Counterpoint: “Opiophobia” is not a real thing

Counterpoint: “Opiophobia” is not a real thing

By Cindy Perlin, LCSW.

(Editor’s Note: A recent commentary by Dr. Jeffrey Grolig on Opioidphobia has generated lots of comment and we received a request for publication of an opposing point of view by Cindy Perlin which you can read below.)

First, let me state unequivocally that I am vehemently opposed to the practice of involuntarily terminating opioid medication for chronic pain patients with a long-term history of opioid use and no evidence of addiction. I am also vehemently opposed to license suspension and prosecution of physicians who prescribe opioids to legitimate patients, a practice that has terrorized physicians to the point that they are abandoning their pain patients. These practices have caused grave harm to pain patients. Many are experiencing significantly increased suffering as a result, with some turning to riskier street drugs and others committing suicide.

Cindy Perlin

I feel compelled, however, to address the many inaccuracies in Dr. Jeffrey Grolig’s recent article, “Opiophobia: The Irrational Fear of Opioids”. To begin with, a phobia is “an exaggerated usually inexplicable and illogical fear of a particular object, class of objects, or situation” (Merriam-Webster Dictionary). It is not illogical or inexplicable for patients, physicians and policy makers to have concerns about a class of drugs that is killing over 100 Americans a day and addicting so many more. While we may disagree about the causes or the policy response, use of opioids can be life disrupting or deadly for some users. So, fear of using opioids is not a phobia because it is not exaggerated, inexplicable or illogical.

Dr. Grolig also misrepresents data and timelines. Opioids were used with caution in the mid-to-late 20th century because thousands of years of medical and recreational use had demonstrated that these drugs were very addictive. It was only after Purdue Pharma patented an extended release opioid, Oxycontin, with the intention of making huge profits, that the reluctance of the medical community to use these powerful drugs was reversed. Purdue Pharma funded the research by Dr. Portenoy and others that Dr. Grolig mentioned. These parties then misrepresented the data in their marketing to physicians. Purdue Pharma was charged with criminal consumer fraud by the FDA in 2007 for lying about the addiction risks to pain patients of Oxycontin and fined over $600 million. Hundreds of lawsuits have been filed against the doctors and pharmaceutical companies involved in this fraud. These lawsuits, filed by states, counties, cities and individuals, are now pending in state and federal courts.

Contrary to the “less than one percent” addiction rate claimed by Purdue Pharma, the National Drug Abuse Council now estimates, based on independent research studies, that the rate of opioid addiction for pain patients is between 8 and 12 percent. Furthermore, the National Drug Abuse Council reported that it is impossible to predict which patients will succumb, and addiction can occur as soon as five days after initiation of use. So, when new pain patients are placed on opioids, we are in effect playing Russian roulette with their lives.

A meta-analysis of research studies of opioid use for chronic pain published just last month in JAMA (Journal of the American Medical Association) found that opioids provided statistically significantly better pain relief than a placebo or other available medications, however the actual amount of additional pain relief was so small that it probably wasn’t very meaningful in terms of patients’ lives.

All of this does not rule out the possibility that there are some pain patients who will not become addicted and for whom opioids provide the best pain relief. It does logically lead to the conclusion that opioids should be used with great caution and only after other less risky pain treatments have been unsuccessful.

There are many nonpharmacological treatments that have been proven safe and effective for many chronic pain conditions, including: medical marijuana, herbal treatments including kratom, mind/body approaches, acupuncture, massage, chiropractic, nutritional interventions, light therapy, electrical stimulation therapies, stem cell therapy and many others. There are significant legal and financial barriers to patient access to these therapies that need to be removed. Promoting use of these alternative prior to initiating opioid therapy is not “opiophobia”, it’s common sense.

Cindy Perlin, LCSW is a chronic pain survivor, the creator of the Alternative Pain Treatment Directory and the author of The Truth About Chronic Pain Treatments: The Best and Worst Strategies for Becoming Pain Free.

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Authored by: Cindy Perlin

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Tess

Patients and people are not dying from legal pain meds.They are dying from illegal street drugs. Taking a substance does not make u an addict. People are born with a gene in there brain that makes them more likely to addict.And for u to say that there is no opioidhysteria u are living under a rock. The CDC own data show that legal prescribing was never a contributing factor to crisis. At least there new data after admitting they inflated numbers by 200%. There is now so much stigma with pain meds now that doctor patients relationship are devisted beyond repair. Not only do we have to fight doctor but, pharmacy,pbm, insurance companies,policy makers to get the medication we need.Now even cancer patients are not getting pain meds due to fear of addiction.Hospitals are refusing to give pain meds after surgery.If this is not opiophobia then what is

I am so happy Ms. Perlin is wealthy enough or has wonderful insurance that covers all the alternative therapies she credits with her elimination of chronic, severe pain- Those of us with HMO coverage may also have had to work w/ severe pain, or finally apply for disability. This has its own obstacles to decent care- plus financial hardship. I have had mindfulness, PT, (both good and harmful) and paid for my own therapeutic swimming- but Oxy/Acetomenophen 5/325 works best. 1 pill a day!!! It helps me move, get out of bed, excercise, get out of the house. Have taken it for several years. NO PROBLEM. NO BODYS BUSINESS. NOT AN ADDICT. I am sorry for the 5-8% of people who may become addicted- but that is NO reason to condemn pain patients! Recently I was forced to purchase Narcan, as condition of refill of my prescription- very embarrassing!!

Susan

KRATOM??? Scary counterpoint. LOTS of dangers there!

I VEHMENTLY DISAGREE WITH HER ‘COUNTERPOINT’. TO REBUKE MY CLAIM, LOG ON TO PAIN PATIENTS RADIO DAY AND LISTEN TO PATIENT ADVOCATE STORIES.
“OPIOPHOBIA IN 2017” IS THE TITLE COURTESY OF ADVOCATE RAE SMITH AND THE AMERICAN PAIN INSTITUTE. THE TRUTH SHALL SET YOU FREE!

csheltri

The woman is making money off her stance, don’t expect her to change her mind anytime soon. She should give us her whole story if she had some personal insight that came through experience. The title of her book says it all the Best and the Worst. Black and white thinking run amok in the world! And she herself has spent years doing statistical meta-analysis of thousands of studies? Not likely.

She suffers from an incurable group related disorders-group think and over identification with group affiliation. Mental health professionals cannot put down their psychoanalytic lense, so they think chronic pain is a mental health problem. They can’t stop psychopathologizing (is that a word?). Either pain is seen as somatizing (psychiatric), or dependence and addiction are emphasized. And of course their “alternatives” are touted, amongst themselves at least, as the best treatments for pain.

If I may add to the discussion again: In October 2018, Stephen Nadeau MD and I published a critical review of the June 2018 AHRQ Systematic Outcomes Review for non-pharmacological non-invasive therapies in chronic pain. The findings of this very large review of almost 5,000 published trials reports can best be characterized as “ambivalent”. Clearly, this class of therapies helps some people some of the time, AT THE MARGINS of usual therapy with analgesics, NSAIDs, Anti-Convulsants and Anti-Depressants. But also clearly, none of the alternative therapies has gone beyond early small scale trials by their proponents to conduct Phase II or Phase III trials.

Given the poor state of medical evidence, it is outright fraudulent to state as the CDC Guidelines did, that these therapies are available, proven and preferable to opioid therapy. Present reality is much less promising. The therapies of so-called “integrative” medicine may have a positive role to play, but only as additions to usual therapy — very often with opioid analgesics.

See:

https://www.practicalpainmanagement.com/resources/practice-management/behind-ahrq-report

A. MacKenzie

Thank you, Drs. Fusfield and Lawhern, for your excellent responses debunking Ms. Perlin’s “counterpoint” and speaking on behalf of pain patients everywhere who need opioid pain medications and should not be denied them based on this fake hyped-up “crisis”!

Ms Perlin, you have misconstrued a number of ideas. I have not “cherry picked” data. Instead, I have analyzed prescribing and demographics data published by the CDC itself. It is true that many heroin addicts in rehab relate that their first exposure to opioids was a prescription. But the great majority of those reports are from people who never saw a doctor for pain. Instead, they stole pills from a home medicine closet, or were given them by a relative because they couldn’t afford to see a doctor for pain.

I commend for your reading, an analysis report which has been shared widely with senior figures in NIDA, FDA, HHS, and DEA. It is available at http://face-facts.org/atip/analysis-of-cdc-wonder-rx-and-er-data-v1-4-may-2018-2/

The sources of the analysis are fully explained in this report. Graphics have been published on *The Crime Report* in an article titled “The Phony War Against Opioids – Some Inconvenient Truths”, June 21, 2018.

Thus I challenge you: rather than speaking in broad generalities, instead engage with the data itself. Prove me wrong if you can on the merits of the DATA, not unsupported opinion. You may discover to your discomfort, the truth of an observation by humorist Will Rogers (and before him, Samuel Clemens): It’s amazing how much of what everybody knows ain’t so.

6.] The claim that; “There are many nonpharmacological treatments that have been proven safe and effective for many chronic pain conditions, including: medical marijuana, herbal treatments including kratom, mind/body approaches, acupuncture, massage, chiropractic, nutritional interventions, light therapy, electrical stimulation therapies, stem cell therapy and many others” is also profoundly misleading. As one who has, over the last 28 years, personally tried ten of the eleven “alternative” forms of pain relieving adumbrated, I can assure you that NONE of them provided me with any significant chronic pain reduction, while my recently forbidden, if never dangerous fentanyl transdermal patches definitely did!!

7.] Such a litany of proferred “alternative” treatments also brings to mind for me my many dismal, indeed more than miserable, attempts to deal with various “pain management clinics” all of which were also trying to push onto me only such, completely spurious, “management” techniques, including the ones just mentioned, but also still more dubious practices as “distraction therapy,” “transcendental meditation,” “cognitive therapy” and on and on into the ever more irrelevant and spurious. To me the entire “pain management” industry is nothing but a malicious farce. It’s entire purpose is to attempt to con all the severe pain patients forced to visit them into believing that it is perfectly acceptable and natural NOT to treat their pain adequately as required under the UDHR!! In other words, such clinics are themselves not only the result of, but major perpetrators of the regnant, and profoundly pernicious American cultural “opiophobia”!!

8.] In short, “opiophobia,” both as the pervasive and irrational FEAR of opioid medications, and as the equally ubiquitous AVERSION and INTOLERANCE of such medications, even under penalty of draconian punishments, is very real and rampant in the U.S. today. It needs to be combated and eradicated both medically and legally!

4.] The claim, attributed to JAMA, that; “the actual amount of additional pain relief [offered by an opioid medication over a placebo] was so small that it probably wasn’t very meaningful in terms of patients’ lives” is truly preposterous and displays such a staggering level of ignorance as to lead me to wonder about anything that I should read in JAMA in the future!! Anyone who has ever needed opioid treatment to palliate acute or chronic severe pain knows for a FACT that these medications work very well to alleviate pain. That is precisely why they and their naturally occuring “opiate” cousins have been used ubiquitously for thousands of years to do just that. Clearly whoever wrote those false and medically irresponsible words in JAMA suffered from a severe case of opiophobia her- or himself!! I can also personally attest, now that I have been unceremoniously, — and “cold turkey” — booted off my still much needed opioid pain meds, that being thus recklessly and cruelly discarded by the medical community has indeed had a “very meaningful,” if decidedly BALEFUL impact on this “patient’s life,” indeed the consequence has been nothing short of disastrous upon that life!!

5.] The claim that; “this does not rule out the possibility that there are some pain patients who will not become addicted and for whom opioids provide the best pain relief” is also quite risible since it implies that the vast majority of pain patients who are prescribed opioids WILL “become addicted to them” and, conversely, that only “some of” those in severe pain might find such drugs to offer the “best pain relief.” Both claims, or better implications, are also false. As so often in discussions of this matter, “habituation” appears to be being conflated with “addiction,” and this although the author already has admitted that the addiction rate is certainly under 12% at the highest. Chronic opioid users become habituated to their pain meds, but that is totally different from an addiction!

I disagree with this article on several points.

1.] Webster’s provides two definitions of the suffix form of “phobia”:

Definition of –phobia
1 : exaggerated fear of
[As in] “acrophobia”
2 : intolerance or aversion for[As in]
“photophobia”

It is important to observe that the second meaning of the suffix has now become perhaps more widely utilized than the first. “Homophobia” and “Russiophobia” are two relevant examples as neither term connotes so much a fear of the noun to which it is affixed as an aversion toward it.

2.] “Opiophobia” clearly makes good sense under both definitions. Many people, especially in the US today, do indeed have an “exaggerate fear of” opioid medications, a fear quite deliberately inculcated in them by institutions like the public education system, the MSM, and the DEA etc.. Millions of such opiophobic persons even go so far as to refuse to accept appropriate opioid medications when these are offered to them when they are experiencing severe pain.

Our society must also be considered “opiophobic” in the second sense as well, since the most pervasive attitude toward opioids here is indeed both decidedly “intolerant” and “adverse.” What else can a decades old “drug war,” where even mere possession of these substances can and often does result in long imprisonment, be considered but precisely these two things?

3.] Whether the “less than one percent” opioid pain medication addiction rate claimed by Purdue Pharma,”or “the National Drug Abuse Council estimate” of “between 8 and 12 percent” is correct is hardly obvious. Personally, from all the many studies I have seen I would tend to believe that the actual figure is closer to the former than the latter, since, although Perdue Pharma is clearly hardly a disinterested source, neither is the National Drug Abuse Council. The latter has just as much reason to exaggerate the figure as the former does to minimize it.

To be continued.

CatherineR

2. Secondly, explain how dependence, which is an entirely physiological problem & can’t be controlled by the person taking the medications—no more so than the diabetic, the heart patient, or the mental health patient can control it when their bodies become dependent upon their respective medications—is indicative of addiction? You’re clearly equating addiction w/ dependence, when the dependence you’re talking about is not like a person who is now dependent on it in a mental way, like they haaave to have it. That dependence is actually addiction & not the one that occurs w/in 5 days, which is entirely physiological & happens w/ every person who takes opiates. Addiction is a mental health issue; it’s entirely psychological & can be changed by behavior; physical dependence can’t be changed even 1% by choice—the intimation it can is profoundly ignorant and potentially dangerous for innocent pain patients, who, through no fault of their own, deal with something that left untreated can be madness and suicide-inducing. Please educate yourself more on the subject, rather than seemingly practicing confirmation bias and finding headlines that match your prejudices and not looking further into it. Just like the five day claim of when addiction can begin, when it’s actually dependence, a physical dependence, something entirely outside the control of a person taking opiate medications; it’s the body’s response, not the person’s, which can begin in five days. Something that comes from a commercial of people who are clearly anti-opiate zealots trying to muddy the waters by using dependence as if it’s the same as addiction. Spreading misinformation meant to scare people and cause further stigma and other negative effects to the innocent pain patient, in the process of doing so.

CatherineR

1. First, please explain why it’s any of anyone’s business, & why would any layperson give a hoot about, which therapies a pain patient chooses, along with their physician, to address their pain? Seriously, why do you care? & why do you think you’ve a right to judge what ppl do w/ their bodies, something that is entirely personal/private & literally none of anyone’s business but a patient’s & their doctor’s? It’s bizarre. It’s like you’re all are so afraid ppl are getting a high in a “legal” way, that you want to ruin it, because otherwise it makes absolutely no sense. We’re a very tiny part of the addiction & overdose problem, & instead of addressing the real problem, you go after the low hanging fruit, pain patients, & it makes it look like something is being done about the opioid problem, which we all know is actually an illicit fentanyl & heroin problem. It’s bizzarre & in a lot of ways sick, considering the effects it’s having w/ the suffering & death occurring in the pain patient community as a result of such rhetoric. We don’t need saving & we don’t get high from our meds, so stop equating us w/ abusers.

Jessica

When I repeatedly hear stories from people like ‘My grandmother cried for over a year in constant pain because she wouldn’t take prescription pain meds. She was so afraid she’d become addicted. she just refused. We finally talked her into it and now she can walk again and laughs and enjoys time with her grandkids’ it certainly seems like an irrational fear to me. Their doctors explain they aren’t going to be addicted and still they persist in the fear.
Many of general public are so afraid, if they happen to need a surgery, some will suffer extensively, because they’re too afraid to ask for, or receive opioid medications, because of all the fear mongering going on.
8-12% are some of the higher numbers I’ve seen for addiction rates, but even those are very small.
Even using your high end, that 12% ‘might’ become addicted, that means 88% won’t.

People are suffering needlessly and this needs to stop.

I just think calling this out is a little nit picky.

Kathleen Sells

There’s two medication for pain Tylenol and opioids.Alternative therapy are not effective or covered with insurance
Epidural injection is dangerous and illegal
What is left?

Stan Jamrog

One more thing. Cannabis is not an option. Until it is legally accepted by the federal government and covered by insurance it is a non starter for the vast majority of patients.

Until it is legalized cannabis users are subject to being prosecuted. Suggesting that pain patients break the law in order to find relief is simply a nonsensical imaginary solution. In fact we don’t even have decent data on the effectiveness of cannabis as a pain medicine, essentially placing patients into an unknown, instead of providing safe and effective relief that has been used for thousands of years.

This is in response to the many comments posted here about my article. To those who responded in anger about having their opioid medication involuntarily reduced or terminated, please read the first paragraph of my article. I am vehemently against that practice.

Also, many people have made the assumption that, because I urge caution about opioids and consideration of alternatives, I have no experience with chronic, severe pain. That is incorrect. My passion about this topic is because I have lived it and also because I have found my way out of it with alternative medicine. I also know many others who have done so. I am quite aware that alternative treatments are not covered by insurance, as noted in the last paragraph of my article. I am very active in advocating for that to change. If all pain patients were as active in that realm, we would have coverage by now.

To those who have used cherry-picked research to claim there is no correlation between the rise in opioid addiction and opioid prescribing, the real facts show otherwise. The increase in opioid addiction and death has parallelled the increase in opioid prescribing. The fact that most deaths are now caused by street drugs does not mean addiction does not start with prescribed opioids–it often does. And opioids continue to be prescribed to new patients without the patient being informed that they are potentially addictive and without any screening for risk.

It’s long past time to consider a broad range of treatments for chronic pain so that everyone in pain has the best opportunity to get optimum pain relief or even recovery. If you would like more information about alternatives, or to sign a petition for coverage of alternative treatments, please go to my website for my Alternative Pain Treatment Directory at http://www.paintreatmentdirectory.com. There are many little known, effective treatments you may not have tried .

Stan Jamrog

You are off base in your numbers, and are comfortable with studies that have already been debunked. The actual addiction rate of pain patients is 1.6 percent, and goes down drastically for those on lower doses.

To say that opiate medications are ineffective flies in the face of many years of effective treatment. In essence you are saying that pain patients are lying when they claim relief. While there are alternative treatments for pain, for many patients they simply aren’t effective. Opiates have helped many of these patients go from bedridden to functioning at a higher level, or are they just lying?

Here is the truth : opiate prescriptions have been on the decrease since 2011,yet the addiction rate has remained stable, and the overdose rate has increased. This indicates that the issue is not with prescription medications, but with the illegal drug trade.

You okay semantics by claiming there is no opiophobia. Unfortunately cute wordplay doesn’t take away from the very real issue that paranoia about opiates is leading to massive numbers of suicide among veterans and pain patients who can’t get adequate pain relief. I don’t know about you, but I will gladly risk addiction (a treatable condition) over continual torture and death.

Perlin sees rising addiction and mortality in the US, plus liberalized prescription policy of the 1990s. Then she jumps to the conclusion that A caused B. Despite bad behavior by Purdue Pharma, A did NOT cause B. And CDC data prove prove it.

If we plot State by State opioid mortality rates against rates of opioid prescriptions, what should we see? If medical exposure causes lots of addiction, then opioid mortality should closely follow prescribing rates. But it doesn’t. The contribution of medically managed opioids to mortality is so small that it’s lost in the noise of street drugs. See “The Phony War Against Opioids – Some Inconvenient Truths” (The Crime Report, June 21, 2018).

CDC demographic data also show little connection between chronic pain patients versus people with addiction. Opioid prescribing is highest in seniors – who have the lowest rates of opioid mortality of any age group, stable more than 17 years. But overdose deaths have skyrocketed among youth to levels six times higher than in seniors. The demographics contradict Perlin’s conclusions.

A quote from Dr Nora Volkow at NIDA is very pertinent:

““Unlike tolerance and physical dependence, addiction is not a predictable result of opioid prescribing. Addiction occurs in only a small percentage of persons who are exposed to opioids — even among those with pre-existing vulnerabilities…Older medical texts and several versions of the Diagnostic and Statistical Manual of Mental Disorders (DSM) either overemphasized the role of tolerance and physical dependence in the definition of addiction or equated these processes (DSM-III and DSM-IV). However, more recent studies have shown that the molecular mechanisms underlying addiction are distinct from those responsible for tolerance and physical dependence, in that they evolve much more slowly, last much longer, and disrupt multiple brain processes..”

Christopher Phillips

Robert Schubring, my hat is off to you sir!! I wish that my comment was as concise and “on message” as yours was!!

Russell

Only someone completely unfamiliar with chronic pain would think something like this let alone say it my suggestion is to get out into the real world and find out what [edit] is going on

Pat

Here’s a dose of reality as it pertains to ethical pain management. My wife, who was diagnosed with inoperable stage 3C her2+/ER+ breast cancer; who had a radical right side mastectomy with axillary lymph node dissection (26 nodes removed underarm and 8 supraclavical) and left mastectomy with sentinel lymph nodes removed; who then developed axillary web syndrome; lymphedema, peripheral nerve pain to the point she cries herself to sleep two to three times each week; who has suffered through the most aggressive chemotherapy and radiation they could provide and used Neulasta which caused even more severe bone pain, has been and is being told that she should continue to use higher and higher doses of marijuana to treat her pain. She’s been told to have acupuncture and Physical Therapy. She’s been explicitly told by her oncologist at Roswell Park that they don’t write opioid prescriptions in the practice because of state and federal laws and fear of legal action. Mind you, when she did take Hydrocodone, she was given 30 pills at a time and they lasted her 2-3 months. She was not and has never been an addict of these drugs, in they had been prescribed for breakthrough pain. So, the next time anyone wants to get all weepy eyed about some junkie who dies at a Narcan party or feel sorry for parents who didn’t properly supervise their now deceased child, remember the real victims: the cancer patients who did not choose cancer, the cancer patients who did not choose to stare down death but chose instead to fight for their children and suffer through some of the most horrific treatments you can imagine, the cancer patients who suffer with neuropathy and post mastectomy pain syndrome. These victims could not choose rehab. These victims could not choose to be more engaged with their children. These are VICTIMS. Drug addicts and those who enable their behavior CHOOSE their path each and every day.

A. MacKenzie

I have tried acupuncture and massage for fibromyalgia – neither works like tramadol/apap. In fact, massage greatly exacerbated the pain, while acupuncture provided some temporary relief. Massage was not covered by insurance and acupuncture may have been at that point in the early 2000’s (before our healthcare system was ruined by Obamacare) – it is not covered by my plan now.

It just really irks me when people who are not experiencing the conditions for which opioids are the ONLY relief feel entitled to make decisions for those of us who are – purportedly out of concern that we may become “addicted.” I wonder if the author knows anyone with chronic pain, or has ever experienced it herself. Personally, I would rather be “addicted” to something that enables me to live a more normal life, then forego it and be unable to function.

This whole opioid “epidemic” hysteria has gotten completely out of hand, fueled by the complicit media and politicians looking to capitalize on it. People who have no business weighing in all want to jump on the bandwagon and spread the hysteria.

Kimberly Lang

I’ve read both Dr. Grolig’s and Ms. Perlin’s articles. Although both have elements of truth in them, the only real conclusion that can be drawn from them is not to rely wholly upon someone who is trying to sell you something. It always distorts and creates bias, which is exactly how chronic pain patients ended up here. Bias, agendas, and profits. As we should know, nothing works so well that 100% of the pain will be gone. Patients need options available to them so they can find the combination of therapy modalities that best benefits them to reach their treatment goals. For many patients, that will include prescription pain medications. We need to provide patients with as many tools to manage their pain as possible, and it should be done with their provider who has nothing to gain, no biases, isn’t fulfilling an agenda, and isn’t being scrutinized so closely that he/she fears regulatory attention.
We need a return to our collective common sense. We need to listen to ALL the scientific and clinical evidence. Patients are committing suicide because they can no longer access adequate pain management and medication. There were 47,000 suicides last year. Policies are too restrictive for the 95% of patients who never misused their medications, but were lumped into the same category as heroin abusers. We need to view this disaster through a lens of evidence, humility, and balance now so patients aren’t taking their lives to achieve pain relief.

Christopher Phillips

Part 3

The pharmaceutical giants; like most multinational corporations and financial institutions do not work for the majority of people in this world. They are corrupt and buy off governments, and cause tremendous mystery throughout the world, for “their” god…profit!
This doesn’t mean subjecting those who are suffering from horrific pain the inability to access appropriate medical care. Some of the alternative pain relief methods and models you suggest are good! But far from what is needed of those who suffer severe or constant/ intractable pain. Some of these models are no different than placebo to us; which in turn forces us to find methods of relief that are not only illegal, but extremely dangerous to our health!

Opiophobia is not only a real phenomenon in our country, it is pervasive throughout our culture! This has been true throughout our country’s history of alcohol abolition, marijuana prohibition, and so on. It needs to stop! Drugs are NOT the problem, ignorance is!
I would agree that a REAL solution is in dire need! That finding better ways of controlling pain should be the driving focus of medicine but it isn’t! Because opioids have historically been proven to work on pain so well it has never been a priority! The priority now seems to be taking them away from a huge population of people in pain that don’t fit into the “designated model.”
Create the narrative that “opiophobia” is not real or an exaggeration. A belief that it simply doesn’t exist within our medical system, or society is… at best naive and at worse completely irresponsible!

Christopher Phillips

Part 2

In fact, the medical definitions that for years have been understood and accepted such as “addiction” and “dependence” are being obscured in there meanings! For instance the term “Substance Use Disorder,” changing the definition and meaning of addiction (DSM 5). And not forgetting the massive campaign by groups like PROP, to change the term “dependency” to mean something equal to – or worse than addiction!
Now as far as “opiophobia” is concerned – a well known term among the pain community who have been belittled, ostracized and deprived because of their dire need for pain control – I would say that today, oppression and deprivation of the pain community is at an all time high! The overdose rates keep climbing while the prescribing of opioids to legitimate pain patients is significantly declining, and suicide rates are increasing dramatically!
The pain community is being punished for the drug abuse and addiction of an entirely different population. I do not blame those who abuse drugs to self medicate, trying to relieve themselves from their untreated mental health disorders because that fact is our medical system is BROKEN!

Christopher Phillips

Part 1

I will have to disagree Cindy Perlin’s analysis of the subject of opiophobia!
Opiate based medicines have been used since the dawn of agriculture. The effects are extremely well known; documented throughout history and throughout medical literature.
Like any medicine it has the potential for abuse, but then what substance doesn’t? We know we can easily drink alcohol to the point “alcohol poisoning,” and death. No prescription needed! We know that cigarette smoking leads addiction and to cancer. Again, no doctors prescription needed! (Ironically, physicians throughout the 1930 well into the late 50s used prescribe cigarettes to treat patients suffering from anxiety.)
As an intractable pain suffer for the last fifteen years, I have constantly watched and read as patients suffer! They suffer do to both unscrupulous medical practitioners who would sell opioid prescriptions to known addicts. And on the other side, patients would suffer from physicians who almost sadistically enjoyed teasing their patient with the false promise of helping their pain, and after clearly looking over their medical records – a month or two later would prescribe them nothing more than an antidepressant – instead of the medications that historically helped them. (I know better than most because I have dealt with these Anti-opioid doctors countless times!)
There was a long period of time in America that Catholic hospitals refused dying cancer patients suffering in absolute agony morphine – not because it wasn’t available – but because through the religious doctrine; “It wasn’t part of God’s plan for a righteous death!”
The newest attack ( it is by no means “new” ) has been on the medical definition of “pain,” itself! The question of whether “chronic pain” warrants relief, compared to “cancer pain,” or “acute pain??”

Kimberly

The top several non pharmacological options are too expensive for many chronic/intractable pain patients, as they are not covered by insurance. Also as marijuana does help many people with mild to moderate pain the results are far less good with severe pain. Kratom has been pushed by many doctors, essentially a way around the opioids. Yet, at the same time, the federal government is trying to put this onto Schedule I listing. Frankly, the last thing I want is to become hopeful on a drug that will be pulled out from under my feet, as have the opioids. Stem cells did not work and cost my mother more than $23,700. The doctor performing the stem cells never even asked for any records, MRIs to see if the stem cells could improve anything. How can this be a stem cell study when there was no questions before or after.

The best and most cost effective treatment for chronic/intractable pain is opioids. It is a real crime that we are throwing out the baby with the bath water, especially since it has been proven now that the deaths are still escalating despite the prescribing of opioids to be at a low. So for the upward number of 6% of patients becoming addicted, we are making it acceptable to torture and ruin the lives of the other 94% of patients. Stop the insanity!

Oldgoat

Talk about mis representing. Oxycontin was approved in 1995 (last half) and it represented a totally new way to treat pain, separating baseline treatment and breakthrough treatment in a manner to REDUCE total opioid use. Nothing about Purdue pushing OxyContin and if it was such a terrible thing why did ALL drug manufacturers begin making long acting versions of ALL of their medications. Why not condemn all drug makers?

I also find it despicable when someone refers to those in danger from these drugs as USERS. They are not, the only ones at risk are ABUSERS. The PROP gang has done an impressive job making opioid use out to be a problem, as with Opioid Use Disorder. Its not opioid USE that is the problem, it is opioid ABUSE.

The author quotes articles about studies, not the studies themselves. The 8-10 addiction is from a study of those who were already drug abusers, not patients undergoing supervised medical treatment. Just like the study about NSAIDs being equivalent to opioids. FOR DENTAL PAIN. Anyone who has had dental pain on opioids knows there’s not a whole lot that makes a dent in that kind of pain.

Finally the author ignores the the crux of the issue, like so many who wonder why all efforts at restricting opioids has been completely ineffective, that the problem is not prescription drugs, it is deadly fentanyl analogues contaminating the heroin supply. That why all efforts have failed, youre barking up the wrong tree. Its why opioid prescribing is at its lowest in decades while the death rates from overdoses continue to set records. According to the CDC there was a slight drop (2.3%) in the last half of 2018. Funny how that corresponds to the DEA finally putting the brakes on the importation of fentanyl analogues from China. Stop ignoring all the obvious clues laid in front of you and wondering why restricting Rx opioids has failed to help this problem.

Danny Elliott

Ms. Perlin fails to mention that the lawsuits filed by states aren’t limited to Perdue and aren’t limited to accusations of fraud. These actions are thinly veiled attempts to fill the coffers of the states involved, especially considering that the tobacco money train is reaching its conclusion.

Also, for the data from the National Drug Abuse Council used in the article can be countered with scientific data from several reputable and respected organizations (not Perdue Pharma) that show addiction rates ranging from 0.7% – 5%, significantly lower than than the author provides. And the “meta-analysis of research studies” is not an actual study of the effectiveness of opioids for long-term pain. It’s similar to cherry-picking data that fits a desired outcome. And how this type of analysis can used to determine how effective or ineffective these meds are is ridiculous, in my opinion. The conclusion that opioids should “be used with great caution” and “only after other treatments” have shown to be ineffective is exactly what most chronic pain sufferers have experienced. Other than the now mostly extinct illegal pill mills or the relatively few remaining doctors of questionable ethics, such caution and last resort use of opioids is the common experience of the large majority of patients. I mean, it’s 2019, not 1999.

Finally, for the first 11 years of my personal experience with TBI and severe, intractable pain, the nonpharmacological treatments Ms. Perlin suggests were the only treatments I was provided. And this was during the time when doctors supposedly overprescribed opioids.. They may be “common sense” approaches to the treatment of chronic pain, but I believe that the experiences of most pain sufferers is that they are also ineffective and useless without the inclusion of pain medications. While I can’t speak for others, my experience tells me that it is “common sense” that chronic pain sufferers would choose them over opioids.

Bob

There are statistics and then there are statistics! The way the CDC, state governments and lots of health institutions are treating opioids, it strikes me as a phobia of the worst kind! And why the hatred of chronic pain patients? You say you have that and lots of health professions look at you like your some evil person and then start mistreating you, either by their body language or their spoken language! You would think chronic pain patients all have leprosy and should walk around yelling “unclean”, so everyone can avoid them! That is either in the bible or Ben Hurr, not sure which!

HOUSE

I would just like to say that the government needs to get out of the Drs office! This fake news hype is just that, hype and downright lie’s! Do some people have a problem with drugs?? Of course!, BUT, when you lump all people in the same category you’re wrong, just wrong. How about tackling the alcohol crises? How many millions are affected by that? Oh, that’s right, the state’s and government make billions of dollars off of alcohol, so shh, we just won’t bring that up…

Anglikat

I am a Chronic Intractable Pain Patient of approx. 30+ years, and I have had the best Pain Specialist around and as a result, I have had excellent, professional care! Virtually bedbound, when I finally received proper treatment my whole life changed and I started living again, my point is, the recent war on opiods is a direct attack on our right to live the best life possible! As patients we need to stick together and fight this war on opiods any way we can, we can’t just give up!

Yes, that sounds very reasonable, and it would be lovely to have the luxury of all of the alternative treatments. The barriers to the many other therapies are, at this time, probably not an option for very many people. All of those treatments would take more time away from work, taking care of your family, taking care of all the responsibilities that come with life. Living with chronic pain already cuts your time in half. It’s also good to be able to spend quality time with family and friends and even just spending time with yourself. Time becomes so much more precious. I’m not a patient for my chronic pain and my pain level is pretty high every day. I just refuse to get involved in the cluster [edit] that’s been created by this mess. The 1st time I went to the doctor to find out what happened inside my body that could possibly cause me such unbelievable agony, I felt the cat & mouse game begin. I made the decision that I will not give anyone that kind of power over me and I won’t let them draw me in to their shifty mind games. They don’t trust me which in turn led me to not trust them. That same scenario might be adding to the problem of people just skipping the docs and going to the street for relief.

Opioiphobia, like homophobia, is very real to the people who suffer this irrational fear. Homophobes say that gay people are better off dead than gay. Opiophobes say that people are better off dead, than addicted,

In each case an irrational fear is created.

Promiscuous sex in “gay bath houses” absolutely helped to spread the AIDS virus that killed millions of people. But responsible people in the gay community closed down the bath houses. Homophobia has meanwhile led to violence that protects no one and disturbs the public safety.

Ooiophobia is exactly like homophobia. If falsely assumes that people should die because Addiction is believed by Opiophobes, to be worse than death. And the reality of addiction is that it is manageable and survivable.

Had Cindy Perlin taken the responsibility to actually read the article on which she is commenting, she would have discovered that the author actually addressed the issue of responsible prescribing. Patients should be interviewed and examined to determine why they have pain. Curative treatments to stop the cause of the pain must be used…this is part of “Prescribing Like a Lawyer”, as the author advocated. Long-term opioid therapy is only to be used when curative care is impossible and palliative care is required. This rationally follows from the “Prescribe like a lawyer” concept.

Cindy Perlin, your opiophobia is showing, when you advocate medical quackery to trick patients into thinking we might feel better if we just thought a little differently about how we perceive illness. Demanding that we exhaust all unproven quack remedies before using the drugs that work, is irresponsible of you.

Kris Aaron

I was hoping to read an insightful article about the deaths caused by drug abuse, when I saw the following comment: ” It is not illogical or inexplicable for patients, physicians and policy makers to have concerns about a class of drugs that is killing over 100 Americans a day and addicting so many more.”
The class of drugs the author is referring to, although she failed to make this clear, is ILLEGAL FENTANYL IMPORTED FROM OVERSEAS. Not legal prescription opioids but illegally manufactured fentanyl, which is 50 times more powerful than morphine.
The author seems unaware that many drug overdoses are caused by multiple drugs — as many as five or six different narcotics along with alcohol are frequently discovered in the bodies of recreational drug users.
She also seems to believe that opioid addictions rates are much higher than scientists claim. in an article by Kaatje van der Gaarden a physician’s assistant and chronic pain patient, the author says “True opioid deaths (opioid medications alone) range around 5,000 deaths annually, according to Josh Bloom, writing for the American Council on Science and Health.(https://www.acsh.org/news/2017/10/12/opioid-epidemic-6-charts-designed-deceive-you-11935 ) New York City’s medical examiner’s office is unsurpassed when it comes to accurately determining cause of death: in 2016, 71 percent of all drug-related deaths involved heroin and/or fentanyl.” (https://www1.nyc.gov/assets/doh/downloads/pdf/epi/databrief89.pdf)
Yet pain patients should be denied opioids in all but the worst cases? Our prescription opioids are the cause of so many addictions and overdose deaths? The “actual amount of additional pain relief (provided by opioids) was so small that it probably wasn’t very meaningful in terms of patients’ lives” is the way she judges whether pain patients should receive opioid prescriptions?
Perhaps a second article is called for, in which Cindy Perlin can explain the reasoning behind her conclusions.

Rx opioids are not causing 100 deaths per day.
The “opioid epidemic” is a heroin, illicit fentanyl, fake Rx pills, and polypharmacy epidemic.
80% of those who abused Oxycontin never had Rx for it.
(SAMSHA)
So, yes, opiophobia does in fact exist.
Along with opioid hysteria.
Both are causing immense suffering to millions of chronic pain patients.

Chrys

I have been using opioids for a very long time. First for migraines, then severe bone on bone osteoarthritis in both knees and spinal stenosis along with degenerative disc disease. I have tried ever imaginable treatment for my pain, both medical, holistic, icing, physical therapy, acupuncture, biofeedback, etc and the only thing that gives me some relief is Norco or Vicodin. About once every 2 years the migraine pain will not subside for 4 or more days. Then my reputable conservative aim management Dr gives me an injection that does have some Dilaudid.
Overall I am in good health and am blessed with a beautiful family but if I was told that I would NEVER be able to receive these pain meds, I would actually consider suicide!

Heidi, Seattle WA

Interesting that you say that “some” pain patients will not become addicted when you just stated an 8 – 12% possible addiction rate. Doesn’t that indicate that the “vast majority” of chronic, intractable pain patients DO NOT BECOME ADDICTED? Yes, caution does need to be taken when prescribing analgesic, opioid medication, especially taking into account past history of addictive behavior. But, chronic, intractable pain patients are still being literally thrown under the bus attempting to correct an illegal, polypharmacy overdose problem, caused by heroin and fentanyl that ARE NOT PRESCRIBED! These days, the suicide rate of under or untreated pain patients is getting close to what you believe is the addiction rate. Which is worse? Think about that.

Gary Jermyn

Dr. Perlin’s Article is nearly an attempt by some people to illustrate that my doctor is smarter than your doctor. Dr. Perlin merely argues over the use of a certain word. Most of the treatments that she offers as alternatives I have used. Chiropractors. Physical therapy. Acupuncture. Massage. For me, they don’t work. Some of the other alternatives that she mentions don’t exist. So what good are they? Many of the fraud cases illustrated by Dr. Perlin Are still in the courts as she admits. Therefore, in the United States you are innocent until proven guilty. I take from her article that the cases have not yet been adjudicated. The bottom line is in my View is, the authorities are forcibly tapering or eliminating drugs that work, even if a little, when they have no alternative that works. OK. SO Dr Perlin thinks Dr. Grolig used a word that is incorrect; actually the word doesn’t exist. A more descriptive word would be lawyer-phoebia. The real reason for fear of opiod-phobia is litgia-phobia. So afraid of being sued that the medical-industrial complex comes up with their only logical (for them) solution. PUNISH THE INNOCENT!

I must respectfully disagree with the Perlin article as the statements above are not based upon fact, but upon misinformation repeatedly fed to the public by the media.

First off, all the data and timelines in my article on Opiophobia are correct, and based upon facts well supported by reality. Second, this is not a high school debate, but it is an issue where tens of millions of pain patients are suffering from a sea change in politics, and have been left abandoned, not only without medication, but without a doctor to treat them.

#1. Opiophobia. It is a term used in multiple pubmed articles:
Webster F, Bremner, et al. From opiophobia to overprescribing. Pain Medicine. 2017; 18: 1467-1475.

Annand KJ. Pain Panacea for Opiophobia in Infants? JAMA. 2013; 309(2): 183-4.

Oswaldo J. Rev. Assoc Med Bras. Opiophobia and Opiophilia: The War Continues. 2018; 64(5)

#2. The figure of 100 deaths per day was touted by the CDC in 2016 as being the number of prescribed opioid deaths per day based upon a figure of 32,445. The CDC has since retracted that figure as being inaccurate. The CDC published a retraction in the April 2018 Journal of Public Health announcing they were wrong, that the 32,445 figure was mostly accounted by illegal drugs, street drugs, and had nothing to do with prescription medication. The true number of prescription overdose deaths was actually 17, 087. The statistic that worries me more is the suicide number of 44, 965 in 2018. That is 123 deaths per day: Opiophobia is related and should alarm us all.

#3. Dr. Russell Portenoy. Although Dr. Portenoy has been demonized by the media, please look at reality, not what the government wants you to believe:

Dr. Russell Portenoy has authored over 238 peer reviewed articles in his career. He is a specialist in the care complex pain in cancer patients. He is a leader. He is past president of the American Pain Society. He founded the speciality of hospice and palliative care. He is a good man

Billie McCurdy

All I can say is things have gone downhill for me in the past year. He’s lowered my dose of Medicine. I cannot clean I cannot get out the house.. I have widespread Neuropathy ,fibromyalgia CRPS and some other disease I cannot pronounce. I have spent over $200,000 in the past 10 years trying all natural products. Have been to psychiatrist and psychologists therapy. I used to handle pain Mind Over Matter until it started affecting my heart. They finally had me on the right dose of medicine to where I could function a little more. Now I am withdrawn from all friends family because I cannot physically do anymore. The pain is so severe. I am trying really hard to find follow the new regulations. The rheumatologist and neurologist have done every test possible most come up positive but the cross test show negative. All they tell me is that my auto immune system is messed up and they can’t figure out why. I never understand how people get high on pain medicine all it does for me is take away some of the pain but never works to take it all away. I even checked myself into rehab hanging I could live without the medication. That lasted 48 hours before they put me back on the medication. They seen what it did to my heart and blood pressure. I give up. I do not like the stigma it comes with fact that you take pain medication. So what little I take now I do not tell anyone. I don’t understand how this website works. I do chair and bed yoga and meditation and pray a lot. Any other suggestions would be helpful.

sharon l schmidt

Ok Cindy Perlin tell me how to be pain free. I have idiopathic chronic pancreatitis I am 62 and have tried everything. Opiates are the only way I can get out of bed in the morning and I will more than likely die from pancreatic cancer in the future. Please don’t tell to stop drinking because I never drank.

Thank you for your post. Just a small suggestion, please use footnotes when citing studies and statistics in the future. Best of health, Jim

Ronda Carter

I appreciate that different educated opinions are allowed here. This topic is very important to our entire nation, not just those in pain and those who try to alleviate the pain. There are no easy answers.

Alice Carroll

Sorry, I just don’t believe that the addiction rate for people who have been prescribed opioids for pain is 8-12%. Millions have taken these drugs for wisdom teeth extraction, toothaches and arthritis pain to name a few. If the addiction rate were this high our country would be teeming with with opioid addicts, because by these stats 8 to 12 people out of every 100 would be addicts. The National Drug Abuse Council is an addiction group who has a vested interest in high addiction numbers. What are these independent research studies that are cited?

The thing that truly bothers me the most is that the long-term chronic pain patient’s opinions are disavowed. I’ve read comment after comment in these National Pain Report stories for years where chronic pain patients tell how the quality of their lives improved with opioid medication and how those from whom it has been taken are left in agony and as you stated yourself are committing suicide. These are the folks I believe, plus my doctor and my own experience. I venture to say that NONE of us ever wants to be in chronic pain, but here we are through no fault of our own. Why would we lie about what works? We are trying to survive and these drugs help us. Is it better to have a non-addicted person who can’t do anything but lie in bed writhing in pain? Is the point to show that these organizations are combating addiction and deserve government funding? If so, that is tantamount to profiting off other peoples pain and misery and that is despicable.

Paul Bartolini

I’m sorry but in my personal experience nothing has worked as well as opioids for my chronic pain. And since the pain isn’t going away why should I even care if I’m addicted as long as I don’t take more pills per day than prescribed? I’m be tried everything in the last 10 years since a mesh implant hernia surgery went terribly bad. The ego of the surgeon and my trust in him and doctors in general prevented me from getting the mesh surgically removed when it could be done. Now I’m left to deal with the pain. Don’t take away my opioids.

CLaws

I find it impossible to take anyone seriously that recommends anything that’s been scientifically proven over and over to be no more effective that placebo such as acupuncture and/or acupressure. This would include chiropractic treatments as the fundamentals are rooted in nonsense and some methods are dangerous and at least one proved deadly. At least the author didn’t recommend homeopathy as it’s possibly the biggest medical scam currently.

June

To me u sound like a holier than thou scholar who uses only statistics which this is not this is about people real people & their suffering not thru any fault of our own thru wonderful doctors whom used extreme caution & alternative therapies first found a way to help cpp who most were at the end of their tolerance for pain & had no quality of life get their lives back, the pain is not fully gone but these opiods allow us to have some quality of life. Yes people are dying & have died of drug overdose but what people like u & ur statistics don’t differentiate in is the majority are illegal drug users. Do u know that the percentage rates if illness & death due to alcohol is much higher than even illegal drug use. It’s wonderful that u found an alternative to help ur chronic pain but there are others that have tried these & they don’t work for them but now are being told even tho they’ve been tried that they will work & we are addicts if we say they don’t work. I am only one of many that have been on these meds for over 20 years never asked increase just had quality of life now again it’s being taken away from us. I’m sorry but it makes me angry & upsets me when people in any situation are demeaned to a statistic.

Thank you very much Cindy for releasing a counterpoint on such a ridiculous name they’ve come up with to try and describe what has and is taking place. We need someone like yourself to counterpoint many stories that are nothing but poppycock. I do wish the public officials as well as the public would read all of the stories as well as the comments that have been published by the National Pain Report. Unless they have some hidden agenda( which often times I think they do) it might just wake them up! So many precious lives being destroyed, some terminated and by nothing but false information that is torturing billions. With any medicine that has addictive properties there’s always a small chance one could become addicted. I remember after taking my first opioid all I could think of was this is incredible! After years of suffering with my back, ankle and knees I could actually once again walk and hold my head up high, not walk around high so to speak. With the billions of comments that have been made over the past several years on this website alone these are chronic pain patients in whom are hurting severely. They just want their life-saving medicine back which in turn would of course bring back their livelihoods. When I read a story that someone is now bed fast, can no longer work, are unable to clean their house, go to the grocery or fix their meals, play with their children, grandchildren etc. it makes me want to cry and sometimes I do. These are not comments that would come from drug addicts, but from good and decent people in severe chronic pain that only want their lives and life-saving medication back. Perhaps one day someone will either write a story or counteract one that will truly, truly make a difference. In the meantime may God continue to bless and give hope and miracles to all of my brothers and sisters who continue to live day in and day out in severe chronic pain.