea of a Pain Patient Bill of Rights.

But, I question your point about Naloxone. My PM told me that legally, he had to call in an Rx for me, but I told the pharmacist that since I comply with my Rx’s, I have no concern of overdosing and so had no intention of spending the $ on it.

I imagine that most CPP’s feel this way.

If I ever start to get confused about taking the right pills at the right time, which could endanger me, then I’d want it. But otherwise, why would I ?

At this point, while I am still mentally competent, if I ever do OD, it will be intentional — which would only be if I lose access to my meds again — and in that case, I won’t want Naloxone.

Cheryl

I agree with Lisa about the Class action law suit. Maybe they will finally listen to us. This has been going on too long. Great article!

Excellent article Jeff with very clear proposals on how to fairly deal with this issue. May I propose you personally send a letter to Dr. Douglas Throckmorton (deputy director FDA/CDER in Silver Spring Maryland) outlining your thoughts and proposals. Some years ago I proposed similar actions to him and to his advisory panel during the PROP hearings here in Washington. Although well received at the time, they apparently must have fallen on deaf ears to those above him. Either that or Dr. Throckmorton fell victim to PROP’s genius plan that politicized the issue to an ignorant congress. One proposal he appeared to agree with was the implementation of a chronic pain ID card. This card would clearly identify patient candidates and thus clear them for well managed opiate treatments without question, even if they’re DEA agents, Pharmacists, Hospitals, etc. Pain management physicians would apply for the government issued ID-Card through proper channels (either their Health Insurance Providers, State Boards, and/or the DEA) on their patient’s behalf. An embedded Chip and Target Bar Code for instant ID scanner clearances would help prevent counterfeiting. Yes I agree it does present to have ethical conflicts, but it’s a stress relieving Get-Out-Of-Jail Card for us true candidates who depend on well managed opiate intake to make it through each day.

Either way, I believe it’s worth a try!

Kindest regards
Dennis

ElizabethR

I absolutely agree! It should not be difficult to differentiate between a 20-something who uses illicit drugs recreationally for no medical purpose and a patient living with long-term, incurable pain who takes prescribed medication responsibly, monitored by a physician. Yet, somehow the all-knowing bureaucrats at the CDC/FDA/DEA, egged on by organizations such as PROP, continue to misclassify, potentially criminalize and completely terrify patients who need opiate meds.

I’m 82 years old with several ongoing painful medical conditions. I take a mild opiate at 60-75 MME. It’s not sufficient to control my pain in a major way, but it does help. Remaining functional is essential so that I can continue to live independently and care for my soon-to-be 90 Y/O spouse, our 2 senior cats and our household.

I would be so grateful to spend whatever months or years that remain to me in less pain. I’d hazard a guess that very few of the folks making decisions that totally control my quality of life have experienced serious pain on a daily basis that will NEVER go away (and, yes, I’ve tried a variety of non-opioid meds and “alternative therapies”).

maxlet

I really wish I could believe any more that sense, sanity, or science could sway this national program of pain patient eradication (I used to be completely anti-conspiracy theory…that’s sure changed in the last few years, at least on this one subject).

I worked my whole life in science, decades in basic medical research. The anti-science, anti-fact tsunami has not only destroyed my life thru loss of pain meds, it’s driving truly off the deep end with rage.

Alice Carroll

NPR’s Fresh Air interviewed Stephen Kinzer who has just written Poisoner In Chief: Sidney Gotlieb and the CIA’s Search For Mind Control. Gottlieb was the CIA’s master “poisoner in chief.” As head of the MK-ULTRA mind control project, he directed brutal experiments at secret prisons on three continents. He made pills, powders, and potions that could kill or maim without a trace and brought LSD to the US in experiments done on collage campuses, jails (Whitey Bolger was given LSD every day for a year) and the military. He paid prostitutes to lure clients to CIA-run bordellos, where they were secretly dosed with mind-altering drugs. The CIA was trying to find a drug to destroy a person’s mind and drugs to make subjects tell the truth in interrogations. Gottlieb’s reckless experiments on “expendable” human subjects destroyed many lives. He worked with ex-Nazi’s who had begun experiments at Dachau, poisoning people with Saran Gas. During his twenty-two years at the CIA, Gottlieb worked in the deepest secrecy. Only since his death has it become possible to piece together his astonishing career at the intersection of extreme science and covert action. Gottlieb managed to destroy most of his records and escaped prosecution.

This is what our government has done in the past. Scary. Many of us have wondered if Chronic Pain patients aren’t being “written off” as they are considered a drain on society. I for one believe we have much to offer. We know how to endure with strength and push on with resolve against the odds. A sane country helps those who are ill and in pain knowing that a healthy country is a strong country.

Millions of Americans have been prescribed opioids for years for pain, you got them when you had your wisdom teeth pulled! We are not all opioid addicts. From my experience as long as you are prescribed opiates properly and monitored they are an excellent tool against long-term chronic pain. That is my truth.

Denise Hedley

I love the idea of the Chronic Pain Patient’s Bill of Rights.

For the first time in over 2 years, my doctor actually gave me a 15 count of Percocet. that was two weeks ago. I have 8 left. But I have to admit, when I have give in and taken one, I was more functional than I have been since my doctor stopped my script.

Disturbed

Thank you too Jeff for your article it is so true I am at my wits end with just getting by after the government has condemned people like you and me our government sucks for what they have done too us I am planing on putting my 2 senators names from Ohio and the US government as the cause of my death on my tombstone when I die before I need too because of the lack of care and disrespectful behavior of our politicians in America I’m so sad my life is going end this way because I’m permanently disabled and no longer treated like an American the word American means nothing any more may God Bless our soles and care for us America isn’t going too

Deanne Daniell

Maybe it is time to start ARRESTING MEMBERS OF CONGRESS FOR PRACTICING MEDICINE WITHOUT A LICENSE!!!!!!

Debbie Gray

Well said! Please share!

Debbie Gray

Well said! Shared ! Everyone PLEASE SHARE!!!!

davidkenberg kenberg

Thank-you for writing this for the real pain patients.You need to send it everywhere,You said it all and I’m very sorry that you suffer with a ton of pain.What you wrote made me cry because of how you wrote this.I have been suffering with full-body rsd-crps and its severe burning in my head,eyes,nose,mouth,neck,entire muscular skeleton ,bones,total body swelling and many more awful sensations.. I was told 10 years to late and my pain and severe burning is torturing me. This disease is number one on the McGill pain scale as one of the worst disease to live with and is life threatening..Iv had so many surgeries and lots of medical devices and titanium plates,fusions,fusion cages and I have 2 transmitter’s on both sides of lower back side and electrical wires from my neck down to my legs,2 paddles one upper and one lower,2 remote controls that have over 15 different sensations to adjust for pain and the wires send electrical impulses to the body .One for upper body and one from the waste to my toes.There spine stimulator’s.. They helped for 2 years.I have facet joint problems,degenerative disc disease.I’m literally burning to death with very severe pain and I reached out for more help like med’s that could help and after 18 years i need pain relief so bad.I have been researching for 15 years to help myself and taught my Dr’s with everything about this disease and it has helped a lot of patients.I’m a advocate as well.But now my Dr’s hands are tied behind there back because of what there doing to us.I’m very sick and don’t know how much longer I can take this.This is my worst nightmare..Thank-you for sharing and i hope we all get the care we all deserve soon.Send your thoughts to everyone you can.You did a great job.I wish you well.There has to be away we can get help.Its cruel and disrespectful ,and heartless.We write our hands off to get no where.I want to live but not like this.Look up rsd,crps.You wont believe what your reading.I still can’t 18 years of pure hell!!

Changing federal law is important, but I don’t think that would end state laws on the problem. I’m not a lawyer, but my 1965 government class taught me that between federal and state law, it’s whichever one is strictest has priority. What we need in Washington is amending the CSA (Controlled Substance Act) so it can’t be used illegally on medical professionals, as they are doing now. The CSA was written for illicit drugs brought in illegally. And we need people to understand that drugs are not the cause of addiction. They need to learn the REAL cause–lifestyle and toxicity–so they can prevent or treat in themselves or others. Then state laws will change as well.

Lisa Hess

What is now at 90MME Guideline is rumored to be reduced to 50MME come 2020. I’ve been tapered 3/4 of what used to work on my chronic pain. Like the author, I have the same autoimmune diseases he does and five more all that cause horrific chronic pain from head to toe and I’m in bed 80% of the time from pain and exhaustion from just trying to eat and take a shower. The new lawsuits to pharmaceutical companies are or will be causing bankruptcies and then not just pain patients but ALL patients will suffer because no one will be able to get the medicines that their lives DEPEND on to keep them alive. Instead of suing the manufacturers without any proof that they fueled this “Opioid Crisis” we should be putting together a Class Action Suit against the CDC for starting this who thing with their erroneous 2016 Guidelines, to the FDA for supporting them and the DEA for raiding our doctor’s offices without a shred of evidence. Fifty plus million chronic pain patients who are currently suffering for absolutely no reason except bigotry.

sharon l schmidt

The government will not fix what they have done because that would be admitting they made a mistake.

Pinks

So perfectly and beautifully written! Especially the last paragraph!!!!!

Gail Honadle

I’m putting off needed surgery on my hand I can’t handle any more pain. After 9 months of healing from pulling 10 teeth, removing bone spurs, the re-sculpting the jaw, I just can’t take any more. Now I’ve been labeled a Type 2 Diabetic from eating soft foods that can just be swallowed, and the Freaking denture still doesn’t fit right.

New Survey Data Confirm That Opioid Deaths Do Not Correlate With Pain Pill Abuse or Addiction Rates https://reason.com/2019/08/21/new-survey-data-confirm-that-opioid-deaths-do-not-correlate-with-pain-pill-abuse-or-addiction-rates/?fbclid=IwAR16IWU03wQ8opzjQUaAshUDth5a2epjUDkngmjNyAz5YkcoIh9kYfYUHmM
Fentanyl Flowing Into US Overwhelmingly Sourced From China https://www.theepochtimes.com/fentanyl-flowing-into-us-overwhelmingly-sourced-from-china_3046451.html?fbclid=IwAR1EX7MD3jPiwJ-CcB8RryqHvWQQ46pQx9yiDKuVr1E1Nj9NzOhZ5YbFTGo

Mexico Seizes 52,000 Pounds of Fentanyl From China
https://www.abqjournal.com/1274088/bust-takes-15-lbs-of-meth-and-2000-fentanyl-pills-off-the-streets-ex-state-police-fbi-say-defendant-used-uber-to-deliver-drugs-in-ne-heights.html

$77M Worth Of Cocaine Seized In New York In Crates From Colombia | The Daily Caller https://dailycaller.com/2019/03/11/77m-of-cocaine-seized-in-new-york/

Actually the most important step the Government can make, is to repudiate the President’s authority to make up drug policy out of thin air. Franklin Roosevelt started the practice, hiring some cronies to advising him on “narcotics” policy and they pushed to have cannabis banned. 3 decades later, Timothy Leary sued in court, got the cannabis ban overturned, and the Nixon Administration got Congress to pass the Controlled Substances Act of 1972, which remedied what had been unconstitutional about FDR’s anti-cannabis scheme. The problem with the 1972 Act is it required that some science be done on whether cannabis was harmful, and when those results came back negative, the Surgeon General was preparing to end restrictions on cannabis, as the Controlled Substance Act of 1972 required.

Nixon then issued an Executive Order, declaring a National Drug Emergency, and ordering the Surgeon General temporarily to do nothing, while the temporary emergency was dealt with.

That temporary emergency has dragged on for 45 years. The Medicare Act makes it illegal for federal workers to interfere in the delivery of healthcare…if Medicare doesn’t want to pay for something it may choose not to, but it cannot bar people from passing the hat, raising money, and helping someone themselves, whom Medicare refused to help.

DEA used this “temporary emergency” to invade doctor’s offices and ration pain care.

Seizing the moment, the Obama Administration rammed through VA restrictions on veterans’ healthcare, based on the infamous CDC Opioid Guidelines that CDC had no legal authority to issue! It was Nixon’s temporary emergency that gave Obama the power to ration pain care.

The cabal of neocons surrounding Donald Trump are no better. They love using Executive Orders.

Patients need to go to court and get a ruling, that Nixon’s “temporary emergency” should never have been declared. And then roll back every action taken because of it.

Diane Succio

I couldn’t agree more. After 8 failed back surgeries and a stimulator implanted my pain level is about a 9 without my pain meds.
The Government needs to crack down on China and the Cartels but we know they won’t. We know most Politicians are being paid by the Cartels so unfortunately Dr’s are being blamed.

John A. Davis

Jeff Edney,
I like your article but you left an important part out. No matter how much we try to get the CDC and FDA to change these insane practices it will not help if we do not get the enforcement division DEA to change their tactics with doctors and insurance companies tactics with patients and pharmacies.
What pain patients are fighting is the powerful lobbyist that fund the politicians. They actually are the ones that pull the strings, make no mistake.
Doctors fear the DEA because they control their license. Until you stop the DEA from making erroneous raids on doctors because they are prescribing over the CDC recommendation on MME without any evidence it is because these are chronic pain patients who have been on a regiment that is stable and are enrolled in a bonafide pain management agreement.
Remember always follow the money if you want to change something in our government. Everything else is just window dressing and makes for good articles.
Insurance companies are large means of finances and probably the holder of one of the most powerful lobbies groups.
If you want to change the injustices to chronic pain patients you must first expose who is controlling the purse strings to the politicans that actually will have the power to change the current regulations, actions and policies. Everything else is nothing more than window dressing.
I have had in depth conversations with my pain clinic owner. He makes no excuses he fears the DEA. All it takes is for the DEA to close one well established pain clinic to send messages to the rest. They pick older clinics where the doctors are close to retirement and have good reputations for helping their patents.
That is all that is needed to keep the rest of the clinics to march in lock step.
I think many fail to see the forest for the trees. The Obama administration’s opened the doors for the Insurance industry to control the purse strings.
It will take insider information to disclose this problem.
John Davis

Robert Stelzl

Follow the money…. It always to the inside of the pants pocket of politicens who do not give a damn about their constituents.

Rhea Bullock

Great post, Jeff! Thank you for all you do for all of us CPP’s.