The Other Victims of the Opioid Crisis
“The nine most terrifying words in the English language are: I’m from the Government, and I’m here to help. “President Ronald Reagan
It’s an oft cited quote. Some might say overused. But these words have proven to be eerily prophetic when it comes to how the governments, state and federal, have dealt with the opioid crisis. And as with most crises, there are victims. The victims can be defined as those left in the wake of all who have died from overdoses. Those who have lost loved ones or are living with someone who has become addicted. The many press reports recount the typical outcomes of an illicit drug epidemic. The numbers of deaths are staggering. The streets of once great cities are littered with hypodermic needles, and homeless encampments are rife with illicit drug dealers and addicts who use the deadly poison that they peddle. But also, the chronic pain patient who has followed all the rules, been treated by licensed medical doctors, has submitted to ever growing demands for urine, for pill counts, for actual compliance contracts and been subjected to stigma. The patients who have been totally compliant yet cut off forcibly from the only medications that have enabled them to live a quasi-normal life. These are the victims not well represented in the media. So, a group of chronic pain patients, who have gathered in closed Facebook groups for several years, decided to bring awareness to these untold stories, and the march towards the CDC in Atlanta was launched.
Last week, a group of chronic pain patients, began their trek towards Atlanta, Georgia. Folks from all walks of life, and all 50 States, unwitting allies, all headed towards the Center for Disease Control (CDC). Their mission: to raise awareness to the plight of the chronic pain patient in the wake of the fallout over the government’s handling of the opioid crisis. The location was chosen because it was the CDC who began their plummet from well controlled pain patient with an ability to perform activities of daily living, to victims of the opioid crisis, many left writhing in unfathomable pain. On Friday, they pushed their pain aside, and made their stand in the shadows of the CDC headquarters. A diverse crew, some in wheelchairs, or using walkers, or canes and others with no visible disability or injury holding signs and chanting “don’t punish pain” and “pain patients vote.” A rallying cry of desperation from a mostly forgotten group from varying socioeconomic roots but with the common history: all had been impacted by this war on opioids and the CDC’s own “guidelines for prescribing opioids for chronic pain.” To this group, the guidelines had effectively become law and the pain had become unbearable. Still, they were there to stand for those of us who couldn’t be there, either due to disability, distance, or because a growing number, unable to live with the pain, had committed suicide. They stood for all of us even though some could literally not stand.
It began seemingly benignly to the casual observer. In 2016, the CDC issued guidelines for prescribing opioids for Chronic Pain. In its entirety, the statement discusses numerous medical factors intended for the clinician under the guise of helping the physician decide how much, if any, opioid pain medication should be prescribed to his patient. Though the text of the guideline is lengthy, to the layperson who even noticed, it probably seemed innocent enough: “CDC developed and published the CDC Guideline for Prescribing Opioids For Chronic Pain to provide recommendations for the prescribing of opioid pain medication for patients 18 and older in primary care settings. Recommendations focus on the use of opioids in treating chronic pain (pain lasting longer than 3 months or past the time of normal tissue healing) outside of active cancer treatment, palliative care, and end-of-life care.” In essence, the CDC recommended that chronic pain patients not be given doses of opioids over 90 morphine medical equivalents and warned of doses above as low as 50 MMEs. I was not the casual observer. I am both a political junkie and a chronic pain sufferer, and I knew immediately there would be trouble. The fallout and the harm has been swift and vast, and has only proven to increase in the three years since publication. The government overreach in the name of these guidelines began almost immediately. And it continues to this day.
The punishment meted out for having a chronic pain condition requiring opioid medications under these circumstances has been overwhelmingly draconian. Facebook groups, gathering places for the disenfranchised, have become virtual halls of knowledge for advocates and pain patients alike. Doctors, pharmacists, and other pain patient advocates as well as pain patients use them to organize. One of our groups has nearly 10,000 members, and our membership grows daily. And the few of us with any experience on how to fight city hall, never mind the federal government, are also pain patients fighting our own battles. The challenges are many, but we’ve begun to garner attention and gain some traction.
I cannot say for sure when the press started to pick up on the fact that chronic pain patients were being forcibly tapered or cut altogether from their pain medications. Or that pharmacists were turning patients away, without valid reasoning and without their prescriptions. I cannot cite any one event that precipitated the press but one situation jumps out. Dr. Barbara McAneny, the president of the American Medical Association and a practicing oncologist, wrote a prescription for an opioid pain medication for a stage 4 prostate cancer patient. The pharmacist called the patient a drug seeker and refused to fill the prescription. The patient went home and attempted suicide, out of shame. Thankfully, he was found, and saved. This is but one of many stories both documented in the press, and told on social media of legitimate patients, who were never meant to be impacted by this harmless guideline, being harmed.
The stories began to pile up. Doctors forcibly tapering legitimate pain patients. The suicides. The pharmacists turning people away. Insurers refusing to “approve” opioid prescriptions. In March of 2019, a group called Health Professionals for Patients in Pain wrote to the Centers for Disease Control and Prevention, urging the agency to respond to the “widespread misapplication” of its 2016 Guideline for Prescribing Opioids for Chronic Pain. Patients were being forced to taper off opioids and were subjected to unnecessary suffering, they said. The letter was signed by more than 300 health professionals, including three former US drug czars. It was at about this time that I began to see some changes occur. The CDC has issued clarifications to their guidelines and acknowledged that they’ve been misapplied. . The AMA has issued proclamations. The Department of Health and Human Services Pain Task Force recently published, in part, “the CDC Guideline has been misinterpreted and misapplied. Unfortunately, unintended consequences such as forced tapering and patient abandonment contribute to adverse patient outcomes and provider disincentives in treating patients with complex acute and chronic pain. “ and the FDA has acknowledged the problems with the misinterpretation of the CDC guidelines. So now that virtually all the agencies dealing with health and medication have spoken, the pain patient crisis is over right? Not even close. It’s accelerating. The pendulum on opioid prescriptions had swung too far with liberal prescribing at one point. It’s now swung decisively in the other direction. It will be difficult to change this trend.
No one meant for such draconian measures to be taken. All chronic pain is different.
This was only intended to be a guideline for primary care providers. There is no upper limit to opioid prescribing. But the harm that those seemingly harmless guidelines has caused has been incalculable. State laws limiting the number of opioid pain medications have been passed citing the CDC guidelines. Pain patients frequently and wrongly hear “it’s the law’ from physicians who are either misinformed or whose lawyers have advised them to cut prescriptions or cut pain patients, or both. A few viral videos of cancer patients being turned away by pharmacists at chain pharmacies have surfaced. I hear such stories literally every day. Those who have sworn to first, do no harm, have in fact done much harm. And, in many cases, they don’t like it either. The power of a too big and powerful federal government is more than the physician can fight. They are not willing to lose their medical licenses in the current opioid hysterical climate. Many have stopped prescribing opioids altogether. Others have begun sending chronic pain patients to pain management specialists. More often than not, the pain management doctors go ahead and taper the patient down or off of opioids.
The cost in dollars is not insignificant, either. Virtually all pain patients have suffered a similar fate. Their prescriptions have been cut or cut off. Even if they were not on the higher than 90 MME per day dosage as cited in the original CDC guidelines, they’re being cut. It’s come down from on high that opioid medications that are virtually the same as those which has been used to treat moderate to severe pain for centuries is persona non grata in America circa 2019. It’s become all too much for the average physician to deal with. It’s also more than the average chronic pain patient can deal with. There is now a group that keeps count of the suicides due to intractable, untreated or undertreated pain. I personally know of three people who have committed suicide. And several of the Facebook group administrators, myself included, have been in the position of having to deal with a suicidal chronic pain patient. That we are ill equipped for this is an understatement. Perhaps worst of all is this, it’s not working. The numbers of opioid prescriptions has decreased, and overdoses have increased. Predictably so for those in the trenches of advocacy, since this is an illicit heroin and fentanyl crisis. And it’s not going to work; prohibition never does. If it did, alcohol would not be killing more people than all opioid deaths combined.
So where do we go from here? Stay tuned…
Interesting post. As a former sufferer of chronic back pain, I sympathize with much of this. It’s a real catch-22 for doctors. When I was at my worst my doctor was very suspicious of prescribing opioids because he was worried about addiction, so he would prescribe things like Tylenol 3 (the LaCroix of pain relievers) or he would only prescribe muscle relaxers that could be taken at night. It left me in agony most of the time during the day. On the flip side though, when my back wasn’t hurting I would still take at least 2 muscle relaxers per day because I enjoyed them and they elevated my moods considerably. If he had prescribed me 100 Ultrams for a back injury, I would have taken 2 per day for the next 50 days regardless of my pain levels. When they ran out I would spend the next couple of nights with restless legs or arms when I tried to sleep, as my body was going through withdrawls. So I was exactly the kind of patient he feared.
For me it came down to finally finding the right specialist who did an MRI and figured out what the real problem was. One little arthritis pill per day now and I am nearly pain free. But a lot of people are not this lucky and there needs to be a better way, hence some of the points in this OP.Report
There are no good solutions available. There never will be. The problem underlying all of this is both addiction and our misunderstanding of it. But because we do not want to accept that addiction itself is what is driving this – rather than simply discovering the perfect legislative solution – we will remain on this path forever.
That said, the idea that big government is the problem is as misguided as the idea that small government would fix it. It was, after all, small government that did nothing while drug companies literally flooded the marketplace with pain pills. It was a thoroughly deregulated marketplace, coupled with the certain belief that only certain people would ever end up getting addicted, and that everybody else could simply be expected to appropriately handle their pain medication, whatever that meant. The reality though is that none of us can predict who is and isn’t going to become addicted. Having the humility to admit that might change our approaches, maybe, but policy makers on both sides aren’t going to acknowledge that, and what’s left involves negotiating the fallout. Which is how we end up an attempts to fix the marketplace problem that maybe fix aspects of the bigger problem while simultaneously creating other ones.Report
There’s also the problem that many conservative politicians cast addiction and poverty (which often co-occur) as individual moral failings not systemic costs. Poor people are poor because they make bad choices because they are bad people, not because the systems in which they live leave them only bad choices. Ditto poor people who are addicts.Report
Phillip,
Isn’t the converse of that “poor people are poor because the system is bad?” As someone who very easily could have ended up an addict after 20 years of being prescribed opioids (and purchasing them in Mexico, taking leftovers from family members, etc)…I still had agency. I am very sympathetic to addiction but feeling compelled to assign blame to anyone (system, government, doctor, patient) is the reason why we don’t move forward on this issue.Report
There is certainly plenty of blame to go around. Much, much, MUCH progress could be made if we were willing to think about an addiction diagnosis in the same way that we think about a diabetes diagnosis, but there is cultural pushback toward doing so (much as there is cultural pushback toward thinking similar about all mental health diagnoses).
There is plenty of evidence of what we’re discussing within this comment thread.Report
you mis-read me. I am saying that from the lofty moralizing heights of many pseudo Christian Republican Politicians, they view poor people as being poor because ONLY and SOLELY of individual bad choices. Republican politicians – and a frightening number of individual libertarians – refuse to even acknowledge the system as a player.
I would also remind you that as a white man, you have always had more agency then many other poor folk, even at the times your income may not have been enough for you to believe you had such agency. I would also gently remind you that many addicts don’t actually have that agency – which is why they often relapse absent systematic support.Report
“I would also remind you that as a white man, you have always had more agency then many other poor folk…”
I love you man, but you have got to get off this soft bigotry of low expectations angle. First of all, the classic line is that ‘addiction knows no boundaries’. It is part of our most basic human impulses and has nothing to do with race or gender. This is an old study, but I would be surprised if the numbers aren’t roughly the same today (bold emphasis mine):
According to the 2003 NSDUH, 38.2% of White young adults 18 to 25 years of age in the U.S. reported any illicit drug use in the past year, followed by African-American (30.6%) and Hispanic (27.5%) young adults.
…
Several investigations using data from the College Alcohol Study, a nationally representative sample of U.S. colleges and universities, examined the individual and college characteristics associated with marijuana and other drug use. For example, one study found that approximately three in ten American college students reported using marijuana in the past year (Mohler-Kuo et al., 2003). The study also found that the prevalence of marijuana use was highest for White college students, followed by Hispanic, Asian, and African American students. Other national studies based on the CAS data have found similar racial/ethnic differences in ecstasy use heavy episodic drinking, and nonmedical use of prescription stimulants, opioids and benzodiazepines. In another national study, Meilman and colleagues (1995) compared illicit drug use rates between a sample of 6,129 students attending Historically Black Colleges and Universities (HBCUs) and a sample of 6,129 students attending predominantly White institutions (Meilman et al., 1995). The study found that students from HBCUs reported significantly lower rates of marijuana, cocaine, sedatives, hallucinogens, and other illicit drug use than students at non-HBCUs.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2377408/
I would also argue that in some ways addiction is more insidious among more affluent groups exactly because of those support systems. Access to private healthcare means it’s easier to get prescription medicine. Middle class and upper class kids are often conditioned to pharmaceuticals at a young age for ADD, depressions and a host of other issues. It’s easier to avoid hitting rock bottom because of the support systems and perhaps more tolerance from schools, jobs, etc. When I was popping pain pills every day my coworkers all knew it because they would see me struggling to stay on my feet as the pills wore off and then bounce back when the next round kicked in. They would joke about how it also improved my mood, which it certainly did. We were working long hours at the time, standing on concrete and more than one of them also asked for a pill from time to time. At the same time I saw management personnel come to work still buzzed after a late night while we were on an out of town project and other members of the management team would quietly drive them back to the hotel to sleep it off. That kind of ‘support’ prolongs addiction, not combats it.
So my point is, I did have agency within that time period and within my circumstances, but that didn’t somehow lessen my would-be addiction but instead facilitated it. The only thing that kept things from getting worse was the right doctor and dumb luck.
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Phillip you sir are so wrong in so many ways. We’re not poor because we’re bad. Or because we made bad choices. You saying that is demeaning and of poor taste. Living in chronic pain and not being able to work is hurting us. It’s being under-treated and force tapered and or cut off of our pain medication that helped us to be able to work while in pain and now unable to to to not having pain control. I am appalled at what you have said.Report
Sadly, you have mis-read my attempts at brevity. And for that I apologize.
I believe that poor people, and poor people who are also suffering from and through addiction, are in their states precisely because they have few to no real options, especially when the are poor people of color. Your tapering example makes my point. The medical and social services system assumes pain has an end point, and that treatment should determine that end point and focus on achieving it, rather then developing long term support mechanisms to allow productive life work under continued care.
I was simply expanding on my first sentence which is that Conservative politicians do in fact believe and expound that the poor and addicted are poor and addicted because of their own personal moral failings, not because of systematic problems. My intent was to point out that as long as such folks control the political debate, the poor and addicted can not and will not be able to right their ships, because the systematic changes needed to help them are not in the offing.
Again , I am sorry for causing you further pain. I’ll do a better job of being more expansive in the future.Report
Perhaps I don’t understand what you are saying! As a chronic pain patient tapered off her medication last yr who has attempted suicide, I don’t give a damn if I am addicted! Call it what you want! I was a fully functioning human being prior to this debacle! I was also a fully compliant patient who never abused her prescriptions! Lives decline in addicts who abuse drugs. Chronic pain patients functionality and quality
of life excels when on their medications. The word “addiction” has become the “boogey man” the “devil” and I for one am sick of hearing it!Report
“It was just a guideline.”
“Nobody intended it to work this way.”
“Rules are being misapplied.”
“Understandable errors in judgement were made.”
“We’re reviewing the regulations.”
“We’ll definitely look into this.”
And yet people think that the government writing rules is the solution to whatever problem you’re having.
The issue is not that people are bad people, the issue is that people rely on guilt to stop them doing horrible things to each other, and when you tell people that they’re following Objectively Neutral Third-Party Regulations, you’re taking away their guilt. Sure, this man is sobbing, but it’s not me saying he can’t have the pills, it’s this regulation.Report
Ban sobbing.Report
Unfortunately government writing the rule is actually the solution to many problems we are having. Take environmental protection – have clean air to breathe, clean water to drink, and the like. Sure, one could expect markets to price accordingly for pollution and to thus prevent it (since there’s a cost to pollution in terms of human health and all), but history doesn’t tell us that story. History tells us the story of companies not caring where they dump their coal ash slag, or what they emit, or that their dumping into the Cuyahoga River would ultimately lead to it burning in 1968. Contrary to the earnest cravings of libertarians, doing what’s best for me as an individual and a business sin’t going to be preserving resources (like clean air) for others, nor will it motivate me to voluntarily forgo maximizing profits in order to help other people live. Thus regulation.Report
Pripyat has plenty of smog free air and plenty of empty real estate. Sure they have a few issues with social truth in applied mathematics/economics, but you’ll fit right in, I’m sure of it.Report
99% of the time i have no clue what you are getting at. Chernobyl isn’t a failure of regulation, or free markets. Its a systemic political failure in which cost drives everything, and lying is rewarded.
But hey, keep throwing noodles – something is bound to stick.Report
“systemic political failure in which cost drives everything, and lying is rewarded”
So there is some social truth issues there, specifically about a government controlled production. Do we need to move those dots really close together for ya?Report
There’s no government controlled production aspect to the opiod crisis. That was all private sector actors, sometimes fueled with federal dollars but still private sector. Apples and ice cubes to Chernobyl.Report
Huh, so Unca Sam would have been just fine with a backyard opium pill mill, or maybe even a backyard smallish nuke reactor.
Ohmergod, people might screw that up!!Report
There’s a vast difference between a pill mill – which are being prosecuted FYI – and a state run nuclear power plant in a country that refuses time and again to deal with its own failings. Kind of like a country that starts a war over a belief there are weapons of mass destruction when that country’s own weapons inspectors report there aren’t.Report
I’ll make you a deal, you can have as big a State as you want, as long as there are no statists in it.
You can have as much socialism as you want, as long as there are no socialists in it.
You can have as much standing army as you want as long as it doesn’t have arms or force in it.
We good?Report
Nobody arrived in time to get a picture of the Cuyahoga burning in 1968 because it was just a quick flash fire, so the press ran pictures of it seriously burning back in 1952 and let everyone think that no progress had been made on pollution. It is perhaps an early example of noble cause corruption.Report
“History tells us the story of companies not caring where they dump their coal ash slag, or what they emit, or that their dumping into the Cuyahoga River would ultimately lead to it burning in 1968.”
So the people who need pharmaceuticals for pain management can’t have them because fifty years ago there was pollution. Got it.Report
No. The people who prescribe drugs thoughtlessly because it pads their bank accounts need regulation because they can’t control their own greed. But nice try.Report
The opioid crisis is caused by Chinese imports, not pill-mill doctors, but hey I guess you are right that the answer here was “regulation”. (albeit “enforce the existing regulations” instead of “make a bunch of new ones on people who aren’t the problem”, but you’re right, the same way a stopped clock is right at least once per day.)Report
The opioid crisis is caused by people becoming addicted to opioids. Often that’s because they started with a prescription they probably needed and the doctor was assured by Purdue that this particular opioid was totally non-addictive.
Nobody wakes up one morning totally sober and decides by the same evening they’re going to go down to skid row and buy some shady eighties. That’s the end of the road – Chinese imported fentanyl is at the end of the road of the opioid crisis, not the beginning.
Fentanyl / Carfentanil in particular are products of prohibition. They have the most favourable risk / reward ratio for importers and upper-tier distributors, because you can fit as much ‘high’ in a couple of fake dessicant packs inside a pair of sneakers, as a whole kilogram of heroin. It’s incredibly easy to smuggle. That wouldn’t be a consideration, if people could just buy laudanum or some similarly weaker opioid.
It’s the Iron Law of Prohibition.Report
Excellent article. Until such time that some type of replacements (that work) can be developed the government needs to restore high dose pain therapies to patients that need it. Most pill mills and undesirable patients have been weeded out, now all that’s left is the suffering of people who live in intractable pain every second of every day and it must not continue.Report
The problem here is always going to be, “patients that need it” and figuring out exactly who that is.
And as for the idea that “pill mills and undesirable patients have been weeded out” I would be interested to know where that claim is coming from.Report
Prosecutors sent many pill mill doctors to jail. I met one of them who got busted for writing prescriptions in Eastern Kentucky. He was a very nice man, but strangely enough, his son was shot and killed while trying to escape from the state police while he was showing them where he’d planted all his homemade pipe bombs. He had sworn allegiance to either Al Qaeda or ISIS and wanted to kill American infidels. The story sounds so utterly trite and cheesy, like the laziest possible plot for an episode of “CSI: Harlan”, that our local reporters probably had trouble covering it with a straight face.
Anyway, once legislators and law enforcement focused on the problem, it was easy to shut down pill mills because the pharmacists knew which doctors were writing ridiculously high numbers of prescriptions, in some cases for millions of pills per year.
It had all probably started off quite innocently, as hill folks with disabilities from mining, logging, or just getting old gossiped about which doctors would help when so many others wouldn’t. “Go see doc Taylor. He’ll fix you right up! He cares about his patients.” It probably took some of the doctors a while to realize they’d gone from being the town’s savior to being the town’s drug pusher, but who can argue when the patients are lined up out the door waving wads of cash?
So once Kentucky cracked down on our pill mills (we were one of the first states to do so), our addicts and dealers started making trips to Florida, where plenty of pain clinics catered to out-of-state tourists whose prescriptions had run out while they were on vacation. Bluegrass Airport had to add flights to accommodate all the extra traffic, and the drug runs were a running joke among airport staff. So we raised the issue with Florida officials, and their legislature cracked down on their own pain clinics. As more and more attention focused on the growing addiction problem, more and more steps were taken to try and plug the holes.
Here’s an old 2011 story in the Lexington Herald Leader about the pill battle, with lots of details, such as:
And of course the doctors became acutely aware that some of their patients were just trying to get painkillers, and that it wasn’t always the obvious ne’er- do-well drug addicts. Heck, even Rush Limbaugh got addicted to opiates from a prescription for back pain.Report
George,
These responses that you’re describing are part of the reason why it is now so difficult to get pain pills. That’s the point. You can crack down on the illict acquisition of painkillers, but you’re inevitably going to inconvenience folks who continue to need those painkillers.
That said, doctors who prescribe more freely than others, and pharmacies that fill more freely than others, still exist, and keep being busted. They’re still there because the desire is still there because the problem here is much more bone deep than anybody offering quickie solutions is prepared to acknowledge and/or accept.Report
Well that’s exactly it.
We’re fighting a war and our shotgun approach produces lots of innocent casualties, not that the people getting hooked on opiates aren’t also innocent casualties.
The problem started with pain and suffering, and the solution to that, painkillers, inadvertently produced a side-effect of more pain and suffering due to drug addiction. The approach to solving the drug addiction problem has restored the original pain and suffering we were trying to solve, while not yet solving the opiate crisis.
This is a common failing of ham-fisted shotgun approaches and moral panics.
But the pill mills had to be reined in, otherwise there wouldn’t be anyway to go after the drug addicts go-to supply, and the fact that there were pill mills indicated that some doctors were part of the problem, not the solution.
So that bumped the decision making up from doctors to bureaucrats and legislators, who aren’t exactly renowned for brilliant ideas. We always hope to get a ruling from King Solomon, but usually we get a decision by Bob From Accounting.
But as has always been true, people who will suffer silently – will.
Thus the need to make a lot of noise.Report
Why is my health yours, or anybody else’s business? Don’t bother answering, because it’s none of your business.Report
I am one of those chronic pain sufferers that you’ve written about. I was successfully on a high dose medication for 19 years without incident or increase. My pain was managed with a fentanyl patch which allowed me to live my life and be a productive member of society.
After my state adopted the guidelines as law I was dropped by my primary of 25 years and sent to pain management. My new PM had one goal. He was dropping me regardless of outcome to under 90 mme.
I went through 14 months of horrible withdrawals on top of unimaginable pain. I am now at 90 mme and I am now mostly homebound. I can no longer take care of things that were my responsibility for the past 20 years. My marriage has suffered. My relationships have suffered and there are many days that I wonder how much longer I can endure this torture.
Bottom line is that the government must get out of our doctor’s office. Physicians must be allowed to help their patients once again. This needs to happen today not tomorrow. We are loosing too many good people to suicide. This must change immediately.Report
Because it can’t be the addicts’ fault they’re addicted. It has to be the doctors’ fault and the evil corporations’ fault.Report
Shiela,
Have you ever been addicted to anything? Cigarettes? Alcohol? Candy bars? Porn? Shopping?Report
It’s called taking responsibility for your actions, only that doesn’t apply to those who CHOOSE2ABUSE! They get a free pass to blame anyone else but themselves. Even though it was thier CHOICE to pop pills recklessly while boozing it up with thier friends, cuz life’s one big party right?? My ex was addicted to pills as well as many of his buddies at work. and NO they did NOT start with a legal script in NO WAY, SHAPE, OR FORM! It was thier personal CHOICE to call the dealer while their partying at the bar, NO DOCTOR EVER INVOLVED!! BUT guess who got blamed when my ex got caught by his boss……wait for it….DING DING!!! He blamed his popping pills on some fictious dr that got him hooked. And he’s not the only one who blames anyone else but themselves! MAKES ME SICK!! Here I am, an intractable pain sufferer for nearly twenty years, was on the SAME STABLE HIGH DOSE FOR EIGHT YEARS WITH SUCCESS, in steps the corrupt CDC and lawmakers DENYING LIFESAVING PAIN MEDICATION to chronic pain pts and my dr of ten years abandoned me, handed me my last scripts that he cut way back, no slow wean, and sent me on my way not caring if I lived or died, he said his license was more important than treating pain pts!!!! WTF?! DO NO HARM !! I was able to participate in life and now I am homebound begging God to take me daily. THIS IS INHUMANE, BARBARIC, CRUEL AND IT SURE AS HELL IS TORTURE!!! To leave human beings in agony until they kill themselves to end the pain is GENOCIDE!!! How many more pain drs will be shut down, how many more INNOCENT LAW ABIDING CHRONICALLY ILL CITIZENS/VETS WILL BE FORCED TO TURN TO THE STREETS FOR RELIEF OR WORSE #SUICIDEDUETOPAIN!!! I bet not one in government is being denied pain relief! All of them need to be drug tested monthly like we the ppl, they need to have thrir medical/pharmacy records made public like every government agency having access to our PRIVATE records, There is no way they are all in perfect shape, many up in age comes painful conditions. How many of thier family members are DEPENDENT on pain medication?! Wana bet thry don’t get treated like a pill seeking junkie out for a high?! I am so fed up and done with paying the price with my health and overall well being!! How about the DEA Target the cartel like they are our drs!! We have an ILLEGAL FENTANYL/HEROIN crisis not coming from our drs!!!Report
Thank you, Pam! Neglected to say I had been in pain and on medication for 25 YEARS ON THE SAME STABLE DOSE”!! when ABRUPTLY “TAPERED OFF”! MOST DRUG ADDICTS NOT ONLY
DECLINE BUT USUALLY DIE! THEY DON’T LAST FOR 20+ YEARS ON DRUGS AS FUNCTIONING HUMAN BEINGS!Report
It can very easily be all three.Report
Damn our nested comments! This was meant to be a response to Sheila Tone’s comment above.Report
I too am a patient who suffers from chronic severe back pain. I was taking my pain medication for years as prescribed without any variation and was able to maintain a full time job and raise a family, maintain a household and all that entails. When the CDC guidelines came out, my prescription was cut to below the 90 MME point. I had to take a disability retirement from my job. Fortunately, my children are grown but now I have a grandchild that I cannot get down on the floor and play with. I need help from my spouse to do the many chores around the house that before I did on my own. People don’t understand how our lives are being drastically altered.Report
Things have to change. I have had a chronic illness for 30 years and I am only 42. I did absolutely nothing to cause this illness and have done most everything to make it better – that said – I still have pain. After a recent move I was told by my new PCP that she doesn’t do any narcotic prescriptions in her practice. She sees the need for narcotics, but the consequences, as the prescribed, are too big if the medications are not taken as prescribed by the person the prescription is written for. Therefore she referred me to the pain management doctor. Upon arriving there I was subjected to a urine drug screen and had to sign a contract. I was treated like a criminal and I had done absolutely nothing wrong. I said to the provider that I felt like I was being treated like a criminal. Her response, “Oh – all of my patients say that.” In what world is that okay??? Chronic pain patients usually have a very complicated physical history as to why they are in chronic pain. They have been through hell already and now are made to feel like criminals???? The opioid epidemic has done horrific things to those of us with chronic pain. Most chronic pain patients just want to be able to function – live their lives, do their jobs and be somewhat comfortable. They are not after a “high”. The need for the medication is just to function and live their daily lives. The “opioid epidemic” has gotten so out of control that those of us with real pain are not trusted and treated as if we are criminals. If you think this doesn’t effect you – it might not today – but you never know how your life could change tomorrow.Report
PAIN relief is a human right, especially if we have the means to help those suffering.Report
There are some very weird bots finding this post, I think.Report
If not bots, there is absolutely those who are driving the opioid hysteria in a clinical setting. I hope they never need major surgery, or are unlucky enough to get cancer. It’s not just chronic pain patients who are suffering. The acute pain patient is as well.Report
Typo. Brilliant. I’m the author and I post a typo in the comments. I’ll answer some of these tomorrow. No question is stupid and I do see some things posed that can and should be addressed. There *is* an opioid epidemic. It’s not the chronic pain patients who are overdosing. Re read the piece, people. I’m not denying that people are abusing opioids. Nor was this intended to be all encompassing. It’s why I ended it with “stay tuned.”Report
How are you differentiating between all chronic pain patients and those who are overdosing? Surely there is overlap between the two.Report
No bots. Just real people who are suffering the consequences of a failed policy. Facts don’t lie. No increase in overdose deaths of age 50 and up. Large numbers of overdose deaths in the 16 to 30 age group despite a reduction in opioid prescriptions. These are CDC figures. It doesn’t take a genius to deduce that the problem is illegal fentanyl and heroin.Report
Seems like you’re saying that the problem is young people who don’t need it versus old people who do.Report
This March, HHS released nearly $500 million to the states, in an effort to combat the opioid crisis. The total cost to date: $1.4 billion, because government throwing more of our money at the problem is working!
Illicit OD’s continue to climb with little-to no impact, but the chronically ill have been impacted in a big way. THIS IS NO LONGER affecting JUST cpps. This is a national crisis now; affecting cancer pts, returning veterans and surgical patients.
Everyone needs to start paying attention! Studies are being done on unsuspecting patients because lets face it folks: theres a lot of money up for grabs. Its financially lucrative to be an anti-opioid problem solver and wait for it——YOU are the participants whether you like it or not.
Anti-opioid stakeholders & their new treatments need an expansive market & YOU are the guinea pigs; after all who wants to play Russian roulette with a pain regimen that may or may not work? No one will volunteer for this. You have cancer: (well maybe or maybe not) you will probably be guaranteed relief in your last dying hours——maybe?
Cuddle with those thoughts while you’re healthy! Great writing Teri (-;Report
How are you differentiating between all chronic pain patients and those who are overdosing? Surely there is overlap between the two.Report
Here is four quotes from the CDC opiates guidelines:
https://www.cdc.gov/mmwr/volumes/65/rr/rr6501e1.htm
“The guideline is intended to ensure that clinicians and patients consider safer and more effective treatment, improve patient outcomes such as reduced pain and improved function.”
“Clinicians should consider the circumstances and unique needs of each patient when providing care.”
“Clinical decision making should be based on a relationship between the clinician and patient, and an understanding of the patient’s clinical situation, functioning, and life context.”
“This guideline provides recommendations for primary care clinicians who are prescribing opioids for chronic pain outside of active cancer treatment, palliative care, and end-of-life care.”
CDC guidelines were for RECOMMENDED LIMITS for acute pain for opiate naive pts – NOT CHRONIC PAIN PTS
Out of the 90+ pages of the CDC guidelines.. many entities have fixated on their favorite sentence, paragraph or page where the 90 MME limits were mentioned and totally disregarded the balance of the guidelines. The CDC, FDA, AMA and other have stated that the guidelines have been grossly misapplied.Report
Teri wanted me to pass along that she is reading and appreciates the comments. She is not able to reply right now or probably today, but will tomorrow or as soon as she can.
Thanks everybody.Report
Good article. Thank you for writing the truth about all this.Report
The truth is that we are fighting two diseases here- Addiction and Chronic Pain and with the current method, we are losing on both fronts. Both Addiction and Chronic Pain are diseases that damage people and society. You can’t fight two diseases with one radical policy that is hurting both.
Chronic pain doesn’t completely go away when you take opiates. However, Opiates do allow many to lead fuller, happier, and productive lives. Most also use mediation and other things to help. But Chronic pain is terrible. I would not wish this on my worst enemy.
Addiction doesn’t stop when you cut off the supply. The narrative that “I took opiates or stole my friend’s after surgery and became addicted” it a simplified version of the story. One that is trotted out too much. In an ideal world, no one would be an addict. However, cutting off the supply doesn’t work- It didn’t work in prohibition and it doesn’t work now. What addicts need is treatment- AA, Rehabilitation, therapy, etc. they do need to be treated, but not at the expense of Pain patients.
Chronic Pain patients also need treatment, I can tell you that most people would not let their dogs suffer in as much pain as most chronic pain patients. It is wrong. It is in humane. I applaud everyone who participated.
This is not a hopeless situation. I think there are many ways to address both issuess.
1. Physicians should be the ones responsible for prescribing medication. The government, lawyers, DEA, etc should GET OUT OF THE DOCTOR’S OFFICE. I guarantee that my doctor knows me and my condition better,
2. The government does have a role, but it is not in practicing medicine. Their job is to make sure that medicine is safe, and that it is not being misused, the same role they have in making sure things like insulin are safe.
3. Addiction is a disease that deserves treatment, I think that if the people fighting against pain control would us their energy to come up with better ways of treating addiction, rather than paying lawyers to sue pharmaceutical companies, we’d be further along in this fight, too.
I’m glad that pain patients are standing up. The problem is that they should not have to engage in political campaigns to get the treatment they deserve.Report
It is economic. Theres much, much more money to be made from forcing chronic pain patients into surgeries to implant, revise, or remove saline pumps for pain or spinal cord stimulators.
Even more to be made from investments in drug addiction treatment centers and rehab clinics if you can create a new population of “addicts” seeking treatment by shifting CPP and Cancer patients out if those categories and diagnoses into “Substance Abuse(r).
Patients’ needs are revenue generators. Repeat Medical device implants and addiction treatments are profitable because they’ll be repeated each time the treatment fails and treatments for the wrong condition usually do have poor outcomes. Yet, it’s not the doctor, facility’s, pharmacist’s, or insurer’s error. It can be blamed on the patient (who already has “poor judgment” attached to them because they were once a “drug user”. When they finalky lose hope, it’s a “failure to follow treatment or doctors advice. If they kill themselves, the suicide is almostvtreated as “drug related” and used as proof of just how badly they needed those mental health services that had been offered to them …for a price.Report
It’s called taking responsibility for your actions, only that doesn’t apply to those who CHOOSE2ABUSE! They get a free pass to blame anyone else but themselves. Even though it was thier CHOICE to pop pills recklessly while boozing it up with thier friends, cuz life’s one big party right?? My ex was addicted to pills as well as many of his buddies at work. and NO they did NOT start with a legal script in NO WAY, SHAPE, OR FORM! It was thier personal CHOICE to call the dealer while their partying at the bar, NO DOCTOR EVER INVOLVED!! BUT guess who got blamed when my ex got caught by his boss……wait for it….DING DING!!! He blamed his popping pills on some fictious dr that got him hooked. And he’s not the only one who blames anyone else but themselves! MAKES ME SICK!! Here I am, an intractable pain sufferer for nearly twenty years, was on the SAME STABLE HIGH DOSE FOR EIGHT YEARS WITH SUCCESS, in steps the corrupt CDC and lawmakers DENYING LIFESAVING PAIN MEDICATION to chronic pain pts and my dr of ten years abandoned me, handed me my last scripts that he cut way back, no slow wean, and sent me on my way not caring if I lived or died, he said his license was more important than treating pain pts!!!! WTF?! DO NO HARM !! I was able to participate in life and now I am homebound begging God to take me daily. THIS IS INHUMANE, BARBARIC, CRUEL AND IT SURE AS HELL IS TORTURE!!! To leave human beings in agony until they kill themselves to end the pain is GENOCIDE!!! How many more pain drs will be shut down, how many more INNOCENT LAW ABIDING CHRONICALLY ILL CITIZENS/VETS WILL BE FORCED TO TURN TO THE STREETS FOR RELIEF OR WORSE #SUICIDEDUETOPAIN!!! I bet not one in government is being denied pain relief! All of them need to be drug tested monthly like we the ppl, they need to have thrir medical/pharmacy records made public like every government agency having access to our PRIVATE records, There is no way they are all in perfect shape, many up in age comes painful conditions. How many of thier family members are DEPENDENT on pain medication?! Wana bet thry don’t get treated like a pill seeking junkie out for a high?! I am so fed up and done with paying the price with my health and overall well being!! How about the DEA Target the cartel like they are our drs!! We have an ILLEGAL FENTANYL/HEROIN crisis not coming from our drs!!!Report
I’ve been suffering for 5 years. Each year worse than the last. My dose is capped at the 90mme and this prevents me from switching to extended release (ER) so that I can stop watching the clock and carrying around all my meds. My doctor is discussing switching me to a stigmatized medication used to treat addicts which would ban me from receiving further treatment. With the passing of time I become more immobile, lost almost my entire support system, lost myself and now I’m treated like a criminal and when my doctor goes on leave I can’t find anyone who will treat me. She is so scared that she refuses to take the advice of my pain mgmt. doctor so even though I have a team, my quarterback refuses to pass the ball and take on their recommendations. It’s life shattering, soul crushing, body wasting pain. An emotional, physical and economical assault. These providers are so afraid, that they are committing patient abandonment and malpractice with abruptly changing the treatment plan without patient consent and dropping their patients all together. Most of us can’t afford the lawyers willing to prosecute the providers for malpractice and many won’t even touch it. Not all the providers are misinformed but are just scared and their fear of the DEA is stronger than that of a lawyer. They are getting sanctioned and more from the government and sued by their patients (if at all) and feeling pressure from both sides and they are just as much victims as we are. They too are losing their livelihoods and more. Most pain clinics have closed their doors due to FDA and DEA overreach and patients are unable to find a new provider! We are asked to fill out questionnaires and if we check that box that we have pain we are immediately dismissed. It doesn’t matter if they can treat us with other modalities, if you have pain at all, in any form, you are dismissed and deserted. These providers took the Hippocratic oath and it’s now reflecting it’s name, hypocrites. They promise to do no harm and treat patients and not leave one behind but they are leaving millions behind and causing irreparable harm. Families and loved ones are suffering too; watching their loved ones in endless pain without being able to help them, having to care for much of our needs because we are unable to anymore. The mass casualties of this mislabeled crisis (illicit drugs NOT legitimate scripts) should be enough for action! Recalls are done rather quickly for everything else but what about recalling the harmful policies? It’s one thing to say it and publish new guidelines and statements but it’s not changing anything. We don’t have time to waste! WE ARE DYING! Every day that goes by without treatment or undertreatment is lives lost. I suffer from suicidal ideation (more like suicidal longing now) and I REALLY struggle to dismiss those thoughts because I have responsibilities that I struggle to manage. It’s not enough for us to stand up. Doctors at risk, STAND UP! Doctor’s who still believe in treating patients humanely, STAND UP! Government officials who know and are being offered money to look away, STAND UP! Supporters and loved ones of pain patients, STAND UP! Journalists and Anchors, STAND UP and TELL OUR SIDE! Millions of people are talking about how wrong it is to make us suffer…GET TOGETHER AND STAND UP! We are flooding news stations, senate, representative, social media, newspapers, medical conferences and boards with our plight and NOBODY is taking action. Oregon rolled back it’s policies adopted but even as recent as yesterday patients are STILL NOT BEING TREATED! There’s a LOT of talk and a LOT of action by us but nothing is changing. What will it take? How many of us have to die before we are seen and heard?Report
A great post about a really awful situation.
One of the things that I thought would help was Medicinal Marijuana legalization (or recreational for those who, for whatever reason, can’t get a prescription). As it turns out, it looks like that’s not the case.
I have no idea what might help. Yelling that we have to “do something” tends to get the government to say stuff like “well, if people are dying from overdoses… maybe they should have less of the stuff they’re overdosing on?” and tightening their grip on doctors (making non-doctors more likely to deliver product that doesn’t have any QA whatsoever making overdoses more likely).
“We need to be doing less” will never be a big rallying cry, though.
And I wish I knew what to do.Report
You FC are spot on: 100%…& Therein lies the problem. All the revisionary statements re:CDC etc. will do little. When “harm” occurs whether by faulty procedure, device, or surgery & under or no treatment for cancer: EVERY occurrence is potentially “actionable” & legal consults must be had. This is how it BEGINS. A little media attention never hurts!Report
BRAVO!!!Report
Thanks for reading and for all of the great comments!Report
Thank you for writing this post. As a chronic pain patient it brought tears to my eyes to finally feel understood on the subject.Report