People in Pain, Loud and Proud Change Agents!

People in Pain, Loud and Proud Change Agents!

By Cynthia Toussaint.

I’ve lived with high-impact chronic pain for 35 years, and founded For Grace to help women in pain more than 15 years ago. During this time, my biggest issue and the one I hear most from people in pain is that no one cares about us. Our voice is lost and unheard among the din of healthcare professionals, scientists and researchers.

On September 22nd, that changed.

For three years, For Grace has been planning a Change Agent Pain Summit – our goal is to implement the NIH’s National Pain Strategy in California and be a model for the rest of the country. The Strategy touts integrative care as “best practice” for people in pain, and this model of care has helped me battle CRPS along with a dozen other auto-immune conditions. I’m not alone here as the majority of people in pain who reach out to us say that integrative care has made all the difference.

Cynthia Toussaint

When For Grace assembled our Summit Design Team, we interviewed many healthcare and legislative thought leaders who were possible invitees. We got a lot of great feedback, but the idea that stood out most was that pain patients and their caregivers were not being given a voice… once again. That resonated deeply.

We decided then and there to break our Summit into two parts. For Part One, hosted in downtown Los Angeles in September, we gathered men and women in pain and their caregivers. It was a big focus group as everything we gleaned from our in-person and worldwide webcast attendees will be shared with the luminaries who attend For Grace’s 2018 Summit: Part Two.

To present our problem statement, our morning began with a panel of real-life people in pain and a caregiver. These passionate people spoke loudly and articulately about their pain stories and everyday barriers to care. The attendees sat up with attention.

We then moved on to possible solutions. Our wonderful keynoter, Dr. Bob Twillman, Executive Director for the Academy of Integrative Pain Medicine, caringly taught us about the National Pain Strategy, integrative care and how they work together. The attendees hung on to Bob’s every precious word as they yearned to learn.

I then had the distinct honor of presenting our annual award to Dr. Susan Samueli, a former woman in pain who’s made it her life’s philanthropic mission to bring integrative care into mainstream medicine. Besides Susan sharing her story of hope and courage, she announced that she and her husband Henry had earlier in the week given a gift of $200 million to UC Irvine to build a national integrative care and research institute.

Susan also spoke about how the Samueli Foundation worked closely with the Obama administration to include integrative care in the Affordable Healthcare Act. Susan’s words were pivotal, rousing attendees out of their chairs with a standing ovation.

After lunch, everyone was juiced with empowering enthusiasm. Change agents with capes, if you will. Tables were covered with paper so every thought could be scribed and saved. Our Summit architect, the mind-blowingly awesome Mindy Meyer, facilitated a World Café-style afternoon where key questions were asked about barriers to care and possible solutions.

People bonded as they moved from table to table, and at the end of each round, table hosts shared the major themes of the conversation. There were no wallflowers in this room as all had such a wealth of wisdom to express and were encouraged to do so. I’ve never seen such passion in my life, as these extraordinary people with pain finally found a place where their thoughts and words were heard, valued and recorded.

These Change Agents are my heroes – and we have them to thank for being the voice for all of us. When the National Pain Strategy gets implemented, it’ll be better than the one originally drafted. Better because the voice of the pain patient and caregiver will be deeply embedded.

Cynthia Toussaint is founder of For Grace, a Los Angeles-based non-profit that works on issues facing women in pain. She is also a frequent contributor to the National Pain Report.

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There are 15 comments for this article
  1. Sheryl M Donnell at 10:29 am

    To D. I. S.
    BRAVO! EVERY COMMENT SPOT ON!!

    The Idea of a summit is great but no one is listening to us. You talked a lot about adjunct therapy. That is all the government wants us to have, they don’t believe we are able to handle our own pain medication even though every single study they have proves otherwise. We all do some sort of alternative treatment as you yourself found out. That is a given. Not a single chronic pain patient wants to only take pills, besides we all know they don’t work alone.

    So, where have we gotten? Nowhere except a huge donation was announced and that is great for California.

    But for the rest of us, status remains FUBAR.

  2. Ibin at 2:32 pm

    I agree, Anonymous. We can purchase enough alcohol in a short time to become dependent on it, and in a few years our health is destroyed willfully but, the patients through no action of their own can not receive appropriate pain management. Many of us are basically “homebound” now but, I will give credit to those that can attend the activities toward the resolve of an asinine policy from the “CDC”.

  3. Dave at 6:42 am

    @ dis may. Ms Toussaints summit represents a radical departure from the passivity of people in pain and a very vital and significant step in the right direction.
    It is a combination of people in pains passivity and the social dominance orientation of professionals and government that has lead to the tragic state of affairs in pain care. Ms Toussaint has made a remarkable effort to unite and mobilize people in pain. I may not agree with much of the national pain strategy as i believe it is underpowered but i cannot fault the great accomplishments of the summit.
    And none of us should point a finger unless we are doing our share to improve things. I have gotten the nps to consider curing pain and lowering its prevalence and have gotten the support of Dean Minor and the NAS president for curing pain

  4. Anonymous at 2:43 am

    Thanks for your efforts, Cynthia. My daughter couldn’t be there for but an hour, maybe steetching to twi but that would mean her trying keep from screaming or moaning. So just how bad were these people in pain, and how not overwrought the caretakers.
    Back to again to where we think the very bad patients can try to steer “integrative care”, when they can’t dress, nor walk, shower, eat for pain. There is that other issue called money.
    Medicare will not pay for much. Therapy to try to live will not be paid for unless one improves dramatically. Never mind the getting stronger part or the help on pain with therapy. Medicare denies after a bit. Cruelty on that. As a full time single parent, and caretaker I have to do best I can to help her cause gov wont. Including a wheelchair.

    The Lyme that goes on undiagnosed for many years, yes very bad, no integrative medicine is going to cure pain on that one as it gobbles up tissue happily.
    People with physically damaged bodies are likely to not benefit from this program. It would be great for CRPS then.
    Get back to the root in the country. We encourage alcohol on tv. We have barrels at graduation parties. We set the stage for addiction in this country by alcohol alone. If heroin people want to kill themselves then go on, just like the alcoholics that kill themselves. Often alcoholics kill others with cars though in the process.. the heroin people’s car are left still parked.
    Leave the people in pain alone and docs trying to help. When ya’all get Lyme and no one finds it, better hope policies are to help those who need it.

  5. D. I. S. May at 8:37 pm

    Sadly, I agree that summits are no answer to this problem. This is where I ask you to look at a few facts. Annual deaths in the United States due to alcohol use are An estimated 88,000 people (approximately 62,000 men and 26,000 women) die from alcohol-related causes annually, making alcohol the third leading preventable cause of death in the United States. The first is tobacco, and the second is poor diet and physical inactivity.9
    In 2014, alcohol-impaired driving fatalities accounted for 9,967 deaths (31 percent of overall driving fatalities). In 2010, alcohol misuse cost the United States $249.0 billion. If we add the deaths due to alcohol- impaired driving fatalities, 98,000 deaths per year are directly tied to one drug, alcohol. Tylenol, or, Acetaminophen overdose sends as many as 78,000 Americans to the emergency room annually and results in 33,000 hospitalizations a year, federal data shows. Acetaminophen is also the nation’s leading cause of acute liver failure, according to data from an ongoing study funded by the National Institutes for Health.
    Nothing like these clear figures is available regarding prescription pain medication. Instead prescription pain medication is lumped in with ALL ILLICIT drug use; the figure 64,000. I’ve seen other data showing alcohol related deaths are three time opioid related deaths.
    Older women using prescription opioids for pain are at the lowest risk for abusing the medications. They use them to stay active. Inactivity is the second leading behavioral cause of death in the United States. This all-out witch hunt on prescription pain medication, instead of differentiating who is abusing pain medication, who is abusing illicitly, and mixed with what other drugs, allows easliy confused people, unedicated, alarmist people who takes what is written in paid for programming from media sources as unbiased serious data.
    Pfizer was convicted for racketeering and the public was never notified in the news.
    The problem is that the news in print, on broadcasts, is stilted, misleading, and in the service of people paying for the media.
    The criminalization of opioids was an act of treasury in 1914 designed to keep Asian immigrants out of the work force. Florida (treasury) followed suit, criminalizing cocaine the following year and used it to keep people of color immigrating from the Caribbean out of the work force. Drug sentencing continues to break down along racial lines.
    National statistics on drug and alcohol use and abuse is available to the public. Why people rely on news broadcasts to acquire information is beyond me. I have not watched paid for media broadcasts in decades. Reporting is nothing to do with honesty. And with the continued existence of sound public sector information, there is no need to rely upon biased sources for data.
    The marginalization of people needing treatment for chronic pain enabling them to remain active and productive at work is simply unconscionable. It is better to die writing in agony alone in bed unable to move? Unable to eat, bathe, take care of themselves, morbidly depressed, hopeless, without joy or help? Is that what CDC wants?
    This is NUTS.
    I’ve treated addictive disorders for over 30 years. People on opioids for the management of chronic pain are not a thing like drug addicts. That can only be believed by people with no knowledge and experience.
    Why is there no to do over alcohol related deaths per year? And the innocents alcohol abusers kill with their automobiles? Why no crack down on alcohol use?
    Why are people such slovenly thinkers as to allow themselves to be manipulated by other people who make no sense and just push agendas for the purpose of wasting our time with nonsense, and hurting people who are doing not a thing but trying to remain active in their lives, trying to live? I presume there is some agenda I am not privvy to; although I am privvy to more than most given my experience as a treatment provider. There are some very lethal lies published. I would not read a newspaper or watch a television for love or money. Open your eyes, speak to people in the world around you, get active socially and politically. Decide if government in it’s wisdom should continue prosecuting doctors for trying to help people. All doctors are not saints, to be sure. But neither are they pushers.
    People in chronic pain should be able to be safely and completely treated. That should be part of a pain management program requiring activity, work, physical training, psychotherapy. Not just pill popping. Patients under proper management are not the people dying in the streets. Until lately, when these folks can no longer get their pain treated due to ….what, exactly. What is the motive? No energy goes into the bigger killer, alcohol. What is the agenda, poeple?

  6. F.S.T. at 3:22 pm

    Yes, these summits and meetings of like-minded individuals are wonderful things. It’s just that it’s too late. Too, too late. The ones who should have listened didn’t listen then, and no one’s listening now. The doctors who were helping us have closed up shop and moved on to a “safer” kind of practice – one where they can treat their patients without the constant threat of losing their licenses and reputations. You know, treating patients with colds and flu. But not pain. It’s over. The ones who matter, who can reverse this one-sided crazy path of destruction they’ve forced us on, are done and gone. What you’re hearing now are the death throes, the weak and piteous scream of the dying, the ones left in the middle of the road, to be run over again and again til there’s not much left that’s recognizable. Most of the rest are already in the ditches where you can’t even see them any more. I never thought I’d see the day when such a large and once-viable segment of the population, those of us who suffer chronic pain as well as the good doctors who cared for us, would be turned on, victimized, then criminalized! And on such a grand scale that it soon became a witch hunt, and then became the all-out War on Pain Sufferers. No, I never thought I’d see the day when the war on drugs shifted to put decent people who contributed at one time to society in the crosshairs, robbing us of liveable lives while the druggie who use to get high, and their dealers, continue on as if nothing ever happened. What happened? !?!? I’m needing surgery to repair a shoulder now, but won’t because knowing I won’t receive a painkiller at least for the first few post-op hours just turns my stomach. The people behind this ridiculous -beyond-comprehension movement in this country must be really yukking it up now. Now that they won, it’s over, relief is gone. Just what is it they were fighting so hard for? What’s their reward? I personally couldn’t sleep at night knowing I caused hundreds of thousands of people to cry and pace the floor all night. I couldn’t eat another bite of food knowing I had robbed many of a few more hours of having supper with, and enjoying their grandchildren. No, just continue to have your summits and meetings. It’s always good to come together. But understand that it’s TOO LITTLE, TOO LATE for us, the chronic pain sufferers. There’s not much damage left to do. We’re shutting down, one by one by one. Whatever’s left, by now, are just shells of the former self, and pieces that are mostly in the ditches by the wayside. Sincere thanks anyway.

  7. Dave at 12:46 pm

    Congratulations. Summits are vital for people in pain and Im glad your NPS will be better then the federal nps.
    I hope you will give thought to a plan that includes efforts to cure pain.

  8. MichaelL at 12:10 pm

    Leslie, I lost my medical license for standing up for my patients. Most doctors are more interested in making big money, than helping patients in chronic pain. It takes too much time and effort for them…(;-P

  9. JoDawn at 9:44 am

    Cynthia, you are once again & always, AWESOME!
    Doctors working together, getting out of their “I know everything” power trips, and the patient not feeling like the un-needed part… it sounds glorious!
    I’ve only had one dr ever say “I don’t know, but I’ll find out”. He was the most caring, wonderful dr ever, but because he’s a GP & my pain meds were high, I had to transfer to a neurologist who deigns to give me 2 minutes of his time each month (while billing for a 25-30 min level appointment ).

    This article gives me hope. & that’s a very good thing!

  10. William Dorn at 8:03 am

    If the CDC does not change the guidelines to a higher amount people will suffer and die.All this other stuff will help nobody.This is the truth.

  11. Eddie at 6:38 am

    Please explain to me why this country attacks doctors and pharmaceutical companies when it’s the heroin laced with other drugs killing Americans. People with chronic pain now suffer more than ever because political correctness protects the criminals and we suffer.

  12. Lisa Hess at 6:36 am

    Cynthia, congratulations on a successful Summit! I’ve read your book and passed it on and I have come to admire your tenacity when it comes to being a Pain Warrior for chronic pain patients all over this crazy country we live in! I hope that the National Pain Strategy gets recognition from California to the south, north and east coast of this country and put medicine back in the hands of competent doctors and not in the hands of the government and pharmacists who believe they know what is better for a pain patient than the doctor and pain patient themselves.

  13. Leslie Meadows at 6:26 am

    As a long time almost 20-year pain victim with spinal and hand and feet issues I find it very hard to believe that no one was at the White House standing up for our side in late August and it at the June meeting at the White House. I was on Opana which on September 1st became unavailable to anyone in the United States because of two states that were having problems with dope addicts injecting it , 2 States and all of these pain patients that have been on it for years can’t have it any longer. I don’t see much changing if we don’t have someone on our side going to government meetings to decide laws and pharmaceutical preferences. I believe the doctors that say they are on the pain patients side don’t want to stand up for our rights what rights you say ,the right to live out of pain ,the right not to be called a dope addict , the right to be happy and live with our families in peace!

  14. Kahty C at 5:55 am

    That sounds really nice, but the reality is once they are out of this meeting with like minded individuals nothing will change. We have all effectively been shut down. Many of us are afraid to mention we are in pain, because the popular narrative does not include any of us. I have been dealing with chronic pain for 20 years, and as I watch friends and acquaintances get older, it is very clear they are going through the same nightmare I did.
    I no longer mention pain, or get in any situation I can’t leave if the pain increases. I avoid all Social activities, and will not commit to any kind of time schedule. I no longer call back the few friends or acquaintances I have left. Some of that is due to the fact that I am afraid I will hear bad news too. Another one who is housebound with no one to talk to, or gettign worse while their Doctors jack the around. I a seeing people that were vital and alive a few years ago, shadows of their former selves. While avoiding any mention of pain to the ignorant, the one who proclaim Acupuncture or other nonsense is a cure. We are in Post Facts and Post Science America, now. We simply do not exist, or else we are just misguided. We were all written out of the narrative, the advertisements, where most people get their information from anyway found that mentioning any of us was bad for business. We live in a country where Facts, no longer exist, and any nonsense in the “News’ can be regurgitated at will. A place where pseudo Science is much more popular than Science, where any goofball who believes that “Mindfulness” Cures pain can present it as if it were a factual thing. This is a country where things they heard on TV are more important than reality and facts.

  15. Rachel at 3:41 am

    Well done Cynthia! That is great news and I write from the UK where there is supposed to be integrative care but there are not enough residential pain courses to teach the patients like us. Yesterday I had to take a friend to a new primary care appointment and tape record it to get the Dr to treat me with respect. His colleagues had already bullied and abused me and my Member for the Scottish Parliament (a former Theatre Nurse fortuneately) had to intervene on my behalf. I am going to give your blog details to a Twitter acquaintance who also lives in California with CP. My new Dr finally convinced I am not an addict, that my Pain Consultant knows best, that I will never consent to being treated by unqualified people (that includes him, there is NO knowledge of chronic pain in primary care here), and that life is v. tough. Keep up the good work!

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