Putting the Patient Voice into Chronic Pain Policy

Putting the Patient Voice into Chronic Pain Policy

By Ed Coghlan.

“We have talked with many people in the last year who have been telling us the same thing—people in pain and their caregivers were not given a big enough voice in developing pain treatment.”

That’s what gave Cynthia Toussaint the idea to change her annual meeting on pain from one that is focused on women to one that is focused on elevating the voice of the chronic pain patient.

Cynthia Toussaint

Toussaint is the founder of For Grace—a Los Angeles-based non-profit that concentrates on issues of women in pain. This year’s annual conference is very ambitious—it’s designed to put the voice of the patient back into pain policy.

Their Change Agent Pain Summit: Part One which will be held tomorrow (Friday, September 22, 2017) at the California Endowment’s Center for Healthy Communities in downtown Los Angeles. If you don’t live in Southern California, you can view it online.

“It’s designed to give women and men with chronic pain a voice in improving pain care for themselves and others challenged by daily, persistent chronic pain,” Toussaint said. “Think of it as a big focus group!”

The keynote speaker will be Bob Twillman, Ph.D., Executive Director of the Academy of Integrative Pain Management, who will share the benefits of the National Pain Strategy and integrative medicine.

They will also honor Dr. Susan Samueli, founder of the UC Irvine Center for Integrative Medicine, as she will be this year’s recipient of For Grace’s Patron of Women’s Rights Award.

The National Pain Strategy was released over a year ago, but the actual implementation has been slow to non-existent, critics argue.

Toussaint’s hopeful that putting the patient voice into the process might energize the adoption of the NPS principles in California at least.

The “Part Two” will be held next year as For Grace will gather thought leaders from across the spectrum to talk about implementing patient perspective in pain policy.

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Authored by: Ed Coghlan

There are 11 comments for this article
  1. Shellken64 at 1:28 pm

    In Canada(Ontario) the highest amount of Fentanyl that can be prescribed by a family Dr is 50mcg every 72 hrs. At my highest I was on 175mcg every 48 hrs. I myself started to voluntarily lower my amount slowly over 2 yrs as I knew it was coming. I am at present at 100mcg every 72 hrs. I don’t feel I can lower my dose as at this dosage my pain is greatly felt. When my pain specialist said I needed to continue to lower as she needed to prove she had me moving towards the approved dosage. I started crying. I am exhausted. I also lowered my Cymbalta to a minimal dosage & totally stopped taking 2 medications. My thoughts are constantly at “I can’t live like this for the rest of my life. It’s like this 24/7 & when I have a body flare I need to lie motionless in dark room to minimize the sheer agony. Our community of chronic pain sufferers have had a lot of this happening & sadly we have lost many chronic pain warriors to suicide. The government “thinks” this will help stop accidental suicides but are just having a result of certain deaths due to utter lose of hope of any kind of pain control. Remember we are not on these opioid to “get high” or “feel good”. We are regretfully taking them to have some sort of comfort level towards ability to function. Its still painfull but more manageable.

  2. D. I. S. May at 3:55 am

    This patient’s voice may be heard questioning if this aggressive prohibition of adequate treatment of chronic pain isn’t the latest way to discriminate against women and prevent women from competing in the workforce. The criminalization of opioids, the Harrison Act in 1914, California, is hypothesized due to influx of Asians in California during this period. Such that despite laudanum (a pain medication on a par with aspirin or tylenol in the American medicine cabinet) in routine use in the US without any reported problems with abuse, opiates were criminalized. Asians were associated with smoking opiates. Florida followed suit a year later criminalizing cocaine, at the time in Coca Cola, due to associating cocaine use with the influx of Caribbean Islanders into that state, threatening incursion into the white male labor force. We know that today drugs laws continue to break down along racial lines: punishment for use of cocaine powder far less than for use of crack, e.g.
    Why shouldn’t we suppose that the crackdown on managing chronic pain is an act of aggression aimed at females? Given the well established discrimination against women with pain complaints, this seems a most effective way of keeping women out of the work force. Since 2006 the average earnings of women compared to men actually fell! As competition for jobs and income continue to worsen in the United States, rather than examining the actual underlying causes, let’s allow the sand to get thrown in our eyes. The sand: The problems with pain medication resulting in death by heroin in the streets. I am an older woman, pushing 80. I have chronic pain. I have no intention of stopping work. I do need my pain covered; but otherwise my capacity to work is unimpeded. I am determined to work because I love it, I have value to add to society and because I also have creative ideas to express and investigate. Hence I am determined to fight out this cheap shot at women disguised as a concern for population levels of death due to drug overdose.
    The 400% increase in production of heroin in Afghanistan since US troops began guarding the poppy crop: why isn’t that cited as a key contributor to increased heroin availability and death? I have looked at the statistics: increased use of pain medication in my age and gender group is not in the least bot significant. Yet my pain is now uncovered. I am routinely losing work time every single week and my income is suffering, as well as my creativity. I’ve done not a thing to deserve this. I do not respect the laws, I do not respect the violation of confidentiality, I do not respect the people in government. I do respect the data available in the book “Dark Money”. I specialize in workplace organizations. “Dark Money” validates my own impressions of changes in the US workplace over the past 30 years.
    People in chronic pain, who happen to be females, older females, in great measure, are easy prey. Women are easy prey in our society; factor age and pain and narcotic use for pain into the equation, and you have the easiest prey in the population.
    Big money drives the political engines in the United States. It is a barbaric, primitive and unsophisticated ethic aided and abetted with very sophisticated methods of data transfer and communication. People need to get their heads out of public media. The science of implicit cognition should be studied by Americans. Read Kahneman and Twersky. Read the American work; Banaji, Greenwald. Go to the website: Project Implicit. Most of all, stop believing the hype. The hype is just sand thrown into the public eye to distract the American public from the killing of democracy that is far along by now. Get out of social media and into society. Build real relationships. Speak with people, don’t listen to media personalities. Get real. So long as citizens in this country are passive, reading at the fifth grade level, happy to let other people do the work of administering resources, expect to die young, expect your children to work harder for less, and to have decreased life expectancy. The tide has turned and the turn was intentional. This is not a manifestation of Adam Smith’s device: ‘the invisible hand’. This is a manifestation of using technology developed from the science of implicit cognition that got a Nobel prize in economics. The predictable errors in judgment under heightened conditions of risk drove the development of the science awarded the Nobel prize in economics. The scientists goal was to save the lives of men in battle. In Israel. Not to take the lives of people in the workplace in the United States. Economic problems produce heightened conditions of risk. Living in chronic pain does so also. The discrimination against patients with chronic pain is a scam. It is just that simple. It is a decoy. Get real.
    Some of this data I have noted elsewhere. However, my investigations of the gender discrimination issues is novel in this context. As a workplace specialist, of course I knew for many years of the gender gap in salaries, for example. My motivation here is to rally activism among those of us suffering from this latest effort to keep women down. To get rid of us. I also was on a drug that covered my pain fully for a very long time. I was stabilizing, beginning to get my competency levels back to prior functioning after a 7 year period of one devastating illness after another, multiple hospitalizations and surgeries. Just as I saw the hope coming true the legislation on pain medications flung me back into crisis. I am tired of it. I want it to stop. I do not believe we have any hope of getting help from authorities. I believe we have to become proactive citizens, raising loud our voices at every level, through every medium and most importantly person to person. Do not target doctors; they are not the problem. They are also not the solution. They are weak; not the power brokers. The power brokers are the very rich. Steady your aim.

  3. Marie at 7:41 pm

    It’s going to get worse for some. PROP is trying to reduce the 90 morphine eqiv down even more. There is public comment but don’t remember the details read it from another site. And they are doing this full well knowing most of the overdoses are coming from.illegal fentanyl and opioid prescribing and overdoses have gone way down

  4. Scott michaels at 12:53 pm

    Just saw an episode of highway patrol from 1955. IT WAS ABOUT A WHITE GIRL IN THE STATE HOSPITAL.She wanted ro help got off heroin and help narc division arrest the pushers. Even back then heroin was a huge problem. BASED ON POPULATION GROWTH THE RATE OF USE IS NOT MUCH HIGHER TODAY. TRIPPLE THE POPULATION TRIPLE THE USE. THE pills have been under control dor over a year yet they conrinue to make it harder for us to het the SOSAGES WE NEED. UNTIL THAT HAPPENS, PAIN SUDDERERS WILL CONTINUE TO COMIT SUICIDE OR LOOK FOE ILLEGAL DRUGS. NOT TO GET HI BUT DOR PAIN RELIEF. FORCING PAIN PATIENTS TO THE STREETS IS JUST DEPLORABLE. A STARVING PERSON EATS OUT OF GARBAGE CANS SO YOU CANT BE JUDGEMENTAL. JEROIN IS SO EASILLY OBTAINED AND 1/10th the price of legal pain medication. The risk is worth the reward.
    THE DEA HAS BEEN USELESS. THEY BRAG THEY STOPPED A HALF TON OF COCAINE AND HEROIN CROSSING THE BOARDER. THEY DONT SAY THAT OVER 10 MILLION TONS DID MAKE IT OVER THE BOARDER IN JUST 1 YEAR. THEY NEED TO JUST LEGALIZE EVERYTHING. WHEN PEOPLE THAT ARE ADDICTS FIND THIER BOTTOM GET THEM THE REHAB THEY NEED. IT MUST BE VOLUNTARY. THATS THE O LY WAY AN ADDICT WILL HAVE THE DESIRE TO STOP.
    CHRONIC PAIN PATIENTS WISH THEY DIDNT NEED THE MEDICATION BUT NO MATTER WHAT ANYBODY SAYS OR DOES. OPIOID THERAPY IN WHAT EVER DOSE NECESSARY TO RELIEVE AT LEAST 90% OF THE PAIN IS NECESSARY. BETWEEN PILL COUNTS AND URINE ANALYSIS IT IS IMPOSSIBLE TO SELL OR TAKE OTHER MEDICINE WITHOUT THE RISK OF DRS DROPPING THEM. NO PAIN DOCRORS HAVE TURNED RO MIDDLE AGE THERAPY. I WAS TOLD TO BURN OFF THE NERVES FUSE MY SPINE ELECTEICUTE MY SPINE. WHY SO THAT WHEM THE PILLS WORK WITHOUT CUTTING ME OPEN. ILL DIE BEFORE I LET ANY BODY OPERATE ON MY SPINE. ILL FIND ILLEGAL DRUGS IF THE DOCTORS WONT HELP.
    I AM NOW IN BED FOR THE 2ND DAY IN A ROW BECAUSE I DECIDED TO SIT ON THE FLOOR AND CLEAN MY CABINET DOORS. WHEN I HAD MY PAIN MEDICATION I COULD DO THAT MOP FLOORS VACUUME HOUSE AND GO SEE A MOVIE. NOW ALL I THINK ABOUT IS MY LIFE INSURANCE POLICY AND THE EQUITY IN.MY HOME WILL SUPPORT MY WIFE FOR 5 YEARS SO SHES FORCED TO WORK. NOW SHE CANT BECAUSE SHE NEEDS TO BE THERE FOR ME.
    THIS IS CRIMINAL. NOW I HEARS CVS IS ONLY GIVING A 7 DAY SUPPLY AT A TIME. SO WE DISABLED HAVE TO GO 4 TIMES A MONTH AND HEAR A SPEECH. IM SURE THWYRE GOING TO CHARGE THE COPAY 4TIMES . SO INSTWAD OF $100 A MONTH ITS NOW $400 A MONTH. GOUGING US
    DOESNT ANY BODY HAVE ANY CONNECTIONS THAT WILL TALK TO THE CDC POLITICIANS ETC SO WE CANN BE HIMANIZED AGAIN. JUNKIES SHOULD NOT COME FIRST. 2% THATS THE AMOUNT OF JUNKIES. 98% TAKE AS DIRECTED AND FOLLOW THE RULES. TELLE IS NOT JUST ABOUT THE MONEY. THAT IS ALL THEY CARE ABOUT.
    OUTLAW ALCOHOL IVE BEEN DRUNK A FEW TIMES IN MY LIFE IVE SWEM THOUSANDS OF DRUNKS IN THE STREET. MANY DRIVING. THE DEATH RATE IS 10000X GREATER THEN PAIN PILLS AND HEROIN.
    DEATH IS DEATH. ADDICTION IS ADDICTION. 98% PAIN PATIENTS ARE NOT ADDICTS, BUT THAT NUMBER WILL RISE FAST BECAUSE HEROIN IS SUPPOSEDLY PRETTY GOOD A T RELIEVING PAIN AND IF THATS WHAT WE GET BECAUSE OF CDC THATS IT. WE KNOW THE DEA AFTER DECADES OF TRYING HAVE ACCOMPLISJED ZERO EXCEOT BEING OVER PAID TO TAKE 1 PIECE OF SAND OFF THE BEACH.

  5. Pam at 5:36 pm

    I agree, we don’t have another year. We need change ASAP. Every day we ate losing our brothers and sisters in pain, EVERYDAY, cpp’s are turning to the streets for relief getting God knows what or SUICIDE! I am terrified, abandoned by my doctor back in April, had to go to detox suboxone dr for 3 weeks as I couldn’t find a dr to take me, terrified of withdrawing on top of the severe pain I was desperate.I then get a dr, thru the help of a fellow cp friend, I am so grateful humanity still exists, knowing what each of us are going thru, this new dr is very nice but put me on a med that does not help, methadone, I don’t like it, not helping the pain, and it’s doing terrible things to my mind, I don’t get it. I was on same stable dose for nearly a decade, I can’t help the way my body metabolize meds, I can’t help I have a high tolerance to meds, but I do know there is a medication out there that DID WORK FOR 10 YEARS, I WAS ABLE TO PARTICIPATE IN LIFE! Now I beg God to take me, this is NOT living, it’s existing in a torturous hell while waiting to go home to God. The corruption behind the fictious opiod epidemic has caused total devastation to the pain community! ! Our corrupt government and thier sidekicks the DEA, Cdc, FDA AND PROP have been committing a full blown attack on innocent law abiding chronically ill citizens and our doctors, DENYING LIFESAVING PAIN MEDICATION TO THOSE WHO REQUIRE IT TO FUNCTION AND SUSTAIN A QUALITY OF LIFE IS CRUEL, BARBARIC, INHUMANE, TORTURE AND THAT IS CRIMINAL! ! !

  6. DphD at 5:46 pm

    I wanted to comment on Suzanne’s article and there was no place to do that!! Great article Suzanne!

    This is so true Cynthia, the voice of the patient, their caregivers and family is not included in policies, laws, guidelines..it’s a “you’ll take what we give you and you’ll like it kind” of scenario! Not acceptable! No more about us without us…period. Families have much to say, and suffer along with the person in pain…it’s a natural reaction. We understand this with our pets, and there has been an outcry for more humane treatment. Why not our family members?
    So glad you organized such an important event !
    Thank you !

  7. Steven at 11:47 am

    Great article, especially if one is a woman. But where does that leave men in chronic pain? We’ve become so fractured as a voice that the powers to be don’t listen to us, never have and never will.
    The “pain movement” is so filled with our personal testimonies and the only captive audience is ourselves. Until we can come together as one voice with an agenda that makes people in the DEA, the White House and both “political parties” sweat at the sight of us, more of nothing will continue to be done, except that those with good rhetorical skills will be told ” Great speech! You hit the nail on the head.” and meanwhile people in pain will continue to be measured out for laws that all but insure our extinction.

  8. Jacqueline T. at 9:56 am

    I had my yearly physical recently. I have RA, fibromyalgia, degenerative disc disease. I have chronic pain. Now I find out my right hip joint is severely degenerated. I have to see an orthopedic surgeon.

    After all this my GP tells me he can no longer prescribe my Tramadol for chronic pain. The DEA is cracking down on doctors prescribing pain meds for chronic pain. He told me to wean off them. I said what am I supposed to do for my pain? He said live with it.

    This is unacceptable. We need this law to change. Just because a few people abuse pain meds and/or OD doesn’t mean we all have to suffer.

    What these laws are creating are law abiding citizens that will either obtain drugs off the street illegally or make people start smoking pot.

  9. M.Billeaudeaux at 9:18 am

    Thank you so much for being and making aware this critical issue. I have read time and time again the struggles, the nightmares, the suffering others are going through because of the national “War on Opioids”. Until we make our lawmakers and physicians aware that we are NOT the cause of this epidemic, we are not the answer to this crisis, we will continue to see restraints on our medications if not total denial of them. This will in turn become it’s own critical crisis. Being a pain sufferer for years as well as a caregiver to one who suffered for years I fully understand this dilemma. I am also extremely fearful for the my future, will I be able to continue to work and live semi-normally if certain measures are taken in my area? I already know the answer, no, I will not. So many live my life. We need to be heard loud and clear. By high-lighting this agenda you are helping the public become aware of our stories. Again, thank you.

  10. Rick at 9:09 am

    Many of us are in extreme situations and cannot wait another year like perhaps some of your readership.

    There must be a concerted effort to speed things up?

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