Can California Lead the Way on Chronic Pain?

Can California Lead the Way on Chronic Pain?

By Ed Coghlan.

When pain patients complain about the lack of a national pain strategy, many advocates say the battle is isn’t in Washington—it’s in the states.

“In reality”, they say, ”there are 50 different pain strategies—one for each state.”

Another axiom is that things happen in California are a harbinger of things to come nationally.

If those two comments are true—then what is happening in California on November 2 is something to which we should all pay attention.

For Grace will host its Change Agent Pain Summit: Part Two in Los Angeles and via live worldwide webcast.

For event details, including agenda, please visit forgrace.org. 

Over 100 California thought-leaders and luminaries in pain management (physicians, payers, administrators, policy makers, etc.)  will gather to develop a California Pain Strategy. The goal is to localize key recommendations from the National Institutes of Health’s National Pain Strategy in the Golden State.

In September 2017, Summit: Part One brought together people impacted by chronic pain and their caregivers to learn about the National Pain Strategy and the benefits of integrative pain management which utilizes alternative and complementary therapies. Ultimately, the day discovered from real-life chronic pain sufferers what barriers they face to getting optimal care and how to accelerate solutions for better pain control.  Information gleaned from that September event will be shared at this year’s summit.

“The National Pain Strategy, which calls integrative care best practice for pain relief, is THE answer. This Summit will lead to its implementation in California, the biggest state in the union, and be a model for the rest of the nation,” said Cynthia Toussaint, founder of For Grace and a nationally recognized leader for the right of women who suffer chronic pain.

The Summit aims to craft actionable items to positively transform pain management in California based on these objectives:

  • Improve pain care for California’s six to seven million individuals challenged by chronic pain
  • Implement core recommendations from the National Institutes of Health’s National Pain Strategy in the Golden State
  • Promote the Integrative Pain Care model to decrease the burden of opioid use

The day-long Summit will kick-off at 9am on November 2nd. During the morning session, a keynote speech providing a comprehensive overview of the National Pain Strategy as well as a current assessment of pain management will be presented jointly by Dr. Sean Mackey, Chief of Division Pain Management, Stanford University, and Christin Veasley, Oversight Panel Member, National Pain Strategy and Co-Founder & Director, Chronic Pain Research Alliance.

Later that morning, a Summit panel will cover key Strategy recommendations (Service Delivery and Payment, Prevention and Care, Medical Education and Disparities.) Panelists include Dr. Mackey, Dr. Wayne Jonas, Executive Director, Samueli Integrative Health Programs, Dr. Steven Richeimer, Chief of Pain Medicine, University of Southern California, Dr. Roger Fillingim, Department of Community Dentistry and Behavioral Science, University of Florida, and Diane Hoffmann, Law Professor, University of Maryland.

For those who would like to view the Summit, a free, live, world-wide webcast will be available via For Grace’s website. The webcast is made possible through a collaboration with TVPLive.com.

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Authored by: Ed Coghlan

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Rita GiovinazzoggBHE

I am at a loss to understand why all these forums and all these panels with all these so called experts seem to think that chronic pain patients are a bunch of pill popping machines. We are stigmatized for being in pain, and that’s pain we didn’t ask for by the way, then stigmatized because apparently we are all a bunch of drug addicts after years and years of taking pain medication at the same dose, not to get high, just to have a functional quality if life, and following every bloody rule asked of us. To top it off, we are insulted further by these so called experts who ‘assume’ we do nothing else but pop pills. It’s like we’ve never tried and/or continue to use steroid injections, tens, physical therapy, accupuncture, yoga, meditation or the slew of other non-opioid therapies. Well we must be a bunch of idiots right? In that case our loss of a functional quality of life doesn’t matter. Since when did torture become legal again? What the he’ll happened to humanity in this country or is it the high and mighty just love to watch the minions suffer?

Stacy Cooper

I’m in California and wish I knew what I can do in addition to going to Sacramento January 29 to protest and bring awareness at the National Don’t Punish Pain rally.

Bucky Long

Bad deal in Florida for pain. I suffer from numerous and severe pain issues, & it’s very difficult to get help. Prediction for the future: worse.

Julia

This is just how absurd our existence has become in America, land of regulation:

Addicts are able to access up to 120mg of methadone 365 days a year. No MME, no tapering, no questions, no meetings, no required health checks (annual EKG), just medication they WANT to supposedly decrease the likelihood of crime commission and withdrawl symptoms.

Intractable pain patients stable on the same 120mg, force tapered to just 20mg 365 days a year, undermedicated due to the MME equation (which did not include methadone in its formulation), pills counted, opioid contracts signed and adhered to, monthly appointments, forced invasive procedures to preserve prescribed pain meds, some of which lead to further injury and increased pain, arbitrary insurance restrictions on pain meds, cheek swabs/UA drug screening, all for medication they NEED to prevent suffering and death.

America loves ADDICTS, so much, the loss of life of socially productive, intractable pain patients is worth the loss to save socially burdensome, socially nonproductive people who will find something to become ADDICTED to; keyboard cleaner, Tide Pods, WhipIts, …

I wholeheartedly disagree with the new “integrative” pain management programs. It all seems very “addiction rehab” style, I am NOT an addict. The fact is, I just want to take my meds and live my life. I am a busy mother and wife and do not require education meetings, psychiatric evals, CBT/DBT, support groups, classes on how to keep my meds safe, all baloney. I raised 4 children, have nieces, nephews, Godchildren, all of whom have never accessed my meds; everyone has been safe on my watch. I don’t wish to focus on my issues or those of others and certainly not with a bunch of strangers. There is ZERO evidence these modalities actually help anything beyond helping the medical group make money. I have never lost a pill, refilled early, doubled up Rx, nothing, ever, I do not need nor want this type of management; frankly, I find it insulting.

Julia

I have been successfully managed with prescribed medications for intractable pain for the last 20 years. I am 51 years old, have 4 children and have been married 25 years. In addition to having CRPS, CVS, CIRS, hypermobile Ehlers-Danlos I was a elite level figure skater for 10 years (6 hours a day 6 days a week). A physically punishing experience for anyone. As a result I have damage to my joints and spine. I was able to do aerobics classes, Pilates, lead hikes into the mountains, boat, ski and in general live a good life tending to my family of 6. 2 years ago they began to taper my pain meds. That began the downward spiral my life is now in. I am largely homebound in pain everyday. I shower maybe once a month, don’t grocery shop, don’t cook (I was a gourmet cook), don’t clean my house or do laundry. Most days I spend either in a chair, in my bed or pacing round my home.
I am now on just 10% of my usual normal dose of methadone and they have taken my Soma away so I suffer with almost constant muscle spasm and my pain is off the charts. Funnily enough, they taper my methadone using the FAKE MME algorithm which doesn’t work for methadone because when they formulated the algorithm they left methadone out of the equation so now patients on methadone are severely underdosed. They also tried to take away my lorazepam (bendodiazepine)I take MAYBE 2x per month to thwart my cyclic vomiting as it has caused a cancerous condition in my esophagus called Barrett’s Syndrome.
It is indeed a horrifying day in America when the sick are made to suffer while addicts get their daily methadone.
It is a human rights violation and against the Hippocratic Oath to refuse pain management to a patient in pain, period. Why are #CPP lives needlessly being lost on a daily basis due to under management of pain in an attempt to save the ADDICTED? ADDICTS WILL ALWAYS FIND SOMETHING TO BE ADDICTED TO, #CPP are not the problem. HEROIN IS THE PROBLEM

IT’S A NATIONAL HEROIN/FENTANYL EPIDEMIC, NOT PRESCRIPTION (OPIATES) DRUGS.

SAD BUT TRUE: I have lost family members and friends, and I am always reading about too many young and old who have died from misusing DRUGS. It is tragic, for sure.

HOWEVER, I feel compelled to defend these prescription PAIN killers (opiates and others in that class) that are truly MIRACLE drugs for the 99% of the people who NEED/REQUIRE them and take them AS prescribed. Some people I know have been prescribed them for up to 10 years for chronic debilitating PAIN. They cannot live a quality productive life without them. They are 100% safe when used AS PRESCRIBED.
Please STOP blaming these prescription drugs because 1% abuse them. It’s the illegal street drugs HEROIN/FENTANYL that are killing our family and friends; very, very few from illegally obtained prescription (OXYCONTIN) drugs. It’s the HEROIN/FENTANYL, NOT the synthetically manufactured OPIATES;  i.e. OXYCONTIN.  Alcohol, which has killed and maimed hundreds of thousands of innocent people and destroyed families throughout the years in the USA alone, is a perfect example.

There are always those who will abuse whatever they have access to.  

TRUMP seeking comments on rescheduling cannabis and other meds

https://www.regulations.gov/document?D=FDA_FRDOC_0001-8787

Sharon

I’m 68 and had basically died in December, 1997 from the treatment plan the doctor had me on and it almost killed me. PAIN almost killed me and I spent 10 months in the hospital trying to live again. The only thing that worked was opiates and I was really afraid of them and I still am! I’m very aware of the opioid crisis and I personally am not seeking euphoria. Just pain relief to survive. I don’t abuse them and I know that I can’t do it again. My body and my mind can’t try something different at this point. My body is sick and the organs that I do have that work, my heart, kidneys and some of my liver. I know me and I feel that my spirit will take me home. I don’t have it in me to? I had a visit from God where he asked me that day December 27, 1997, if I wanted to go home or stay with my family. I asked him if I could stay with my family for awhile. I was in a coma and when I came out of the coma my sister was in the room and I told her what happened! She believed me for sure. Who comes out of a coma and starts telling a story like that🙏. Maybe it’s time to go home? I’m not suicidal at all. Thank you for reading my comment. This helps because I’m tired of not knowing from month to month. God Bless all of you and I’ll never stop praying for all of you who are affected by our Great nation😱 ONE NATION UNDER GOD! Not these young DEA agents…….and on!GtyRV

Sarina Smith

Jeanne Hyatt is so right. The doctors are desperate to get me off my opiate medicine but have no recommendations for what I will do then! The doctors are not the ones suffering: they are concerned with losing their license, I guess! This is really a bad thing for chronic pain patients. Had to quit my job after 27 years because the pain got so bad I couldn’t stand up to do my job. Do they think a person can just mosey along in pain after they get the reduction/discontinuing of a patient’s dosage? No. The patient will merely return to the exact pain that put them in this sorry situation! I am not taking this well for the peripheral neuropathy in both my feet will cause me to be (once again) chair/bed-ridden and unable to even shop for my family for the pain.

Jeanne Hyatt

What do they think I used for the first twelve years I was disabled with chronic pain? They are saying nothing more than “go back to the alternative therapies that didn’t work” for my pain condition. Opioids work.

Kevin Campbell

This is scary for the residents of California. When has California ever lead the way or implemented anything that benefits people. Their marijuana laws are stricter than in Florida, but my friend from Cali got all her pain medication stopped for using medical marijuana. I am able to use both therapies in Florida. She constantly tells me horror stories I am thankful Florida doesn’t have. I promise you this is just going to add beauocracy and another chapter in California’s sick socialist sceme. I hope they break off and leave themselves to rot and quit getting bailed out by other states. California is not something we should emulate and these will be nothing more than end of life panels that will add more hoops to the equation. We get help from finding a single doctor that understands your specific condition. I have seen this personally because I have an excellent pain management doctor that remembers me every month and tailors specifically to my needs and Quality of life. Let me LIVE let me choose my Doctor, not another government panel designed to bury pain patients’ needs and tell us what’s best. For those desperate this may seem like your only hope, but I promise this will only hurt us. What do you think will happen if the government gets more control? Nothing good for us in real pain but it sure makes those liberals feel warm and fuzzy they know what’s best for you because you and your doctor don’t. I am truly sorry for those truly in pain in California who aren’t buying their socialist bs. Walk a mile in my shoes and know what it’s like to truly suffer and be helpless because the state scares doctors to the point they can loose their jobs and freedom for treating patients. Remember, you get to pick your doctor, not the committee and they will not be on your side I promise.

Michael L McGugan

You cannot treat all chronic pain patients the same. Some things work on one that will not work on their patients! There are so many differences between pain patients that is why u see the Dr. In the first place. If this was not true we could all stand in the same line getting the same meds. All that therapy does nothing but hurt me. There is a reason the good Lord put these herbs and meds on this earth, to use them!!

Julie

Annoymouse
I am SO sorry that happened to you! I had a nerve hit with a antibiotic shot & couldn’t move my leg for 15 min….I lay there bawling thinking I might be paralyzed for life. Nurse had the GALL to say ” I thought you said you had this shot before?”
I can’t imagine being hit so many times!!!!
I also have had horrific allergic reaction to cortisone shots, vomiting blood from ibiprofen, etc
My point is: this is held against me as a DRUG SEEKER! PT, tens, ultrasound, traction (works! Very short term & limited)
Massage? Joke, as IF…any touch is painful, pressure is intolerable.
I don’t think ANY summit will help, and if it made any progress, Dr. FORREST TENNANT would be present.
I suggest you read his ” Handbook for Intractable Pain” & watch all videos by him. He is the #1 specialist in the US for addiction, pain, patient advocacy, and NERVE REGENERATION! For which he was given a grant by Gov to study. ” The Dr. Who refuses to stop prescribing opioids” is 1 of his videos (the DEA raided him 1 mo later). He says he takes his Oath seriously. He’s training Drs now, since he’s 78 yrs old! I can’t imagine any real progress taking place without him, & he’s located in Cali.
There’s a 5-part series from Las Vegas on pain patients he’s in, & he has some seminars on YT he’s begun.
” The slow death of compassion for the chronic pain pt” by Ken McKim is also great. Everything else?
Good luck. Peace

Jill

I’m always a little confused when I read about integrative pain care as though it was some wonderful new concept never before utilized. I know there were some pill mill doctors that handed out opiods to whoever could pay for them, but the vast majority of CPP used as many alternatives as they could afford until they tried opioids. Severe pain is not helped with yoga or massage. It is an insult to our intelligence to imagine our pain is so easily relieved. We try everything, give up, then try again. Opioids are effective and are the mainstay of the treatment of thousands of pain patients. We follow all the rules, are tested, pills counted, the very least likely of all to abuse drugs. Why can’t we just be left alone to live our lives as best we can. How is that for a National Pain Strategy?

William Dorn

Just help us get the pain medicines in the amounts we need. All these other treatments do not help most chronic pain patients. Its time to stop this madness.

Henry

My biggest complaint is we that suffer from chronic pain and take meds as perscribed have to suffer , due to the idiots that just want to get high and end up with a needle in there arm with herion in it, so we are classified as they are, sorry I’m not doing needles I’m just trying to get some relief

annonyamouse since I don't trust you people anymor

I have tried everything under the sun over the past 40 years. Surgeries that made things worse even though I was promised it would make it better. There isn’t an injection I haven’t had from out patient ones in surgical units to one at the doctors office. I could list them but there are just too many. I have had epidurals, razatomies, trigger point, facet injections, abdominal injections and thats just a few of them. I did it for years and years but they stopped working and there was nothing else they could try. I did 2 6 month pain management programs that they made me do. It was a 3 hour drive (which was extremely hard) 3 times a day and 6 hours a day. Neither did a thing and I graduated with the same pain but 2 coffee mugs to prove I completed them. I was finally given pain medication which gave me a life back. I could get out of bed and exercise. I could pain, make jewelry and cards. Now that has all been taken away. I am back to spending most of the time in tears and in bed. I can’t make jewelry anymore, I can’t do anything with my family, I can’t paint and I no longer can make cards. It was like a tease, here is your life back, hope you enjoyed it now we are taking it away from you. Anti depression pills for pain, no they did nothing for the pain but made me more nauseous and vomit more. So instead of being sick from the pain being so bad they added that to the mix. To do this to millions of pain patients with no regard to our feelings or replacing with it with anything besides take some ibuprofen is plane cruel and torture. So shame on all of you that thought this was a good idea. Suicides have increased dramatically but no one cares, people turning to street drugs just for a little relief but have no idea what they are getting and then overdose or do become addicts.. That’s much better then being under a doctors care, getting the correct amount, taking random drug test, and oh by the way I have never gotten high from my medication

Kathy Spain

Also the people who get to make the decions about Chronic Pain dont even know what it is like to live in pain on a daily basis 24/7 so they are making the decions about what is good foe someone based on their own perceptions having never ever experienced what it is like to have to sit, lay down or stand with pain that never goes away. So laying down to get accupuncture, or chiropractic , or an MRI causes extreme pain. Traveling in the car to the doctors office or walking up the stairs or sitting in the waiting room can exasturbate pain, which in turn can cause a cycle of pain that can go on indefinitely. People who have pain do t want to be on pain medications they want to be able to do simple things like go to the grocery store, make dinner, lay down to go to sleep, enjoy family time. We are tired of the Health Care community turning a blind eye to what we really go through on a daily basis. Health Care and doctors have turned their backs on us and have lumped us in with illegal drug users and treat us a such. It is appalling.

I had to give up my pain meds to eat ,now I don’t drive or live any type of activities, basically I live in pain 24/7

Kathy Spain

A lot of people who have Chronic Pain dont worl because of that pain. They also dont want to be forced into surgery that may or may not help them. Pursing after things like surgery, chiropractic, acupuncture, or stem cell therapy may cause finacial burden, bankruptcy or loss of a home, even with Health Insurance.

MICHAEL SWIFT

I began long term chronic pain therapy with opioids . Before that time I struggled to meet life’s obligations in extreme pain. Without any opioids medications I was sent to massage therapy, was taught mindful therapy, yoga, swimming, heat therapy, ( micro wave diathermy ), injections, biofed back, and last resort accupuncture, and lots of over the counter medicines NSADIS, Which stopped abruptly when I ended up in the hospital with multiple bleeding stomach ulcers. None of which worked because I still have pain and was reduced to non functional living on a sofa lying down.Then in the year 2000 a pain management Dr. saved my life with opioid medications. I was then able and now, to live a productive life. I am now working, writing books, and voluntarily assisting law inforcement. Thus I am living proof after 18 years of opioid managed treatment under a contract that it works. Plain and simple.

Heidi

Integrative medicine pain treatments have never been successful in treating the overall body pain-muscles, joints, spine that Scleroderma/Polymyositis(Mixed Connective Tissue Disease has caused since diagnosis in 1996. Even if something was helpful it is too costly for our income level.

Bernadine Swift

My husband and I have lived in chronic pain for over 15 years, myself since a child. So we know what suffering is all about. We both went through the thermal heat where you lay on your stomach they do this heat treatment for 20 minutes. We both had suffered terribly we have gone through massage, to swimming, to injections, you name it to home care with Ben gay, heating pads to bottles. To icy hot, to ice. Using Alieve til my husband had to go too the hospital to have his stomach pumped out to bleeding ulcers. I have had to pick him up off the floor him being 6Ft. 5 In. tall at 215 pds. crawling in pain crying. As I would rub his back to try and settle the pain down. Also dealing with my own pain going through three surgeries. He has a steel plate, screws, bolts, in his back and has two more protruding disks that is giving him tremendous pain. As I suffer as well with my back and the last alternative is the same the Dr. told me a back surgeon which will be steel plates, screws, and bolts. I have had to put my husband in a tub full of hot water, to lay their in water because it is buoyant and helps relieve the pain. Then in getting him out drying and dressing him he would go right back to tears. I myself would lay in bed in tears telling my husband I do not know how much more I can take with my own debilitating pain of suffering day and night. The first thing that greets you in the morning in pain and all through the day. Then in to bed still with no relieve to pain. Saying how much longer can we take of this. Then we were given opioids years ago. We both are able to live a life of pain free. Being able to do the things in life that we had stopped for so many years. I think the younger generation that are Dr.’s do not understand and have no compassion as to what suffering is all about. We have a contract set between us and our Dr. they need to learn what it is to suffer. Then they would have a change of view. Who are they to tell us what we feel they play God.

Scott

I broke my neck skydiving had 3 surgeries to keep from losing the use of my arms was taking and prescribed pain meds which worked for the intractable pain. I finally couldn’t get them anymore because the pharmacists won’t fill them. This kind of behavior is just strengthening the heroin cartel and letting us legitimate pain patients suffer with no relief while the junkies continue to thrive
Prosecute the abusers or let them kill themselves, don’t make the rest of us suffer, I always took my meds as prescribed and never had a problem and I was on a high dose of dilaudid

Laurie

I have a neurological disorder which for me, is very painful called Dystonia
I tired every treatment out there before finally surrendering and getting Botox shots which worked for awhile; even went to a Currandero (shaman). He was too weird!
But a couple of these treatments helped, for awhile…acupuncture and Feldenkrais, a movement retraining therapy.
I’ll come to think it’s more the doctor than the methodology, you know?

Then I had surgery which literally cut muscles and nerves out of my neck.
I LOOK OK…so people don’t think there’s anything wrong with me even my new neurologist.
This whole pain thing, I don’t know, but it’s worse. Now, I use a fabulous chiropractor and get Botox.
Stress of not getting pain meds has made me worse.
But, Botox ( if properly placed), and chiropractic works pretty well.

Very interested in this pain conference

Jandriene

Thank you for letting us know of live broadcast date/availability. I hope this ends up being positive, beyond the popular notion of stripping/reducing opiate use in stable, long-term patients.

Annonyamouse

acupuncture I had done it cost out of pocket $80 for first visit,I had a reaction to it which caused swelling and severe pain at a 10.when it was recommended that I try Integrative Pain Care acupuncture for severe pain to begin with major back fire,
Massage is a very short term relief,yet when a person’s pain gets aggravated by touch.

Integrative Pain Care should be used with opioid treatment because I have tried them and the relief is either short term or exerbates the pain to a point where extra pain meds are needed to even sit.
I had spinal tap 16 years ago and a needle hit a nerve that caused leg as I layed face down caused left leg to whip back ,8 years later had a epidural that took 40 minutes to get needle in as I kept getting nerves tapped by needle I screamed constantly but back labor ,caused severe pain first birth 17 years ago I almost had a stroke..Curve of spine, Then because of severe neck pain 3 years ago second steroid shot in neck hit a nerve.
At PT tried a Tens and it drove me almost out of the chair,after nodes were taken off I still felt the thumping on my back for an entire day after.
My point is sometimes Integrative Pain Care makes things worse for some of us,and I won’t go into detail of the He double hockey sticks some of these treatments have caused. am allergic to nerve medications also. Turmenic I tried that and got hives allergic.also reading Turmenic causes liver disease.elevated liver enzymes or something to that effect it mimics liver disease
I am just 1 who is terrified of any alternative they have been inhumane torture

Johnny Pilkington

It is so sad, crippled by psoriatc arthritis, my wife trusted a so called primary care physician hired by a local hospital system to treat patients, bragging that he only would prescrib pain medication to those he felt needed it, per his staff. 14 years, disabled from her former job, receiving disability from her former employee as well as from social security, now crippled from painful curled digits, unable to hold a pen on her hand or walk from the bedroom to the bathroom without unhuman pain and forced to to live in a bed as her world, because her pain medication was now given to junkies, cancer patients that once had cancer just as she had had cancer once, but now living with this painful arthritis and judge by our health system, cbc, am a and other voices that are to care for our American sick now she is told to takemail an insaid, iuphren, aleve, and other such now us less to here over the counter medication. Now given a cocktail of elavil, Cymbalta, ultra flex and buspar. These chemicals all having major contrindications, causing serotonin syndrome, coma and death as they did. Taking away what helped her live almost a normal life low dose of hydricodone 7.5 MG 3 times daily to this lethal cocktail that notes that notes if taken, but only taken in exteme situation should be monitored by the prescribing physician in this case a new physician for the local Mountain States Health Alliance for profit Blue Ridge Management office located in Elizabethton, Tn. The physician that took her former physician Dr. David Fenner place when he retired. No monitoring, she was 59, loved by her family and many many friends. She was found one morning with just what said would happen if she took the medication, serotonin syndrom, coma and death. A needless death set up by the health care system she trusted. Now her sweet smile no more closed in a casket, buried 6 feet under the earth Oct 12th 2018, being one year.