Opinion: Sign The National Pain Strategy Petition

Opinion: Sign The National Pain Strategy Petition

By Ed Coghlan

At the National Pain Report, we often leave the opinion making to folks who are advocates for any number of issues. And it’s our position to allow those varying points of view on our site—it’s part of our mission.

We will exercise our privilege to expressing our own opinion by saying, you should sign this petition to fund the National Pain Strategy (NPS). The deadline is Friday August 12.

Sign here.

While the debate about chronic pain treatment has been dominated this year by the CDC and its Opioid Prescribing Guideline, it is in truth a small part of the chronic pain treatment story. The much –or at least more important–issue should be how the government can implement the country’s first strategic plan to achieve a system of safe, effective and high-quality pain care informed by science.

Read the National Pain Strategy

We have been frustrated by the inaction by the National Institutes of Health on the NPS since it was introduced with very little fanfare by the National Institutes of Health. If research, healthcare provider training, insurance coverage issues and public awareness of pain are going to be addressed, the NPS is, quite simply, the best vehicle for a comprehensive approach.

The petition which is supported by most pain advocacy organizations directs the Obama Administration to direct the Health and Human Services agency to swiftly fund and implement the NPS.

Developed by a diverse team of experts from around the nation, the National Pain Strategy is a roadmap toward achieving a system of care in which all people receive appropriate, high quality and evidence-based care for pain.

It was released on Friday March 18th.

It is axiomatic in the communications business that the day to announce bad news or to bury something is a Friday.

Several months ago, I spoke with Dr. Sean Mackey of Stanford University about the NPS. He was an influential voice in crafting the NPS. I told him that the biggest threat to it was not its scope or its emphasis, but its complexity. It had, I told him, “the potential to sit on a shelf and collect dust.”

I may have been wrong. The biggest threat to an implementation seems to be indifference.

If the actions—or should I say inactions—by the government since March 18 are any indication, the NPS has a chance to be just as I predicted. A lot of noise and no action.

We would argue that the government should get use the NPS to stimulate a real debate about chronic pain and find solutions to the education, research and treatment issues that plague millions of Americans.

Sign the petition.

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Authored by: Ed Coghlan

There are 27 comments for this article
  1. Tim Mason at 10:53 pm

    “It is important that alternatives be researched and developed. Companies will have to fund the research, develpoment and marketing of these alternatives. Congress will also have to appropiates the funding for”
    We might not see a complete 180 turn back to previous opioid prescriptions but for those that have been on them before, they will return. What you will not see are the neuvo pain patient without spinal pathology or other confirmed organic disease getting opioid therapy.
    Many of these “alternative” treatments are developed by companies that are mainly out for increased revenue. The patients the use in there studies are carefully picked that have minimum distress and are sure to write great improvements in their conditions. Just think of all the drug recalls and drug banning in the last 5 years due to adverse events. Some of these companies even knew about them but did not report them. Bar and Par pharmaceuticals are just one example of lying when ibuprofen was in the trial stages. As the deadline was closing in on approval one of the companies lied about their stability data. (I was there)
    The adverse events for a spinal stimulator are located on the back of the CD holder the doctor gives you to review. You need an electron microscope to be able to read what it says.
    The best way I can describe it is that “It would be a miracle if you did not get three or 4 of these “adverse events”. Hell, that’s why it is small print and on the back.
    The pain relief world is full of gimmicks and charlatans. Not much different that the Sunday Morning TV evangelists. I am suppressed they have not sent us all to Ernest Angsley. We are obviously possessed by some demon. (pun intended)

  2. BL at 1:47 pm

    Jean Price, I’ve wondered the same thing. It is obvious that opiates are not going to be prescribed for chronic pain management like they have been in the past. It is impoatant that alternatives be researched and developed. Companies will have to fund the research, develpoment and marketing of these alternatives. Congress will also have to appropiates the funding for it. People giving the impression that the government will be funding any part of this is not the same as Congress appropiating funding or a particular part of the government funding it out of their appropiations.

    Asking that private insurance, Medicaid and Medicare cover alternative treatments for chronic pain does not mean they will cover it. There is a lot of money to be made in Alternative Therapies just like there is in treating drug addicts.

    Think about this, how much funding do you think will be spent on chronic pain patiets with the Zika Virus ? They are not going to take money away from researching, developing and marketing against the Zika Virus or a number of other things. The cost of Zike far outweights the cost of chronic pain patients that are not having their pain treated.

    Those that think the NPS is the answer either aren’t comprehending what they are reading and realizing what is not being said OR they realize it and also realize that nothing can be done regarding reversing the tighter restriction on opiates and believe the NPS is better than nothing. It will be interesting on down the road in 5, 10 yrs to see what those that have supported the NPS say about what they have done. I’m willing to bet they will say they weren’t aware of what the NPS was really all about.

  3. Adele Casden at 12:48 am

    I was damaged by a colonoscopy, & have been to tons of doctors. Finally I was given a Fentynal patch which allowed me to live a life with less pain , but not perfect. I’ve followed every direction of my doctor. I’m not a addictive person, but I was in excrutiating pain. Now some people in our group with pudendal nerve problems are committing suicide. Doctors need to be allowed to help people in chronic pain. These are not drug addicts. Drug addicts are people taking opiates to get high. To solve the problem of drug addicts, make opiates legal, & have drug addicts register, & get their drugs from the government, or help them get free rehabilitation. This will end the gang warfare for drug sales territories between gangs who sell drugs.

  4. Jean Price at 5:47 pm

    Does anyone know why our pain groups are pushing this strategy…and the petition? I’d really like to hear their explanation on that!! What I can’t figure out is how anyone could believe this confusing, bureaucratic document stands for those of us in pain…the ones they hear from regularly and anyone else who is in pain!!! PLUS ANYONE….pain or no pain…who would take time to read it would have to see it for what it is….a step in the wrong direction if you’re interested in good, compassionate, and knowledgable pain care!! A step toward disapproval of time tested medication on absolutely NO MEDICAL grounds, and a step toward more needless suffering for those unfortunate to be diagnosed with life limiting pain now AND in the future…and acute pain too!! Why are they so interested in pushing it and NOT INTERESTED IN SAYING START OVER AND COME UP WITH A BETTER WAY FOR THOSE IN PAINTO BE TREATED…WE CAN ALL HELP! That would seem the better path for anyone interested in improvement of our current situation and interested in us having appropriate care!! That would seem like something they SHOULD be pushing!! So why aren’t they?!

  5. Martha Arntson at 4:18 pm

    Dooney:
    In response to your post. EVERYONE IS IN THE SAME BOAT RIGHT NOW! It started about a year ago. NO ONE KNEW (EVEN THE PHYSICIANS) that OBAMA was coming for you! NO ONE! The CDC HID THIS ‘OPIOID EPIDEMIC’ under another name: SAMHSA!

    Some pain patients got let go of their P.M. Doctors, and others, like me, got reduced to “Buprenorphine”. Basically, Suboxone, Subutex, in some form. RE-DESIGNED to SELL to us through our insurance (or none?) under fancy names from Big Pharma like “BELBUCA”.

    At an appointment in Jan or Feb, 2016, I was walking through the P.M. office to my Physician’s Assistants office and noticed there were “notes” tacked to closed doors (assuming there were patients behind the closed doors). I wondered what is that? So while awaiting my P.A. I googled it. Sure enough, it was BUPRENORPHINE, in a sublinqual form. Like Suboxone (without the Naloxone).

    By March I was abruptly taken off the Percocet, with no warning, not a word about withdrawl or discomfort. I had been on it for a few years, at a low dose, but dependent but not addicted. Which they recognize my condition needs a stronger drug than Buprenorphine, but REFUSE to re-prescribe it due to the CDC.

    I am ready to move on now, to more P.T. and my OWN form of pain relief, sleep!

  6. Martha Arntson at 4:00 pm

    TO: Tim Mason
    RE: August 12, 2016 at 2:55 pm
    “Martha. If you are FB reach out to me about the spinal stimulator business model. Those are about 80K dollars. Of course the literature they give you has no bad data but read the very fine print on the back.”
    Timothy Eugene Mason

    Thanks Tim, I will try to find you there and we can discuss this. I am very against the Spinal Cord Stimulator only because it is PERMANENT! (if deciding to have it done after the trial period of course), and it is quite expensive!

  7. Tim Mason at 2:55 pm

    Martha. If you are FB reach out to me about the spinal stimulator business model. Those are about 80K dollars. Of course the literature they give you has no bad data but read the very fine print on the back.
    Timothy Eugene Mason

  8. MARTHA ARNTSON at 6:59 am

    To DEAN: Thanks for your comments! I get alerted when someone comments on this particular thread and was glad to see yours! I too was put into Pain Management several years ago. But, was taken off all opioids (Percocet 10 mg 3 x day) in March due to the strict Guidelines that the CDC proposed.
    The only reason I was given was that the new Guidelines have made it too difficult for even a Pain Management Facility to prescribe these drugs anymore. No matter what your situation nor pain level, with proof via MRI’s, etc., they refuse to re-prescribe what I need.
    I may seek another Facility that encompasses ALL avenues for pain relief, (not just opioids). I have told them I am willing to try everything, except for the Spinal Cord Stimulator. That is an absolute NO. I do not want anything implanted in my spine that can never be removed once the trial period is over and it is implanted for permanent use.
    I have yet for my P.M. people to call me back with a Physical Therapy appointment, which they stated they would call me, that was over a week ago. So I manage with what little they gave me of Butrans Patches and Subutex, for pain. Thanks for your post! Martha

  9. Dean at 8:11 am

    After reading the petition, as well as the comments I can NOT sign the petition.
    As a chronic pain patient I’m tired of those, who have no clue what it’s like to live in a diseased, pain riddled body 24/7.
    Yes I’ve tried to self manage, as well as treatment and many procedures (non narcotic/opioid), for over 20 years.
    I now wonder why I allowed myself to suffer, for so many years before finally giving in to pain management? Pain, literally almost cost me my life!!!
    I’m now with a great Pain mgmt. Dr., who is very strict! I honestly like the fact he is so strict. It rules out the chance of addicts being given their fix. The meds I receive do not get rid of all my pain, nor will they ever do so.
    However, the relief I do receive allows me to stay independent, in taking care of myself.
    I wonder how can people, who are involved with CDC, Government, etc., that want to set these guidelines are qualified to do so?? Where are their Medical degrees, or credentials that qualify them to make such serious decisions, for all of us chronic pain patients?

  10. Tim Mason at 1:48 pm

    Hi Martha, This site lacks the features like that found on a Forum. This is not a Forum but just a “blog”. I feel you trying to reach out to someone, anyone. We all need each other to talk to and otherwise “Hob-Nob” about our situations. It sound like we both have the same spinal pathology. I am going to put my phone # at the end of this and I want you to reach out to me. I am on eastern time. If you could call me tonight or tomorrow night around 8 that would be great. in the meantime do a google search or use any search engine and look up FDA medical device recalls. You will find quite a long list of devices but look for Spinal Stimulators. You will find a link to all the complaints (very specific too I might add) with the number of complaints by type. Dissatisfied is one of the top ones. I am sure these devices work for some people but we are not one of them. You would probably fail the physiological interview because it sounds like you have unmanaged anxiety. The success rate for the stimulators is approx. 60%. Not very good when you figure your doctor is going to charge 80,000 dollars for one. Call me. Lets chat. 706-944-0566

  11. Martha Arntson at 10:01 am

    Tim Mason, I agree with you about the Spinal Cord Stimulators (et al). I was doing injection therapy when the Doctor suggested I get this device implanted. My insurance company denied it (Aetna, saying it was still “too new and not approved by the FDA”). That was in 2012 thereabouts. Since then I have been in Pain Management after the Injection Therapy didn’t work out. FOUR YEARS later, I am in the same Pain Management Facility I was referred to in 2012. In March, 2016 I was abruptly taken off the 10 mg. Percocet (3 x a day). Abruptly, without any questions or comments, I was told “changes are coming”. Well, now they have given me many various “Buprenorphine” medications from patches to pills and now Subutex, for PAIN. How ridiculous is this? Not to mention, every 28 days I go, the same questions are asked of me “Why again don’t you want the Spinal Cord Stimulator” and “Why are you not willing to try it”? FIRST, I have told them every month or so, I DO NOT WANT ANYTHING IMPLANTED that can not be removed!! Over and over I tell them this.
    I am now stuck between a rock and a hard space. I have absolutely NO options at this point for pain medications. It’s all or nothing with the Beluca or the Subutex ALONG WITH the Butrans Patches. That’s it. My N.P. tells me “I am absolutely NOT addict material and that I, as well as many other patients, are being given ONE OR TWO CHOICES, the Buprenorphine (re-packaged at a higher price as Beluca), or SPINAL CORD STIMULATOR.
    The cost of that is OUTRAGEOUS! I would probably be dropped by our Cigna Insurance if I put a claim in for pre-approval for this device which I DO NOT WANT.
    I am managing my pain the best way I can, which is LIMIT what I can do anymore. If the house isn’t vacumned or the Dog’s walked, well, I’m sorry hubby, I just can’t manage it today.
    Anyone that can help direct people in my circumstances (and I’m sure there are a lot out there now), I would certainly appreciate some feedback as to alternatives here? Thanks for all the posts and re-posts and some kind of hope for us, pain patients.

  12. Tim Mason at 5:45 pm

    fda@service.govdelivery.com
    Any one can receive updates from the FDA. In fact they are now asking for feedback from the consumer about medical devices. I am certain a path forward for individual is forth coming or may already exit.
    I urge everyone to log on to the FDA website and select the news you would like to hear about from them.
    I looked at Spinal Stimulator recalls and the information there was excellent. The number and types of complaints including infection rates are amazing. If any of these suppliers were making cars..no one would even buy one.
    As I have stated before. the spinal stimulator is a business model said to be worth 2.6 billion by 2020 curing everything from Acne to Erectile dysfunction. Nothing but a scam.

  13. Holly at 10:24 am

    The National Pain Strategy. Read between the lines:
    https://iprcc.nih.gov/docs/HHSNational_Pain_Strategy.pdf

    “efforts to reduce the burden of pain in the United States cannot be achieved without an expanded and sustained investment in basic and clinical research on the biopsychosocial mechanisms that produce and maintain chronic pain and development of safe and effective pain treatments.”

    That means blame the patient for the “psychosocial” aspects of their pain, and disregard the actual cause. It’s the REASON that people with incurable diseases are now being denied the Human Right to pain relief; many whom were previously effectively treated with opioids. Pain is a symptom, not a character flaw!

    I speak from experience, having a Tarlov cyst, a life-altering and painful disease that mainly affects women. It’s systematically dismissed by doctors who rely on an outdated paper from 1938! There’s immense bias and discrimination because, as a woman, the pain and disability must be “psychosocial” so tests and treatment are denied.

    Fund research for diseases instead of ignoring them and suggesting that the resulting pain is merely “psychosocial”.

    The NPS perpetuates and condones the bias, prejudice, and discrimination that people in pain experience. If you have any doubts, read these statements from the National Pain Strategy:

    “Treatments that are ineffective, whose risks exceed their benefits, or that may cause harm for certain subgroups need to be identified and their use curtailed or discontinued.”

    “People with pain would have access to educational materials and learn effective approaches for pain self-management programs to prevent, cope with, and reduce pain and its disability.”

    “Patients, including those with low literacy or communication disabilities, would have access
    to information they can understand about the benefits and risks of treatment options, such as those associated with prescription opioid analgesics.”

    “Electronic data on pain assessment and treatment would be standardized, and health systems would maintain pain data registries that include information on the psychosocial/functional impact of chronic pain and the costs and effectiveness of pain management interventions.”

    “A more robust and well trained behavioral health work force would be available to support
    the needs of patients who suffer from chronic pain, including those at risk who need mental
    health care and substance abuse prevention and recovery treatment.”

    “The actions in this strategy would be undertaken in the context of the dual crises of pain and opioid dependence, overdose, and death in the United States.”

    “The actions in this strategy would be undertaken in the context of
    the dual crises of pain and opioid dependence, overdose, and death in the United States.”

    “To achieve this balance a broad range of stakeholders including those engaged in pain care and pain care policies, as well as those working in substance use prevention, treatment, and recovery, would be engaged as the actions of the NPS are undertaken.”

    That last statement is proof that people in pain are irrelevant and unimportant “stakeholders” and will NOT be engaged or considered. We are merely a pain illiterate subgroup who needs educated on proper self-management.

  14. david at 5:36 am

    I can understand those that supported the NPS for they believe that experts and government can and will solve the problems in pain care- or that there is no real alternatives. Some individuals and groups wished they might benefit directly from the NPS.
    But the NPS would further disenfranchise people in pain as it concentrates key decisions into the hands of a few experts and officials without any real checks and balances and without real feedback from people in pain. It would diminish the voice in people in pain as it seeks to enlarge the voice and powers of the old boy network. It would become a closed system that serves the profits and power of some universities and organizations and pain care would not evolve.(kind of like what has been happening now).
    The many criticisms of the NPS reflect it was a closed system and reveals that the plan itself was tragically flawed for excluding the voice of those individuals and organizations that the 80 certaintists who created it did not perceive as relevant. We are all relevant and all voices should count.
    I do not know what will happen to the NPS- my guess is that in some form to some degree, eventually it will be adopted. But it will certainly exacerbate the great gap between providers., government and people in pain.

  15. Dooney at 10:00 pm

    I’m glad to see other commenters saying they wont sign either because I thought maybe I was wrong in my feelings about it. Everything sounded great until I got to the part where it talks about safer prescribing practices like the CDC guidelines. Safer guidelines to me doesn’t mean cutting people off meds to patients who used opioids responsibly. Who tried all other alternatives and therapies that failed and used opioids to help them lead a halfway decent life. Just can’t sign.

  16. BL at 7:05 pm

    I won’t sign the petition either. If the National Pain Strategy goes into effect, there will be more chronic pain patients that can’t get pain meds. People are not reading between the lines. Look at what the National Pain Strategy does not say. Chronic pain patients are reading the National Pain Strategy from their view point and that is Not the view point is was written from.

  17. Tim Mason at 3:07 pm

    “Improving provider education on pain management practices and team-based care in which multiple treatment options are offered – “””moving away from an opioid-centric treatment paradigm”””.
    •Improving patient self-management strategies, as well as patient access to quality, multidisciplinary care that does not depend solely on prescription medications, especially for vulnerable populations”

    Cannot sign this because of this statement.

  18. Jean Price at 3:00 pm

    Martha…I also feel signing my support of this is contrary to both my ethics and to meeting the needs of those in pain, and instead furthers the confusion and endless rhetoric that seems always to delay action!!

    And Dave…as always, you have singled out a perspective that is often overlooked. Pain was derived from a root word meaning punishment, and clearly the public image of pain still reflects this. The unspoken sentence is that we did something stupid to deserve this “punishment”, this pain that we live with. And when we put chronic in front of it with all the negative connotations that adds…how are we ever to elicit the respect and medical care we need and deserve? Especially when so much these days defies logic in our medical, insurance, and government systems…following the dollar instead, and the greed and power issues of a few who think somehow their a simple answer will give THEM what they want, and leave us in pain floundering without mercy in the dust of their deceit and their media hyped campaign “for the good of those addicted!” How can anyone with half a brain not see all of this is pure hogwash?! I don’t understand…we are losing so much ground treating all types of pain with compassion and our best medications and techniques. And why? Because fear of crime/drugs/addicts/ addiction/overdoses/ and the unknown have been used by some unscrupulous people and the baby is dumped out with the bath water!! Until our doctors and nurses and legislators and pharmacists step up with us and reject all the hype….we fight a battle against ill informed public opinion and dark forces. And our side, although maybe not outnumbered….is short of artillery and sucked dry of energy just trying to survive! I’m not sure we even HAVE a white flag to wave if we wanted one, do we?!

  19. Tim at 1:41 pm

    “What you don’t know can hurt You”

  20. Tim Mason at 1:38 pm

    “Developed by a diverse team of experts from around the nation, the National Pain Strategy is a roadmap toward achieving a system of care in which all people receive appropriate, high quality and evidence-based care for pain.”

    Who is on the diverse team of experts? What does the roadmap look like?
    In other words, what is your protocol? What metrics have you submitted to the Government to get them to write a check?

  21. ChrisMD at 10:51 am

    Melanie — just click on the SIGN HERE LINK above and you will be taken directly to the petition to add you name.

  22. ChrisMD at 10:48 am

    I understand what everyone is saying, but we have to start somewhere. Otherwise, the current climate will continue. The NPS can be a springboard to start shining a light on the problem of under-treated pain and the need for new research. If the chronic pain community continues to do nothing, nothing will change. We have to come together.

  23. Martha Arntson at 6:47 am

    I appreciate your post regarding the NPS and it’s complexity and apparent flaws within the strategy.

    However, I cannot in all good conscience sign the Petition at this time. I agree, for the most part, that the Strategy (in theory) is a good start, but it is flawed to the point of needing to be re-written in a more fluid and flexible way, (i.e., the way it is presented is confusing for patients as well as Physicians).

    I also take great umbrance to the “Professionals” who were consulted during the writing of the Strategy. I have read many many articles and the CDC Guidelines, all of which were agreed upon by those who were “allowed” to participate in setting the new Guidelines. They were written, reported to the President of the United States for review and signature, and implemented without any input from the average person who is in a Pain Management Therapy as of October, 2015.

    As much as I would love to see a revision of the CDC “Guidelines”, it has already been implemented and has affected me personally this year (starting in January, 2016). I have been taken off any opioid (small dose), and advised that they (PM) will be scaling ALL patients in their practice to minimal (if any) doses of any Opiate drugs as of August, 2016. 80% of their Patients will be taken off any and all doses of Opiates, I was one of the first. Even though my doctor stated “I am at no risk for addiction, etc., it is part of the “Guidelines” that they are following due to the Pain Strategy and the CDC Guidelines from the Government.

    I would like to see the NPS re-written with less complexity and more compassion for those needing good quality Pain Management.

  24. Linda Cheek at 6:12 am

    Negatory about signing this obvious plan for attacking more doctors who treat pain. What we need are laws exempting doctors from attack, not giving the Justice Department more opportunities to charge doctors with infractions of laws that are so vague that an 18-wheeler could drive through.

  25. Dave at 3:33 am

    The indifference you speak of is complicated by many factors and it affects both the lack of institutional leadership and the subsequent lack of followership on the issue of pain.
    Whil it may be true that good leaders make for poor followers, bad leaders also make for poor followers, as well. For there are many in society that wait for media, o religiion, or the AMA, or a Senator to say that pain is important( and we know that is not happening) before they are willing to follow the lead. And because for centuries people in pain have been stigmatized as malingering, defective, weak willed, etc- the stigmatization- by medicine has lead to disproportionate neglect for sometime.
    Since society has regarded pain as not objective- but subjective- and somehow the result of the persons idiosyncratic feelings-then why should society concern itself with such feelings? Should society care if people chose to feel badly? And isnt pain a choice since there is no objecttive way to measure pain?
    The orientation society has towards pain largely reflects the medicalization of pain. Pain was taken over by medicine centuries ago- and since they couldnt explain pain well it became a beta noire- and by association people in pain became bete noires. The rest of society followed medicine lead- and so there is a long history t stigma of people in pain and pain. There is almost a deviance to pain in America- a criminality- a defect in the person and a shunning of pain. There are books on pain saying it is incommunicable- i say it is communicable but the dark deviancy of society toward pain hampers communication.
    PAin advocacy organizations have said the NPS will help society t accept pain as real. This may not happen unlesws medicine accepts that something doesnt require objective measurement to be real. THis is contrary to cherished assumptions in medicine-and so even now medicine remains suspicious about the reality of pain and susupicious about those who claim to be in pain. If we are suspicious about something and unwilling to move toward acceptance- then why should we embrace that suspicious something. People in pain are distrusted and not accepted as they are- they are believedt be in pain because they are emotional, drug seekers, and wish to avoid work. After all, if anything is wrong with them- its probably some sort of mental defect/disorder- maybe its depression or some strange anxiety.
    The irony to the NPS is that it sought to change attitudes to those who were not interested in changing their attitudes-and without support from leaders in society the NPS became ironic. It should have not focused on pain care as an educational issue- but as an issue of right-and then it would have bypassed issues with changing attitudes that reflect longstanding prejudice and neglect. As long as pain remains the ugly duckling in meedicine- as long as the larger society accepts the ugly duckling designation of medicine- people in pain will remain disenfranchised, stigmatized, ngellected,mistreated. They can ban together and throw off medicines great injustices toward them and call out society or provide mutual aid- become in a sense a society within a society. My guess is theres more turbulence up ahead and people in pain had best ban together then hpe the larger society will get religion about pain anytime soon.