Represent Chronic Pain and Call Your Representative Today – Tuesday, June 21st @ 3pm EST

Represent Chronic Pain and Call Your Representative Today – Tuesday, June 21st @ 3pm EST

By Staff

National Pain Report understands the negligent under-representation of the chronic pain population. With over 100 million people suffering in the US alone, the potential power of the population to influence policy should be immense. However, as has been noted by so many of our readers, the problem that the chronic pain population is faced with, is lack of organization and mobilization – which in many cases is complicated by the physical obstacle that chronic pain can be.

However, we do not believe that in the absence of large scale organization and mobilization, no-action is the answer.

National Pain Report does support large advocacy groups such as US Pain Foundation, and believes and encourages them to continue to educate and look for opportunities to leverage their members and relationships in trying to find ways to influence and initiate change; however, we also believe that grass-roots movements are ones of the tools that can be much more accessible to individuals without financial means, the physical ability to “march”, or who may just wish to not be affiliated with a specific group.

In any case, National Pain Report has chosen to support Chronic Pain Rights Support Group as they call upon chronic pain sufferers to call and email your Senators.

The following is a call-to-action that was posted in National Pain Report comments, that we have chosen to republish:

This is a CALL to action for all pain sufferers! It’s time to speak out against the oppression and discrimination that we have all endured at one time or another.

Myself and my fellow members of the Chronic Pain Rights Support Group are calling on our fellow pain suffers to call and email your Senators about all our concerns and issues with the way that several of the Senate Bills regarding opioid medications and addiction treatment and the way they will negatively impact the Chronic Pain Community.

Our concerns should be that these Bills specifically allocate funding for the treatment of addiction with complete and total disregard to the pain community. We should demand that our rights to proper pain relief be guaranteed whether it be from opioid medications, or from natural means such as marijuana.

We also need to extremely express our concerns about funding. Research on efficient and safer therapies for treating chronic pain should be the first concern before prohibiting the use of opiates. The fact that our government is spending more on the treatment of those addicted, 28 million people, than they do on finding better treatment, safer and less addictive treatments for chronic pain suffers, over 116 million people is unforgivable.

So on Tuesday, June 21st at 3 pm eastern standard time we are asking all those who suffer from pain 24/7, 365 days a year to call and email your US Senators office and demand to be heard. Our goal of course is to make our calls the only ones heard in Washington DC that whole day.

Please be calm, polite and to the point when you call so we do not fuel the addiction fire any further. If we call and leave angry comments, or just totally be irate and unapproachable, we will appear as we simply want our opiates or Marijuana and are not concerned about anything or anyone else. But if we speak polite and professional, people will listen. Thank you all and we truly hope you can join in.

Not sure how to contact your Senator? Click here to find out.

Remember – in less time than it takes to read this article, you can call your Senator, represent the pain community, and let them know that there are many people out there in chronic pain who are not being represented.

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Authored by: Staff

There are 16 comments for this article
  1. bohica at 5:37 pm

    Apology for hijacking the discussion since my comment was slightly off topic, I just posted it where I was reading. Sorry!
    Also, I should have said “recent” study, instead of “new”, since it appears to have been completed around the end of 2015.

    More on topic, sorry to say, while any level of engaging congressmen, politicians, etc is a step in the right direction and should at least be helpful in raising awareness, but it is going to take a lot more than that. The effort needs to be constant and sustained, involving hundred of thousands of people in order to get any serious attention. Lawyers need to be involved, as that is unfortunately the only type of action that gets results in this country anymore. We should be contacting civil rights lawyers, ACLU, in some cases, injury attorneys for patients getting dumped or harmed by physicians poor decisions based on bad politics, fear paranoia and witch hunt mentality instead of actual science.
    Also, file complaints with Medicare, Medicaid, HHS-OCR, the VA, FDA, insurance companies, state medical boards and the Office of Professional Discipline if you or a loved one are truly being mistreated and harmed. NORML, while focused on MJ is very much on our side as well, and another resource that should be explored. None of the fight is going to be easy, but over time, with sustained focus these problems will no longer be able to be ignored.

    NO, I am not a lawyer, and in fact dislike most of them intensely, as well as “Big Pharma”. They say politics makes strange bedfellows, and once again it proves true, since it seems to be mostly Big Pharma, lawyers and retired physicians who are most on our side. Apparently the actively licensed doctors are too busy counting the profits from their lucrative urine collection contracts to utter a peep on our behalf.

    While reading thru a lot of the comments from the linked study I posted earlier, I found this one to be one of the most interesting, (and more on topic, since it is referring to some type of legislation.. does anyone recognize what regulation the comment is referring to?)

    I am not the author of the below comment. I thought maybe some of these points could be helpful to anyone composing letters on the subject.

    Anyway, here is the comment. I broke up a wall of text, and removed a lot of a0 tags. The original can be found here
    http://marginalrevolution.com/marginalrevolution/2015/11/opioids-for-the-masses.html

    – –

    64 Parmod December 21, 2015 at 1:41 pm

    Speaking as one who has tried to engage those with exmtree views about opioid regulation on many disappointing occasions, I would urge our community of professionals concerned about patient care to avoid pursuing any effort to negotiate on the details of a request to FDA. We should not buy in to the proposition that opioids need relabeling by the FDA. The public health problem of prescription drug abuse should be addressed by clinician education, smart regulation that does not pose high risk of worsening the existing problem of poorly treated and uncontrolled chronic pain (as the REMS are trying to do), better use of current law enforcement approaches to eliminate pill mills, and more research into the safety and effectiveness of opioid drugs.

    The PROP petition is inappropriate because
    1) FDA should follow the science only and there is no science to support the demands,
    2) FDA should not change its standard approach to labeling for one class unless it plans to apply a new stardard to all other drug classes without evidence of long-term safety and efficacy, e.g., antidepressants, neuroleptics, NSAIDs, and many others,
    3) the likelihood that the change will adversely affect patients is very high because non-experts will look to the label as reflecting a standard of care and withhold therapy from patients who could benefit, and some payers will push the costs of treatment onto patients by claiming that off-label use does not deserve coverage.

    In my view, the proper response of FDA to the PROP petition is simply to reject it as unsupported by the science and practice of medicine. Thankfully, this is what the counter-petitions and letters to the docket are saying.

    The PROP petition is a tactic and it is wonderful that our community is responding to FDA with the analysis it needs to push back. Unfortunately, it may have trouble doing so. To prevent the next step, which would be legislation to force FDA to make label changes, or to do worse, I would suggest that our community make clear several points:
    First, the pronouncements and proposals of PROP repeatedly demonstrate very little understanding of pain medicine. Most egregious is the lumping together of a very diverse patient population with chronic pain into a group called chronic non-cancer pain .

    Pain specialists know that subgroups, like low back pain patients with substance use disorder, advanced multiple sclerosis patients, and elderly patients with disabling joint pain, differ greatly, and we know that there are mediators of individual risk (such as history of substance abuse) that vary within each pain population. We know that the term cancer pain is vague when referring to the millions of patients who are long-term survivors. The approach taken by PROP does not worry itself with these nuances.

    Second, the pronouncements and proposals of PROP demonstrate no critical evalution of the risks associated with chronic opioid therapy. There are many egregious examples that could be cited, but perhaps the most is the statement that there is a dose, e.g., 100 morphine equivalent mg, which when traversed, imparts unacceptable risk to the individual.

    This conclusion suggests that we know something about opioid molecules that we do not. It originates from population-based claims data,which in the realm of science should be viewed as hypothesis-generating, not evidence. PROP does not feel the need to note that these findings should never be considered dispositive.

    Third, PROP proposals are unbalanced, in that they never address the potential unintented consequences of increased pain. PROP ignores history that even includes a 2001 position statement endorsed by DEA and 21 professional organizations (www.deadiversion.usdoj.gov/pubs/advisories/newsrel_102301.pdf). PROP has filled a vacuum and I am happy to see pain specialists and palliative medicine stepping up to ensure that science is respected and patients’ voices are heard.

  2. Krissy at 4:38 pm

    I commented on your link — I am extremely tired and pained today, but I made a few points.

  3. bohica at 2:48 pm

    I just learned about a new study being done regarding opiate crackdowns and how it is affecting pain patients:
    http://economics.mit.edu/grad/akilby/research

    Here is part of the abstract. Please read more at the above link… there are also additional links on the page to media coverage of the study, as well as contact info of the author.
    Please share and spread the word.

    – – –
    “Opioids for the masses: Welfare tradeoffs in the regulation of narcotic pain medications (Job Market Paper)

    Abstract: Use of prescription opioid pain relievers to manage pain has increased fourfold since 1999, as medical guidelines have increasingly emphasized that appropriate pain management is required for an acceptable standard of care. However, a concomitant rapid rise in opioid abuse, addiction, overdose, and death has led to recent efforts to crack down on opioid prescribing.

    This paper sheds light on the tradeoffs of public policies that reduce the supply of medical opioids by investigating their health, labor, and welfare ramifications. I exploit state-level variation in the introduction of Prescription Monitoring Program (PMP) laws, and make use of several rich data sources, documenting that PMPs reduce the distribution of opioids, and achieve a key policy goal by reducing opioid overdose deaths by about 12%.

    I also find substantial costs resulting from these policies, including increased pain in the hospital setting, more missed days for injured and disabled individuals, and substitution towards more expensive medical care. A rough back-of-the-envelope welfare calculation suggests the welfare losses and gains from regulation are on the same order of magnitude – approximately $12.1 billion per year in increased costs from inpatient and outpatient medical spending plus lost wages, compared to $7.3 billion per year in benefits from lives saved from opioid and heroin overdose.”

  4. Therese at 2:25 pm

    If I’m not mistaken, AARP is both very large and well-respected. I wonder if Dr. Yeh might be willing to help us somehow …

  5. Daniel Hartsgrove at 7:44 am

    I am the same as Cynthia. Emailed on many issues but absolutely no response to the failed opoid war, not a peep. Very strange

  6. Cathy M at 7:16 am

    I have writtent to all my congressmen and gotten replies from some – at least not virulently anti-meds. But I want to mention another place to weigh in:

    McClatchy (a mainstream press) has ANOTHER misleading article on opioids (6/22) and they’ve changed their #$#%* commenting system so that you HAVE to sign up for Facebook. If there is anyone on here who is already on Facebook – this article really needs some pushback!!

    http://www.mcclatchydc.com/news/nation-world/national/article85025327.html# storylink=mainstage
    Snips:
    Some experts say treating patients’ emotional needs is best way to fight pain (!!!)

    Ranging in age from 51 through 69, boomers are at the stage of life when it’s common to develop long-term pain. That can put them at greater risk for dependence, addiction and possible overdose from prescription opioids, experts say….As they grow older, boomers are likely to develop multiple ailments and to see several doctors who prescribe them different medications simultaneously – often without realizing it. When those drugs interact, they can cause adverse effects such as accidental poisoning, said Siobhan Morse, the director of research and fidelity at Foundations Recovery Network, which operates drug treatment facilities in several states. ((NOTE: This is NOT abuse, by any description!! Accidental poisoning from drug combos is possible with many, many drugs!! They’re conflating!))

    “The available data show they [opiods] don’t do a good job in the long run for the majority of people with chronic pain,” said Dr. Beth Darnall, a pain psychologist and associate professor in the Division of Pain Medicine at Stanford University. ((This doctor knows very well the “available data” is non-existent or just anecdotal and she’s cherry picking! Someone needs to make the point that there are NO long range studies done and they NEED to be!))

    To help curb prescription opioid use, the Obama administration wants doctors to prescribe them only for acute, short-term pain rather than long-term, chronic pain which is less severe.But Dr. Charlotte Yeh, chief medical officer at AARP, isn’t ready for the opioid pendulum to swing back to the days when chronic pain sufferers had to do without access to some of the world’s best painkillers.She said chronic pain was a serious condition that limited a patient’s independence, social interaction and mobility. While the opioid addiction crisis is a major concern, it’s important that “we don’t forget that people were on the medicines because they started with pain,,” Yeh said. “I don’t want to lose sight of that.” ( Yeah! One doctor gets it!)

    While pain is typically treated as a negative sensory experience, it’s partly defined as “an unpleasant sensory and emotional experience” by the International Association for the Study of Pain. Unfortunately, Darnall said, the “emotional” part is seldom addressed.
    Darnall said psychological treatment, not pills, worked best for chronic pain. “It’s physical therapy. It’s getting active. It’s getting good sleep. It’s lifestyle management. It’s doing all the things we need to do so that we have less pain.” ((This doctor needs to experience chronic pain herself – IMO))

    Sorry for the angry tone, but I haven’t finished my coffee yet and it totally enrages me that most of the mainstream papers I read have switched to Facebook only commenting – this is censorship of older readers, IMO!

  7. Cynthia at 11:16 pm

    I hope this happens again….regularly would be good. Cuz I missed it. … However, I’ve been writing letters and emails to all of my politicians, about chronic pain and meds, etc, for years…have never even had an answer. I get answers on other issues, but not on this one. A mystery to me…

  8. Mary Stephenson at 6:11 pm

    I missed the 3:00 cutoff. So I emailed a nice calm letter to Ms. Boxer & Ms. Feinstein for California

  9. Tina at 4:28 pm

    Emails I sent to both CA Senators:

    I urge you to support Chronic Pain Sufferers like me. We request the help and support of our Senators to support Chronic Pain Rights.

    We want you to understand the negligent under-representation of the chronic pain population. With over 100 million people suffering in the US alone. Frankly, living in daily pain is miserable, often tortuous, and depressing,

    Please speak out on our behalf against the oppression and discrimination that we chronic pain sufferers have endured.

    Myself and my fellow members of the Chronic Pain Rights Support Group are calling on our Senators about our concerns and issues with the way that several of the Senate Bills regarding opioid medications and addiction treatment and the way they will negatively impact the Chronic Pain Community.

    Our concerns are that these Bills specifically allocate funding for the treatment of addiction with complete and total disregard to the pain community. Please demand that our rights to proper pain relief be guaranteed whether it be from opioid medications, or from various natural means including marijuana. I personally don’t care for the effects of marijuana, however many chronic pain sufferers find relief with it’s use. Chronic pain sufferers deserve access to pain relief that works each individual whether it’s Opiates or marijuana.

    We also want to extremely express our concerns about funding. Research on efficient and safer therapies for treating chronic pain should be the first concern before prohibiting the use of opiates. The fact that our government is spending more on the treatment of those addicted, 28 million people, than they do on finding better treatment, safer and less addictive treatments for chronic pain suffers, over 116 million people is unforgivable.

    Thank you so much for taking the time to read this and we respectfully request your support.

  10. Krissy at 1:28 pm

    FIRST RESPONSE:

    to address your concerns. Hearing directly from constituents such as yourself is truly an honor, and your input is much appreciated.

    Please look for my response in the near future. In an effort to serve you better, please do not duplicate e-mails into the web-form, as it may serve to delay the response to your concerns. If you need immediate assistance with a federal agency, please call (866) 630-7106, toll-free in Florida.

    Sincerely,

    U.S. Senator Marco Rubio

  11. Marty at 8:49 am

    Please be calm, polite and to the point when you call so we do not fuel the addiction fire any further. If we call and leave angry comments, or just totally be irate and unapproachable, we will appear as we simply want our opiates or Marijuana and are not concerned about anything or anyone else. But if we speak polite and professional, people will listen. Thank you all and we truly hope you can join in.

    You see this is one of the many reasons people who suffer from chronic pain do not speak out. If we are angry it is sign of addiction even though pain causes anger. If we are desperate for relief we are drug seekers and “big brother” as some put it, use this ploy to dismiss our struggles. Propaganda is a very powerful tool.

  12. Kris at 8:32 am

    Will do! Lets all stand together! lets all be heard! And then Pray because that is what I keep doing

  13. Kurt WG Matthies at 8:19 am

    Having authored a Call to Action statement of my own to our readers, I’ve since come to believe that too many of us are exhausted and terrorized by the pain of chronic disease, and the attacks perpetrated by the mass media outlets, AMA, insurance companies, CDC, and other regulatory agencies. Now government legislative bodies want to get in on the action.

    Many of us have able bodied family and friends who understand our plight.

    Ask them to help get the word out.

    And ask your doctor. Tell him or her of your anxiety over losing access to pain care.

    We need to keep up the pressure, but we are already under so much pressure.

    Ask for help.

    @kwgmatthies

  14. HJ at 7:26 am

    I emailed. I’m working today and my energy level is low. Cut and paste works well.

  15. Danny at 5:38 am

    A few weeks ago, I wrote to one of my North Carolina Senators, Sen. Richard Burr (R-NC), concerning the war on opioid medications that’s taking place in our country. Below is the response I received two days ago:

    “Thank you for contacting me regarding chronic pain management. I appreciate you taking the time to write me regarding this important issue.

    Given the very legitimate reasons you raise in your correspondence, you may be interested to know that Senator Orrin Hatch (R-UT) introduced S. 483, the Ensuring Patient Access and Effective Drug Enforcement Act. This legislation seeks to clarify specific policies with respect to controlled substances to ensure that the proper safeguards are in place to combat prescription drug abuse, while maintaining access to medication for patients with a legitimate need. I was happy to support this legislation, which passed the Senate on March 17, 2016, and I hope that the House of Representatives will give this bill timely consideration.

    Many people do not understand the importance of chronic pain management. In fact, some people lead productive lives only because they have access to chronic pain management. Unfortunately, there are individuals who abuse pain medication and go to great lengths to obtain and misuse that medication. I am aware of the multiple concerns held by physicians who treat chronic pain and their patients. In response to these concerns, yes government is attempting to provide tools to ensure pain medications are properly prescribed and accessed.

    Again, thank you for contacting me. Should you have additional questions or comments, please do not hesitate to let me know or visit my website at burr.senate.gov.”

    I must say that I am pleased with the quick reply to my concerns and he says a lot of good things. However, upon reading a summary of the bill (S. 483), there is far more concern about illegal diversion of narcotic pain medications than there is about those who legitimately need the medication.

    As this article says, today is an organized movement to contact Senators and Congressman, and I will be contacting my other Senator as well as my Congressman. I just thought I’d share my experience in contacting my Senator.