Opinion: It’s Time for the Pain Community to Organize!

Opinion: It’s Time for the Pain Community to Organize!

By Paul Gileno, Founder and President – US Pain Foundation

Paul Gileno

Paul Gileno

Recent reaction to articles pertaining to the new CDC Guidelines, the implementation of the National Pain Strategy (NPS) and the current coverage in the presidential campaign have me somewhat disheartened. While pleased to hear the voices of countless pain warriors sharing personal experiences, I am discouraged by the echoing sentiment: those living with pain are wildly misunderstood with inadequate care.

This is unacceptable. To manifest the change we need, it is going to take us all coming together. I am here to simply state that, who you are – your journey, your story and your life – matter.

I am proud to be the founder and president of U.S. Pain Foundation (the largest patient-advocacy organization in America). I am first and foremost a person with pain. I take pride in the fact that I am a pain warrior. The journey to acceptance was not easy for me, just like many of you who are struggling today.

I saw the need for an organization that focused on the patient perspective. What started as a way for me to connect with other pain warriors ended up being the missing link the pain community had been searching to find for so long.
Through the INvisible Project, Take Control of your Pain workshops, advocacy summits, ambassador and volunteer programs and an online support community called Heroes of Healing (to name a few!), we strive to connect the pain community so each person with pain feels supported, validated and recognized.

I understand the feeling like no one cares or is listening. I am dismayed that so many roadblocks exist for people with pain. First and foremost is the lack of validation for those suffering. Society minimizes the hardships while marginalizing the pain of that which they do not understand or cannot see.

To make the situation even more horrifying, is the majority of patients do not have access to the appropriate treatments. It is a disgrace to know medical professionals are forced to decide to follow the oath they took to do what is best for their patients, or follow guidelines provided to them by the government due to fear of losing their medical license. Furthermore, these same clinicians’ hands are tied because other treatments that hold much potential to bringing relief – such as integrative and complementary therapies – are not covered or paid for by health insurance companies. It’s a sad day for the American people when our own medical system will not do what is right for patients.

However, lashing out against rhetoric is not going to solve this tsunami of a problem. The community needs a solid, strong, unified voice. A message that is honest and real. A call to action that is needed and obtainable. Those with pain, those caring for people with pain, those invested in pain care, must ALL rally together in unison to create the change we need. It is our time to channel a collective energy toward a productive outcome.

For starters, we need to see our worth. As a community of people living with pain, we must recognize that our lives matter. Becoming empowered is key. It is only then that we can properly advocate for our fellow pain warriors and ourselves. In turn, we invoke a positive, productive conversation about chronic pain filled with compassion, knowledge and courage that commands national attention.

What can we do?

Perhaps a White House petition asking that part of the $1-billion granted toward the opioid epidemic is utilized to help the chronic pain pandemic in America. Or how about educating the public about the difference between a person who seeks relief from pain and the person who is abusing medication or is dealing with the disease of addiction.

Write to your lawmakers and tell them how your life is impacted due to pain. Each of us deserves to be treated for his or her pain individually, following the best course of treatment deemed by a medical provider. People with pain must have access to all therapies and treatments, and our government should not only support that but also mandate that such action occurs.

It is time to turn this frustration we feel into action. Will you join U.S. Pain Foundation in advocating for further pain research, access to all forms of care (including integrative and complementary therapies), and legislation that fulfills the needs of people with pain and help the general public and healthcare professionals better understand chronic pain?

US Pain Logo LargeThis is our moment to stand as one, to be unified and to make the change we need, the change we desire and the change that is right.

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Authored by: Paul Gileno

There are 54 comments for this article
  1. BL at 9:10 pm

    Where will the money come from to do these things ? What is needed is not cheap by an defination. Opiate restrictions are not going to become less severe. There is no need is wasting money trying to do anything about that. What needs to be done is for lobbiest to hound politicians to require all health insurance companies to pay for non medication forms of pain management. If you aren’t going to put the time, effort and money into lobbying the politicians, nothing will be accomplished. Just talking to a few politicians ever so often, taking them to dinner, etc isn’t enough. It must be constant and you must be visible and this take money, money, money.

  2. Dave at 5:38 pm

    Its amazing that Ambassadors of U.S. Pain Foundation failed to call for a referendum on the NPS or considered alternatives, or tried to ensure that all interested persons could be heard. Now certain Ambassadors of U.S Pain Care accuses me of being nonproductive-isnt that rich. Heads up- who do you think first notified Mr Gileno of an opportunity to be on the IPRCC? And yeah- I have the email to prove it. Who worked with Paul on ending step therapy in Connecticut and in other states? Who worked with other members of the CPATF in being heard by government? In fact one asked me to endorse them to being on the IPRCC.
    Who created the rights based “American Pain Rights Act” in 2010? Who got three pieces of legislation in NYS requiring education in pain care? And yes Paul-and other organizations-and some individuals involved in CPATF and the NPS actively supported such- including the ACPA.
    But its important to be very careful in deciding which efforts and plans are worth supporting. I will continue to support efforts to get rid of step therapy- including the CDC opioid guidelines. I support abolishing udt’s. I support rights based pain care. I support the right for people in pain to chose their care without interference from insurance or providers. But like many other people I dont believe in the NPS_im not going to recount all the reasons why. Suffice to say I do support efforts that improve the right of people in pain to chose their care.
    The Ambassadors of U.S. Pain Foundation can continue to put their foot in their mouths regarding criticizing my efforts to improve pain care and oppose the NPS.

  3. Richard A. Lawhern, Ph.D. at 6:52 pm

    As I think some of us have realized, there seems to be a great deal of contention and no small amount of personal acrimony in this thread. But it seems to me that if anything is to change, then we’re going to have to find ways to arrive at an action plan, Such a plan likely isn’t an either/or proposition. It might have multiple elements or “thrusts” supported by different advocates. Whatever the plan looks like, it is clear to me that endlessly wringing our hands or picking on each other or proclaiming broad evil conspiracies doesn’t change a darned thing.

    So let’s try (please?) for more specifics:

    1. What SPECIFIC outcomes do you as a commentator want to happen for chronic pain patients?
    2. What actions do you believe are needed in order for those outcomes to occur?
    3. Who (by name or organization) has the power to make these actions happen?
    4. What can this forum at the National Pain Report do in order to facilitate, encourage, or require these changes?

    I realize that it’s tough to let go of grievances and be specific. But anything else leaves us stuck and fighting with each other rather than moving toward better days.

    Go in Peace and Power

  4. Kim Miller at 9:00 pm

    Dave,

    Since you know so much about me, how I feel, and my total disregard for what others think and feel, then you surely know that I am also a tireless pain advocate that has worked relentlessly to try to make a difference in the plight of chronic pain patients. Your constant barrage of negativity and unfounded criticism of how I “feel”, is not only unnecessary, but counterintuitive to our efforts as a community to accomplish something positive.

    Per your comment on my comment, “But its clear since youre happy with the NPS- it doesn’t matter if a lot of other people are not happy about it- at least from your point of view- its just their tough luck”, it would appear I’m one heartless individual who thinks only of myself.

    I submit that the mere fact you have systematically commented on 6 other comments, often using quotes from previous articles and comments you’ve written, that you have a sense that there is one point of view in this world and it’s yours.

    Instead of finding a way to insult and degrade others who are advocating for the rights of chronic pain patients to receive adequate pain treatment, I suggest we try to find a way to work together and do something positive to change our outlook for the future. One way is directing people to join in a unique petition opportunity at:

    https://m.facebook.com/groups/painisreal/

    Though, of course, I’m always open to anyone’s ideas. There just appears to be a shortage of ideas, but no shortage of criticism for the ideas that do get presented.

    Kim Miller

  5. Krissy at 3:36 pm

    Mr. Myers,

    Thank you for posting all of this good info. I am a patient, advocate and researcher/writer. I know I belong/subscribe to some of this, but will check all of your links out.

    Krissy

  6. Stephen S Rodrigues, MD at 5:01 pm

    @ BL
    You are frighteningly correct. From my catbird seat, our American healthcare system is so messed up, IMO, it may not be correctable at this point. We, as citizens of America, have been divided, conquered, enslaved and turned into food. Our constitutional rights have been smashed to fuel the economy.

    I never dreamed that some doctors would be given the federal governmental authority to take a God given body parts, your personal property, from millions of innocent Americans simply for-profits. This flawed and corrupting idea started in the 60s when a few scientist got approval to perform a knee replacement for knee pain. OMG.
    1. There is no such anatomical part as a knee.
    2. It is impossible to find pain on an MRI.
    3. It is impossible to cut pain our with a knife.
    4. Skeleton components or nerves cannot primarily be the cause or location of pain.
    5. Pain in the body can only be discovered with human interactions by touch and confirmation.
    6. Pain in the body can easily and effectively be treated with hands-on physical therapy w and w/o needles.

    The original lie was sown in the 60s with a tragic misstep which actually was a betrayal of all the correct science and evidence; “we can fix knee pain by removing the ugly parts we see on the MRI.” This is complete and tragic lie against humanity.

    These crafty scientist then had to go farther across this truth line by actively and systematically brain training all of us and all medical scientist to believe these science lies. These science lies can only survive in the darkness of complex governmental policy in a closed and very controlled, hierarchical, and well organized syndicate.

    This syndicate is very powerful and it has a good head start:
    https://en.wikipedia.org/wiki/Wilk_v._American_Medical_Ass%27n#Judge.27s_findings_in_the_second_trial

    Everyone is overlooking, truly believes or actively hiding these science fallacies. Everyone. You, I, all of your physicians, all of the academics, all of the educators, medical boards and the AMA by a long term brain training of misinformation. This scheme can only work if there are willing participants using unwitting, unaware good physicians joining in with corrupted scientists, profiteers and lawmakers.

    A crash and rebuild would be a reasonable event. As long as the rebuild is based on science-facts and not science-fiction. The original science lies must not be allowed to be sown again.

  7. Justin Theobald at 7:31 am

    Chronic Pain Patients are losing the fight to be prescribed the various medications that we rely on to have some kind of quality of life. Our situation continues to worsen in almost every state in the USA. It is now time to get serious about this fight or we will lose it.

    I’m Sorry, but in my opinion, petitions are useless. Politicians and bureaucrats don’t take them seriously. Rallies involving Chronic Pain Patients are difficult at best because so many of us are so sick that travel is not likely and many of us can no longer drive, have much money for travel because we are on disability, etc. . . . . . .

    Now is the time for state by state Chronic Pain Patient voter registration drives. Now is the time to put together a list, both state by state and national, of Registered Voters who suffer from Chronic Pain who either can no longer get their pain medications or have or have had difficulty getting their medications.

    Now is the time for a state by state survey to determine the # of Chronic Pain Patients being harmed by all of this odious legislation coming out of Washington D.C. and various state governments.

    Now is the time for a Chronic Pain Patient Bill of Rights.

    I and several others are working on such a bill that when completed we would like to share with everybody involved in this fight. It will have a Preamble that states our case using real statistics rather than Government Manipulated statistics and Media Scare Tactics. It will include a bibliography so lawmakers can easily look up the REAL facts about chronic pain. And then there will be an actual Bill of Rights for Chronic Pain Patients that they can vote on.

    If you are serious about winning this fight then please contact me on Facebook or via email (justintheobald2112@gmail.com). There are many things to be researched and many things to organize to be able to do this right. All kinds of talents are needed for this endeavor.

    What I am proposing is a broad coalition of Chronic Pain Patient groups; both funded and unfunded. That way individual Chronic Pain Patient groups will be free to go their own course as they see fit while pooling their time and talents into a coordinated political effort to turn what is being done to us around.

    Thank You for Your Consideration.

    Justin Theobald

  8. BL at 6:29 pm

    Justin Theobald, the government nor anyone else has taken away the ability of family drs, ie pcp’s to prescribe Schedule II meds. It is up to each dr what patients they want to prescribe pain meds to and which ones they don’t. Please read up on the laws before you say things that are not true. How can anyone expect to be taken seriously when they don’t even know the facts ?

  9. BL at 4:14 pm

    Justin Theobald, a Patients Bill Of Rights is useless unless it is made law. Something having the words, Bill Of RIghts in it means nothing without it being made law.

    Kristina, drug screens are up to each dr. Some drs do them and some don’t. Drug screens are not required law. The first thing that anyone needs to do if they want to get invloved with advocating for better pain management, is to read and know federal and state laws. Saying things like “but the doctor’s hands were tied and I knew it. He had already waived my last test right before my surgery because I almost collapsed in the office. This has to stop – the doctor’s need to be able to decide who to test and how often. NOT THE GOVERNMENT.” Shows that you have no idea what the laws do and don’t say. How can anyone advocated for changes when they have no idea exactly what they are talking about.

    I would like to make a suggestion to any group of people that want to get involved with advocating for a cause. Have someone come and talk to your group about how to successfully advocate. Passion for a cause is important, but it takes much more than that if you want to be taken seriously. You have to invest time and effort into studying and researching and learning what is legally required and what is not. You also need to be taught how to effectively communicate.

    Writting letters is a waste of time, so is sending emails because the politicians rarely see them. Office staff read and reply to letters and emails. If there is something that comes in that the office staff believes the politicians that is it address to is interested in, they will forward it on to them, but this rarely happens.

    Anyone can file a suit, winning it is a totally different matter. The question of how much it will cost for attorneys, filing fees, court costs, expert witness testimony, etc is the first question that needs to be answered. The second question is how are you going to come up with that much money and we are talking about much more than fifty thousand dollars, much more. And realistically, what are your chances of winning ?

  10. Justin Theobald at 11:35 am

    I’m Sorry, but in my opinion, petitions are useless. Politicians and bureaucrats don’t take them seriously. Rallies involving Chronic Pain Patients are difficult at best because so many of us are so sick that travel is not likely and many of us can no longer drive, have much money for travel because we are on disability, etc. . . . . . .

    Now is the time for state by state Chronic Pain Patient voter registration drives. Now is the time to put together a list, both state by state and national, of Registered Voters who suffer from Chronic Pain who either can no longer get their pain medications or have or have had difficulty getting their medications.

    Now is the time for a state by state survey to determine the # of Chronic Pain Patients being harmed by all of this odious legislation coming out of Washington D.C. and various state governments.

    Now is the time for a Chronic Pain Patient Bill of Rights.

    I and several others are working on such a bill that when completed we would like to share with everybody involved in this fight. It will have a Preamble that states our case using real statistics rather than Government Manipulated statistics and Media Scare Tactics. It will include a bibliography so lawmakers can easily look up the REAL facts about chronic pain. And then there will be an actual Bill of Rights for Chronic Pain Patients that they can vote on.

    If you are serious about winning this fight then please contact me on Facebook or via email.

    Thank You for Your Consideration.

    Justin Theobald

  11. Stephen S. Rodrigues, MD at 4:17 pm

    We already have in the historical archives of medicine a set of treatments for all types of pain problems.

    The problem? Is almost impossible to believe such a statement even though the statement is 100% true. This is a science fact which is easily being hidden from your awareness, knowledge and view for your use at this moment.

    I was deceived from 1983 to about 2008. You all are presently being deceived.

    This deceptive game is based on a series science-fictions and altruism betrayals which were put into motion a 100 years ago. The capstone of this tragedy was put in placed with Obamacare or the Affordable Care Act. The same provocateurs are now in charge of all of our healthcare destinies.

    The frighten part our academics and those we put in authority all seem to not know what is actually going on. They are all still in the dark about these betrayals.

    Muscle derived pain treatments were all solved and almost perfected in the 1950s.
    The AMA and profiteers have been slow but surely taking all of the treatment away from you with politics, power and influence.

    Read; Hackett, Travell, Simons, Rachlin, Gunn, Pybus, Baldry and many others. These physicians “perfected” the idea of using a needle to ignite healing within soft, connective and muscle tissues. The exact primary location of all chronic invisible pain syndromes.

    The conclusion of all of their work:
    All pain problems must have a location in the body and by default this location has to be considered in the muscular system. Muscle derived pain syndromes have always had a default set of treatment options. ie from massage to needling.

    This pain is called Pain of Life.
    [Not to be confused with “Pain of death.”]
    Pain of life is caused by life, living, falls, breaks and work.
    Pain of life is located and scattered throughout the muscular system.

    Pain of Life is 100% invisible.
    Everyone has Pain of Life.
    Pain of Life in located in our muscles demand to be treated like any other disease in the body.
    Pain of Life is 100% treatable.
    Pain of Life if not treated or under-treated will cause the muscular system to contract, wither, falter and fail over decades.
    Pain of life will not kill you but it will make you kill yourself.
    Pain in the muscular system will present as a multitude of ailments but only one location.
    Here are a few “Pain of Life” examples: Migraines, TN, Whiplash, lower back pain, CRPS, POTS, RSD, thoracic outlet syndrome, Diabetic neuropathy, CPS, CFS etc.

    The pain derived from the muscular system, so called “Pain of Life” can only be effective treated with the opposite of life and work – which is wellness, magnesium, massage, spinal unwinding, kneading, thin filament needling and ultimately hypodermic needling.

    I used to think that Acupuncture was the ultimate key. NO.

    The keys are the filament needles which are used in the discipline. The needles work within the pure science fact. The needles are the perfect tools to ignite the needed healing caused by the pain disease embedded in sick and tired muscles.

  12. Terri at 9:29 am

    For those above who say it is too late to organize, I humbly disagree. There are many other advocacy groups out there trying to help.How about joining the free one? There is power in numbers..

  13. BL at 10:36 pm

    What has been accomplished so far by any of these organizations ? Pain management was included in the ACA, but no means of funding it, so it has and will go nowhere, which means nothing was accomplished. The strictest guidelines have just come out regarding the managment of chronic pain, so whatever this and other organizations are suppose to be doing, it obviously is not accomplishing what chronic pain patients need accomplished. Talk is fine and everyone can do, but getting results that have an impact is not the same as talking. If the minority of comments regarding the CDC Guidelines were from chronic pain patients, what makes you think that there are enough chronic pain patients to have a positive impact ?

  14. Sheri Akopian at 8:48 pm

    MAYBE OUR DiSABILITY LAWYERS WILL HELP US?????????????

  15. Sheri Akopian at 2:29 pm

    DEAR GOD THEY ARE KILLING US. I just found out that my Cousin had a massive stroke (so the doctors say). But the truth is that his Neurologist took all his Pain Meds away a week ago, and he was suppose to go into Rehab this Monday so they could keep an eye on him. He was going through withdrawals, tried to take a shower, through up and inhaled it. He layed in his bathroom for 2 days before his ex-wife found him. He is currently on life support, induced coma, and if he makes it he will be a vegetable. These doctors are not even weening people off their meds (that they have taken for years). I am telling you people that “THE GOVERNMENT IS KILLING US”. PERIOD…And We Can’t do ANYTHING ABOUT IT. The Intensive Care Doctors are starting to put all his information together, but they still claim he had a stroke. GOD HELP US Of course he had a massive stroke because going “cold turkey” his blood pressure was uncontrolled. (My email does not work…anyone can contact me on FB under Sheri Lynn, Detroit, MI.).

  16. Dave at 9:04 am

    Mr Vineyard- not everyone is a true believer in the NPS or U.S. Pain Foundation. Undoubtedly you are very very attached to certain beliefs about what people should do an believe when it comes to pain. But once again, we live in a world with a great diversity of people and ideas. Theere are over 20000 religions in their world- that should tell you something. If one is a Catholic- should they try to tell those people who are part of 20,000 other religions that they should abandon their religions? You believe in the NPS and U.S. Pain Foundation-and there is nothing wrong with that. But when you try to evangelize and proselytize- dont be surprised if people who worship at different altars then you defend their values and beliefs
    The NPS to you the best thing since the internet- to me it is one rough beast that should never have beeen born- go figure.

  17. Richard A. Lawhern, Ph.D. at 8:31 am

    I see a thread in common here with discussions of mental health models and policy at Mad in America. There are many divergent opinions, and that is understandable as pain is often a very individual experience with many variations. But like some of the commentators on Mad in America, a lot of people here seem more interested in dominating the discussion with their own points of view, than in seeking a basis for cooperation in effective action that changes conditions in the real world.

    I believe that until pain patients and those who strive to support them can find more in common than arguments with each other, they will remain “stuck” with the status quo. And a very unhopeful status quo at that. I don’t have broad answers to this reality either, but I think I recognize the patterns. Physician heal thyself is a blade that cuts both ways. Patient heal thy contentions might also prove to be a truth that we must get behind. Argument for its own sake may stroke one’s ego, but it rarely changes anything.

    With this reasoning in mind, I would ask Paul Gileno to undertake a follow-on article. Share with us please, your sense of *actionable* principles on which most pain patients can agree. And invite the reasoned input of both those who do and those who do not accept your perceptions of what needs to happen in order for pain patients to receive better treatment. Then propose an action program with specifics that people can get behind with financial support.

    Sincerely,
    A 20-year advocate for chronic neurological face pain patients.

  18. Rev. Ronald V. Myers, Sr., M.D. at 11:47 pm

    Chronic pain patients need to organize to make their voices heard.

    This is why PAIN PATIENTS ADVOCACY WEEK has taken place every year during during the last week in April since 2005.

    The 2003 and 2004 “America’s in Pain!” – MARCH ON WASHINGTON – “Silent no More!” demanding congressional hearings on the pain crises in America took place at the latter end of April.

    The National Pain Patients Coalition (NPPC) (www.PainPatientsCoalition.com) was organized in 2001 to bring together chronic pain patients to have a unified voice of advocacy for their medical treatment. The theme of the NPPC is “Chronic Pain Patients Supporting Chronic Pain Patients.”

    Many pain organizations do not empower chronic pain patients to speak and advocate for their rights. That is not the case with the NPPC.

    Physicians and pharmacist can not speak for chronic pain patients. Only chronic pain patients can speak for chronic pain patients.

    Becoming a part of the NPPC is just a matter of liking or joining one of the National Pain Patients Coalition (NPPC) Facebook pages, including PAIN PATIENTS ADVOCACY WEEK.

    Many chronic pain patients are struggling financially and membership dues, etc., are not feasible.

    The American Pain Institute (API) (www.AmericanPainInstitute.org) was also organized in 2001 with the theme “Supporting physicians who treat chronic pain patients.”

    The API is a tax-exempt non-profit organization with a legal defense fund.
    Donations to the API support PAIN PATIENTS ADVOCACY WEEK.

    Most people can commit to donating $2.00 -$5.00 per month. If enough chronic pain patients and supporters make conttibute enough money, we can produce our own television and radio ads.

    What needs to happens is that chronic pain patients, their organizations, Facebook pages, web sites, twitter accounts, etc., need to be supporters and/or members of the NPPC and be involved in a PAIN PATIENT ADVOCACY WEEK, April 23-30. 2016, event.

    An event can be as simple as organizing family, friends and supporters to make phone calls to your members of congress, Governor and state legislators in support of the medical treatment of chronic pain patients.

    Organize a petition drive for signatures on our PAIN PATIENTS ADVOCACY WEEK petition.

    https://www.change.org/p/president-of-the-united-states-stand-against-chronic-pain-patient-bigotry-in-america?recruiter=7213271&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_for_starters_page&utm_term=des-lg-no_src-no_msg&fb_ref=Default

    Many pain patients are physically unable to participate in a rally or march. However, they do have cell phones and access to a computer.

    We need to place red ribbons on our Web and Facebook pages. We need to print up flyers on PAIN PATIENTS ADVOCACY WEEK and hand out at our doctors offices. Hospitals, clinics, churches, etc.

    Tie a red ribbon around the old oak tree or bush in your yard. Purchase a PAIN PATIENTS ADVOCACY WEEK Banner and display at your advocacy event. Hang the banner up on a building or fence.

    Please call me with any questions at 662-392-2016.

    WEAR YOUR RED RIBBONS IN SUPPORT OF THE TREATMENT OF CHRONIC PAIN IN AMERICA!

    FIGHT PAIN PATIENT BIGOTRY IN AMERICA!

    SUPPORT PAIN PATIENTS ADVOCACY WEEK!

  19. John Vineyard at 7:14 pm

    @Dave I believe I made the point I was trying to make, no need for us to continue boring the people who are interested in reading this article. It’s just in my nature to try to work with even the most stubborn of people for a good cause. I really tried to listen and understand your opinions no matter how angry they might appear, but like I said, I’m through wasting peoples time with this. Best wishes to you.

  20. Lori Coleman at 6:03 pm

    Thank you for this! I’ve been hearing politicians and other influential people talking about the heroin and opioid epidemic in this country, and have been afraid it’s going to come down on those of us who suffer from chronic pain, I’m so happy there is someone out there who cares and understands

  21. Marian at 1:12 pm

    Lindsey, I agree that this has more to do with moral judgment than pain control. For some reason, I do not believe I am hearing any truth here with the government and agencies agreeing to remove people from pain meds with no other treatment in sight. I do not understand the problem. Even if there are people dying from taking excess opioids, what is the problem. People take illegal drugs and no one cares if they die from those. Certainly all the old people on meds will not be sorely missed if they pass. It will just give more money back to Social Security. So who are the game players and what do they want? There are so many other issues where lives could be saved, for example, no wars, and I do not get what the real reasons are behind this thing. What happens if people with pain begin taking their own lives? Will this idea still be deemed a success? Like many on here I can only hope that those in charge of these changes will come into some serious pain of their own and be told no, they cannot have effective pain meds.

  22. krissy at 11:59 am

    Dave, I am completely with you on the US Pain Foundation. This article is a blatant advertisement to gather numbers, not to assist most of us. To me it is an arrogant organization meant to serve the people who work for themselves, not for others.

  23. Michelle Collins US Pain Foundation/ Advocate for NY at 11:07 am

    I am a chronic pain patient and also an advocate as well, and what they are doing to us is beyond wrong and immoral! I have written letters made phone calls and like others have said I think it has just made things worse for us. My Dr has talked about lowering my pain meds but so far I have been lucky and it has not happened yet but I know the day is coming, she knows I am a pain Advocate with the US Pain Foundation I have spoke my mind, and have told her how I feel because she was going to lower my meds you see I got a new PA as my old one left, and she came right in and said we are adjusting your meds and I asked if it was because of the CDC and she said the who? And I said the CDC and she played dumb so I had to explain, and told her I was an advocate and that I knew that they were changing the guidelines for opioid prescribing and I was with the US Pain Foundation, and then things changed my script has stayed the same. She was going to start weening me slowly off my oxycontin and then my percocet so I was not on any pain meds at all and leave me in chronic pain. And just treat me with Gabapenin and muscle relaxers. And I also showed her a report from and Independent Medical Dr because my Back injury was work related from nine years ago that has left me permanently 85% disabled the Dr also stated that I needed to stay on prescribed Opioids for pain. Also the PA that I have see has never once examined me, but wanted to take away my meds. I asked her if she has read all my reports thoroughly and she just looked at me, and I told her I have never asked for an increase and that the previous PA had switched to the the cocktail I am currently on to make me the most comfortable because of my diagnosis as he knew my diagnosis, I asked her if she knew my diagnoses, she went to look at my folder. She did not! And I stated so you want to change my meds without even knowing what is wrong with me, and not even doing a exam on me. Just say oh your on to much meds. I believe that is wrong. I told her I am not a drug seeker, I don’t take a pill if I am not in a lot of pain I will forgo it and wait and that she knows nothing about me! To come in and on a first appointment and want to switch things up is wrong! We need to change things I will do whatever I need to do to help out. I have a pain group on Facebook and we do petitions but its not enough.

  24. Dave at 10:02 am

    Mr Vineyard- your comments are self- serving. And you’re engaging in what is known as boundary maintenance operations. You might consider the value of agreeing to disagree. And let me state clearly- we disagree!
    There’s an old saying- doubt is uncomfortable, certainty is ridiculous- I have yet to see any comments from U.S. Pain Foundation Ambassadors that reflect serious doubts- or serious consideration of alternatives when it comes to the national pain strategy. And now- just like Sean Mackey- you want everyone to get with the program. Not all lawmakers see people who disagree with the status quo as angry- I convinced 27 lawmakers in NYS to sign on to bills requiring education in pain care. No doubt, officials at DHHS will use all sort of tactics to avoid concerns with democratic accountability and all sorts of tactics to dismiss anyone who disagrees with them But I didn’t have to even ask my Senator before they offered to intervene with concerns on the NPS with regard to those anti-democratic officials in DHHS.
    If the quality of a plan is determined by the depth at which you integrate alternatives- then the NPS and its framers failed to create a quality plan. Clearly, the NPS was rigidified in predetermined ways- and forbid evolutions. Where is the B plan if the NPS fails- as it appears it is going to fail? You and U.S. Pain Foundation- and the 80 who created the NPS have trouble with doubt and considering alternatives. As further proof of such- look at the U.S. Pain Foundations web page- few “alternative treatments” are mentioned- I can name several times more. If U.S. Pain Foundation is concerned about strong analgesics- why no mention of incarvillateine- which has been shown to be 30% stronger then morphine and have a higher ceiling effect. How bout LENS neurofeedback or ROSHI or NEurofield as treatment for pain- no mention of those. How bout FODMAP diet or juice fasting? We could talk of Perrin, Pinga, frequency specific microcurrent. Baunscheidt, heilkunst, triptolides- well at least, I can. I only point this out to let you know that U.S. Pain Foundation is not and perhaps can not be all things to all people in pain. To you everyone should get with U.S. Pain Foundation- how could anyone not see how wonderful they are? Others have different opinions- and Im not talking about just myself. And let me be clear- I have met some people from U.S. Pain Foundation and have shared comments- frankly, they don’t seem open to people who see things differently then them. And so it is clear we’re attached to different beliefs and values. Why should someone who thinks differently conform to the ways of U.S. Pain Foundation? And so this is why the NPS will fail- it reflects the rigid and excessive attachments of its framers to very limited ideas about improving pain care. It frankly, was amateurish and underdeveloped.
    Condemnation without investigation is the height of ignorance. The NPS- whether it was folks from the APS or AAPM, LInda Porter, the ASH, or Dr Koroshetz never responded to my comments on the NPS. So I find that to be the height of ignorance. If they wish to debate the issue with yours truly- let me state clearly- I believe debate on public issues should be uninhibited robust and wide open. But clearly, all they know how to do is be dismissive of people who don’t share their certaintist wisdom. Let them publically debate me-I wont run away.
    Instead of Americans joining the NPS and U.S. Pain Foundation- its time for the opposite to occur- its time for the framers of the NPS to join with Americans and fully consider their needs, their voice.
    You are dismissive of differences or ask people to give up their beliefs and values and become like you or like the folks at U.S. Pain Foundation. But, based on your comments and my conversations with others at U.S. Pain Foundation- its clear they wish to dismiss real differences, as well and that is why they are promoting homogenized pain care that will fail to meet the needs of anyone in pain who sees things differently then, or want something different from the creators of the NPS.

  25. John Vineyard at 8:51 am

    @Dave it’s obvious you have followed the NPS strategy to great lengths and have definite ideas how chronic pain patients should have rights and be heard. I am very much like you in the way I feel about what the government and healthcare industry are doing to us, I’m not here to say you’re wrong in your opinion of how things should be. I am here to say that to ever get to the point where we have more say over our treatment, we have to start somewhere. In my opinion and through my experience, our healthcare system especially in the past 8 years has gotten so much government control that we are in a very poor place to be heard at all. This is why I feel we need to work with US Pain and other groups to really put pressure on our lawmakers and gain a few of our rights back. At this very moment we have almost no rights over our own lives or bodies. It may seem as if we are letting the powers that be take control of our lives, well we did that a long time back, now because we weren’t paying attention and let them take away our rights, it is going to be a long hard battle to be heard and get some rights back.

    If we don’t work with US Pain and the NPS, we just appear to be angry individuals complaining about how we are treated unfairly. I challenge you Dave, with as much knowledge as you have on the situation to join US Pain and or any other groups and try to help with your knowledge and opinion to make things how you think they should be. We can argue all day long over our opinions, or we can work together and make a difference, one step at a time, one person at a time until we know our opinions matter.

    Please consider doing everything you can to change our situation, as I said we can argue till the cows come home, or we can join together and make a difference.

    Respectfully,

    John Vineyard

  26. Dave at 6:03 am

    Mr Vineyard. U.S. Pain Foundation should have used a rights based approach to promote “the rights” of people in pain. Instead, U.S. Pain Foundation hob nobed with those who had too much faith in experts determining what people in pain should have. So it begs the question- why trust those experts who failed to recognize “the rights” of people in pain in the past. Do you believe leopards will change their spots? U.S. Pain Foundation failed to call for the right of all individuals in pain to be heard in creating the NPS. Instead they accepted a few elitist experts- far removed from making an effort to hear what people in pain want- to decide for 140 million people in pain- what they will have.
    So clearly, I don’t find it convincing when U.S. Pain Foundation talks about the voice of people in pain- it seems clear to me that U.S. Pain Foundation thru participating in the NPS- has enlarged the voice of the powers that be- without a real effort to make sure anyone could be involved in creating the NPS.

  27. Dave at 5:52 am

    Ms Miller- you’re mistaken on many points. First- the creators of the NPS could have and should have allowed all interested parties and persons to create the NPS and not just respond to it. My Senator now is investigating why there was no response to my comments-and no record of them- even though I made them on a timely basis.
    To dismiss individual concerns, as you have done, is rather inconsiderate. Its tantamount to saying if your someone who disagrees with the NPS- tough luck.
    The NPS was so poor- that even the IASP leveled 6 criticisms about it. There was no effort by the 80 who created the NPS to consider alternatives. If truth be told the NPS was a done deal in 2009-and is based on what pain specialists wanted. It was they who convinced Senator Hatch to advocate for the NPCA to be part of the ACA in 2009.
    Obviously, at of the gate, people are not showing much enthusiasm or confidence in the NPS- perhaps if their concerns were considered by the 80 who created the NPS- they’d be more enthusiastic. And some organizations aren’t thrilled with the NPS either-http://www.huffingtonpost.com/john-weeks/chronicle-of-health-creat_b_9548062.html?fb_comment_id=fbc_978897492147838_979970625373858_979970625373858#f1d5a57f8630eed. Clearly the 80 who created the NPS were opposed to democratic concerns and inclusiveness. Its a reflection of their elitist values and beliefs in their own exceptionalism.
    But its clear since youre happy with the NPS- it doesn’t matter if a lot of other people are not happy about it- at least from your point of view- its just their tough luck.

  28. John Vineyard at 10:36 pm

    @Dave, I understand your frustration with the whole mess, believe me I do and I know it’s impossible to understand the battles that US Pain and many of us have been through trying to do something, anything to get the government to hear our concerns. I also understand the anger, I still have it, but believe me, without the experience and knowledge that an organization like US Pain has to offer, we are simply individuals getting angry about something we have no control over. I have recently come to understand that diplomacy and shear numbers trying to work together for a common cause are the only things that will ever get the smallest change to take place. In the governments opinion, narcotic pain relievers are the root if all evil. Things have already gone far enough that it would be impossible to turn the train completely around, yet we might be able to get some understanding and compassion in future treatments of chronic pain, not to mention just getting some satisfaction that people might begin to understand what we go through.

    If not for ourselves, then maybe for our children and grandchildren, we could get people to understand what we are dealing with.

  29. Krissy at 9:32 pm

    Scott Michaels, if you wrote the petition (if you did you know what I’m talking about) I’d like to let you know something important, plus give you big Kudos. I don’t know how to get ahold of you. Admin: if you don’t want to post this, would you be kind enough to give Scott my email address. Thank you very much.

  30. Zyp Czyk at 5:42 pm

    I agree with Beth. There’s just no way to understand persistent, everlasting, chronic pain besides having it or living with a loved one who has it.

    There must be some way to build a electric pain stimulator they could wear for a month. Having those who make rules go through this seems like the only way to fix this problem they have with empathy.

    After all, shouldn’t they at least be researching what they are legislating?

  31. Ronald Myers at 4:54 pm

    Chronic pain patients need to organize to make their voices heard.

    This is why PAIN PATIENTS ADVOCACY WEEK has taken place every year during during the last week in April since 2005.

    The 2003 and 2004 “America’s in Pain!” – MARCH ON WASHINGTON – “Silent no More!” demanding congressional hearings on the pain crises in America took place at the latter end of April.

    https://m.facebook.com/story.php?story_fbid=1164823816862440&id=100000044997035

    The National Pain Patients Coalition (NPPC) (www.PainPatientsCoalition.com) was organized in 2001 to bring together chronic pain patients to have a unified voice of advocacy for their medical treatment. The theme of the NPPC is “Chronic Pain Patients Supporting Chronic Pain Patients.”

    Many pain organizations do not empower chronic pain patients to speak and advocate for their rights. That is not the case with the NPPC.

    Physicians and pharmacist can not speak for chronic pain patients. Only chronic pain patients can speak for chronic pain patients.

    Becoming a part of the NPPC is just a matter of liking or joining one of the National Pain Patients Coalition (NPPC) Facebook pages, including PAIN PATIENTS ADVOCACY WEEK.

    Many chronic pain patients are struggling financially and membership dues, etc., are not feasible.

    The American Pain Institute (API) (www.AmericanPainInstitute.org) was also organized in 2001 with the theme “Supporting physicians who treat chronic pain patients.”

    The API is a tax-exempt non-profit organization with a legal defense fund.
    Donations to the API support PAIN PATIENTS ADVOCACY WEEK.

    Most people can commit to donating $2.00 -$5.00 per month. If enough chronic pain patients and supporters make conttibute enough money, we can produce our own television and radio ads.

    http://americanpaininstitute.org/donate1.html

    What needs to happens is that chronic pain patients, their organizations, Facebook pages, web sites, twitter accounts, etc., need to be supporters and/or members of the NPPC and be involved in a PAIN PATIENT ADVOCACY WEEK, April 23-30. 2016, event.

    An event can be as simlle as organizing family, friends and supportrs to make phone calls to your members of congress, Governor and state legislators in support of the medical treatment of chronic pain patients.

    Organize a petition drive for signatures on our PAIN PATIENTS ADVOCACY WEEK petition.

    https://www.change.org/p/president-of-the-united-states-stand-against-chronic-pain-patient-bigotry-in-america?recruiter=7213271&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_for_starters_page&utm_term=des-lg-no_src-no_msg&fb_ref=Default

    Many pain patients are physically unable to participate in a rally or march. However, they do have cell phones and access to a computer.

    We need to place red ribbons on our Web and Facebook pages. We need to print up flyers on PAIN PATIENTS ADVOCACY WEEK and hand out at our doctors offices. Hospitals, clinics, churches, etc.

    http://www.PainPatientsCoalition.com/redribbons.html

    Tie a red ribbon around the old oak tree or bush in your yard. Purchase a PAIN PATIENTS ADVOCACY WEEK Banner and display at your advocacy event. Hang the banner up on a building or fence.

    http://www.americanpaininstitute.org/banner.html

    Please call me with any questions at 662-392-2016.

    WEAR YOUR RED RIBBONS IN SUPPORT OF THE TREATMENT OF CHRONIC PAIN IN AMERICA!

    FIGHT PAIN PATIENT BIGOTRY IN AMERICA!

    SUPPORT PAIN PATIENTS ADVOCACY WEEK!

    http://www.PainPatientsCoalition.com

  32. Mary at 4:43 pm

    I am in chronic pain. I recently had surgery, and I can get as much opioid medication I want /need. What I asked my doctor’s to prescribe is Lanicane patches 5 %, and these patches have been denied because they are not approved by the FDA. I find these patches invaluable for pain. During my hospital and rehabilitation stay I was given Lanicane patches, and since I have been home my requests have been denied. I would appreciate your assistance or any information you can find. Thank you.

  33. Kimberly Miller at 4:36 pm

    It’s not as if there were no opportunities for public comments on the National Pain Strategy. We can certainly have a defeatest attitude, in which case, nothing will happen of a favorable nature for chronic pain patients. We can say that the NPS is not written for each patient, when it’s impossible to write a comprehensive strategy for over 100 million people and make it individualized. If you didn’t take any time or express interest in trying to get your opinions heard during the six month period, it’s hard to complain about the way things turned out. Just my opinion.

    The National Pain Strategy is calling for Chronic Pain to be seen as a disease in and of itself. This important distinction allows that chronic pain be viewed as destructive and in need of many methods of treatment INCLUDING, but not limited to opioids.

    Tests have shown that the brain, central nervous system, and various organs in the body become effected due to unrelenting, untreated or under treated pain. The National Pain Strategy allows for chronic pain patients to be designated as having an actual disease requiring treatment.

    If the NPS came out and said that basically chronic pain patients are in pain and need opioids, NOBODY would take this seriously, including me. This document, created by and comprised of the collaboration of 17 highly respected pain advocacy organizations, the Institute of Medicine, NIH, Tufts U, Mayo Clinic, CDC, and many other government entities.

    You cannot expect anything of this gravity to be taken seriously unless you involve positive input as well as detractors. If you do not do this during the process, you will face it afterwards with lack of serious consideration of your material.

    US Pain Foundation, as well as 16 other pain advocacy organizations, contributed to the content of this groundbreaking document. It was then opened twice for comments via webinar and a SIX MONTH comment period was allowed during which I, and other concerned members of the pain community were allowed to submit written addenda or comments to the NPS.

    The final version Incorporated many of these changes as put forth by the pain community. No ONE organization wrote, did, caused, or promoted the NPS alone.

    It is important the pain community tries to recognize when good things happen and tries to unite instead of fracture at every possible opportunity. We are truly in the fight for our lives, for our rights! The need and ability to organize has not been an issue for the anti-opioid lobby. We can’t seem to begin to get there.

    Kim Miller
    US Pain Foundation Ambassador Advocate

  34. Dave at 4:29 pm

    @ Jean- i agree with you LEts act now and recognize unless people in pain are designing their care- its unlikely they will obtain the care they want.
    Maybe Ed will help us by offering to post our ideas on organizing and advocating in an ongoing post.
    MAybe a cause lawyer or civil rights or aimal welfare organization will help us.
    Letter writing campaign can be effective if it is very large and focuses on key individuals.
    I sent posters and fortune cookies to get legislators to sign onto legislation in NYS to improve pain care.
    We should be willing to try different things in an effort to be heard. People in pain have the numbers needed to get attention of policymakers. Its a matter of will,

  35. Kristina at 3:17 pm

    I want you to know, as a U.S. Pain advocate myself, yesterday I was forced to wait in my pain management dr’s office for 3 hours because I have issues urinating and had to do a random UA. I’m recovering from a thyroidectomy that was performed on 2/10/16 and I’m in the advanced stages of RSD. I was in so much pain, but the doctor’s hands were tied and I knew it. He had already waived my last test right before my surgery because I almost collapsed in the office. This has to stop – the doctor’s need to be able to decide who to test and how often. NOT THE GOVERNMENT. We don’t deserve to be treated like animals, correction……our pets are treated more humanely than we are. My cat is currently in A LOT of pain and I’m shocked at how quickly and effortlessly the animal specialists (they have pain management dr’s as well) are working together to help him to figure this out. I can suffer, but they will put me in jail for animal cruelty if I let my cat suffer (I NEVER would think of letting my cat suffer). I also asked for some additional medication for the times when the barometer changes and I’m curled up in a ball crying. Because I have chronic kidney disease, I can’t take Aleve, as much as I would love to. It would put me into kidney failure. Due to the current guidelines and scares, I was told no, even though my dr trusts me implicitly. I asked if he had anything else or any other suggestions – he has nothing. He wants to titrate me off the narcotics quickly because of all of this – and where does that leave me? In major pain, with no options because the insurance refuses to cover anything else. RSD has no cure and at this point probably won’t – they make more money off the drugs and the treatments, so why find a cure? It IS genetic and both my children have this, it’s breaking my heart to see the children that have no voice in such pain.

  36. Jean Price at 2:18 pm

    I totally agree the time to take action is here…and has been here for some time! But more of the same is not likely to produce results, because the letters and petitions haven’t worked so far! How about the advocacy groups forming a coalition for strength, how about getting a nationally know champion for our cause like others have done, how about involving friends and families with targeted solicitations of their support, how about legal action from the civil liberties groups, how about something that will really work?? Throwing more energy, more signatures, more complaints, more rhetoric at this problem isn’t likely to give us what we want and need! Which isn’t just the opioids, it’s the right to appropriate care, patient centered care…not fear based care! Not care based on the problems of others who have chosen to use drugs for recreation! Not care based on the lies of statistics that have nothing to do with pain treatment! More of the same is not the route to take, we need innovative, decisive action and our advocacy groups can lead the way, if they will…they have to lay aside their egos and their politics to do it, and join with each other for a common good. I don’t see this happening yet. But I do see this as an avenue to accomplishing the goals and yes, it’s time!

  37. Richard A. Lawhern, Ph.D. at 1:37 pm

    One of the threads of many discussions in forums like this one is the observation that chronic pain research is under-funded and at least some programs are seriously mis-allocating resources to non-problems. If anyone is serious about organizing to have an impact, I really can’t see how letter writing campaigns to elected office holders or career civil servant bureaucrats are going to do much good. It strikes me that a more effective wake-up call might be a successful law suit against people who are responsible for the mis-allocations and under-funding.

    That being said, there are a few basic questions which demand real answers:

    1. Who BY NAME AND ORGANIZATIONAL TITLE should be sued?
    2. What legal precedents exist, if any?
    3. How will you raise ten to twenty million dollars to support a law firm to conduct the suit over a period of at least ten years (the experience of the suits against Big Tobacco come to mind here)?

    It seems to me that “serious” organizing really isn’t and can’t be about letter writing. The idiots we would be writing know there are problems, and they aren’t interested in solving the problems if a solution might upset their personal rice basket. Serious organizing is about money and the uses of money in legal advocacy against people who have royally screwed up their priorities.

    So where is the real advocacy actually happening? And if it isn’t happening, then what does the US Pain Foundation propose to do about it?

  38. Lindsey at 1:35 pm

    Find influential partners in the media to cover this issue from the patients’ perspective.

    Right now the media is having a field day covering the “opiate epidemic” when it’s really an addiction epidemic. Addicts are people filling an emotional void, their drug of choice may be prescription opiates, street drugs, food, shopping, gambling, alcohol, cigarettes, video games, Facebook, lying, stealing etc. Physical dependence is an entirely separate, medical issue. Dependence has nothing to do with addiction, morality, or willpower. There are a lot of medications I can’t stop cold turkey, none of them are opiates because I don’t even take opiates. People I care about need them in order to go on living, period. One cannot simply tolerate certain levels of chronic pain.

    This hysteria over prescription pain medication is about moral judgement, NOT concern for patients or addicts. Hysteria has led to legislation and recommendations that do not address the addiction problem, they create a new problem, for patients. The media needs to address the fact that people are moving from prescription opiates to street drugs BECAUSE access to their prescription medication is being taken away and it is not being replaced with alternative pain management or addiction recovery treatment (when appropriate).

    It violates the Hippocratic Oath for agencies to recommend ineffective, organ destroying drugs over opiates, which are usually more effective and less risky to the patient. Stop blaming doctors. Stop coercing doctors to deny their patients proper care. Encourage more providers to specialize in pain management, offer virtual office visits to pain patients in under-served areas.

    100% of this money needs to be spent on addiction recovery treatment and pain management care, period. The CDC recommendations need to be scrapped and I would argue that some of the existing legislation that makes treatment prohibitively difficult and expensive, needs to be repealed. For example, patients should not be required to bear the cost of extra travel and co-pays for excessive office visits or picking up and hand delivering paper prescriptions that can only be filled for a few weeks at a time and never through a cost-saving mail order pharmacy program. If law makers don’t care about the cost to patients, they should consider the cost to insurance companies and by extension the other members of the patient’s insurance group. Consider the diminished return on development costs for pharmaceutical companies. Do these measures discourage the development of new medications?

    Pain patients are being discriminated against due to inaccurate perceptions based on belief, not science, or reality. Until we address that, everything we do is a waste of time and money.

  39. Sonna Furtick at 12:48 pm

    It’s past time for the Pain Communities to come together. Sadly it will not happen as long as ego’s and agendas are in the way. Unless all involved can put away thoughts of their .org only or themselves only there will never be a large enough group that can make a difference by making our voices heard. Someones toes inevitably get stepped on and they become hurt and resentful and the efforts cease because of it.
    I have no problem putting my ego aside for the greater good. I wish others could and would do the same. This is not just about me. It’s about millions of people who are not getting the help they need.

  40. HJ at 12:11 pm

    If a medical degree means that doctors aren’t qualified to make the best decision for their patients…

    … then what are they spending all that money and all that time on going to med school, then?

    How silly of us to imagine that doctors would make better decisions about our care than legislators! I was delusional all this time. Maybe legislators are experts on being delusional, too!

    —-
    In all seriousness, it’s devastating that our rights to liberty and the pursuit of happiness are being so terribly infringed upon. It is not ethical to take away treatments that improve quality of life based on the fact that people WHO ARE NOT THE PATIENT have a problem with addiction.

    It’s easier to do with people in pain because our problem isn’t visible. It’s still life-limiting, and it can be disabling. Are we not being discriminated against? Why are we not protected by the ADA from having treatments withdrawn from us?

    Can legal action be pursued on behalf of pain patients? Respectfully, when I write to legislators, I get form letters in response. The CDC ruling did knock the wind out of my sails. And these patients who are having medications taken away from them… it makes it so much harder for them to even give voice to their troubles because it takes ENERGY… ENERGY that increased pain sucks out of us.

    How can we pursue legal action as a collective? We’re being wronged. Our rights are being trampled. Some of us are facing the death sentence… with suicide looking more attractive than dealing with pain. This has to go beyond letter-writing.

  41. Barbie Hollen Burr at 11:35 am

    Everything that the President is fighting for and trying to implement for the disease of addiction, needs to be put in place for chronic illness/pain patients also. Diagnosis, multi-faceted approaches for coping with the illness/pain, validation from all parties involved, a representative or mentor to hold ones hand once a diagnosis (or multiple) has been made. Once a person has been told they have cancer, someone is there to walk them through whatever comes next, treatment, financial resources, at home support, etc. It’s the same with terminal illnesses as well. Palliative and Hospice care is offered the moment a person is diagnosed with terminal condition, it should be the same for addiction AND chronic illness. We need co-morbidity support, we need access to medications and quicker appointments, we need a protocol for emergency room visits and hospital admissions, we need mental health assessments, treatments and support…and we need the government and medical profession to have a standard operating procedure in place for handling/dealing with us…which happens to be the same things addicts need. Instead of fighting for appropriate pain management that divides between chronic pain sufferers and those with the disease of addiction, we need to fight together for better care and management for both groups, as the needs are almost exactly the same.

  42. Dave at 10:40 am

    @ Mr Vineyard- I think it is clear, many people don’t believe in the NPS- a plan that U.S. Pain Foundation helped to create and promote. Though you wish others to get with the program so to speak- maybe you need to get with them. A homogenized and uniformitarian approach to pain care- where, as Paul says doctors will determine what your pain care will be-Each of us deserves to be treated for his or her pain individually, following the best course of treatment deemed by a medical provider. isn’t what many people in pain want. I don’t want a doctor dictating what pain care will be for me. Doctors, don’t want education in pain care, don’t want to be bothered learning about even nutrition- let alone “alternative medicine” like some generic “acupuncture” or generic “biofeedback”. And the pain specialist friends of U.S. Pain Foundation- obviously not willing to break their heads open so to speak to raise the standards of their own practices. So, I object to U.S. Pain
    U.S. Pain Foundation clearly wants people in pain to conform to their designs and to a plan that right out of the gate has received lots of criticism. They want history to repeat itself by promoting a plan for people in pain that is clearly medicocentric and designed for the good of a few big shots in universities, medical organizations and advocacy group-and will ignore the voice of any who disagree with them- and I can attest to that. Maybe in the future U.S. Pain Care and their friends in other organizations and government and its Ambassadors will find a better way to hear and respond to the needs of individuals in pain
    I have no problem with organizations speaking on behalf of their members- but I find it offensive when organizations take the position that they speak on behalf of all people in pain. There is no one at U.S. Pain Foundation that speaks on my behalf or shares my opinion- and frankly, I don’t need any organization to speak on my behalf. I am not going to get with the underpowered and thinly veiled occupational strategy aka the National Pain Strategy. U.S. Pain Foundation knows I have no problem debating them on the issue in public.
    Pain advocacy organizations should recognize people in pain can think, act and feel very differently about pain care. One program, one organization isn’t going to meet the needs of all people in pain- Americans are just too diverse for that. And the fact that compared to cancer or HIV, few people in pain have joined pain advocacy organizations- should tell you something.

  43. Karl Gross at 9:46 am

    I do appreciate any efforts people put forth towards helping people who suffer from pain thank you. But let us clarify one thing what opioid epidemic are you referring to Paul Gileno. Just to demonstrate absolutely how pathetic ridiculous this whole drug death narcotic epidemic has been dramatized by the media, the government, and the rest of entire anti-opioid zealots consider this. The CDC tells us we have around 30,000 narcotic opiate drug deaths per year in the USA from pain pills and heroin that is true so sad. Tobacco kills 400,000 to 460,000 people per year in the USA alone as per the CDC. That is 15 times more people killed per year than opiate narcotics. Nobody is screaming and jumping up and down about tobacco killing people. Tobacco has killed more people than all the wars that have ever been fought in the history of the world plus all other types of drug deaths except alcohol combined and by the way alcohol kills 80,000 people per year in the USA alone as per the CDC. Why don’t we go after the tobacco cartel drug dealers? Why is tobacco legal? Tobacco cost the USA over 300 billion dollars per year. Medical research says tobacco is just as addictive as heroin and it kills 15 times more people per year than heroin and pain pills. Tobacco is a more deadly drug than any legal or illegal drug in history but let us take away pain medication from people who suffer from severe pain. For all of the anti-opioid zealots in the United States of America that puts into perspective the USA drug deaths in the United State of America so let Philip Morris sell their poison to kill over 400,000 Americans per year. But we have to take pain medication away from severe pain patients because of 30,000 pill-Billy heroin shooting over dosing drug addicts that take narcotics to get high.

  44. David Stickley at 9:34 am

    Why is there not an outcry to care for those of us who are being marginalized wrongly for our suffering in chronic pain and in need of Opioid pain medication? We are being lumped together with those people who for whatever reason abuse their bodies with alcohol and drugs to get high. It is immoral and wrong to deny a patient medication that will improve their health and well being. Zohydro is a long acting (12 hours) Hudrocodone pain medication which could help millions like me get full uninterrupted sleep but it has been demonized and is being withheld from those of us who need it. The war on drugs has failed so the new tactic is to make all narcotic pain medications illegal. Where is the reason and intelligence in this MANIC response to solving the problem of alcohol and drug abuse? This is a typical attempt at a quick fix that is wrong and it should be illegal. Where is the national medical board that should oversee rational and intelligence decisions to ensure that Americans who need medication for pain relief actually get necessary medications? I myself am in daily hourly chronic pain from an auto accident having been rear ended by someone I suspect was on Heroin and now I have to fight for legal medication in a country that boasts about having high moral standards and values. We must and can do better than this!

  45. Kathy Cooper at 9:06 am

    Mr Gileno,
    It is too late to “Organize”. This latest Affront is just another in a long series of failures. I have wondered at the Intents of some of these “Pain Advocacy or Information sites. “Telling our Stories” made it worse. It is starting to appear to me that this was a way to channel our energy and waste our time. These became “Pity Parties” and only made us look more pathetic. There is Zero empathy, and it seems the Media and the Medical Business has been working tirelessly to discredit us, label us and deny us care. The General Mythology is that they are doing us a favor, because they already know, we have a Mental issue or a are seeking a Payout or some other nonsense. Even seeking Medical Care because we are in pain as opposed to dying silently is a “Mental Disorder.” These are not my words, only what I have heard.
    I have been following this now for 20 years, and it has gotten worse. There are some very well funded interests that are perpetuating this nonsense. I almost see it as genocidal. Those Articles about the “Missing Americans”, How many of them either worked too hard or were denied Medical care? We have to look at he big picture, at National Politics, the rhetoric is so ugly and I asked Myself “how did we get here?” How did there get to be so much hate in this Country? We have to look at the Economic forces that led here. How did so many people get manipulated into a War?’ It has been very good for business, good enough to undermine our Democracy. A similar Campaign was waged against Sick people, they are the reason Health Care is so expensive. It did not take much more to blame Pain patients for the “Opiate Epidemic.” The Interests of Big Pharma, the Corporate Media, and Health Care have all intertwined. They could not morally justify denying Health Care without first denying our humanity. The Labels and disinformation were very handy.
    I don’t have any hope anymore, I was really stupid for believing that there was some surgery that would help or there would be some “break Through”. I have been in Limbo for 20 years now initially thinking that if I just kept on it would get better. I even went to Therapy because they said this was Psychological, I almost believed it. I have been through 2 Surgeries, but they were too late to improve anything. For the first 5 years I tried everything, but Opiates, Chiropractors, massage, Therapy, Shoe lifts and a few other New agey things, nothing helped, in fact it made me worse.
    The only way I have kept what is left of my sanity is to just go day by day. Don’t make any plans, avoid relationships, and distract myself with temporary stuff, TV and the Internet. before this I rarely watched TV, I worked 2 jobs, I was returning to college when this got bad. Looking back every bad decision I made was because of pain. I even went to DBT Therapy. In our Group there was a young woman, who was paralyzed on one side due to a car accidents, she had gone a little off because of the pain. Also in that group was as Schizophrenic, and 2 Psychopaths. Apparently Chronic Pain is along those lines.
    I feel that the pain community has failed us all, but who could have anticipated this? I feel like a fool “Speaking up”, or “Advocating. Every Politician, policy Maker and State Regulator already had another Story going on, about how we are a the cause of Societies ill or something. They have already been conditioned to ignore us, the Media and our Politicians have done a good job distracting people from reality. The things I have seen really make me question Humanity. Things like an 80 year old with a broken vertebrae in Agony denied pain care or a diagnosis. I watched my Mother die from an Diagnosed dementia, while they did 2 Hip surgeries on her, and did not even give her an Acetaminophen for pain. If there is no compassion for these people. this shows how broken the System is.

  46. design_lady at 8:15 am

    What is the most effective way to get our voices heard? I know of people writing in to their elected officials and nothing is happening beyond more and more restrictions for opioid pain medications. Is your organization going to start a petition? We must come together quickly and with a strong and clear message or things will just continue to get worse.

  47. scott michaels at 7:26 am

    really? i repect your position and your advoocacy but it woll take so much more. we have written letters, talked to the cdc, and much more. we are being ignored at all turns. we must be visual and present. Until we actually protest and get the attention from the media i fear we will continue to be ignored. you are a person in a position to make this happen. Money is what we need to be able to afford for hundreds of us to travel to the capital steps. Pharmaceutacal companies should support this. Anything else is just a waste of time and hope.

  48. John Vineyard at 7:24 am

    Thank you so much Paul for making a call to action on this horrible situation. I am one of your Pain Warriors, a US Pain Ambassador and Advocate for New Mexico. I almost gave up recently after spending a huge amount of effort advocating against the CDC guidelines for opiate prescribing. I like so many others have been reduced to the point of receiving no narcotic pain meds any more thanks to the government war on opiate abuse. I fully understand now that the new rules concerning narcotics will not go away, while I am not admitting defeat, I am definitely on board with getting lawmakers to understand that we “Pain Warriors”, have been discriminated against. I’m with you and I pray we can all become united in this and get the government to understand that their war on narcotics has dealt a huge blow to the pain community, much more so than it has to the opiate abusers.

    Thanks again for giving us words of wisdom and calling for unity, I will do everything in my power to help bring people together with US Pain in this overwhelming effort to educate our lawmakers.

    John Vineyard
    US Pain Ambassador/Advocate for New Mexico.

  49. Bob Schubring at 7:24 am

    In the case of DC v Heller, the late Justice Antonin Scalia ruled that the Second Amendment of our Bill of Rights, sets forth an individual right to self-defense.

    We patients are under attack by disease. Chronic pain impairs our vital functioning…we cannot work to feed ourselves or clean ourselves or even sleep properly, because of the pain.

    Defending ourselves against pain is absolutely necessary and is absolutely personal.

    Throwing away a billion dollars at the addiction disease, stripping away our ability to procure the medicines we need, and promising some research efforts that in the future, after we have died, might someday lead to better treatment of some other people’s chronic pain, does not defend us from the damage done by the diseases that affect us personally.

    We patients need to stand in solidarity against the divide-and-conquer attacks by the political class, who seek to harm us, force us to suffer more pain, and pretend that the harm they inflict is good for us.

    Recently, in an 8-0 ruling, following the self-defense rights expressed in DC v Heller, our Supreme Court struck down a Massachusetts law, which prohibited citizens from using stun guns instead of real guns. Justice Alito, writing for the entire court in Caetano v Massachusetts, told Massachusetts that it was irrational of them, to prohibit non-lethal force as a means of self-defense, because the entire reason there even exists a controversy about real guns, is that they can be lethal.

    Applying identically the same principle of self-defense against crime, to self-defense against painful disease, it is self-evident that any means of pain relief, short of suicide, is to be preferred over suicide.

    People who have addictive personality disorder are at risk when they take drugs for pain, and may need alternative therapies to control pain, including particularly, mental health care to help them cope with addiction issues. Similarly, people with an allergy to penicillin, need to be given a different antibiotic, that’s not penicillin, if they get a bacterial infection. We wouldn’t obstruct every other patient with an infection, from obtaining penicillin, just because allergic patients should not have it. Neither should we obstruct every other pain patient, from obtaining opioids or cannabinoids, just because addiction patients must use these substances with caution.

  50. Dave at 6:48 am

    I’m glad to see Mr. Gileno recognize that people in pain are unhappy with the NPS-and that some new initiative is needed now that recognizes the needs of people in pain. Experts, government, insurers, etc- they cannot serve as a substitute for or as the voice of people in pain. They really don’t believe much in people in pain and they have waxed gross to the needs of individuals in pain. They really just don’t get it and they don’t wish to get it ,either. They, instead, want people in pain to get with their designs- despite their poor track record. Quite frankly, none of them really know what they are doing when it comes to working with individuals in pain to make their care much better.
    The National Pain Strategy wasn’t created with or for the “patient perspective”. On the contrary- this plan from the start excluded individuals in pain from taking part in creating the NPS. This plan clearly calls for a very small select group of committees of mostly the same old experts from the same old institutions and organizations to determine what access to pain care individuals in pain can have. Clearly the 80 who created the NPS may believe in their own freedom, individualism and democracy- but not the freedom, individualism and democracy of others. The NPS was clearly a power grab by pain specialists to dominate and determine what pain care will be for the rest of society and was undemocratic from the start. In addition, clearly the creators of the NPS don’t believe in people in pain- they don’t believe people in pain can make their own choices and decide what is best for them. They are turn coats, as well for the draft of the NPS is clearly pro- opioid- the final version of the NPS seeks to restrict access to opioids. So much for trusting Big brother and pain advocacy organizations.
    If insurers aren’t paying for alternative and integrative care- that’s due to politics. And the politics of the medical profession and universities who don’t wish to make the effort to learn much more then old dated treatments. In Japan over half of physicians make regular use of herbal medicine. In Germany over 7 times as many doctors, as a percentage practice acupuncture. So if insurers aren’t paying for integrative,alternative care- its largely due to the laziness of medicine. Need I mention that doctors still resist having any education in pain care?
    If there are to be real changes in pain care- then its up to people in pain. People in pain can call for more freedom of choice in pain care, more say over research- and less pain care by committee and less pain care that is focused on the needs and ambitions of special interest groups.Medicine and government aren’t willing to be more democratic and more responsive to individual concerns in pain care-they just don’t want to make the effort. Note well the NPS is a “population based” plan- it is not based on the needs of individuals.
    Its not to late to democratize pain care in America, its not too late to free pain care from the ambitions of pain specialists, the greed of insurers and the convenience of government officials. Its not too late to make pain care in America what Americans in pain want rather then what government, industry and special interest groups want.
    And P.S. watch out for those false profits in pain care.

  51. Beth at 6:36 am

    Lawmakers ought to wear a pain stimulator for one whole month before being allowed to legislate my med cabinet.