Living with Pain: I Never Shilled for Pharma

Living with Pain: I Never Shilled for Pharma

I am writing in response to Marianne Skolek’s column of May 9, published in the American News Report.

Contrary to Skolek’s report, Dr. Andrew Kolodny, the president of Physicians for Responsible Opioid Prescribing (PROP), is engaging in partisan rhetoric that hobbles the discussion of the treatment of chronic pain.

I have been a volunteer advocate, never a paid employee, working with the Action Network of the American Pain Foundation (APF) for the past 4 years, until the foundation ceased operations this week.

I am a person who’s lived with constant harrowing pain for over 45 years. I am not writing here as a representative of the APF, but as a person with pain and a knowledgeable advocate who has worked for the improved care of people like me — who suffer needlessly because of under-treatment and non-treatment of chronic pain.

In my years as an APF volunteer, I never once received any money or gifts from the pharmaceutical industry or was I asked to shill for their products. I don’t know anyone at the APF who was ever contacted by a pharmaceutical representative to do anything on their behalf or advocate for their products, as Kolodny would have the public believe. My work was never to advance one treatment option over another.

Drum Beat to Demonize Opioids

Kolodny and PROP have been part of the drum beat in the press to demonize one of the many legitimate treatments for chronic pain. Yes, I support the careful use of opioid medicines for appropriately diagnosed patients. But I also support evidence-based solutions to protect the public. I support the reasonable use of opioids, as one of many treatments for chronic pain, while also seeking balance between the legitimate needs of people with pain and keeping these medicines out of the hands of those seeking to use them illegitimately.

I started taking OxyContin four years ago, before switching to Suboxone, a prescription medication designed to ease detox from opiates. Over the years I’ve undergone countless medical procedures, including a dozen surgeries to deal with the fallout from a set of incredibly painful diseases: a broken spine, Behcet’s Disease, microscopic colitis, chronic epididymitis, fibromyalgia, dozens of kidney stones, arthritis and arachnoiditis. During treatment of the latter, my spine was nicked in surgery, causing irreparable inflammation of the arachnoid layer of my spinal cord. I am not alone in having such an awful list of medical conditions that cause relentless pain.

18 years ago I had to give up my professorship, my practice of psychotherapy, consultation and public speaking in the face of grinding pain; none of which I imagine Kolodny and other PROP members has had to struggle with. It was not until my involvement with the APF and my decision to use opioid medicines that I got some semblance of my life back. As with countless others, my use of an opioid medication is NOT the only treatment I use. I have used psychotherapy, physical therapy, therapeutic massage, acupuncture, acupressure, guided imagery, meditation, hypnosis and a daily spiritual practice.

The constant drum beat of biased articles without the entire context, such as those by ProPublica, needs to be challenged. All we as people living with pain want is balance. Yes, there is a growing incidence of people illegitimately using opioid medicines. Legitimate patients using these medicines under a physician’s care also run the risk of becoming addicted, but not the 40% that Kolodny recently claimed. It would be nice if these wildly inflated figures were backed up by well-crafted research producing reliable and valid evidence.

Critics claim that the number of deaths due to the “over prescribing” of opioid medicines is climbing yearly. What is rarely reported is that the cause of death among recreational or addicted users is often complicated by the person combining the opioids with other medicines, such as benzodiazepines, and washing them down with alcohol. Yes, that combination often leads to respiratory failure and death. But which of the three is the culprit? One or all of them?

Under-Treatment of Chronic Pain

There are 100 million Americans who live in chronic, miserable pain. Many go untreated and easily fall into depression and, scandalously, thousands die from suicide. My heart goes out to people who have lost a loved due to opioids. But untold thousands die yearly from pain. Whose heart goes out to them?

Because of this hysteria in the press and the constant drum beat from people like PROP many people are being dropped or denied service by their providers and left in the hell of their pain.

The state of Washington is a horrible example. After they passed draconian measures against pain treatment in that state, the number of abandoned pain patients has steadily climbed, subjecting people with chronic pain to unmitigated torture. Pharmacies are becoming increasingly more reluctant to fill legitimate opioid prescriptions. How is this effective in treating the millions of us in need of help? It must be noted that we have not seen any evidence yet that these types of draconian measures will protect the public, while providing good treatment to people in pain.

We need reasoned, evidence based solutions that will reduce illegal use of opioids while protecting the millions like me — who are no longer sitting on the sidelines of our lives thanks to the use of these legal medicines. Opioids are not the only arrow in the medical quiver. But to restrict or eliminate these medicines will subject millions of us to medieval torture.

Mark Maginn lives in the east bay of San Francisco where he is a poet, writer and social justice activist. Mark’s blog can be found here.

The views, opinions and positions expressed in this column are the author’s alone. They do not inherently or expressly reflect the views, opinions and/or positions of American News Report, Microcast Media Group or any of its employees, directors, owners, contractors or affiliate organizations. American News Report makes no representations as to the accuracy, completeness, currentness, suitability, or validity of any information in this column, and is not responsible or liable for any errors, omissions, or delays (intentional or not) in this information; or any losses, injuries, and or damages arising from its display, publication, dissemination, interpretation or use.

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There are 13 comments for this article
  1. E at 7:21 pm

    Thank you, Mark Maginn, for an excellent, calm, reasoned article about opioids. One does not read many balanced articles about opioids these days, mostly screeds by the likes of the seemingly professional suboxone shill Kolodny, his sidekick Balantyne and the rest of PROP. Opioids, used responsibly, are safe and effective medications for many chronic pain patients. As for addicts— individuals must take responsibility for their own actions and not pawn off responsibility onto “society.” (This is known as free will and maturity.) Unless one wants to abolish our cherished freedoms completely, there is no substitute for personal accountability. It is wrong to punish innocent chronic pain sufferers for the wrong actions of addicts. It will not make us safer. It will not “solve” the chronic pain epidemic or solve addiction for that matter. Why? Because, if these irresponsible addicts couldn’t access opioids, they would drink themselves to death, fatally OD on heroin, etc. I feel like this is a scene out of 1984, the Orwell novel. Do we make each other live out our lives in padded rooms under the guise of safety, or do we accept rational cost-benefit analysis and the rights of individual patients to make the appropriate choices for themselves in consultation with medical doctors skilled in pain management? I, for one, advocate personal responsibility and choice, even if the occasional abuser or addict dies a Darwinian death. As stated in this article, most of these fatal overdoses are recreational mixes of opioids, benzodiazepines and alcohol. How can any rational personal blame the one and not the others? How can any rational person seek to take an opioid prescription out of a responsible, legitimate pain patient’s hands because an irrational person used the same drug illegally and stupidly for illegitimate reasons?

  2. Ryan at 12:17 pm

    CORRECTION: Clearly mathematics are not a huge part of my everyday job either since in my haste to write an earlier comment, my numeric representation was that of one hundred BILLION rather than the one hundred MILLION number I intended to represent the adults dealing with some form of chronic pain in America (as stated in the Institute of Medicine’s 2011 report “Relieving Pain in America; a Blueprint for Transforming Prevention, Care, Education, and Research”). Sorry about that.
    My mistake illustrates that passion for a subject – especially when it directly effects people whom you love – can cause haste and in that state, a kneejerk mistake can be made. I believe it is that very combination — peppered with a true ignorance about a subject — that leads to these Senate hearings and public outcry against people with chronic pain and the advocacy organizations they create and populate.

  3. Ryan at 6:01 am

    Wow, Nanook, I don’t know what business you work in but mathematics clearly are not involved! “A few people” have chronic pain? We’ve just read here that according to the Institute of Medicine report, that number is 100,000,000,000. One hundred MILLION– NOT counting children and the veterans who have fought so bravely and are know injured and need relief. Most dictionary’s define a few as “items generally 2 or 3 in number, usually less than 5.” And to you that’s a selfish few?!? These people have chronic pain through no fault of their own and are using medications that have been available for years without huge problem until the societal norm became people not accepting any responsibility for their own actions, such as most of the “Oxy-dead” you speak of who chose to put a substance in their bodies that they didn’t need and then got so shocked at the result. If Darwin’s rules really were taking out those who would just “naturally” die from things “the human body wasn’t meant to survive” I think nature would favor those with the will to fight against disease rather than those who choose to irresponsibly jam substances down their throat that generally were never meant for them. — Normally that kind of stupidity would get rousted out of the gene pool much quicker. Blaming innocent those with chronic pain is selfish, wicked and .. silly.
    Unless sarcasm-of-the-absurd was the intent of your comment; to show how ridiculous this blaming of those with pain trend is.. was that it? oh in that case, it worked beautifully! If not…. well… I guess I’ll just stick to silly.

  4. nanook at 7:46 am

    millions of people die NATURAL deaths from chronic pain and other medical ailments that, tough cookies, the human body just isn’t meant to survive. the idea that a few people should get to live a little while longer and the only trade-off is that millions of people get to suffer and die from opiates (what you call “hysteria,” i call “my daily commute to work,” the entire bus and urban network of south florida is packed with the shambling oxy-undead) is selfish and wrong. just as with so many of humanity’s innovations such as nuclear power we continue to unleash suffering on the masses for the benefit and profit of a few. all it has cost us is the complete up-ending of the natural order of humanity as a species…no big deal eh.

  5. Ada at 7:27 pm

    Please read:
    Pain Medicine: Repairing a Fractured Dream; Ballantyne, Jane C.M.D., F.R.C.A.
    Anesthesiology: February 2011 – Volume 114 – Issue 2 – pp 243-246

    Pain Physician, 2011 Mar-Apr; 14(2):145-61
    A comprehensive review of opioid-induced hyperalgesia; Lee M, Silverman SM, HansenH, Patel VB, Manchikanti L.

    Regarding dependence/addiction — Patients taking opioids also experience adverse events. A Rose by any other name is still a Rose. I have an aunt who had her leg amputated and was put on oxycontin, she is 82, (never drank, smoked, drugs) she got hooked on oxycontin. She took it as prescribed and the family is having a difficult time trying to taper her off.

    Opioid narcotics must be prescribed in a judicious evidence based manner.

  6. Radene at 6:38 pm

    Mark, thank you for your wonderful article. Thank you for stepping out and saying what I know a few other hundred volunteers would love to say.
    Before I go any further, I would like to point all readers to the IOM Committee – the Institute of Medicine. Per their website:”The Institute of Medicine (IOM) is an independent, nonprofit organization that works outside of government to provide unbiased and authoritative advice to decision makers and the public and is associated with the National Institutes of Health.” The IOM did a groundbreaking study last year – the first of its kind. A report on the state of “Relieving Pain in America” (see site http://www.iom.edu). The report revealed a striking 100 MILLION in America dealing with chronic pain, that the under-treatment of pain in American is now a public health crises and ultimately the report called for
    “A cultural transformation in the way pain is viewed and treated.”
    In fact, the IOM report went as far as to say this on page 4 of the summary:
    “Unfortunately, many health care providers [and public] lack
    a comprehensive perspective on pain and not infrequently interpret the suffering
    of others through their own personal lens. Misjudgment or failure to understand
    the nature and depths of pain can be associated with serious consequences—more
    pain and more suffering—for individuals and our society.”
    This quote and many more throughout the report verify persons not directly affected by chronic pain understand very little of the terrible state of it and frequently MISJUDGE motives and actions. In other words if you don’t deal with chronic pain, all you think you know is probably incorrect!

    I wanted to quote this objective report at the outset because what we seem to have first here is two competing subjective viewpoints. One side – Mark, myself and other pain patient/advocates whose lives had been DEVASTATED by pain and renewed again after appropriate treatment . I can see where that would cause a bias. The other’s life was devastated by the loss of a child to an opioid, therefore sees all pain medicines -and anything associated with them -as evil and the very things that took the child. Naturally, something like that will cause a huge bias on the part of the “investigator”.
    On that note: Let it be known to all readers here that I too VOLUNTEERED for the American Pain Foundation for three years and I too never once was paid to talk someone into a drug of any kind. All I did was tell my story. That’s all any of us ever did– tell what happened to us and our loved ones as a result of becoming a pain patient. My story is one of a normal life hit by a plane accident with injuries to a neck, back, and head that needed to be dealt with. Mine is a story that , at its center, had someone who had never used an illicit drug IN HER LIFE, nor did she want a lifetime spent taking them. I was a “good patient”, diligently doing all the doctors told me to do in order to physically heal the best. Surgeries could restore my skeleton but not address the ravaging pain. Before this point I hadn’t known of “chronic pain” as a real problem – after all, don’t you just get used to it after a while? (*THAT is one of the biggest misconceptions about chronic pain EVER and yet it is still the most prevalent idea in the public not directly touched by the problem; again see the IOM report.)To control the pain, I tried physical therapies, electrical box units that sent my nerves through the roof; I did epidural steroid injections, acupuncture, biofeedback, more/different physical therapies, internal pumps and much more. My body degraded each time until by August of 2004, I was mostly bed bound with a resting heart rate of 102 and a body that was going near shock practically once a month. That kind of cardiac stress is typical for a person with severe undertreated pain.
    What was the result of this life in ever-increasing pain without the use of opioids? 18 newly diagnosed issues with 5 separate diseases/conditions that – for the rest of my life -will cause pain signals to overwhelm my body intractably. My back injury became a spinal cord injury with adhesive arachnoiditis. That’s because my spinal cord was now shredded and caked in hardened scar tissue from all the NON-OPIOID epidural steroid injections so that now, each individual nerve in my spinal cord from L3 (mid waist) to my coccyx (tailbone) gets torn — TORN- with each move I make (my innate sarcasm begs me to scream “but wow folks, screw those evil pain pills huh? Because this spinal cord injury route is so much better. Central pain syndrome is next: it causes my whole spinal cord to churn out pain as if it were a pulse, feeling it from head to toe. Experts have called this syndrome “the pain ABOVE pain.”
    So what finally gave me a life out of bed and with more of a restored life than I’d ever hoped to have? A closely watched regimen of OPIOIDS that I have been on now for 7 years with each subsequent year restoring one more piece of my damaged health picture (hypothalamus, thyroid, etc..) Any disease-managing medication will have side effects and mine are managed with some extra supplements, the end. I can only tolerate 2 medications so, knowing that, do I tell others that my meds (produced by *** drug company) are the ones that can ease their pain? No! Never! I know better because of experience alone! I, and others like Mark and myself and the groups we populate, only advocate strongly for a pain patients access to TREATMENT, never a specific drug. But we deserve treatment just like anyone else with a disease.

  7. Reston at 8:57 am

    After a brief decade or so of relative pain management enlightenment in the U.S., the pendulum appears to be on a return swing toward a hellish life for chronic pain sufferers; goodbye quality of life, hello interminable suffering, thanks to the successful activism of misdirected victims of loss like Kolodny, the “nothing but the facts” media knot heads, and the spineless politicians who only excell at mucking things up. Respect and kudos to Mark Maginn for fighting the good fight!

  8. donna green at 4:03 am

    then what you say matters.

    All the theory & research in the world is of no use unless it can be
    applied.
    I dont know whats worse having pain or having to read/hear this rot.

    The closing of these pain org’s would not seem to be in patients best interests

  9. donna green at 3:52 am

    Patients know what works for them & for many
    people opioids give quality of life.
    While i can empathise with those who have lost
    loved ones i empathise most with sufferers of chronic
    pain & their families (who are also victims).
    Pain is still undertreated & what pain patients endure.is
    a disgrace (in Australia if not worldwide)!
    There is so much predjudice, shame & misinformation re these issues.
    Opioids give quality of life & a level of functioning.

    When you have constant pain for years which doesnt respond to other drugs

  10. Nancy at 12:34 pm

    Dear Ada,

    “Opioid Induced Hyperalgesia” is a myth, has only been studied in MICE, and is often used by physicians as an excuse not to treat severe pain with opioids.

    What medical studies are you referring to? Forest Tennant, M.D., has treated patients with opioid therapy for decades, with great success, and the severe consequence of….. Increased QUALITY IF LIFE!

    if studies have not been conducted in the use of opioids for longer than 12 weeks, how is the lack of data used as an excuse NOT to use them?

    Of course severe pain sufferers “still have pain” when using opioid therapy! Opioids decrease pain by a large percentage, but NO treatment reduces pain 100%. ANY doctor, or pain specialist will tell you THAT!

    “Dependence” and “Addiction” are two separate phenomenons, are should never be used interchangeably

    Opioids are NOT for everyone. The people who benefit from them, and take and store them responsibly, should should continue to have ACCESS to them.

    This has NOTHING to do with transparency, and truth, and everything to do with politics, Partisan rhetoric, and misinformation.

    Untreated severe chronic pain ruins lives, damages brains, destroys families & livelihoods, and is TORTURE for those who suffer.

    FIRST, DO NO HARM…..

  11. Nancy at 12:09 pm

    Mark,

    Thanks for a great article. I am a fellow chronic pain sufferer, and am very concerned about the biased, unscientific, propaganda that the PROP, and numerous others are spewing in the media these days. I suffer from a rare, genetic, connective tissue disorder called Ehlers-danlos syndrome that causes severe, debilitating chronic (and acute) pain. As a member of the Ehlers-Danlos National Foundation (EDNF.org), I am among a large group of pain sufferers who are becoming more and more concerned with losing our (already limited) access to life sustaining medications, like Opioids. Without the use if these medications, many of us would be bed or house bound from our relentless, debilitating pain. The closing of the Pain Foundation has been a startling glimpse into our future, and we are beyond scared. People who have not suffered from daily, agonizing and debilitating pain have NO business telling us that we don’t need one of our most important pain control methods….opioids, OR that they DON’T work for our pain. Ask us, and we will tell you, that WITH the responsible use of opioids, we are able to function, take care of our families, sleep, eat, and participate in LIFE! Without them, many of us have NO life, beyond surviving….if we are lucky (or maybe NOT so lucky). When did it become okay to NOT include US in this so-called research? Losing a loved one to overdose is a terrible loss for everyone. Losing a loved one to suicide from un-treated disabling pain should be actionable. Lost in this whole mess, are people that this medication was INTENDED for…. Why are people in pain being blamed for the addiction and subsequent behaviors of others? Until chronic pain sufferers who rely on opioids, individually
    prove untrustworthy, or dishonest, they should NOT be treated as criminals. Living life in terrible pain is torture. NO ONE I know WANTS to rely on this medication. No one I know wants to be treated as though they should be ashamed of themselves for needing pain care. No one I know wants to know what life will be like for us, when our access to these medications is gone. It’s too bad there is a National Foundation that could help people like us, navigate through life, in serious pain, and offer us a little HOPE. Maybe someday….

  12. Ada at 6:00 am

    “Partisan rhetoric that hobbles the discussion of the treatment of chronic pain.”
    Mark Maginn have you heard of:
    – opioid induced increased pain sensitivity
    – many adverse outcomes of sustained opioid use in addition to death & addiction
    – medical studies DO NOT support the use of opioids long term except in very few cases
    – opioids are highly addictive & dangerous; they are not safe as prescribed; so the patient & doctor must weigh the greater risk of harm to any potential benefit (some Drug companies & some doctors are now finally espousing the truth)
    – many patients who take opioids for pain still suffer with pain but also have the added suffering of addiction/dependence (have witnessed this personally over & over again)
    – No human being should suffer with severe pain, but we must remember the long term effects of these drugs and what happens downstream
    – Clinical trials are typically conducted for a few weeks only, current evidence based information has revealed the harm from prescription narcotics to be significant
    – Do we not deserve transparency and factual information about all drugs, informed care, should this not be encouraged?
    – First Do No Harm