Making Ourselves Heard – Part Two

Making Ourselves Heard – Part Two

Richard A. (“Red”) Lawhern, Ph.D.

Two weeks ago, the National Pain Report published my suggestions to chronic pain patients for making themselves heard in public media and letters to their legislators [Link].  Today I wish to follow those suggestions with something both more important and more difficult for people in pain.  I ask that you write the first of what must become several letters to your US Senators and Representative.  Don’t just think about it.  DO it.  If pain patients are not to be denied even the marginal level of care they now receive, they MUST make themselves heard by government officials who will otherwise almost certainly ride roughshod over them in the next 18 months.

Seventeen separate pieces of legislation are now making their way through Congress and the Senate to “solve” the “epidemic” of opioid drug deaths in the US.  One of the potentially most sweeping is a resolution to fund an interagency task force to “…Review, Modify, and Update Best Practices for Pain Management and Prescribing Pain Medication…” If done right, such an initiative might bring better balance between real concerns for street drug overdose deaths, versus those of chronic pain patients facing withdrawal of the only medications that help them manage daily life.  Done wrong, such standards will condemn millions of people to agony and despair.

The House version of this task force legislation has already passed and the Senate version is pending.  To find your legislators and to know what to say to them, you will need to visit a few websites:

So what might you write?  Here is a possible example:

Dear Congressman [name]

I want to express my ongoing concern and alarm over legislation now making its way through the House and Senate to establish an Inter Agency Task Force to “…Review, Modify, and Update Best Practices for Pain Management and Prescribing Pain Medication…”.

As reported in HR 4641, it appears that membership of the Task Force is being stacked against chronic pain patients who have for years relied upon prescription opioid medications to create the minimal quality of life that we have.  We already know that the March 2016 CDC restrictive “guidelines” on opiate prescriptions in chronic pain are driving doctors out of pain management practice and patients into agony and despair.  If the CDC approach is expanded by the Task Force, many more among the 100 Million chronic pain patients in the US will be thrown to the wolves.

To understand just how wrong-headed much of the current hysteria over opioid overdose deaths is, please have one of your staff read ““Opioid Addiction Is a Huge Problem, but Pain Prescriptions Are Not the Cause” – An important blog in Scientific American [http://blogs.scientificamerican.com/mind-guest-blog/opioid-addiction-is-a-huge-problem-but-pain-prescriptions-are-not-the-cause/]  Then let me know your views concerning the REAL causes of wide spread drug abuse.  I want to know how you will support the concerns of 100 chronic pain patients in this matter.

Sincerely yours,
[Your name and address]

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Just one letter won’t do this job.  The Senate and House must see tens of thousands of letters at the very least, or they will ignore you outright.  They DO NOT CARE if you are in pain.  They care only about getting reelected.  Your voice needs to be heard repeatedly, both by your legislators and in public meetings (webinars) of the Task Force itself.

The staff at the National Pain Report can help the membership by alerting us to key events as the Task Force process unfolds.  I very much hope they will agree to take on this task.

Richard A. Lawhern is a medical non-professional who has supported chronic face pain patients for 20 years as an author, webmaster, and Internet site moderator. He is also a frequent critic of psychosomatic medicine and mainstream psychiatry as misapplied to chronic pain patients.

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There are 17 comments for this article
  1. Jill at 8:23 am

    Thank you so much for encouraging all who suffer to take action. I realize reading these posts how lucky I am to have a great pain doctor and the meds to allow me to function fairly well. I will gave a different story to tell if those meds disappear!! Will be writing. Just do it!!

  2. Richard A. Lawhern, Ph.D. at 5:33 am

    Zoann, you asked if we should begin sending letters to media. YES! First download and print out for yourself, the link to the article in Scientific American in the article above. Then select the link to my earlier article for tips on how to stay within word limits imposed by media. Finally, use the following link to find a regional media outlet in your own area. Most editors will not publish letters from outside their reader base.

    See Op Eds and Letters to the Editors: http://www.ccmc.org/node/16179

  3. Richard A. Lawhern, Ph.D. at 7:08 pm

    You’re welcome, Katherine Owen and Kurt.

    For Therese: No, I’m not advocating that we send the same letter over and over. Quite the contrary. If we submit form letters, they will automatically be trashed by legislators who don’t want to hear our message. We need to be sending mail to our own legislators, not every legislator. If you aren’t in their district, or in a position to affect their campaign contributions in a major way, they won’t care.

    I’m suggesting instead that we BEGIN by asking our legislators how they are going to support the concerns of chronic pain patients in the Task Force process. If they send you back a mealy-mouthed form letter or fail to respond, then we can escalate by sending letters to our local and regional news papers accusing them of engaging in a war on chronic pain patients — with copies to the legislators themselves.

    Of course there is a certain amount of art in the courteous insult. I’ll try to offer examples as we go along. Others should feel free to chime in. This is about all of us. And it will help all of us be more effective if the staff at NPR post article alerts on key events. Most important of all, we need to demand an adequate hearing in public meetings (webinars) of the Task Force, whenever they occur.

    If any of us gets back a letter of support, that letter also needs to be circulated here and elsewhere, so we can identify our friends versus our enemies and the bystanders strung out in between.

    As the people who trained me at Air Force OTS sometimes said, “now and then ya gotta’ kick arse and take names…”

    As the Task Force process develops, we are going to need to stay current on events and build a volume of correspondence to Congress that cannot be ignored. That might mean reaching out to your friends for support in this effort. Not just other pain patients, but people of good will and good sense. Some of us will also need to write editorials in local news papers (not just letters to editors, though that is helpful too).

    In this context, I hope over the next few weeks to share “talking points on chronic pain and addiction” that we can select and incorporate in our letters. Some VERY important talking points appear in the Scientific American guest blog, referenced in the article above. I heartily recommend printing it out and studying what this neuroscientist had to say.

    Go in Peace and Power
    Red

  4. Zoann Murphy at 7:04 pm

    Should we also begin sending letters to the media? So much of this “opiod epidemic” talk has come from the media hype – can we turn the tide by letting the media know that our voices are being ignored?

  5. kris at 2:38 pm

    I wrote both my senator and congressman and I put the blog up on my support group site

    lets hope we are all heard

    I am given the lowest dose of baby norco and I am stuck on my couch and can not function..I am 45…I took my caseworker with me to my pain management appointment and she pleaded with him to increase me….he said NO I am too young…I have been with him for years and he trusts me…but …I am left so I can only lay on my couch with a heating pad or ice between my legs

    I have been disabled since the age of 38..I never had to appeal it ,..never had a hearing …never saw their doctor..my medical records are clear ….

    And I asked for a handicap permit and also I was told no ..2 of my doctors want me walking more…I have deep purple veins coming out on my inner thighs from having too much heat on my private area for too long…..I call them my life time pain tattoos …My obgyn said they will never go away ….but yet still no one will get me to proper pain management

    even seeing the purple veins marks on my legs…….

    I have no life…and seriously I can not do this for ever

  6. Katherine Owen at 1:52 pm

    Thank you so much for writing this! I picked up a roll of stamps and I’m ready to start writing. This is no joke! Everyone needs to do this immediately! Thank you for putting the information up.

  7. Bob Schubring at 1:09 pm

    It is utterly essential to recognize that the Drug War of today, has it’s roots in a racist movement of the 1880’s-1930’s that was called Eugenics, if we are to make sense of the crazy irrational things that people believe, and fear, about pain patients and our medicines.

    It was once thought that mental illness resulted from having “racially-mixed blood”. A person of purely the “best” racial stock, could not develop insanity. A person with a mixture of racial backgrounds, was “alienated”…he had natural instincts that pulled him toward the homeland of each of the racial backgrounds within himself, and could not be at peace anywhere, because instinct was telling him to be in two places at once.

    What should have made this theory laughable, is the fact that people travel.

    We walk, swim, or build boats and sail, and settle in new lands if we so desire.

    But, never let facts interfere with a perfectly good lie. The racially-mixed people of the world, in particular those with African or Middle Eastern heritage, were believed to spread insanity.

    A Harvard professor who believed in this bunk, swore to it in front of a Congressional committee in 1914, and that committee passed the Harrison Act, a law to prevent the supposedly-dangerous effect of opioid drugs upon the “Negro brain”, whatever that term meant.

    The basic myth was, only the most-perfect of White people were actually White. If we had any sickness or problems at all, it might mean that somewhere in our ancestry, one of our ancestors mated with an African or a Jew.

    Thanks to the racist hoodlums of Harvard, the world learned to be ashamed of most of our ancestry. Non-whiteness was a thing to be hidden. It meant that one had base, uncontrollable urges for physical gratification, that made one incapable of fully participating in the processes of democracy.

    The great shame wasn’t that the hoodlums of Harvard taught this nonsense to unsuspecting students, although certainly that is a shameful thing. Nor is it, that the parents of those students spent small fortunes to have them taught lies and nonsense about the history of human life.

    The great shame of the Hoodlums of Harvard, is that they taught people to be ashamed of who we were, by accident of our birth.

    The Hoodlums of Harvard taught that people who have drug problems, have Negro or Jew ancestry that’s addling up our brains, and we should be ashamed of ourselves…or at least, join with other people of color to seek out a guide who can cure us of our imperfections.

    This ideology creates a frighteningly-convenient excuse for patient abandonment. The Harvard-trained doctor need only proclaim that his patient has reverted to the bad tendencies of his other race, to justify the decision to withold care.

    Harvard University owes the human population of this planet, an apology for the racist nonsense that was taught there, a century ago.

    Meanwhile, the Harrison Act needs to be repealed and replaced with laws that have a basis in sound scientifically-proven facts, rather than on racist conjecture.

    It’s up to us patients to demand this. There is not such a thing, as an “inferior” race of humans who deserve not to live. Therefore, our medical problems, do not give anyone else the right to decide for us, whether to live or to die. Therefore, we have the same right to pain-relieving treatments as any other human being. Mentally-ill people who develop addiction are mentally ill and need proper treatment for their illness…just as we need proper treatment for our pain. The fact that an addict has irrational ideas that make life hard for him, is a reason to teach him the skills of rational thinking. It is not a reason to shove him out of human society and watch him stand by the roadside, talking to a rusting hubcap as if it were a person. Similarly, the fact that on bad days, my friend can’t work unless she takes her breakthrough pain meds, is a reason she should have access to those meds on her bad days…NOT a reason for her to lay in bed suffering the pain.

    Several people have implored upon me, that the Harrison Act of 1914 is a dangerous law that must be repealed. After some study, I agree with them. This law is built on the same ideological foundation, as was the Nazi Holocaust. Americans should be ashamed of the Eugenics movement, and the Harrison Act.

  8. david becker at 12:35 pm

    Recently I signed a petition to stop bear hunting- it quickly reached 100,000 signatures. In contrast, a petition to stop the CDC guidelines has gotten a little over 3000 in about the same time.
    Though some people in pain are speaking out for change- they are a very small minority of people in pain- the rest of the millions in pain seem to be more or less overconformed to the status quo in pain care. This is tragic. More people in pain need to stand up and call for much different and much better pain care. In addition, people in pain who are speaking need to learn from the sorry state of affairs in pain care.
    Our pain care system is demoralizizng, depersonalizing, undemocratic, regressive, capitalistic, narcissistic, lacks humillity and caritas. Calling for more democracy, more personal regard, more humility, and better morality in pain care is needed. Just calling for more access to opioids or to marijuana- that wont be enough. We need to call for structursl changes in our institutions so that all Americans can have a greater say in our pain care system. We need to call for universities to hear and consider our ideas on their research and how they education professionals. Organizaations like the ACGME, AMA, AAPM, APS- need to include people in pain on their boards. Government advisory committess need to include people in pain. Failing that changes in pain care will be minor and short lived.
    Its time for people in pain to have a real vision and plan to make pain care much different and better then it is today.

  9. Nancy O at 12:13 pm

    I live with chronic pain from EDS (Ehlers-danios syndrome), which is a painful, and poorly understood connective tissue disorder, caused by collagen mutation defect, and usually runs in families. It can be disabling at times. When my pain was controlled with medicine, I was functioning at a much higher level than I am now. If I had to spend the rest of my life in pain, I’d much prefer death…

  10. Cathy M at 11:46 am

    I wrote politely to my Congressmen and Senators as soon as this thing “broke” in the news – never got a reply (and they reply, eventually, to everything else) and to my governor (also no reply). I will do so again, and will try also to educate others, so that they will also write in with their concerns. It feels so much like a political “bandwagon” (ie: witchhunt) that I’m quite concerned. Even the facts aren’t making it into the media! Thanks for continuing to encourage us to speak out. I just finished a book about the Gallaudet deaf student “revolt”, where they finally stood up for their rights after being treated with paternalistic condensation for years – that’s what we chronic pain sufferers must do! We must let the world know we are here and we won’t be tame little patients anymore!

  11. Therese at 10:22 am

    Dr. Lawhern, a couple stupid questions, please forgive me. Are you saying we should write our same congressperson the same thing repeatedly, or just that many of us must act? Also, is it permissible to write every representative for the state we live in, or only those governing our particular county? If the latter, that only amounts to two letters from me. Many thanks.

  12. Chrystal Augustyniak at 10:15 am

    Im sorry I posting here but fir some reason I can not find another way. I think families if chronic pain patients also need to be heard, I have a letter from my son that I would like to share but I am unsure how to do it.

  13. Richard A. Lawhern, Ph.D. at 9:58 am

    Mary and Judy, I understand where you are coming from on issues of stigma. I hear the same messages from people in the chronic face pain communities that I most directly support. That being said, I must still suggest as gently as I can, that it does us little good and may in fact do serious harm to claim that patients should never be asked to sign drug contracts or take random urine tests or make pill counts. We’re going to have to give a little to get a little.

    Any hospital ER nurse can tell you stories of addicts who come in off the street, claiming to have pain and seeking opioid drugs. These stories are a reality just as your crushing long term pain is a reality. And treatment standards for prescription opioids must deal with both realities in a thoughtful and balanced way. I intuit that one key to such a balance is to establish reliable databases which allow quick tracing of individuals who are seeking treatment, to determine what medical conditions they actually have and which prescriptions they have had in the past, from which doctors. We need to reduce inconvenience to both doctors and patients, in this process.

    My sense of the message that doctors must learn to convey is this: “Because drug addiction is such a wide spread concern these days, I am required to assess the risk that anyone I treat might be misrepresenting themselves in an effort to obtain opiates under false pretenses. I don’t like being made into a medical cop either. But these drugs are addictive for some people. A concern for theft or diversion of opiates into street markets is real and valid.

    So I need your help to establish that opiates are appropriate for you and that you are taking them only as prescribed. Urine testing can help BOTH of us know not only what medicines you are taking, but what the concentrations of those medicines are in your body system. That can help me tailor dose levels of all of your medications to your needs. Pill counts are required as a condition for my keeping my medical license — and I know they are inconvenient. My practice will work with you to minimize that inconvenience in any way possible.”

    Doubtless this is not the only training or assistance that doctors will need in order to safely administer opiates over long treatment periods. But I think this has to be an element of a safe and effective pain management plan.

    Go in Peace and Power

  14. Kurt WG Matthies at 9:24 am

    Thanks Red.

    I too have called for action in these pages, with very little result.

    Unfortunately too many of us are incapable of doing much more than meeting necessary needs. Dose reductions don’t help improve function, and we who live in daily intractable pain are falling under the boot of a rising tide of opiophobia.

    If this were happening in another country, good Americans would call this political oppression.

    I’m afraid it’s the pain supporters and professionals who are going to have to act against this injustice to the millions of us who benefit from COT and the good physicians who treat our suffering.

    But remember your history. We tried this in 2007 and it got Siobhan Reynolds dead.

    Still, political action is the only reasonable counter to suffering and death by the nanny state.

    We must be smart, and act collectively.

    There is still power in numbers. Stand up and be counted.

  15. Mary Dunigan at 3:43 am

    Thank you so much for the work you do! I beg all chronic pain patients take heed to what is being suggested. I for one was already thrown to the wolves after my doctor of more than ten years retired. I refuse to be mistreated and as a result I exist with even higher levels of pain and struggle daily to do the bare minimum to care for my two young children and myself. My fear is that people will not be vigilant until they are in the same position as I. What is occurring is a crime against those of us who suffer the most. Somehow there needs to be a better system put into place that enables the medical community to decipher between chronic pain and dependency verses abuse/addiction! I have zero history of abuse or addiction but yet am constantly treated as an addict! Which is only a step above the way society views rapists and child molesters! Chronic pain patients are NOT criminals and should NOT be treated as such!!!!

  16. Judy at 3:19 am

    The restrictions beginning placed on us as Americans is nearing communism!
    Sign contracts with Drs. For medications they want to prescribe. Then your at the mercy of the all mighty OZ the pharmacist that decides if he/she declares you fit the criteria to fill your medication!
    Hi! I’m an average American who has suffered greatly with ##CRPS for 12 years and it spread. At times I need a wheelchair. It is very painful. I always ask my Dr for the least amount of medication in lowest doses, just enough to allow me to function, still in pain but function! I have over filled my scripts. I feel like you are wasting time & $ trying to withhold our medications from us. We are not the drug problem. It is out on the streets.
    My nephew overdosed on herion! He was not on prescription painkillers. Street drugs are the problem and your looking for an Agenda. Please stop.
    Thank you.