Dear blog followers;
It is quite rare that I repost a blog from another site. But in this case, it is well worth it for the sake of pain sufferers nationwide. In CNN Stigmatizes Pain Patients,which appeared in National Pain Report of 5/12/2016, the travesty that media sensationalists are clinging to at the expense of real people is outlined by US Pain Foundation’s President Paul Gileno. Most discouraging is that medical doctor(s) have been dragging downtrodden patients along an unpaved road with a virtual rope.
According to Wikipedia, the origin of the name “Gupta” is “derived from Sanskrit goptri, meaning ‘protector’ or ‘governor’.” With all do disrespect, in this case Dr. Sanjay Gupta has not lived up to that cherished name. Selling stories at the expense of patients by not telling the whole truth is disgraceful!
My offer stands to CNN for me to appear on their show in an effort to educate viewers on all sides of the various issues surrounding opioid therapeutics; the good, the bad, and the ugly. Or, I am happy to line up internationally renowned experts and watch from the sidelines. And while we’re at it, let’s seed the audience with patients in pain that have safely received opioids for years. I don’t believe a single pharmacist has ever appeared on CNN to discuss opioids. Is CNN that shortsighted to believe the Dr. Gupta is the expert in all that is related to medicine? After all, while I do claim expertise in the pain space, I don’t profess to be an expert in neurosurgery. The gauntlet is down once again!
Reposted here is Paul Gileno’s take on a recent CNN report and a suggestion of how clinicians and patients can help. Thank you for reading and feel free to comment here or on the original post, or both!
Here’s what Paul had to say…
Anderson’s Cooper Town Hall Meeting on Prescription Addiction in America further stigmatized people with pain. I am deeply troubled and disappointed by the one-sided, biased discussion surrounding pain medication that completely disregarded the voices of people living with debilitating pain.
U.S. Pain Foundation was asked to participate. As an organization, we were hopeful this would be the start of a positive, constructive conversation bringing better resources, understanding and help to those dealing with addiction and those courageous individuals battling unrelenting chronic pain. Sadly, the outcome was not what we had hoped. Instead, the show was another slight to the pain community. It now seems U.S. Pain was invited not because they valued our opinion and wanted to bring the true story to the forefront, but rather because they wanted to show all sides of problem were included in the “discussion.”
The apparent goal of the program was to further stigmatize people with pain by pushing an agenda; an agenda that harms those suffering with pain. Tonight’s town hall meeting shows that CNN and Anderson Cooper do not think people with pain matter. The hour-long ‘conversation’ was scripted, extremely discriminant to the pain population and potentially hazardous. It is a travesty that 100 million Americans are treated as second-hand citizens in the opinions and views of mainstream media, government officials and society.
Mr. Cooper, a true journalist attempts to give the full picture and tries to show the whole story; they do not push an agenda or ignore an entire population of people suffering from pain. Sadly, Kay Sanford was the only person with pain given the opportunity to speak. Appallingly, both Anderson Cooper and Dr. Drew Pinsky interrupted her as she shared her experiences and tried to ask a question. They were dismissive of her pain journey. In a mind-blowing moment, those on the panel even had the audacity to say her story was the minority. This shows me CNN had an agenda, which did not include highlighting the courage or struggles of people with pain.
U.S. Pain maintains that addiction is a serious epidemic in America that also faces societal stigmatization. However, the foundation believes the pandemic of pain in America is just as important. Those with pain have to prove their pain daily and mainstream news outlets that preach a ‘balanced approach to reporting’ are in fact making the situation more difficult for us to have voice and stake in the solution. They are impeding our ability to have access to the pain care we need and deserve. When will people with pain matter enough? What must happen for our voices to be heard?
As founder of U.S. Pain Foundation, I am asking for your help today – right now, in this moment. I encourage all of you to contact those CNN producers who led us to believe we would have a voice at the table. Together, let’s encourage them to do a show on pain and the realities of pain. I encourage you to speak out against these so-called journalists and reputable leaders in the field of medicine (such as Anderson Cooper, Dr. Gupta, Dr. Leana Wen and Dr. Drew Pinsky) who are harming people with pain by not sharing the whole story. Speak your mind and share your feelings on social media.
There is strength in numbers. Let’s start a public outcry for a new show about the plight of people with pain. Talk about the challenges you face accessing adequate pain care, and the difficulties you have overcome to find a new normal. This isn’t only about pain medication; this is about making sure 100 million Americans are not further degraded or discredited. It is about advocating for better solutions that are covered by our health care and accessible to all.
Take this opportunity to empower and educate those who should have done better research. Let them know this type of program causes more scrutiny as well as heartache and pain for people who are already judged, marginalized and stigmatized. I am asking everyone to speak loud and speak often. People with pain matter. I repeat: people with pain matter.
Below are the contacts of the producers. Thank you.
Founder and President Paul Gileno is a strong force in the chronic pain awareness movement. With his team, he crafts programs and events that educate, support, and inspire the community, volunteers, and loved ones. His own experience informs his work—he strives to help others live with meaning and purpose in spite of pain. Paul is on the Advisory Board for PainPathways magazine, sits on multiple state and national task forces, and works with various alliances and collaborations.
Nice try doc. In a sane world your solution would be great. Too bad common sense doesn’t boost ratings like sensationalism does. Also, too many have a stake in seeing the drug war continue. They’ve lost their cash cow, marijuana, so they need a another boogieman. Simple really.
I have lived a very painful 8 years since September of 07 I had a Bunion Surgery on my great left toe . This was not for cosmetic reasons . The toe gave me much pain and my director of nursing spoke with me and felt I needed to get it taken care of . I had no idea in my mind this would be the longest painful journey of my life as I know it now . The surgery did not go as planned after a week with the cast on I was suffering with an extreme burning pain . I called the nurse whom worked for the surgeon and explained my plight she ordered more pain medicine to be increased . I could not find help for one year after the diagnosis from the surgeon and his team that had did the surgery . It was written and handed to me on a piece of paper RSD nerve disease No cure… for this seek a pain management doctor . I new what this would mean for me I felt like I had no where to turn . I was told the sympathetic nerve blocks I had been injected with where given later then I should have received the blocks …. to no avail I was given a high powered pain medicine . It did not cure me nor take all the burning pain away but took the edge off . I was asked to try Methadone by my pain doctor I felt as if I had no other avenue. I lost my job after working as a nursing assistant for 14 years .The depression hit me like a brick it was painful took walk . My foot swelled up like a balloon and I did try to walk . The pain was horrific 24/7 sleep was impossible . I now was getting around in a wheel chair , then a scooter chair so I could get out side and go around the block . Life as I did know it would never be the same . My husband and sister in – law Mary helped with and researched this condition to find a Doctor in Pa . The Drexel University College of Medicine this where I had to go . Dr. David Tabby a Neurologist I got my first start . Dr. Tabby had studied under Dr. Shwartzman . This disease / condition had been studied for over 30 years by Dr. Shwartzman he has trained many great doctors such as mine . I feel the need to be very candid with my experience with pain . Pain patients please you ALL need to speak out and be your own advocate , if your unable to do this for any reason , please get someone who truly can help you . We are patients with disabilities that cause severe pain . What is happening the Doctors are all under siege , by the DEA and now the war on drugs that has and always will exist . It is about money , greed and not the patient in real life with real pain that goes hand in with there diagnosis . I do understand there has been abuse with many medications many to many and death . I understand the abuse of medications many people do not use them as directed or abuse them on there own . With is being said , do not always blame the doctors for not getting pain relieve …. they are not always at fault and are controlled by the DEA and the CDC and the Federal government so forth . Real patients with real disabilities that cause pain need there medications . Real pain patients are being stigmatized as ADDICTS of opiate abuse and that is a tragedy it is neglectful of human life . Ketamine is a nerve medication that can replace most all opiate use . It has worked for hundreds of patients ranging form children with RSD/CRPS adults to the elderly . I personally in my own opinion feel this will and has become an attack on the patients . The pharmaceutical companies are much to blame for this epidemic of Addiction . Look at the profit margins of the big companies . they are inventing more problems by pushing Suboxone / Buprenorphine as this is still an ADDICTIVE pharmaceutical , again a patient becomes an addict of this as well and in some cases over dose and death have occurred . Please do your research on any medication you are prescribed . For real patients with real pain , seek Ketamine in or out patient treatments for severe pain in my experience this has helped relieve my pain 80 % this treatment will stay in my sympathetic nervous system for 6 month of pain relieve , cut down from over the top pain . Please always speak with your Doctor on any medications and always get more then 3 opinions . I fully exhausted and I could write a book on this topic … but I live it every day . Blessings and gentle hugs to all that are suffering .
Stage 4 Cancer give us a break huh? This has gone too far, it’s a failed war on opoids. Where’s the compassion?
This was my emails to CNN.
To those Producers of Anderson Cooper 360
Last night during the AC 360 townhall on Opioid Abuse, only 180° of the full story was told. Even though we had an advocate in the audience, she was not allowed to speak up for the 116 million people in the United States who suffer from chronic pain. I can guarantee that if 1/3 of the nation were gay or lesbian and they were being denied service in a restaurant, bakery or even at a county court house that a representative advocating for equal treatment for them would be allowed to speak at an AC 360 Townhall. As a matter of fact it would be international News. That’s right, these instances have already been reported on by CNN.
Let’s start with the denial of service to a gay couple in Kentucky who were applying for their marriage license. There was almost a full 2 months of news casts regarding this vulgar display of discrimination.
Then there was the couple in Oregon who owned a bakery and refused to bake a wedding cake for a lesbian couple who were getting married. The point is that Gays, Lesbians, Muslims, Mexicans, Blacks and even Native Americans being discriminated against is worth weeks of coverage to CNN. But 1/3 of the entire population of the United States are being discriminated against by the federal government and not a single advocate was allowed to be heard at a CNN organized townhall. Seems to me that because the government feels that chronic pain sufferers don’t have the same rights as every other minority in regards to having a voice, that CNN has decided to follow suit and discriminate against the entire chronic pain community openly.
I emailed both producers today.
Obama apparently got into the act this weekend as well, sitting down with some semi-famous person yesterday to discuss the “evils of opioids.” I sent him an email today, too.
http://nationalpainreport.com/cnn-i-was-there-and-ready… This is what CNN did.
I have taken this opportunity to share my heartbreaking story in hopes these witch hunting Opiate ill informed skeptics will read and understand that I would have no life without Medically prescribed Opiates by a physicians care and strictly monitored monthly urine and blood test. Please remember that An Opinion Before A Thorough Investigation Is The Epitome Of Ignorance! And that a little more compassion from the Medical Field and its representatives could have saved my beautiful Stepdaughters life. Let me say this! A person who has a addictive personality will abuse anything that helps them feel better. I have taken Oxycontin for 12 years , I have had 20 major surgery’s in 9 years. I have so much physical pain I can not even get out of bed with ouit pain meds and when I run out I run out and just lay in bed praying the Lord relieve me of this horrible condition and I pray God you pain med skeptics never go through what I go through everyday of my life when the only thing you have to do is threaten what help I get, Shame on you! There will always be drug abuse and as the so called war on drugs has failed all this will! All you do is stoke and aid the drug pushers business to knew heights in the Black Market of Heroin while depriving folks as me to this horrible movement! My Stepdaughter committed suicide 4 years ago because of being treated like a drug addict by her family and doctors when all along she suffered from Lupus and Fibro which I believe was brought on by a deadly car crash at 18 , she told me between that which I was being put through and what they were putting her through she was not going to live her life in such a hell brought on by people like you that are on a witch hunt to out law Opiates and pain meds that give us some sort of a life . As a retired Police officer and worked indirectly close to the DEA, you people do not have a clue how thrilled you are making the illegal opiate trade and think of my Late Stepdaughter as you continue on with this bull shit movement to outlaw opiates! Just like the slaughter of children at Sandy Hook if there would have just been gun laws , my God they were Gun Laws , the guns that murdered all those 20 children were all registered and owned by a school teacher! You fight Drug Addiction in Elementary education by teaching all children the dangers of Booze and Tobacco which if these witch hunters want for us to know the real truth but they do not. I miss my Stepdaughter a so much and some of us will continue on the fight to protect our right to feel better and function without fear of these witch hunters trying to convince us to commit suicide . And they are trying to do exactly THAT!
The under line real truth is THESE witch hunters would rather us Chronic Pain sufferers commit suicide are and DRINK all the BOOZE we can drink! The Federals legalized it ( ALCOHOL) knowing its a more deadly drug than Strychnine. And just because the DEA has miserably failed with their bullshit war on drugs why do they deprive us sick people of our Constitutional Rights to be Happy in that pursuit of with Professional Physicians to take meds that give us relief of this horrible malady of Chronic Pain ! May God have mercy on their miserable souls they that seek to destroy us Chronic Pain Sufferers only and little hope of temporary relief of this horrible sickness.
Can we take your post and re-post it? I was thinking of posting it on CNN.
Catol, If you mean my post, yes. If you mean someone else’s comments, please reply to them directly.
They develop an opinion and then they create and locate the facts to substantiate their thoughts. Perhaps you should contact another resource which is “fair and balanced.” perhaps they would be more open minded to listen to all sides BEFORE they decide that their opinion is the truth.
Thanks Dr. Fudin! I hope they take you up on your offer. They owe it to the chronic pain community.
CNN, Anderson, & all of you skewing facts to the public-
Shame on you for killing those of us who are most in need yet least able to help ourselves.
There are so many levels of wrong being done by our gov then when supposed experts are brought in to verify false statistics (such as you did on your latest report) the public is being totally mislead as to what truly is happening to innocent citizens who desperately need help not destruction.
Your dismissal of legitimate pain patients as MINORITY is absolutely absurd!!! We are here but barely hanging onto life, yet here in huge numbers. Mistakenly disregarded , completely unable to speak out loudly enough to inform the public. WE ARE SICK- how can we fight after life saving medications are cruelly taken from us??
You should not sleep ever again knowing the group of people you are destroying is such an easy target you are beyond the worst bullies in any schoolyard–come on & be real- you have taken lives of the weak not caring about them. We are out here in large enough numbers that there should never be problem in setting reality straight of the falsities being upheld.
Take the challenge of true unbiased forum by those wishing to help us such as Paul Gileno president & founder of US Pain Foundation. His invitation to attend your meeting was a joke- his participation was totally negated by your agenda, disallowing the actual truth to be put forward.
SHAME SHAME calling yourselves some of the best in journalism…..
You are puppets to this hysteria called War on Drugs by following misguided gov. Entities killing our weaken ed citizens,turning your eyes from the cruelty that is being pushed forward in a country this should NEVER happen.
I have lost more of my life than I’d what I can bear, I only have little time left., been disabled since 2000 when at that time my life was full due to adequate pain relief to be able to care for myself, shop, drive, things you take for granted. However when this War on Drugs began after 12 years of life saving medications ( absolutely zero side effects or problems with any types of diversion) my medications suddenly removed for no logical reasoning left me hospitalized, then bedridden in a constant state of agony & helplessness. FOR NO REASON after 12 years of being happy & feeling like a human I was thrown into barbaric medical treatment as if I was a criminal for wanting treatment that was created for a patient l like me. Do you remove transplant patients meds for no reason? Or diabetic s insulin? Or epileptics seizure treatment??
CNN is such a highly regarded series yet my shock in your participation in this one-sided travesty cannot be enumerated. Congratulations you have now become the cheapest low life of media out there!
Anderson-i can only say my absolute impressed belief in your journalistic work has been shattered to see you are nothing but a low life media pig-yes I said pig for wallowing in pathways that are most beneficial to your personal well being. Stand up for what is right as I had thought you did always previously. What the hell are you doing playing their songs just to be seen for your personal agenda? I am sickened (emotionally) that even someone such as you will buckle to such wrong.
I feel justified in wishing you all disease ridden lives to join our ranks so you are suddenly left to die in agony with no one hearing your cries. Also may it take you suddenly -the sooner the better. You deserve more than our plight for being so ignorant & cruel. I HURT SO IT HAS created hatred beyond description. I am a cornered animal striking out in desperation which is killing me slowly in constant pain that I have never asked for, all I want is recognition I need medical help which I know is available since î was taken away by cruel power hungry sadists………….
My Story begins a little over a year and a half ago with pain beyond anything a Human should ever go through without help from some sort of medicine for pain,,My Family rushed me to the emergency room because of severe stomach pain,couldn’t eat, throwing up and couldn’t walk,,I’ve been on pain Meds for Fibromyalgia,Chronic Fatigue,Adheasions disease,osteoporosis,,osteoarthritis, and due to 5 abdominal surgeries severe adheisions of the intestines , because I reported that I do take pain Meds for all the disease of my body they would not even take the time to test me to see that I had a very bad intestinal blockage and treated me as a drug seeker,, even tho I did not ask for anything for pain and Hod knows I wish they would have knocked me out,I had my own Meds at home but this pain was beyond anything I had to take for pain.
They checked me somewhat and then sent me home because to them I believe they thought I was there for a fix of drugs..I ended up back in the ER after suffering another week with what turned out to be a severe intestinal blockage that almost cost me my life not to mention 14 ft of my intestines plus my sigmoid colon..
No Human Being should ever have to suffer like I did because others have abused drugs,I have never abused my Meds or gotten an early refill since being prescribed..I have Adheasions disease so bad it’s pushing what’s left of my insides out through any orifice possible,, I’m doubled over in so much pain I can no longer walk but a few feet here and there and this is with pain Meds ,, and the Government wants to take away more of them from me and I already can’t get around with what I have,, without them I will be bed bound,,I only get 4 hours at most somewhat pain free,, I’m never without pain but at least I get some time to care for my needs and take care of my home somewhat,,Please don’t confine me to a bed for what’s left of my life..I’m 64 years old and can’t live much longer in this kind of undertreated pain
My response to CNN: Dear Anderson Cooper and Dr Gupta: Please in your report tomorrow night, please, start looking into this war on drugs from the side of millions of American’s who are suffering in pain and now having their pain medications taken away under the CDC’s and FDA’s policies on narcotics. Please start asking some real questions like are any drug addicts no longer abusing drugs with these policies because we know that Prohibition does not work? The country is so concerned over the raise in heroin addiction and you will find, if you really look, that the raise is directly connected to these policies because if a drug addict can’t get the pills they want, they will and are turning to heroin and now our government is supporting the Drug Cartels who will get a drug addict anything they want just as the “Mob’s” did for alcohol. Did we learn nothing from history?
Why is the life of a drug addict more important than the lives of those who are in pain? Why are politicians acting as doctors in the decisions of what is the best way to treat us?
Mothers can no longer care for their children and bread winners no longer able to support their families. Who is going to pay for that care and where will that money come from? Who is going to care for those like myself who strive to stay independent and live within the boundaries of our disabilities but can no longer do so without the pain relief we need?
Health Care in this country is going to fail under these policies and it must when doctors refuse to take on patients who are in pain, clinic are closing and good doctors can no longer treat their patients in the way they know is best without fear of prosecution? Who are they going to blame for this? Obama Care? Someone must be blamed for the failure of our health care system to deal with those who are in pain.
Chronic Pain is a disability and we are being discriminated against because of those who will and do abuse drugs just like any religion or race who is discriminated against because of the actions of a few. We need someone to stand for us, talk about us, do something for us in this losing war on drugs.
We are told that 13% of Veteran’s abuse drugs but what about the 87% who need relief from pain and now can’t get that relief? Chronic Pain can and does kill and those who can no longer deal with a life in pain 24/7 will take their own lives and Veterans are the most vulnerable after the horrors of war. America makes these Veterans and makes the pain they now live with and yet we are turning our backs on them and telling them there is nothing we can do for the pain they are in.
Why aren’t pain patients given the same rights as others to decide what is the best care for their problems? Politics needs to stay out of our relationship between our doctors and the care we need.
Please do your jobs, do it right, look into the problems these policies are making that no one will talk about because of the fear of supporting drug addicts but we are NOT drug addicts, we are patients who need help.
Please look into the politics of all of this as we know the reasons behind this attack on pain medications after losing the war on Marijuana, which will become legal in this country, in order to validate their existence and the billions of dollars wasted in this losing war on drugs are now attacking those who are in pain. Look into the big pharmacies and the fight against them and yes, they need to be held responsible for never finding cures but only drugs that mask the symptoms to make more money but taking all of this out on those who’s only sin is that they are in pain, is not the right way to fight any of these injustices.
Please, think of the quality of life of those who are suffering in pain and think of your families, your parents, your children and how you would feel if they were suffering in pain and told there is nothing that can be done.
Help us, help the millions of American’s both Veterans and civilians alike who are actually being tortured because of these policies. Please look at all sides of this war on drugs and the dangers of drug abuse but remember, there are millions of us who need relief from our pain. They can’t fix the problems, can’t give us what we need to live with any kind of quality of life without the pain medications that are available so why are they torturing us?
Thank you
Judie Bruno
Palm Desert, CA.
perfect Judie Bruno….thank you for your voice 🙂
Couldn’t have said it better.You said that perfectly,
Judie, thanks once again for your true and vitally important words. The CNN show put the rotten icing on the rotten cake. We fight even harder now. I wonder if anyone knows how much time we have to take from our already-reduced lives to work so hard on this. It is down right stupid
Thanks to everyone posting here! Judy you are right on!
Thank you Judie!!! This war on drugs is a war on chronic pain pts and it needs to stop! I have been suffering ten years and have teied all the alternative therapies MY BODY, NOONE ELSE’S body, could take and my wallet could afford. Years of physical therapy, massage, chiro, accupuncture, steriods, epidurals, discographies, nerve blocks, facet injections, trigger point injections, OTC, AND NSAIDS that tore my stomach and liver up, and two failed spinal fusions that left me with severe nerve damage. I also have CRPS/RSD AKA the SUICIDE disease, DDD, fibromyalgia, sciatica, severe stenosis, cervical disc degeneration,radiculopathy, neuropathy, pancrestitis, osteoarthritis, just to name a few. Opiods were my LAST RESORT, like it is for nearly all pain pts, unlike what the government wants the public to believe. I was on the SAME DOSE for eight years woth success, never painfree, my pain was MANAGED and TOLERABLE. I was able to do simple things many take for granted like a daily shower, cook my kid a meal, walk my dog, laundry, attend family gatherings and my sons games. Last year my dr decided to play medication roulette, lowered my meds by more than hald and took some away. Since then I have been at war with my own body, the pain unbearable. I am angry, realy angry. It sickens me to know there are thousands upon thousands if not millions more of innocent law abiding citizens who are chronically ill that are being TORTURED at the hands of the Government , CDC, DEA and the FDA. Legitimate pain pts who have medical records, MRI,’s, XRAYS, SCANS, ETC, documenting their DEBILITATING Conditions THERE ARE NO CURES FOR, are being DENIED LIFE SAVING MEDICATIONS, MEDICATIONS THEY HAVE BEEN ON FOR MANY YEARS, or their medications are being lowered to INEFFECTIVE DOSES THAT LEAVE US IN AGONY! Whatever happened to a free country!?
I would like to know why someone who is CHOOSING TO BREAK THE LAW, CHOOSING TO ABUSE WHATEVER THEY DAM WELL PLEASE, WHY ARE THEY NOT REQUIRED TO SUBMIT THEIR MEDICAL AND PHARMACY RECORDS!?!? Addicts go to these detox drs and or centers and blame their addiction on a dr they never saw. They don’t accept accountability for their actions. These false statements that they started by seeing a dr is adding more fuel to the anti-opiod crusade, Addicts/abusers should be required to submit pharmacy and medical records as well, I bet that 85% of them did not start their addicition by seeing any doctor. It really pisses me off that someone who is CHOOSING to abuse is allowed MANY opportunities for treatment, if they fail they are coddled like a broken baby, given chance after chance to get clean. Legitimate chronic intractable pain patients are ebing NEGLECTED, ABUSED, MISTREATED, DEGRADED, UNDER-MEDICATED AND DISCRIMINATED AGAINST! Legitimate pain pts are killing themselves to escape the pain!!! I honestly don’t know how any of these corrupt entities are proud of what they see in the mirror, They have the blood of every suicide by a pain pt who could no longer take the pain on their hands. THIS IS GENOCIDE! THE CHRONIC PAIN Community NEEDS LEGAL REPRESENTATION AND WE NEED IT NOW!!!
My email reply to the two CNN producers is being published in tomorrow’s National Pain Report, but at Jeff ‘s request, I’ll share it here first with his erudite readers. ;#)
Dear CNN,
Congratulations.
You have joined other leading American media outlets, like the NY Times, and CBS 60 Minutes, in obfuscating the distinction between Chronic Intractable Pain and Substance Abuse with your recent Town Meeting on the “Opioid Crisis”.
In doing so, you misinformed millions of gullible American television viewers about the nature of pain, pain treatment, and addiction. At the same time, you insulted and disheartened the millions of Americans who live with Chronic Intractable Pain and maintain a relative semblance of normal behavior because of chronic opioid therapy. In your terrible misjudgment, you’ve placed the problem of opioid substance abuse at the feet of those wise and compassionate physicians who understand why pain must be treated, often with chronic opioid therapy.
The “opioid crisis” is a media fabrication based on flawed CDC opioid-related mortality rates. The information is out there, yet you’ve missed this story completely. The story is complicated and can’t be told in a Town Meeting or sound byte, yet the threads of this problem in reporting opioid death rates are freely available, as written in Dr. Robert Twillman’s What’s Really Driving Opioid-Related Death Rates? (http://updates.pain-topics.org/2012/01/whats-really-driving-opioid-related.html), and in the writings of Terri A. Lewis, PhD., myself, and others in blogs like the National Pain Report and Pain News Network.
TV doctor Sanjay Gupta writes that opioid overdose is the #1 preventable cause of death in America. Why does he ignore the CDC’s own figures — 800,000 annual deaths in America are attributed to the use of alcohol. How many people die each year due to medical error — more than those that die of opioid overdose.
Dr. Gupta and the hashtag #DoctorAccountability hint that physicians writing legitimate prescriptions for suffering Americans are behind the opioid problem. While some physicians certainly need more education regarding opioids and their use, the rise in overdose figures attributed to opioids has little to do with the millions of Americans treated with chronic opioid therapy for their Chronic Intractable Pain conditions.
For these people, each and every analgesic pill is preciously guarded. These medications allow us to go to school, raise a family, follow a career, participate in our communities, and in other ways, pursue happiness within our limits. And no Dr. Gupta, they don’t take away all of our pain, but provide enough relief to allow a semblance of normality in our day to day life.
Attacking physician/researcher Dr. Russell Portnoy is a low blow, based in ignorance of this great man’s part in the renaissance of pain study and treatment that blossomed during these past 35 years. Dr. Portnoy, along with countless other physicians and researchers have helped millions of suffering Americans regain function and purpose in their lives because of the their pain treatment. Multimodal pain therapy is nothing new, doctor. People who live with Chronic Intractable Pain have tried every medical treatment known, and plenty that have been unproven but promised to offer relief.
Has CNN investigated how the American medical insurance industry denies many effective pain treatment modalities to the patients who need them, and who have had proven benefit with them in the past?
In 2011, the Institute of Medicine published Relieving Pain in America: A Blueprint for Transforming, Prevention, Care, Education, and Research, which states:
“Every year, about 100 million adult Americans experience chronic pain, a condition that costs the nation between $560 billion and $635 billion annually.”
Here’s the real epidemic, ladies and gentlemen of the press — the pain epidemic that causes millions of Americans to suffer daily, and that is responsible for more medical spending than heart disease, cancer, and diabetes, combined. Chronic Intractable Pain is a disease that causes disability and destroys lives and families.
I wonder if any major American media outlet has the journalistic integrity to peel back the layers of this story?
Where is your reporting on this Pain Epidemic?
Look to the blogs, the patient support groups, and talk with real people who live with pain. Talk to real pain doctors who treat every day. Talk with America’s leading pain physician, Dr. Forrest Tennant, MD, PhD. Talk with the American Academy of Pain Medicine. Read the Journal of Pain Research. Talk to the International Academy for the Study of Pain, whose 2010 Declaration of Montreal declares that every human being has a right to effective pain care (which doesn’t mean a day’s worth of Vicodin followed by OTC ibuprofen after a root canal, as suggested by a recent pain study.)
The information is out here, so get out and look for it. Are you journalists or a mouthpiece for the Medical Industrial Complex?
I leave you the unbiased facts regarding chronic pain treatment with opioids and addiction from leading medical writer Maia Szalavitz:
http://blogs.scientificamerican.com/mind-guest-blog/opioid-addiction-is-a-huge-problem-but-pain-prescriptions-are-not-the-cause/
Please start reporting these facts.
Sincerely,
Kurt W.G. Matthies
thanks Kurt:)
Great work Dr. Fudin for throwing it down! Time is short and the need is great. It is past time!! Thank you, Kurt and Paul for saying it like it is! I agree, Dr. Forest Tennant MD, PhD and of course Dr. Fudin!! would be a great choice..In fact, after the show aired my good friend who is a nurse said…why wasn’t Dr. Tennant included?? Why was there no mention of genetic differences of metabolism of medications…? Even the VA is starting to use that information.
This blog brought me so much hope today… .let’s do a Town Hall on the Pain Epidemic ASAP!
We can no longer put up with being unheard and invisible…
It is time !!
You are the voice of those whom have none.
Your letter is wonderfully written. I’m so glad that you sent it to the CNN producers! I’m also glad that the National Pain Report is carrying it. People need to read it! Thank you so much!!
I am going to take a different approach here, my story in brief. I was diagnosed with RSD in 2001, it is THE highest pain dystrophy known and there is no cure. My son was only 4 years old, I was in my early thirties. It was difficult for me to be at peace taking the medication I needed, I had barely took aspirin to this point; however RSD is no joke. I bent and followed the pain clinics orders no matter what. There is NO pain relief for me, there is only dimming it down. After 2 years and being treated like I was a junkie every time I went for my medications, listening to how could I give my son the quality of life he deserved I have up. I informed my pain Dr that I would no longer take the narcotics and he fired me from treatment. I was offended but if I only knew! Now “junkie” that I was labeled as not only went to school full time, she worked full time AND raised her son. I was told I would be in a wheelchair within 2 years, but I had set my path.
Fast forward to 2015, I have worked full time all these years. I have fought back my pain taking only Ibuprofen 800. Quality of life you say…..I crawled to bathtub each morning because if I stood it was as if swords were jammed up my legs. Thirty minutes, 1600 in Ibuprofen and I faced my day. When I was done I limped on home, fed my child, spent an hour loving on him as I hid my misery. I then cried myself to sleep each night. Is that the tragedy? No, in being stigmatized I threw 15 years away gritting my teeth out of pride. Funny thing, my teeth are gone, RSD Killed the nerves to them and couldn’t wear a plate cause it clamps on which RSD won’t tolerate. I am laying here composing this as I just turned 49 and had a full left hip replacement. In 4 weeks I will receive 5 rods and mesh in the L2 to S2 portion of my spine, 6 weeks after I will have a full right hip replacement. Thank you all you folks who think pain is a joke, that those who suffer are simply looking for a high. That because our society is so ANTI RESPONSIBILITY that those who genuinely suffer are punished and degraded for those who are on the street abusing.
I stood proud and didn’t have to indure the barbs, the looks, the degradation each and every month, I made it mind over matter and forced my body into destruction. Is this truly how we are meant to survive? Live and let live, treat the real epidemic and issues. Until YOU can crawl in the shoes I did for 15 years because of judgement please do not judge or speak your nonsense. My Dr literally told me there was no rational reason that my body could walk, the pain and destruction are astronomical. So I did it YOUR way, I did it with out opiods, gee that worked out well!! Trust me when I say I would never put another human being through that road I chose, I CAN say that because I have walked it,
PS I am now on opiods like it or not and I will fly my story proud and loud to anyone whom chooses your rediculous point of view, I am proof you are wrong.
My letter to the producers…
Dear Ms. Stevenson and Ms. Adib:
I watched the Town Hall meeting about prescription pain medication causing addiction. Please forgive me for any typographical errors; I can no longer type.
A little about me. I’m 47 years old, have two amazing children (10 &12), and was diagnosed with Complex Regional Pain Syndrome over two years ago. This also is known as the suicide disease. Initially, my CRPS started in my right hand and spread up my arm and into the right side of my face. I broke my foot a couple of months later and it spread to both feet and up to my knees.
CRPS is not a new disease. It has been documented for over 150 years and is THE worst pain known. Please see the attached McGill Pain scale for reference. There is no cure for this disease. CRPS can spread to anywhere in the body there is a nerve, and even to internal organs.
There are no first-line medication for us to take and we are borrowing medications from other diseases/conditions. A few of those are Lyrica, neurontin (both of which stop synapses in the brain), Cymbalta (which now has class action law suits because of the withdrawal). And other antisiezure medications. This is not a cookie cutter disease; meaning what works for one may not work for the other. I am in pain 24/7/365.
A huge amount of physicians do not know about this disease and most times the information they have on it is outdated. There are millions of people who have this disease.
In order to effectively treat this disease, we need several different modalities. By effectively, I mean getting the pain level lower than a 5, on the traditional pain scale.
Those modalities include medicine, physical therapy, calmare, ketamine infusions, lidocaine infusions, spinal cord stimulators, pain pumps, etc. This also includes the use of opiate pain pills. They help bring the pain down; it does not get rid of it, but brings it down. Knowing I have to live in this pain for the rest of my life, I would rather have less pain which the opiates provide, than being in agony all the time without them, which is just plain cruel.
There are so many of us out there who have tried all other avenues and have no choice but to take pain meds. I know they do not want to have to take them, but if they want any sort of quality of life, they HAVE to.
I honestly feel horrible for the people who passed away or overdosed or had lasting problems. And I loved Prince. But my health should not be determined by a celebrity or other individuals.
It seems to me only the VERY extreme cases of abuse were presented and I’m very confident saying that is not the normal with the CRPS community.
A person taking 80 pain pills a day is not normal and only gives chronic pain patients the stigma of being addicts, which is so far from the truth.
Saying chronic pain patients are addicted to pain pills is like saying diabetics are addicted to insulin. They need that medicine in order to have any sort of life and so do we.
There is a check and balance in place for us with our pain management doctors. We also have to sign a pain contract. If we break the contract, we are discharged as a patient and I know I wouldn’t want that, so I follow the rules.
Also Dr. Drew mentioned hyperalgesia. A physician had published an article in Practical Pain Management stating he was able to check hormone levels and adjust them accordingly, and the patients did not have to increase their pain meds.
Also, the glial cell theory is still being studied and is not 100% yet.
There is so much more to this subject than was presented in this segment and this side needs to be told also.
Who is going to stand up for the CRPS community when they feel hope is gone and start killing themselves because of no relief from pain and no one to help?
Are we going to be the new addicts using what ever street drugs we can get our hands on?
There are already a lot of CRPS patients who cannot get pain medication because of the restrictions put in place by the government, and right now they are just suggestions and not rules. Can you imagine what it’s going to be like once these rules are set in place?
To understand part of the pain we feel, fill a bowl with ice water and kerp your foot or hand in it for 1 minute. Then take it out. That is what we feel every day, all day and night.
Until there is a cure for CRPS, please don’t take away something that is working.
Sincerely,
Pamela
wow-exactly how i feel in my 2PalmFire BurningHell 24/7/365 world as well Pamela- a 5 in pain as my zero is a vacation for my brain. lol you comment brought me to tears. about me recently. I had a med taken away after 9 years on it ( cold turkey 2 ) spent 11 months with a pain of 8 as my zero- w/a cpl dz 6’s. I know you know what I mean. May i share your post with my PCP and wall ? if I am allowed please 🙂
Let’s look at what is really going on. The mischaracterization of people in pain has grown to an epidemic and borders on mass hysteria. But there are medical descriptions for the societal illness that seem to have beset people like Sanjay Gupta, Anderson Cooper, Drew and the CNN producers and many others in mainstream medicine. To begin with, many of the symptoms described in the CNN and other anti-opioid documents are simply factitious when used to try to describe chronic pain patients. The comment posted in the National Pain Report original post of Mr Gileno’s article will present numerous comments that are true depictions of the lives and attributes of chronic pain patients. They are NOT addicts. They are overwhelmingly NOT abusers. But they are STIGMATIZED by FACTITIOUS SYMPTOMS and attributes wrongfully applied.
But then look at the people who suffer addiction. They are not even described by the CNN program or other anti opioid articles and programs. The anti-opioid crowd does a serious disservice to the people with addiction by diverting appropriate attention away from the treatment that is so sorely needed. Stigmatizing pain patients does nothing for meaningful treatment of addiction.
But DSM V has a category for this. Cleveland Clinic discusses it in an online article https://my.clevelandclinic.org/health/diseases_conditions/hic_An_Overview_of_Factitious_Disorders.
According to the Cleveland Clinic, “People with Factitious Disorder deliberately create or exaggerate symptoms of an illness”. And CNN and its producers and headliners and others are deliberately exaggerating and falsifying the real nature of the CLASS of people disabled by chronic severe pain. BUt they do not impose the exaggerated and falsified symptoms and attributes on themselves, the hallmark of classic Munchausen’s Syndrome. They do impose those falsified and exaggerated symptoms on others, thus meeting the criteria for a second form of Factitious Disorder: Factitious Disorder Imposed on Another was formerly called Factitious Disorder by Proxy or Munchausen Syndrome by Proxy. Individuals with this disorder produce or fabricate symptoms of illness in another under their care: ……..adults, disabled persons…..” I propose that the those zealots of anti-opioid hate are the ones suffering from an institutionalized and societal form of Factitious Disorder Imposed on Another.
In this form of Factitious Disorder, the propagator is the one with the illness, and the disabled person (those with intractable disabling chronic pain) are the victims.
Were this just a curiosity, it would be a good topic for casual and philosophic discussion. But the consequences are ones of inexcusable imposition of increased and unending torturous added pain and decreased participation in daily activity. Indeed the social media websites for support for chronic pain patients are seeing more and more “chatter” of people discussing suicide as a means of coping. The consequences of individual case Factitious Disorder Imposed on Another can lead to harm or even death of the victim at the hands of the propagator. For those with chronic pain, the victims of this real life SOCIETAL and INSTITUTIONALLY supported Factitious Disease Imposed on Another, will lead to harm in the form of added torturous pain and perhaps even more deaths by suicide.
Thank you Dr. Fudin! We need more level-headed physicians like you on board with our movement to prevent needless pain and suffering at the expense of the chronically pained. Buprenorpjhine in my mind is target no. 1…… I truly feel it is why this sudden change to ” everyone’s an addict ” and forgetting those who are truly suffering. If everyone who takes an opiate is stigmatized as an addict…. night pharmacy has a lot to GAIN in Buprenorpjhine sales, now the gold standard of opiate addiction treatment.
Thing is…. the chronically pained are not addicts. They actually have pain. However, they will be lumped in with the addicts and they will suffer and die from medical mismanagement! It’s a PROMISE. THERE IS NO LOW ENOUGH DOSE OF SUBUTEX TO TREAT A NORMAL (NON-ABUSING) PATIENT FOR PAIN. Not to mention that addiction treatment centers will refuse pain patients from treatment. .. cause they ARE NOT ADDICTS!