Chronic Pain Patient Rally Set for Washington D.C.

Chronic Pain Patient Rally Set for Washington D.C.

by Ed Coghlan

Hundreds of chronic pain patients, very frustrated by the federal government, will travel to Washington D.C.,on October 22nd to hold a rally.

The idea was spawned by Lana Kirby, an Indiana chronic pain patient, and others who have been impacted by how states have reacted to the CDC Opioid Prescribing Guideline.

“There are people who desperately need pain medication who either are being denied access or have had their prescriptions reduced,” she said.

The rally is attracting a number of patient and patient advocates including Dr. Jeffrey Fudin, Terri Lewis, PhD and pain advocate Lindsay Baran. (Lewis and Baran have written for the National Pain Report.)

“It is our hope that having people come in from as far away as California and Florida will prove to the government that the need exists to put a balance back into this issue,” she said. “People are being harmed.”

It’s not just a rally. Organizers are trying to get meetings with CDC and health officials prior to the march. In particular, they’d like to meet with CDC Director, Dr. Thomas Frieden who has not responded.

Two other CDC officials have been invited to the rally and have yet to accept the invitation to come and discuss the issues with the patients.

We asked Ms. Kirby about the timing of the meeting, in late October when Congress will be in recess and not in Washington D.C.

“We felt it was important to make this statement before the election about the importance of restoring a balance in how pain patients are being treated,” she said.

The anger—and it’s fair to call it that among chronic pain patients and family members–revolves around the reduction in opioid prescriptions AND the fact that no alternative treatments have been promoted in the wake of the CDC guideline.

The Rally will be held at The Ellipse in President’s Park beginning at 10 a.m. and will last all day.

“It’s not a walk since many of our people can’t walk,” Kirby pointed out. “It’s time to make a statement, and the beginning of a real difference in how pain patients are treated.”

Click here to register or found out more information.

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Authored by: Ed Coghlan

There are 32 comments for this article
  1. gerard l becker at 10:55 am

    I am aweddddddddddddddddd by those who can travel afar and bear up under the consequences of such stressful endeavors! Does activism somehow prevent flares???????????????????????????

  2. Amy LifeStar at 4:35 am

    It is not truly nor fundamentally about pain; Pain per se is simply a Medium or Vehicle that the person (Injured, Wounded, or Diseased Subject) is being Tormented Day in and Day out: BY the Nature of the Condition, Dysfunction, Inflammation, Disintegration, Disorientation, Disequilibrium, Disharmony, etc. etc. that Invaded—into a person’s body, body parts, and body systems that—mostly AROSE from Bodily Injuries; which majority of the time these Merciless, Harmful, Destructive, Malevolent, and Vicious Injuries are the PRIME CAUSATION from the Direct Hands/Bodies/Actions of Others that Inflicted upon an Innocent, Lively, and Vibrant Person!

    Okay, now, I can go ahead to focus on the subject matter of the “Critical and Necessary: ‘Do No Harm’ concept and Practice—that NOT ONLY PERSISTENTLY, DESTRUCTIVELY, and MALEVOLENTLY—NOT BEING: ETHICALLY, KINDLY, MERCIFULLY, VITALLY, and FUNDAMENTALLY CARRIED OUT—BY MORE THAN 99.999999999% of the World Wide 7 something Billion People on Planet Earth; but also by the “So-called” Government and Healthcare agencies: on a City, County, State, and Country, etc. etc. Levels!

    The truth is “a Healthy, Harmonized, and Equilibratory: Body, Body Functions, Body Compartments, Body Systems, Body Vitality, and Body Well-Being—DO NOT and SHALL NOT AUTOMATICALLY became ‘DISINTEGRATED, DYSFUNCTIONAL, WOUNDED/INJURED, etc. on IT’S OWN WITHOUT: EXTERNAL HARMFUL FACTORS or HARMFUL ACTIONS’ that Done or being Carried out ‘BY THE VERY NATURE of the HARMFUL, DESTRUCTIVE, and EVIL’ HANDS/BODIES/ACTIONS (DESIRES) OF OTHERS!”

    With that being said, we as Human Beings (or Incarnated as Human Beings) in this Planet Earth Dimension or the 3D Matrix World and Space; “it is Our Fundamental, Merciful, and Sacred Duty to Do No Harms to Others, especially to human beings that we never met nor related to!”

    Another crucial point that needed to be addressed: is that “Accidents Do Not Happen and Shall Not NEEDED TO HAPPEN; at least it happened on an EXTREMELY RARE OCCASION! The True and Accurate application of accident is between Nature and Man; as opposed to from Man to Man! Yet, the Insurance Industry, the Government and County Agencies, etc. etc.; and “the Ignorant, Uneducated, Unwise, Unknowledgeable, Un-Pure, Corrupted, Twisted, Dark, Discord, Distorted, and Malevolent society as a whole—KEEP TWISTING the FACTS, TRUTHS, and EVIDENCE of Harmful, Merciless, and Destructive Bodily Injuries/Wounds—and then blindly, deafly, unwisely, Un-purely, and Malevolently FOCUSING on this accident NONSENSE!

    Whether you wanted/desired to CAUSE a Person TO HAVE Physical/Bodily Injuries/Wounds/Torments (aka: Do Harms to a Person) or simply and essentially: You Do Not Desired to Cause a Person TO HAVE Physical/Bodily Injuries/Wounds/Torments (aka: Do No Harms to a Person)! Therefore, every single harmful, destructive, senseless, merciless, and malevolent incident(s) happened to a person as a result of others’ Harmful, Destructive, Merciless, Vicious, and Malevolent: Hands/Bodies/Actions (Desires) is the SUBJECT MATTER of “Ethics, Mercy, Kindness, Order, Honor, Harmony, and Justice” as opposed to this “so-called” accident NONSENSE!

    With a Heart, Mind, and Soul of Ethics, Kindness, Mercy, etc. etc.., no one shall have to and needed to have to SUFFER, and being TORMENTED DAY IN and DAY OUT from their bodily Injuries/Wounds or Dysfunctions that arose from the bodily injuries incident(s) as a result of others’ Harmful and Malevolent: Hands/Bodies/Actions!

    On the other hand, bodily wounds arose from injuries/dysfunctions do not and cannot be properly nor authentically remedied by pain medications, let alone medications per se do produced too many unwanted and harmful side effects! So, why there are still so many patients or people still wanted pain medications!

    Nevertheless, there are many other: and “much more authentic and viable methods to maximally reduce body inflammation, disintegration, dysfunction, disharmony, disequilibrium, etc. etc.; so that patients can and will manifest their “Highest—Health, Vitality, and Well-being given the nature of conditions they undergone!”

    —By Amy LifeStar, HD & Ethicist

  3. Terri Lewis PhD at 8:26 am

    What do I do now? Advocate!

    Welcome to the first gathering of individuals and families who are challenged by chronic pain. Whatever the experience that brought you here, we are joined by a common experience – injury or illness, changed status, the need for competent and sustainable health care appropriate to your injury or illness, and the need fo r reliable community resources. I want to use my time to address the issue of ‘advocacy.’ What is it? How do we use it?
    The first question after the onset of illness or injury is generally “What do I do now?” Along with this is the dawning recognition over time that you don’t know what you need to know to effectively navigate the system issues that you’ve been thrown into. Rarely do you have an understanding of the injury or disease that requires ‘instant expertise.’ So, I want to address this in two ways – the focus on the beloved individual who has been injured or experienced the onset of illness, and the family, care partners friends and community systems that have to be mobilized to advocate on behalf of the individual as they adjust to their altered status.
    The experience of an injury that leads to a psychological or physical disability is similar to enduring a mourning process and that some equate with the loss of a loved one through death; The mourning process can involve adjustment to the disability the person experiences and may progress through a series of recognizable stages or tasks – shock, denial, anger/depression, and adjustment/acceptance. The types of advocacy skills that we cultivate and employ are specific to different needs. As importantly, the models through which medical services are delivered and the goals we set for recovery are wholly different depending on the stage of adjustment.
    These stages are expected, but they are not orderly or neat. People with disabilities, especially those with new disabilities, go through these stages at their own paces and some might skip whole stages entirely. A difficulty exists when the person has trouble with resolving one of the stages or becomes, ‘stuck.’ When this happens, further progress towards adjustment and acceptance is hindered. Often, becoming stuck is a matter of system failure or processing the person through the wrong health care model of recovery coupled with inadequate advocacy approaches. We use our advocacy skills to unstick what’s not working.
    The one thing we rarely talk about or recognize is that individuals do not operate in isolation. They are surrounded by family, friends, and community who are affected by the changed roles imposed by illness or injury of a family member or friend. This change requires adaptation of roles and responsibilities and imposes whole new roles for advocacy. But we rarely acknowledge or address the importance of this as important for recovery of the entire family. During the time it takes to move from the states of shock and denial to adjustment and acceptance, we are also adapting and incorporating the advocacy skills necessary for family adjustment. In short, the family also goes through these stages parallel with their family member and their ability to move on requires learning new self-efficacy behaviors we associate with the process of advocacy. And that is why you are here.
    A number of different types of advocacy exist. The strength of each advocacy
    type depends on how well the individual, familys’, group or organisation’s advocacy efforts to meet the key elements expressed in the definition of advocacy. The types of advocacy have been categorised in different ways. There are five types of advocacy that we are often challenged to learn on the fly as we move through a traumatic event. Just as the individual moves through the stage of denial, families also move right along with this – but unlike recovery from the injurious event, the family structure is injured by a change to internal roles and responsibilities. All of our energy is focused on the individual, often to the exclusion of addressing the development of knowledge and skills necessary for the family to adequately support and advocate for their individual and their own needs. I think we need to talk about this so lets discuss the types of advocacy and how we can employ them systemmatically and effectively:
    Self-advocacy refers to an individual’s ability to effectively communicate, convey, negotiate or assert his or her own interests, desires, needs, and rights. It involves making informed decisions about your medical care and taking responsibility for those decisions. Self-Advocacy is learning how to speak up for yourself about decisions that affect your own life, learning how to get information so that you can understand things that are of interest to you, finding out who will support you in your journey, knowing your rights and responsibilities, problem solving, listening and learning, reaching out to others when you need help and friendship, and learning about self-determination. It is very affected by the model of medicine and our own levels of confidence to engage with the discussion.
    Individual Advocacy is a form of informal advocacy, wherein parents, spouses, brothers and sisters, relatives, and friends take on advocacy roles and speak out to persistently advocate for those who are vulnerable. They address the unrecognised and unseen, and struggle with injustices with little or no support. These individual advocacy efforts can and do last many years. Solo efforts can isolate individual advocates from their communities by the very nature of their efforts, particularly where the issue is controversial or perceived as detrimental to the wider system or environment in which the issue is placed. Chronic pain and access to health care is such an issue. These advocacy efforts by individual people on behalf of other people need to be supported, nurtured and protected. Individual advocates benefit from being connected to others doing advocacy; to share the effort, to seek support, or to develop a collective response. That is the benefit of social media platforms where individual advocates can easily link with advocacy groups for information resources and further contacts. The limitation of social media however is that it may not deliver the specific skills building necessary to assure effectiveness. Voluntary community based organisations are another form of individual advocacy that pay staff to advocate for individuals. Some offer training at the local level.
    Parent/Family advocacy is concerned with advocating on issues that affect the person with a within their family. The focus is generally on the needs of the person with a disability but some parent advocacy focuses on the needs of family unit first. While parents have substantial needs for support and resources, when we talk about parent and family advocacy I refer to this advocacy by groups aligned around common needs to address the needs of their family members.
    Citizen advocacy is a community based movement that aims to recognise, promote and defend the rights, well being and interests of people or specific issues. You are doing this here today. It does so by finding and supporting caring, responsible citizens who make long-term voluntary commitment to make a positive difference in the life of a persons who are challenged by “at risk” situations within their communities. Each citizen advocacy relationship is unique. The citizen advocate may for example, engage in a protégé friendship, and be authorized by affected individuals to represent specific experiences and opportunities, serve as a spokesperson or to offer protection from abusive processes. The citizen advocate may serve in a ‘helper’ role, as an at large member of the community whose concerns are aligned with specific community needs expressed by individual members of the community.
    Systems advocacy is primarily concerned with influencing and changing the system (legislation, policy and practices) in ways that will benefit people as a group within society. Systems advocates will encourage changes to the law, government service, program policies and community attitudes. Usually systems advocacy does not do employ individual advocacy. To do so can cause conflict around the use of resources, focus and purpose.
    The advocacy tookit contains a number of key elements for our use. Advocates must operate with minimal conflict of interest, and where they exist, they are disclosed and available for review. The advocate operates not from a position of personal benefit but from a position of sincerely held interests. Advocates function by speaking out, acting or writing to promote the well being and social justice needs of a person’s welfare. Advocacy requires something referred to as “vigour of action” represented by depth of feeling in advancing the cause or interest of another, taking a lead, initiating, managing a sense of urgency, and doing more than what is done routinely to challenge the community.
    All activity is not advocacy – it is important to keep that in mind. Not all activities are productive or effective. Not all persons are effective advocates for their ‘causes.’ As an advocate you need to be prepared; to bend over backwards to pursue and achieve even small, ordinary gains. You need to commit to becoming an effective and informoed spokesperson for your issues. Instead of only writing a letter to the editor or responding to a facebook post, it may require you to also pick up the phone and make an appointment with your elected representatives. Complaining is not the same as advocating. Instead of registering your concern once and claiming that it didn’t do any good, you need to develop an up close and personal relationship with people who are charged to manage specific systems and manage change.
    The question for each of us here today, is what will we do tomorrow? I encourage you to take a number of very specific steps:
    • Decide how you want to advocate and make a commitment to become the most effective you can at the strategic method you choose – self advocacy, individual, family, citizen, or systems advocacy.
    • After you have staked out the action you are going to employ, become informed and take responsibility for acting on that knowledge, becoming an expert for the problems you want to address.
    • Ask for help from the advocacy community.
    • Share your what you learn. Remove barriers. Play well with others.
    • Contribute to the kind of data collection that improves citizen and system advocacy and results in improvement to public policy. Patient generated research is critical to moving the needle.
    • Support other advocates in their efforts.
    • Develop a personal relationship with your community leaders and elected officials. Invite them into your homes and illustrate for them the gravity of your concerns.
    Thank you for your attendance here today. It took an enormous commitment to overcome all of the difficulties associated with your attendance. We are unorganized, but we are organizing. The stakes are too high to step back from the precipice of this broken health care system. Your VOICE IS IMPORTANT. NOTHING CHANGES UNTIL WE DO! Our loved ones are depending on us. Be well, enjoy each other’s company, and take the time to enjoy everything that is free in beautiful Washington, DC!

  4. Jean Price at 4:45 pm

    Misti…I’m so sorry you live such a reduced life because of pain. And I also live with a spouse who has seen so many areas of our life together reduced because of my pain. In fact, I realized this year on our 48th anniversary, he had lived with a wife in pain more years than with a wife without pain…me being that same wife!! That was a blow to recognize for some reason, even though we have come through major upheavals of health issues and still stayed together. Long ago, a dear friend once helped me see that I am so much more than my pain, I am all these wonderful characteristics first and foremost! And I would say the same to you…you are a bright, creative, talented, beautiful soul and yes…you happen to function less than some and you live (heroically!) with pain that you don’t deserve. Yet you are so WORTH being with, and I’m betting your husband agrees, even in his frustrated moments!. My spouse and I AND our daughters were greatly helped by grief and loss classes, since pain is definitely a family disease and impacts everyone in different ways at different times. It helped them all AFFIRM their own pain at seeing me hurting and unable to share parts of life with them. My youngest daughter was getting the brunt of house chores (read: MY chores!) heaped on her, and one day I just told her…”If you feel put upon and unfairly burdened by all this, it’s true! You are!” She burst into tears and that started a tearful yet healing conversation that helped us cope with the summer together… while her dad and sister worked and could escape some of my reality! I offer you this information because I have been in some low spots and I’m hoping it will help keep you afloat and able to live more joyfully. It’s so hard for others….they want so badly for us to feel better…so they will then feel better. Yet the fact is, they are burdened too! And the frustration and being out of control is extremely difficult for them also. I realized how poor most people are at supporting others when I first was unable to care for myself! Few realized they don’t have to fix it, they just need to stand beside us and allow us the right to not be of the sunniest disposition all the time, the right to hurt no matter how good our decisions were or our doctors were…and also to affirm how they can’t possibly know how tough it is for us…so we can then help ourselves see more goodness and more hope.

    My prayer is for the rally to start rekindling a climate for pain medications to return to a more normal care routine…and then we all can focus on enrichment instead of just pure survival!! That’s what the pursuit of happiness is about…no matter your level of functioning! That’s what can give us back our lives!

  5. misti at 11:21 am

    the more this can be spread on social media the better twitter ,instagram, youtube
    FaceBook is not being seen by the younger generation this effects their future too
    I had a failed neck surgery and many other issues going on
    Pain effects every aspect of many of our lives
    My husband had a very out going partner at 1 time and now i hardly ever leave the house my home will be featured on Hoarders next season if I continue on the path that the Government has paved for me.
    following a yellow brick road to Oz unfortunately it is all smoke and mirrors
    Yes I am angry but I pray for peace I have to remain still or pain gets unbearable
    Husband is so frustrated that he said I should go into a nursing home outta anger
    Yes Ouch it hurts but there is nothing I can about it
    WI doesn’t allow Kramton even if it were to be legal for others
    what is funny is I get very low dose pain meds and last time I went in to get drug tested 2 years ago it was a surprise pee test when I had my child in doc office and doc after he told me he checked my pulse and i was like whatever but if i was nervous i had taken a few extra of my pills just to get there the day & night before and he siad to me there is nothing to worry about cause I see you are not nervous heart rate is good and then he told he will only look at meds he perscribed could he be trying to trap me to seek illegal help I have no clue but the pain is real and I will not mess what I have been given

  6. Jean Price at 10:19 am

    This is the first really PUBLIC effort by those in pain to press forth the issues involving our care needs in such a public forum..and to let others know we won’t be silenced by our pain…just challenged to be creative and not be AS hindered by it!! And for those of you who can’t attend or don’t have a surrogate to send in your stead, you can STILL be a very big part of this effort…through your prayers, your donations no matter how small the amount, your efforts to spread the word, by generating any publicity you can, and by your letters to tell your story. Wouldn’t it be great if Lana had a huge bundle of letters to show at the rally from all those who cannot attend because they are in MORE pain than they need to be in due to the current guidelines and opioid witch-hunt!?! Let us all commit to follow up this events efforts where needed, with our ideas, our letters, our contacts, any outreach needed, and our support in every way! This can be the beginning of something active….to help us all, and help those in the future who have to deal with daily, persistent pain. All those who have said they want to help, NOW here’s your chance! As with anything worthwhile, it will take all of us lending a hand, each of us doing what we do best, and working TOGETHER despite our differences or politics or egos or organization…or whatever might hinder the greater good. We CAN do this! We must do it…no one else is going to come to our aid! And no one else knows what’s involved if we don’t succeed! WE ARE NOT OUR PAIN…WE ARE PEOPLE WITH A PUPOSE AND A LIFE TO LIVE AS PRODUCTIVELY AS POSSIBLE WITHIN THE REALITY OF OUR HEALTH CONDIDTIONS!! And we deserve the best care possible!

  7. Dave at 7:24 am

    Statement by David Becker

    Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has. so said. Margaret Mead We committed citizens from rallyagainstpain must create a new world a far better world of eternal dignity, as President Truman wrote, and bring new hope and restore humanity and sanity for all people in pain. We must create this new world of pain care for there has been not only a continuous escalation of market and regulatory failure in pain care but increasing cruelty and a great diminishment of natural rights and sanity in pain care, as well. Pain care in America has degenerated into theatre of the absurd and theatre of cruelty. It is an evil that only belongs In books like Brave New World or like Kafka’s The Trial or An Artaud play. Pain care In America today has no place in the civilized world.

    It is one thing for an administration to be frozen in the ice of indifferentism and to not live in the spirit of charity, as FDR wrote, but no other President in American history has done more to destroy the hopes, lives, and natural rights of people in pain then President Obama and his administration. No other President has acted in bad faith when creating a National Pain Strategy which his own staff- Wanda Jones called just a beginning, by refusing to fund such. Americans deserve much more than just a beginning for the 170 million Americans who suffer pain every year and the ruinous consequences it can have on their marriages, their careers, their children, their quality of life and their mental health. And in response to letters from Senator Hatch, members of Congress and dozens of interest groups Obama’s staff Dr Novotny showed his jaunty disdain to people in pain by laughing about the prospects for the national pain strategy.

    Hey did you hear about the Surgeon General’s new warning that seeking pain care is dangerous to your health and makes the country addicted. Like many key decision makers in DHHS the Surgeon General lacks knowledge, sincerity, and empathy for people in pain. He is too far removed from their lives and if he or anyone in the Obama administration believes that debate on pain care should be uninhibited robust and wide open- name the time and the place for such debate-and ill be there. But I know that none of them believe in deliberative democtracy or agonistic democracy. Its there way or the highway. We are free to think what we wont- theyre only interested in us obeying them.

    When NIH Director Collins first came to office I asked policy staff at DHHS about him and pain and was told they had to have several talks with Dr Collins to convince him that pain is important. But we know he has failed the folks at meaction and continues to treat pain as unimportant as evidenced by the stingy budget for pain research.

    Helen Keller wrote: it’s a terrible thing to see and have no vision- how bout the members of the NIH pain consortium and IPRCC- they are visionless and lack the motivational intensity to make pain care much different or better then it is today. And as the Bible suggests people in pain are perishing due to the visionless experts throughout DHHS and the Obama administration. People in pain need an administration that is capable of much greater dedication than the inward focused and self referential and self interested staff at DHHS. They should not be allowed to chart their own course but instead should reflect the collective will of the American public including the 175 million in pain. But which one of them can claim they have made a real effort to hear no less consider what Americans in pain want? I can certainly name several that have ignored my free speech right but I can’t name a single one that made it clear they care to hear my opinion- despite the fact that I have gotten 3 pieces of legislation in NYS requiring education in pain care and despite my influence on my Congressman Engel to introduce the palliative care education bill in Congress.

    Lets not forget CDC Director Mr Frieden. He was commissioner of NYC when NYC Hospitals were rated the worst in the Nation. President Johnson wrote the important thing to consider about any policy is not the good it may do but the potential harms of the policy. And instead of empathy for the plight of millions of Americans in pain Freiden has added greatly to the suffering and perfect misery by cruelly and carelessly creating guidelines for opioids without regard to their effects on the lives of people in pain. You will hear today how his efforts have added greatly to the adjustment burden, the symptom burden, the treatment burden and the financial burden of pain for millions of Americans. But, of course, Mr Frieden won’t accept responsibility for that. His actions cannot be squared with any theory of health justice or morality. He, like the rest of Obama’s administrative authoritarians suffer from hubris syndrome and make clever use of what’s known in criminology as the neutralization effect. He claims there are no harms to his opioid guidelines, that the high cost of unreliable urine drug tests that can cost people their jobs and livelihoods or pain relief are not his problem and that the CDC is not responsible for any harm to people in pain by doctors refusing to give any opioids or closing their practices and after all the important thing is not people in pain- the important thing is to prevent addiction at any cost to people in pain. And lastly, they deride us with their discursive imperialism and eliminative materialism as not being one of them- we are “others” that can think what they want as long as we obey the morally disengaged and disempathic designs of the Obama administration. After all, the Obama administration regards people in pain as drug-seeking, malingering, catastrophizing, menopausal, peasants and serfs with no rights. To him people in pain are problems and not people.

    Obama’s DEA has gone after people in states where marijuana is legal and he has tried to prevent pain relief from Kratom. No other President in U.S. history has been crueler to people in pain then Obama. Whether its marijuana, opioids, kratom- whatever helps people in pain Obama feels he has the right to take away anything that helps people in pain for any reason or no reason at all.

    Instead of creating a more perfect Union with his policies and practices- here we are today- a disenchanted faction of Americans caused by the cruelty of the Obama administration. Instead of serving the happiness of people As Jefferson said should be the goal of government, Obama has made people in pain miserable, scared,helpless and hopeless.Instead of deliberative democracy, Obama’s right wing authoritarianism has denied all recognition of free speech and democracy in pain care. He has cherry picked industry representatives to advisory committees and their social darwinism is to pursue their organizational interests and occupational interests and ignore the voice and concerns of people in pain. Their claim is that people in pain are not qualified to have an opinion about their care- and we’ve heard very similar from the AMAs Patrice Harris with regard to people in pain being heard in regard to outpatient surveys. Instead of a fair chance to be heard by doctors and by the CDC,CMS, FDA, DEA he has acted like judge jury and executioner by assuming all people in pain are guilty of addiction until proven innocent and has denied, and has no regard for the free speech rights of those he believes are addicts.

    Obama has long since forgotten the memory of freedom that our founders and Veterans fought to obtain and maintain and he has locked people in pain in an iron cage of poor pain care that lacks vision, empathy, humility or any virtue for that matter. He brooks no doubt that he stands in the light of nature and regards all others- including people in pain as being stuck inside Plato’s cave. His administration has done with people in pain the same thing that Edward the VIth did with the rights of his people- given them to a few powerful individuals to do as they please with the lives and rights of people for pain. For the sake of oligarchs power, profits and prestige. And now millions of people in pain not nly suffer from cruel pain care but ar relegated to moral and civil vagabondage.

    We’ve learned too many times that doctors have used CDC guidelines to stop opioid prescribing even with patients they’ve had for years that have had no problems with opioids. Often these doctors offer either no treatment at all or ineffective treatments or treatments that insurers don’t cover. In their comments to the National Pain Strategy, no medical professional called for lowering the prevalence of pain and no medical organization has an inspiring vision or energetic plan to make pain much different or better than it is. They move at a petty pace because they can and they don’t wish to be held to a higher standard and don’t care much about pain or people in pain. They understand that people in pain are like a conquered nation and they feel free to treat people in pain any way they wish. They dont have the right stuff, they, too, lack the commitment, the motivational intensity, the vision, the humility, the caring, the empathy to do what is best for people in pain. Pain care in America is not dying with a bang- it’s dying with a whimper from a whimpering and whiny medical profession that to this day refuses to see that all doctors have education in pain care- despite pain being the most common reason that people seek medical care.

    Nora Volkow in the Pain Consortium has written of the great risk of suicidality of people in pain and that veterinarians receive 75 hours of pain education and doctors only ten. And while some of the most advanced treatment for pain is too costly for most Americans- it is readily available for pets and animals. Go figure. Animals get a moonshot for pain- people in pain get moonshine in the form of treatments based on unreliable research and a one size fits all approach that doesn’t consider the preferences, experience, ideas, values, of people in pain. And If it’s not their way it’s the highway. Their way is often riddled with misdiagnoses, undertreatment, treatment that is prejudiced toward Blacks, Hispanics women and children. If you have fibromyalgia, chronic lyme disease you’re likely to be mistreated and disrespected by doctors.

    Evil can only exist when good people do nothing. It is clear due to the evil cruelty and longstanding neglect and failure of our markets and government that we- the people- must now act to restore humanity and sanity and the natural right to life, liberty, and pursuit of happiness to people in pain including the right to pain care of our choosing.Our government and marketplace have become angry extremists and hysterical mobs with regard to opioids and they never had much respect or humanity for people in pain. And we come here with the same resolve that JFK had when he wrote-Let every nation know, whether it wishes us well or ill, that we shall pay any price, bear any burden, meet any hardship, support any friend, oppose any foe to assure the survival and the success of liberty. We will create the symbols of a new day for people in pain and a new world of dignity for people in pain. We can do no other.

  8. Lisa at 1:26 pm

    This is a horrific situation that no one should ever be in . Quality of life is number one , what happen to freedom of the people ? Do no harm ? Instead millions of people are fighting for their right to live i can’t wrap my brain around this !!! The Dea backed off of kratom cause over 140 signatures were collected ! If millions of people take pain meds were are the signatures ? It would be great if we can plan a rally in every state . Whats even more depressing , why are doctors not fighting for their patients ? People are losing their jobs , dignity and hope .

  9. Dan at 10:31 am

    I read on a article somewhere fron the national pain report i think. that the cdc were taking comments on the new cdc guidlines on their website. But i go there and its closed to comments. This shoulda been posted publically so everyone had a chance to tell how their lives were destroyed over these guidlines. They must not have neen accepting comments very long to close the comments. When are they ever gonna hear everyones story.

  10. Sandy at 10:18 pm

    Danny, I’m praying you will be physically able to attend this rally on the behalf of so many of us. I understand also not being able to make plans, especially too far in advance because of our PAIN. I had a hemorrhagic stroke when I was 53 years old, and back pain before the stroke, having injections and.procedures until 2 years ago when diagnosed with Scoliosis. I suffer from a condition called “Thalamic Pain Syndrome.” Like the rest of you, my neurologist said he will not be able to write any prescriptions for my pain medication. My primary care physician wants me off several of my medications that I have been taking for years. My pain is real, I can’t do anything because of this terrible pain 24/7. I wish I didn’t need medication, but there is no cure for this condition except some medications that give me some reliief. As I lay here in bed at midnight, I cannot sleep and my pain is so unbearable, I could scream. Why is our government telling our doctors we can’t have our medications because of Junkies who just want to get high. And those Hollywood people who mix meds with other things and die is not our fault. What they are doing to us is like taking insulin from a diabetic. Are they going to take their medication away from them? No, they are just going to take it away from those of us in such pain we have no life. My husband prays for me, my grandchildren want me to not hurt. I really hope and pray this rally with those wonderful people who put this together will be able to bring attention to those who do not care about us. I am 69 years old, I am not going to be an addict at this age, I just want some relief from this horrific pain. To All of you who have the talent and have written so graciously, thank you and let’s pray someone will understand we are not here writing and hurting so bad for no good reason. Someone please hear us and try to understand.

  11. Milinda Williams at 10:14 pm

    I have been on pain medication due to several reasons for 12 years! Same medication same dosage! My tolerance gave out! My primary care doctor in Oklahoma! One day after I discussed that they no longer worked claimed he gave me enough! I have no health iinsurance! So I’ve stayed on what I could afford! Because I wanted to discuss changing my treatment he said he no longer was going to dispence pain medication! I had to seek pain mgmt! Very expensive! Due to my quality of life I’ve gave up everything to pay for this! To just uo and take a person off or refuse treatment doesn’t do anyone any good! I bout lost my life due to the abrupt halt! The pain mngt also cut me down due to the laws! I was on the lowest just about u cud be! I can’t afford the long term acting pain meds and currently applying for my dusabilty! By which ive come to find out they don’t cover oxycotin as to exsoensive! We are made to feel like addicts because years ago when I started on these not one doctor worried about the addiction part! I had only one doctor bless his heart explain it was my quality of life not addiction! I cried that day just to be treated as a human! He retired and has been a nightmare since! They highly publicize the dangers that more deaths due to overdoses! I don’t think one single medication does that! But combined with 2 or 3 and anxiety meds and achahol seems to me causing the deaths! We are forced if we are dropped by a doctor to find ways to get our medication! Taking and dropping people at a whim because these laws is not the answer! I have bulging discs L 2,3,4! Spinal stenosis! Permant nerve damage right leg! Rhuemtoid arthritis! my knees are needing replaced! And I’m not a canidate for any releif! I do currently have a pain doctor but due to all the scares he’s reluctant to up my dosage! Im 60 and just want live pain free! I have never done any illegal street drugs but have seen many GI to that because they were dropped for whatever reason! You cannot just up and take sumone off these medications after years if use! Why why arnt these doctors aware of that! Now some people I know are being given the drug that reverses heroin addiction! This is so wrong when the heroin addict can’t get it! This is all being done so wrong! No one wants to try go cold off these meds as the horrific sides effects! I had started on these over s herniated discs never being told what I’d be going thru now! I pray for any one that as I can’t have a quality of life or is dehumanized because we need this medication! And the doctors are the worst! The day my doctor dropped me was done by his nurse out in the reception area! All I did was go in 2 days eearly for my medication as I said I had been on same medication same dosage for years! And I was in a car wreck and had taken 2 extra; and ran out! this is so getting to where the goverment wonders why there’s a black market! I’m just being honest here hoping someone will listen and take into consideration we are humans Doctors need to be more emphatic and not scared to treat us! Life in misery due to government control!

  12. Lana Hill at 12:37 pm

    Dear Lana, I am a pain patient with well documented issues that make it very difficult to find a qualified physician to take over my care. I live in Indiana and would like very much to at least tell my story. I was one of those “pain refuges “who traveled to CA for 10 years. During which time my pain was well managed and I was able to have quality of life, care for myself and others. My world was turned upside down when I no longer had the support to continue those expensive and trips every three months. Since last year November my health has deteriorated to the point I would be thankful if God chose to let me escape from this constant excruciating pain I am forced to live with. As a result I now have multiple diagnosis such as a thyroid disorder, anemia, flares of HBP, sleep deprivation, severe anxiety, and fatigue. I miss my life and with every day I feel my body is failing me. I may not be able to go but hope that in some way to help. I need HOPE. Please contact me. Lana H.

  13. Danny Elliott at 9:30 am

    Teresa, I’m so sorry that you are having to deal with your pain without the medication that is necessary and required to give you some relief. And I know that there are many others who have had their meds reduced or stopped completely. It’s outrageous that, for many doctors, “Do No Harm” has been superceded by “protect my medical license” due to the threats and scare tactics coming from the DEA and CDC.

    The main motivation for my attending the “Rally Against Pain” is because so many people simply cannot get there, due to their pain and all of the fallout that is a direct result of that pain. (Fortunately, for me, I live fairly close to Washington, DC, while so many others don’t. So that is a major factor, as well.) I’m sure that most chronic pain sufferers are like me, in that my finances have been decimated by 25 years of doctors, tests, treatments and, most importantly for me, having to live on a Social Security Disability income. I’m grateful for it, but it’s not much money.

    My biggest fear is that, while I’ve talked so much about going to the Rally to represent all of you, there’s no guarantee that my pain won’t flare up and prevent me from being able to go. But, I can say this:
    I haven’t been more motivated to do something like this since I realized my pain was going to be a big part of the rest of my life. That was about 23 years ago. But, I honestly believe that this is THE most important thing I can do to fight back against the discrimination we are experiencing. And I truly believe that my Heavenly Father has presented me with this opportunity. He has given me a purpose and I haven’t had a purpose in a long time. And He will help carry me to Washington and back.

  14. Teresa at 9:31 pm

    I so wish I could go. And I do not have any friends or family to go on my behalf. They would never do it. I have been telling my own support group members as well as many in other groups that NOTHING is ever going to change unless we band together as one and head to D.C. So glad that it is finally going to happen. I would make sure to let the powers that be (ha!), realize that if a person has been declared disabled, whether that be from a doctor, Social Security/Court, it is considered discrimination to withhold someone’s medications from them and they can be sued for doing it. Pharmacies can also be sued for discrimination for refusing to fill the meds for those of us who are disabled. It is against the law according to the Americans with Disabilities Act. And remind them, those “guidelines” they use as an excuse, are just that. Guidelines=Suggestions. They aren’t law. The decision of what to prescribe and how much is still the doctor’s decision. In many states they actually have basically the same laws regarding prescribing pain medications as we do here in Oklahoma. ANY physician can prescribe pain medications. Per the Oklahoma State Board of Medical Licensure and Supervision: The appropriate application of up-to-date knowledge and treatment modalities can serve to improve the quality of life for those patients who suffer from pain as well as to reduce the morbidity and costs associated with untreated or inappropriately treated pain. For the purposes of this policy, the INAPPROPRIATE treatment of pain includes: NONTREATMENT, UNDERTREATMENT, OVERTREATMENT AND THE CONTINUED USE OF INEFFECTIVE TREATMENTS. The Board encourages physicians to view pain management as a part of quality medical practice for all patients with pain, acute or chronic, and it is especially urgent for patients who experience pain as a result of terminal illness. ALL PHYSICIANS SHOULD BECOME KNOWLEDGEABLE ABOUT ASSESSING PATIENTS PAIN AND EFFECTIVE METHODS OF PAIN TREATMENT, AS WELL AS STATUTORY REQUIREMENTS FOR PRESCRIBING CONTROLLED SUBSTANCES. Accordingly, this policy has been developed to clarify the Board’s position on pain control, particularly as related to the use of controlled substances, to alleviate physician uncertainty and to encourage better pain management. Inappropriate pain treatment may result from physicians’ lack of knowledge about pain management. Fears of investigation or sanction by federal, state and local agencies may also result inappropriate treatment of pain. Appropriate pain management IS THE TREATING PHYSICIAN’S RESPONSIBILITY. NOWHERE DOES IT STATE ANY OF US BE FARMED OUT TO THESE SO-CALLED “PAIN MANAGEMENT DOCTORS – IT STATES: APPROPRIATE PAIN MANAGEMENT IS THE TREATING PHYSICIAN’S RESPONSIBILITY. As such, the Board will consider the inappropriate treatment of pain to be a DEPARTURE FROM STANDARDS OF PRACTICE AND WILL INVESTIGATE SUCH ALLEGATIONS, recognizing that some types of pain cannot be completely relieved, and taking into account whether the treatment is appropriate for the diagnosis. The Board recognizes controlled substances, INCLUDING OPIOID ANALGESICS, MAY BE ESSENTIAL IN THE TREATMENT OF ACUTE PAIN DUE TO TRAUMA OR SURGERY AND CHRONIC PAIN, WHETHER DUE TO CANCER OR NON-CANCER ORIGINS. Pain should be assessed and treated promptly and the quantity and frequency of doses should be adjusted according to the intensity, duration of the pain and treatment outcomes. Physicians should recognize that TOLERANCE AND PHYSICAL DEPENDENCE ARE NORMAL CONSEQUENCES OF SUSTAINED USE OF OPIOID ANALGESICS AND ARE NOT THE SAME AS ADDICTION. PHYSICIANS SHOULD NOT FEAR DISCIPLINARY ACTION FROM THE BOARD FOR ORDERING, PRESCRIBING, DISPENSING OR ADMINISTERING CONTROLLED SUBSTANCES, INCLUDING OPIOID ANALGESICS, FOR A LEGITIMATE MEDICAL PURPOSE AND IN THE COURSE OF PROFESSION PRACTICE. COMPLIANCE WITH APPLICABLE STATE AND/OR FEDERAL LAW IS REQUIRED. The Board will not take disciplinary action against a physician for deviating from this policy when contemporaneous medical records document reasonable cause for deviation. Oklahoma enacted a provision (1) stating that Schedule II, III, IV and V drugs have a legitimate medical purpose (2) encouraging physicians to view effective pain management as part of quality medical practice and (3) authorizing a doctor to administer a high dosage of controlled drugs if that doctor feels that dosage is part of appropriate pain management for that patient. OKLA. STAT. ANN. TIT. 63 § 2 ]551 (West 2012). So you see, all of the excuses we hear, “oh would could lose our licenses, we cannot prescribe because we aren’t pain management doctors” is not true. We get lied to continuously. And we are not treated and cared for according to the laws of our state. The thousands of doctors in this state are breaking the laws and are allowing us to suffer. Access to pain treatment is a HUMAN RIGHT. According to the international human rights law, countries HAVE to provide pain treatment medications as part of the their core obligations under the right to health: failure to take reasonable steps to ensure that people who suffer pain have access to adequate pain treatment nay result in the violation of the obligation to protect against cruel, inhuman and degrading treatment. Pain has a profound impact on the quality of life and can have physical, psychological and social consequences. It can lead to reduced mobility and a consequent loss of strength, compromise the immune system and interfere with a person’s ability to eat, concentrate, sleep or interact with others. A World Health Organization (WHO) study found that people who live with chronic pain are four times more likely to suffer from depression or anxiety. The physical an psychological effects of chronic pain influence the course of disease. Chronic pain can indirectly influence disease outcomes by reducing treatment adherence. For moderate to severe pain, the WHO recognition of the absolute necessity of opioid analgesics has reflected the consensus among health experts for decades. Like I said at the start of this, I do wish I could attend. But I have been trying to deal with 36 different disease and illnesses the majority of which cause horrendous chronic intractable pain and since March of this year, had one of the meds I’d been taking for over 8 years just yanked out from under me, and now all of the rest of them. My Primary Care/Internal Medicine Specialist has outright lied to me more than once and uses excuse after excuse as to why he refuses to help me, even though it is public knowledge that he giver 20% of his approximately 350 patients the exact same pain medications I have taken for right at 16 years. I am in so much agony, just typing this has totally exhausted me. Just know I will be there with those of you who are able to attend in spirit and hope above all hope the people in D.C. listen. And they DARE to wonder why so many chronic pain patients end up turning to the “streets” just to get relief. They are clueless to the fact that the suicide rate among chronic pain patients has and will continue to skyrocket if this “game” they are playing with our lives, doesn’t stop. In the meantime, for several months now, and off and on throughout all of the last 16 years and longer, I’ve been bedbound and housebound. Thank goodness my youngest son (33) lives with me and helps take care of me. His heart is literally broken watching his own mother suffer and the 12 specialists I see refusing to help me. My other two grown children are just as upset and my three grandsons, just want their “Granny” to stop hurting.

  15. Krissy at 7:59 pm

    Thanks to you who mentioned that you will represent those of us who cannot attend. I hope there is a lot of publicity and contacts have been made with strategic planning so the national news will pick up the story.

  16. Lana Kirby at 4:35 am

    Thank you everyone for your support! I agree 100% with the previous comments that one should never underestimate what a group of determined individuals can do. Just like voting, some people may think that one person or two people doesn’t make a difference. That’s just not true. Every person makes a difference. Every person deserves the right to be heard. Every person deserves the right to participate in the decision making process of their own medical care. The government is intruding on your physician-patient relationship. This is your chance to be heard. I look forward to seeing everyone there!!! Join Us!!!

  17. Dave at 5:13 pm

    Janis- Amen. I hope and pray that our creator will hear our pleas and that better Angels will prevail in pain care.
    I will oppose the soulish and selfish designs of so called experts in the health care industry that are inured and disrespectful fot eh vices and lives of people in pain.
    We have a long march through our institutions to restore sanity and humanity to pain care aand we hope all who have a hear to care will join us in praying and working toward a better future for all who suffer with pain.

  18. Jill Jensen at 11:36 am

    I sure hope there is a LOT of media and talk-show attention highlighting the horrific plight the chronic pain community is enduring as a result of the illegal acquisition and use of the pain medication that keeps patients sane. Our pets are treated better than we’re being treated!

  19. Silvia at 10:56 am

    For those who are to I’ll, bed ridden or financially unable to attend, what can you take, to show the millions of people who are suffering needlessly from these CDC’S guidelines. A mile long signature scroll, pictures of us, emails, letters, what can you physically show our presence there.
    There is still time,,,,

  20. Richard A. Lawhern, Ph.D. at 9:45 am

    I will be among the speakers at this event, on the subject “CDC Opioid Guidelines – Neat, Plausible, and Generally Wrong!” . For those wishing to sign on and join us for the day, there is an RSVP gateway at Come and meet others who share your concerns. If you can’t come yourself, then ask a friend or family member to represent you. Make yourselves heard.

    Regards all,
    Red Lawhern

  21. cindy deim at 9:40 am

    You may not be able to travel to Washington. But you can you your vote and write everyone from the CDC to the President to tell them your story. The more people that write the better those in power will realize what is happening. Please use the power you do have to write to our elected officials and let them know we are fighting back!!

  22. Danny Elliott at 9:26 am

    Lisa Hess, Google “Rally Against Pain” and you can get all the information you want. It’s understandable that many can’t make it. I think they tried to get the word out but I don’t know when the planning started. I’m lucky that it’s a few hours drive for me. One reason I’m going (hopefully) is to represent those who can’t make it, for whatever reason.

  23. Jesika Edith at 9:06 am

    The rally is been organize by Lana Kirby and her group Veterans and Americans United for Equality In Medical Care. One of our big contributors and supporter is Dr Red Lawhern . Together with Lana had created a numerous articles , all the documentation for the rally , letters that will be deliver that day .
    We also have Dr Terri Lewis who recently launched a survey that will be use to address those who had lost their meds and medical care due to CDC regulations.
    There will be help on DC to transport people from the airport to the rally site and their hotels . Anyone interested please contact Lana Kitby , Dr Red Lawhen or Rally Against Pain site

  24. Angel at 8:08 am

    Im thankful to all who went to DC to advocate for pain patients! The cruelest part of this war on pain patients is the vast majority of us are too ill to protest too ill to speak out. We patients have no lobby no voice and are incredibly grateful to those that speak out on our behalf like those represented in this article as well as for bringing awareness

  25. Tracie Carlson at 8:06 am

    I think this is wonderful and I wish I was able to join you. I’m tired of being treated like a drug addict and the stress affects my entire family.

  26. Janis Gustafson at 8:06 am

    My request to my primary care Dr. To make a new asessment of my pain condition, was met with the suggestion that I try “salon pas”! Reiterating the same request to the female urgent care Dr., Was responded with “my hands are tied, Jan! The war on drugs is out of hand leaving Doctors who wish to do no harm, with their hands tied in order to be politically correct!! We can not miss this opportunity to make the public and our GOVERNMENT come to grips with the abuse to people in pain through no fault of their own, contrary to ill drug abuser,s! We need to clean house in government from the top down!!! Who are these people in power who have this kind of control? Women especially,. who have a monopoly on the major disease’s, lupus, fibromylgia, chronic fatigue, and others, are outraged at the lack of support and the failure of “the powers that be,” in allocating enough research money to wipe out illness that affects us and all the members of our family!! We are GOD loving and fearing women who pray often in a day, for HIS grace and love to sustain us through unremitting pain and suffering!! We need to vote into office only those who are willing to take our plight seriously!!! So many groups of people are making their demands made known in our country today. Our needs are just as important!! GOD will smile when our voices are heard!!!

  27. Lisa Hess at 7:19 am

    I’ve been hoping for the past year that something like this would be organized, but with only a week + before, transportation is an issue. Is there a link somewhere for signup and group travel?

  28. Dave at 6:29 am

    Never doubt what a small group of dedicated individuals can do to change the world. In fact as Margaret Mead wrote its the only thing that ever has.
    The future of pain care rests on those who believe in dreams And we need dreams to overcome the nightmare that Frieden and the Obama administration has created for people in pain. Their plans and values have violated the social contract and the natural right to seek pain relief. They represent tyranny and we are the better Angels that must prevail against their total lack of caritas and empathy for the millions suffering pain every day
    They have destroyed the lives and hopes of too many in pain and are as callous as they are careless and destructive of democratic and humanitarian concerns. They show no reverence for life nor respect for the voices of people in pain.
    Let us put an end to the theater of cruelty they have created and let us restore humanity and dignity to pain care.

  29. Danny Elliott at 6:21 am

    I’ll say it again: God willing, I WILL BE THERE at the Rally Against Pain! After 25 years, I’ve learned not to set myself up for disappointment by looking forward to an event or planning on doing something on a specific date in the future. But I can’t help myself with this Rally. I honestly believe that this could be the beginning of the rising up of chronic pain sufferers all around the US. If this Rally can create some news, or some drama or controversy, THAT might be what helps those Americans who really don’t understand chronic pain give a damn! (Sorry.) We ALL know that, every single day, someone is diagnosed with, or suddenly suffering from, a severe, painful condition. It may be from a disease or an accident or nobody knows right now. But these people are where we all were whenever our problems started, and we owe it to them and to ourselves to do whatever it takes to make sure that those who truly need the treatments and medications that can help them have a more “normal” life (whatever that is) are able to get them without the cynical, “you’re a drug-seeker” mentality that has become the standard, not only with hospitals and doctors and pharmacists, but in our Federal Government and its agencies that are at war against US! The CDC are DEA need to know that we aren’t going to lie down and take it. Maybe the Rally doesn’t accomplish anything. But, then again, maybe it does. What if something occurs on October 22nd that catches the mainstream media’s attention? Then, that “something” leads to a question being asked at our “illustrious” Presidential candidates’ final debate? Is it probable? Maybe not. Is it POSSIBLE? Absolutely! We pain sufferers just need something to happen that makes Americans consider our plight, but we can’t sit back and wait for it to happen on its own. We have to DO SOMETHING. Personally, I don’t think just writing emails to our representatives is enough. Nor is signing petitions or writing letters to our newspapers. But, when we do ALL of those things, and more, we have a better chance of altering the discussion towards our point-of-view, and that’s a “win”. So, God willing, I am going to Washington, DC on October 22nd, rain or shine, and participate in the “Rally Against Pain”. I hope some of you will consider joining me there.

  30. connie at 5:26 am

    I wish you luck! It’s too far and much too expensive for me to make the trek from Alaska but will be with you in spirit!