Chronic Pain Patients Rally At The White House

Chronic Pain Patients Rally At The White House For Opioid Access | The Fix |  By John Lavitt 10/25/16

Though this happened over a week ago, it’s important to notice what a small group of dedicated people can accomplish. Just a handful of advocates worked to create and publicize this successful rally,

No central authority, no affiliations, no money, no strings, just pain patients gathered to demand their rights.

This event was NOT sponsored by any big advocacy group, so it had no ties to any funding by “outside interests”, like pharma, and thus escapes all the “you’re just speaking for drug companies” accusations so often thrown at pain patients who are members of large pain groups.

These large pain advocacy groups, like US Pain and AAPM take significant funding from pharma, leaving them open to accusations of collusion with drug companies. 

On Saturday, Oct. 22, chronic pain sufferers and activists held a Rally Against Pain at the White House to draw attention to the millions of chronic pain sufferers, and raise a red flag and say “Enough is enough.” People in actual need of opioid pain medications are losing access to those medications.

According to the Pain News Network, the rally was organized by volunteers through Facebook and other social media, but not supported by either the U.S. Pain Foundation or the American Chronic Pain Association, the largest chronic pain advocacy groups.  

The Fix spoke to Lana Kirby, the Florida paralegal, chronic pain sufferer and patient advocate, who organized the event.

About the rally, Kirby explains, “It was a wonderful experience. The people that were there came all the way from Florida, California, Ohio, and even Texas, from all over America. I spoke to all of them and I’ve never met a more deserving group of people. The story was the same with all of them. They were here because they felt like a change had to be made and they were thrilled at the prospect of the rally

Kirby and her community raise a serious question that needs to be addressed. Although opioid medications are not considered to be effective answers for long-term chronic pain management, they definitely relieve the symptoms of people suffering from chronic pain.

Without any clear alternative, it seems cruel not to allow these people to have the medications they need to stay out of pain.

Unfortunately, when the Centers for Disease Control and Prevention released the new opioid prescribing guidelines in March, chronic pain patients and their needs were not addressed.

According to the chronic pain advocates, many patients have had their doses drastically reduced or cut off entirely.

An additional issue that these patients face is a sudden reluctance among many doctors to prescribe opioid medications and prescription painkillers. Many chronic pain sufferers have had the uncomfortable experience of having their old doctors suddenly refuse to continue to prescribe painkillers on a regular basis.

Richard Lawhern Ph.D spoke about the CDC at the White House rally, saying, “The CDC claims that there is no evidence that people who have pain get benefits from opioids that are used for many months or years. The problem with this assertion is that long-term studies simply haven’t been done. So the CDC doesn’t actually know that opioids don’t provide benefit. They simply assume that it doesn’t.

The CDC, in telling patients that ‘the benefits are transient and generally unproven,’ is essentially telling patients they are wrong about their pain and function.”  

The public claims of the DEA are very different from the private reality faced by chronic pain patients. The DEA has publicly stated that the cuts are the direct result of a declining demand for opioid painkillers. Though the truth hangs somewhere in the balance.

Kirby tells The Fix, “The government has to stop telling doctors to stop prescribing medicines with opioids. There are patients that need it and to take away their only means is abuse.

This is forcing people to spend more time in the house, in bed. What happens is as people lose that functioning they once had, they become depressed and anxiety sets in. There’s a mental component as well as physical.”  

This rally was extremely effective, as the media had never heard many of the points made (the same ones I’ve been posting here). This story in TheFix is the first of what I hope will be more frequent articles pointing out all the flaws in the treatment of pain in this country.

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5 thoughts on “Chronic Pain Patients Rally At The White House

  1. david becker

    I guess I should chime in here. The folks behind the Rally had some of the makings of a social movement organization-and we have seen meaction, the kratom advocates and some other pain related protests all within 6 months. So from my perspective, it is clear big brothers institutions have indirectly caused a very substantial sense of disenfranchisement and disenfranchisement unfortunately can lead to social suffering, isolation, anomie, etc- as well as social movements. And so i beleive, since big brother doesnt recognize the need to incorporate democratic concerns into their plans- we can expect more of the same with the next administration.
    Just today I read the Federal Pain Research Strategy and its essentially a wealth transfer plan from taxpayers to the old by network oof researchers in pain care.. And the old by network certainly isnt making a real effort to make pain care much different or better then it is. They are a closed system of researchers in government, universities and in sme special interest groups- they lack independent or diverse thought- there is no real counterpoint to their ideas. Its an iron cage that cannot meet the needs of people in pain.- im sorry to say.
    As i have said so many times in the past- its up to people who care about pain to change pain care- the old boy network lacks the motivational intensity and the heart to do so. Let us hope socisl movements will grow and serve as a counterpoint to the selfishness of government and industry in pain care.

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    1. Zyp Czyk Post author

      I know you were one of the folks involved in the Rally, so I thank you for your efforts.

      Yes, this huge amount of suffering from so many people having their opioids stopped may be enough to start the social movement that you advocate.

      Pain has always been the strongest motivator – that’s why torture is used. But torturing your own… That’s just sadistic!

      I myself am exhausted and discouraged by the endless stream of falsehoods propagated by the media, turning our country against us. My doc has been able to keep prescribing – so far – but I can feel the noose closing around my neck.

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  2. david becker

    People in pain are being wagged by insurers, government, professionals. I have been telling people for some time- they arent your friends. They are cold and bold. I guess people dont want to accept the cold realities of pain care. And now they experience a very rude and cruel awakening- and they have the numbers to reverse the cruelty in pain care. They dont have to be sleeping giant- they can awake and take back pain care.
    For yourself i trust you have discussed with your provider a B and C plan if the day should come where you arent able to get the opioids for treatment.

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  3. david becker

    Zyp- here it is- my cmment to the NAS- I hope they let me live till Christmas-
    David Becker
    660 Nereid Avenue, 4a
    Bronx, NY 10470

    Thelma Cox/ Dr Richard Bonnie
    National Academy of Sciences
    500 Fifth Street, NW
    Washington, DC 20001

    November 1, 2016

    Dear Ms. Cox and Dr Bonnie:

    Thank you for inviting Richard Lawhern and the members of RallyAgainstPain to participate in the November 4th meeting of NAS on pain management. I am one of the organizers of the Rally.

    I know that Richard Lawhern and others will speak to issues of evidentialism, verificationism, prescriptivism and so forth. In this regard, I will make brief mention, of Dr Collins statements a few years ago- that “efforts at ensuring the reproducibility of research have been hobbled” This statement not only reflects a serious trust deficit that Goldacre and Ioannidis frequently articulate, but, specifically suppressed evidence that casts more than a shadow of doubt on current treatments being used for painful conditions.

    With the 2009 MayDay fund report- A Call to Revolution Pain Care in America I become aware of an epistemic community from the AAPM and APS “ design” to dominate pain care in America. And as you may know currently one of the May Day fund members is on the NIH IPRCC. The initial IOM report on pain care America overrepresented members from this epistemic community and mainstream doctors, chiropractors, physical therapists, psychologists, laypersons were not represented. Shortly after the release of the report the AAPM and APS were investigated and the public learned of the contributions they received from pharmaceutical companies. Thereafter Senator Grassley’s committee investigated such as well. And though the members of this report were not supposed to have financial interest in such, shortly after the report both Sean Mackey and Dennis Turk received large grants. A few years ago the NPS was being developed by essentially the same epistemic community and yours truly was told to mind his business by leadership in the CPATF. Yours truly, of course didn’t mind his own business and commented after the draft of the NPS was released. I started my comment off with a quote by Helen Keller- It is a terrible thing to see and have no vision. I was one of two people who called for a vision of lowering the prevalence of chronic pain during the comment period- and the final version included my vision.

    The IOM report reflected the shortcomings in pain care. As you know the report clearly stated that they do not believe in cures, but that, instead they can manage pain. This is an effort at creating “the lifetime pain patient”. There are too many accounts of people with migraine, Lupus, ms, rheumatoid arthritis, rsd, etc becoming pain free- treatment free remission. It is only too clear that the scientific community has failed to study these individuals-just as it is clear that our scientists have failed to do epidemiological studies in countries with very low rates of chronic pain or to use IBM Watson or Hadoop on pain “patient authored texts” to see if there are patterns that may be tested by clinical research. In addition, no mention was made of stem cell research or curative, regenerative or rejuvenative care for people in pain. The epistemic community involved in both the IOM report and the NPS have a low theory of the good for people in pain for their vision is to continue to use suboptimal antipathic/allopathic medicine.

    I am well aware of the excessive attachment that the pain epistemic community has to the biopsychosocial multidisciplinary model of care. Its remarkable to me how they claim their plan is evidence based as there are over 300 pain conditions and less than a dozen pain conditions have controlled trials for their biopsychosocial interdisciplinary model.There is scant evidence that there model is consistent with the preferences of people in pain and scant evidence it is very effective or efficacious for any pain condition. But the extreme attachment to their model is clearly a bias and they have violated fundamental assumptions in science concerning fallibilism. They clearly wish to rigidify pain care in predetermined ways that will forbid evolution of care. Since they are making the effort to make pain care much better or different than it currently is we will not be jumping over the shadows in pain care to create the symbols of a new day for people in pain anytime soon. The lack of vision of the anointed in pain care is such stuff as tragedies are made of. People are perishing without a real vision in pain care and worse yet the opioid guidelines have turned pain care into a Kafkaesque nightmare like the Trial or the Metamrphosis.

    Are we currently managing pain? I think the headlines on the opioids and heroin in the last few years are telling. I think comments from readers on blogs like Pain NEws Network are telling as well, for they clearly show too many people in pain have that suicidality that Dr Volkow has written about. In addition, the treatment burden for people in pain has become tremendous given the CDC guidelines on opioids having the same effect on pain practices that prohibition has had on alcohol. The designs of a few pain specialists- some of whom were proponents of the Decade of Pain Research and Control, have been an abject failure.Government for sometime, with their belief in market fundamentalism, allowed this epistemic community to function as the equivalent of a star chamber on pain care in America. Even this week the IPRCC has set up a steering committee that will decide the effectiveness of the National Pain Strategy and Federal Pain Research Strategy without regard to democratic input, or policy representation. The greatest stakeholders- people in pain- are viewed by government and we are “othered” by not just discursive imperialism and a failure to create political and discursive opportunity structures on pain but eliminative materialism and numerous anti-patterns and logical fallacies committed by the scientific community and policymakers.The rights of people in pain have been transferred to this epistemic community and people in pain have been relegated into civil and moral vagabondage. It is tragic and dystopian for government to view pain treatment as anything but a natural right.

    Even before the Harrison Act, government was aware of problems with opioids. Several regulatory acts have been passed in the last century. Nonetheless, there has been a continuous escalation of failure in our markets and government when it comes to the use of opioids. How many thousands of hours have been spent by legislators across the country on the “opioid epidemic” as if opioids haven’t been used for thousands of years. A century after the Harrison Act, and after 16,800 controlled trials on opioids our scientific community and government has failed to resolve the issue of the effectiveness of opioid for chronic noncancer pain. This reflects gross negligence, moral disengagement, and lack of motivational intensity when it comes to Americans suffering pain. The cherished assumptions underlying the research on opioids and the models and algorithms used for pain treatment. What good is science if it cannot effectively and efficiently answer questions on the proper use of treatments for pain?

    Science in pain care has remained a calculus of probabilities and chances and reflects Jacob Bernouilli’s statement that hidden causes forever mock your diligence. Recently, my own Senator wrote to Secretary Burwell calling for research on objective measures of pain. Despite a great many studies on wet biomarkers and research on the connectome no biomarker has been found that is diagnostic or prognostic of chronic pain. Models of research and underlying cherished assumptions on pain are suboptimal and need revision. In my comments to the NPS, I recommended more research on the role of mitochondria and the energy crises model f pain as well as use of adaptive research-and, of course, my comments were ignored. Dont know if it was due to not invented here syndrome, hubris sydrome, etc. But as Dr Biro has written- as long as the conversation lasts people in pain are not alone. Scientists should recgnize the value of dialogue with the public and consociationalism. Failing that science appears as have having a strong social dominance orientation which contributes to the disengagement and social disorganization and disintegration- as well as the rise of social movements like meaction, the kratom association and marijuana smo’s. Whatever happened to deliberative democracy and agonistic democracy?

    With regard to opioids despite some research on opioid levels- hypoopioidemia cannot yet be established. Hypoendocannibiniodemia has been established. But to me it’s quite remarkable that for 200 years opioids have been the most prevalent pain treatment despite no routine measurement of endogenous opioid levels or no routine practice of asking about opioid precursors in the diet.

    Science in pain management has been used by both practitioners and government to try to depoliticize issues in pain care. In this regard science is a coercive and demoralizing force and a threat to freedoms, individuality, moral particularism, individual initiative, personalism and civil society. I don’t think American society should be waged by the scientific community- on the contrary American society should wag the scientific community.

    Regulators and scientists have not been clear on what model of health justice undergirds their research. Is it the prioritarianism model?- A GAO report a few years ago showed little correlation between NIH spending and disease burden. And more than a few have cmplained that the chronic pain research budget is eagre- and no mention was made of the costs of the NPS which involves research. As most research on pain outside of PCORI is expert centered it is clear that the capabilities model is not part of the research agenda for pain. It appears that scientific research on pain has a militaristic commmand and control logic- top down managerialism,if your prefer, to it which has lead to problems with health literacy, patient autonomy, a trust deficit, and problems with “patient engagement” and I might add, invertebration of the commons. This is the tragedy of the commons as we have become subjects of the scientific community- since we are not at the table to discuss our beliefs, values, experiences with certaintistic scientists etc- we are considered by the scientific community as part of the menu. Though we may not stand in the light of nature there is still a lot of tunnel at the end of scientists light when it comes to pain care. Though the scientific community may try to justify the coercive influence of their community over individuals, as Thomas Jefferson wrote if you don’t believe in someone’s use of discretion it is better to educate them than to take their discretion away. The public’s dorsolateral prefrontal cortex and basomedial amygdala may not be as methylated as scientists, but that is not enough justification to restrict their choices by use of coercive dominium. We will enter a Brave New World where Big Brother science doesn’t allow us to even think what we want but obey science in everything we do unless we are less extreme in the role we have give science over the daily lives of Americans. And let’s keep in mind what Einstein said about research(and the scientific enterprise)- it’s because we don’t know what we are doing.

    I know some of people in pain have enjoyed my rally cry- Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.Margaret Mead. There have been 5 protests on pain care in the past 6 months- hopefully scientists will see a need to work cooperatively with laypersons in America to build a more perfect union in pain care.

    Let us work together to get out of Plato’s cave and sapere aude.It is my hope scientists involved in pain care will see the need to improve their moral imagination and strive to be much more careful about the moral, social, political, and individual implications of both the process and products of science. For as Einstein said we cannot solve problems with the same consciousness that created it.

    Let us create a new world, as Truman Wrote a far better world one in which the eternal dignity of man is respected. Let us build this world of dignity for people in pain, together.
    Truly,
    David Becker

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