Opinion: CNN Stigmatizes Pain Patients

Opinion: CNN Stigmatizes Pain Patients

By Paul Gileno, Founder/President US Pain Foundation

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.

Carrie.Stevenson@turner.com

Desiree.Adib@turner.com

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Authored by: Paul Gileno

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I understand all too well everything you all have said here, and you have my greatest sympathies and support. I too, was appalled by CNN’s one-side reporting.

*** I’m absolutely behind any movement to mobilize and want to know what I can do?! ***

I am offering to create social media outreach, contact lawmakers, you name it. I have an extensive writing and business background. Just tell me who to contact and what you need. It is important we articulate our platform clearly, as the world is already painting us as drug-addled heroin addicts living off of Disability so we can avoid work. HA!.

I am trying to hold down a decent job while sneaking out to run to the damn pain doctor every 30 days, an hour away, praying the mom & pop pharmacist I go to will fill the order, and that I won’t get fired (I can’t tell my employer about this). I am college educated, with a lovely home and a child attending university. I am not some slacker trying to game the system.

It’s ridiculous, this life they have forced us to lead, when we are suffering and have done nothing to deserve it. I have been complying with all doctor’s orders – 100% – since I was first prescribed in 2010, which saved my life. A single mother of two young children who needed me, I’d already planned my exit…life dealing with numerous pain issues and one in particular, was just too horrible to go on.

*’You can find me on my blog, lingualnerveinjury.blogspot.com or my Facebook page Jane Fisher, Dental Disasters or our sister page, Dental Lingual Nerve Injury. I look forward to ‘meeting’ you.
Be well,
xo Jane

Cat

I followed your request to contact the two CNN producers referred to in this article and emailed both of them. I was so happy when a few days later Dr. Sanjay Gupta corrected his statement that opioids are the biggest cause of preventable deaths in the US. It’s a start. Thank you so much for helping pain patients help themselves.

Therese

I agree with your analysis of this article, Dennis J. Capolongo, and thank you for posting it.

Cynthia

Thanks for posting this article. I read it , am heartened by it, even feeling optimistic. It appears that calmer heads are prevailing. Hope so.

Doc Anonymous

THere is a lot of hyperbole flowing in the media and from many in the medical community. FACTS are hard to come by. The common perception is that the vast majority of drug overdose deaths stem from chronic pain patients, and that the way to stop the deaths is to stop the prescription opioids. Well here is a link to a presentation by the DEA in Pennsylvania that looks at some more meaningful FACTS about the nature of these deaths.

http://www.dea.gov/divisions/phi/2015/phi111715_attach.pdf

Note that HEROIN was present in 51% of those who died. Opioids, whether prescribed or illicitly obtained were present in only 1/3 of those who died from overdose. The FACTS, from the DEA itself, prove that those with chronic pain and the very small number of doctors who are willing or able to treat them are WRONGFULLY STIGMATIZED. And please note that patients are stigmatized and forced to go without medication while doctors are stigmatized and forced to go to prison.

As the DEA article states, you have to know where the problem is in order to combat the problem. Sadly too much of the hype from the upper echelon in the DEA fail to present the real FACTS. I submit that neither pain patients nor their doctors are dealing in heroin. The sad truth is that the blatant misrepresentation of the truth at the hands of the DEA and the news media and too many medical regulators and academicians will lead to perpetuation of and increase in needless deaths from the true culprits: HEROIN and ILLICITLY OBTAINED OPIOIDS!

Casey Garner

As others have said, THANK YOU FROM THE BOTTOM OF MY HEART FOR YOUR SUPPORT PAUL GILENO! I am a 28 year old disabled Navy veteran, currently at 90% disability rating. I suffer from fibromyalgia, chronic back pain, cystic fibrosis. Chronic migraines, PTSD and the list goes on. I was an engineer in the Navy who loved my job and wasn’t afraid to work, shortly after the birth of my son I began having horrible widespread pain and debilitating migraines without knowing the cause. After one year with my son I was evaluated for overseas assignment which declared me unfit for duty and unable to return to work. A short 30 days later I was ultimately discharged due to my physical limitations. Soon after I was officially diagnosed with fibromyalgia along other things, some listed above. Since then, 6years ago, I have fought to find my new normal as a civilian, wife, and mother. YOU would think that after being rated at 90% disabled (and that’s WITHOUT my fibromyalgia listed because I wasn’t officially diagnosed until after I submitted my claim to the VA, but I’m.currently working to add it) that I would have at least somewhat adequate health care and access to medication but sadly this is NOT the case. I am still treated like a drug seeking idiot who only imagins the pain. My VA doc is anti narcotics and constantly tells me I need to be more active. But after a nasty fall down the stairs in Jan, I severely bruised the bones in my lower back (can’t think of the none names right now) which he told me will be very painful and won’t heal for a minimum of 2yrs. Yet here I am without any medication other than gabapintin and no hope that I will receive any relief any time soon. I have tried to find a civilian doctor with no luck. I have gone to urgent care and the ER numerous times hoping for at the very least a referral for a doctor to no avail. I am terrified of the future and I feel as though I am more of a burden to my family. I am a stay at home mom of 2, one being mildly autistic (in a 2 story home) I get plenty of exercise just I’m everyday life, yet I do stretch, eat right, take vitamins, and do what extra cardio I possibly can. Today I can lovingly say that I have an AMAZING husband who understands and supports me This chronic pain has robbed me of so much in life, my husband and kids seem to be the only things that this disease has not taken from me and that is only by the grace of God and what little strength I have left. I am terrified of being my own advocate, speaking up and against doctors, our government, and these so called leaders due to the judgment and ridicule we already recieve simply by needing help and… Read more »

Gardiner Harris & Emmarie Huetteman of the NYT’s wrote a meaningful and well researched piece in today’s paper that attempts to strike a fair balance on this topic. Their facts and charts project a very grim picture of opiate abuse and death in the USA. Yet its clear they are advocating on behalf of all those who are having difficulty obtaining their meds despite their chronic pain condition… and although it may not be exactly what we advocates had hoped for in the media, I still feel their balance is well said and much appreciated. What do you think?

ACTIONS by CONGRESS on OPIOIDS HAVEN’T INCLUDED LIMITING THEM
By Gardiner Harris & Emmarie Huetteman May-18, 2016
LINK: http://www.nytimes.com/2016/05/19/us/politics/opioid-dea-addiction.html

Dennis J. Capolongo
Director / EDNC
Washington DC

Carolyn Cappitelli

Thank you so much for the information, and for caring about people. I was married for 17 years to a US Postal Worker. They don’t pay into Social Security, they have a private plan. I posted my email address and would love to have contact with you to
see what other options might be out there. I am in touch with other people here and we all feel lost and invisible. I could use advice and guidance from someone who knows the system. It is so easy to fall through the cracks. Each state has different rules. I would like to start an online support group so that we don’t feel so alone and scared. Living in pain isolates people and giving up is the end result without support.

BL

Carolyn Cappitelli, Thank you Sweetie. I apologize for the confusion. I have been using my phone more than usual for internet and sometimes I lose my place when there are a lot of replies.

I’m sure you know this, but just in case I want to share it. Work credits expire for SSDI but not for Social Security Retirement. There is SSI if your income is low enough. Also if you were married for at least 10 years and SSA finds you disabled you may be able to draw be able to draw benefits off of your ex-spouse. I have put a link below.

The quality of health care is better up north than it is down south for everyone. I live in Louisiana and Medicaid will not pay for Pain Management Drs. I have a friend that is receiving SSI and Medicaid due to disabilities. She had a good job for 20 yrs and then left the work force to have her family. When the children were all in school, she returned to the work force. Unfortunately several yrs after that she became unable to work due to physical disabilities and she and her husband divorced shortly after that. Several yrs ago she had to decide between pain management and a place to live and she chose pain management. The only ones that understood her decision were her friends that also suffer from it. She will be 65 soon and she will be eligible for Social Security Retirement and Medicare and then she will be able to afford both pain management and a place to live.

Disability Planner: Benefits For Your Divorced Spouse-
https://www.ssa.gov/planners/disability/dfamily3.html

Carolyn Cappitelli

Sharon, We all feel alone. Pain isolates us. Family and friends don’t understand when plans are cancelled at the last minute and the invitations stop coming. The phone stops ringing. Without the medicine we need to cope, depression takes over. My email address is hugsrus123@yahoo.com. I am alone, no family or friends anymore, and welcome contact with others in the same situation. We can comfort and support each other while this mess is sorted out and keep hope alive that the powers that be come to their senses about this. I hope Christine contacts one of us. I am worried about her. Hang in there, pain pal.

Sharon Dunbar

😱! I’m so sorry!! Feel no shame ever!!! Apply for social security! You’re in the same boat I’m in. So you’re not alone! I know you feel alone. I have nobody either. You can email me anytime you like!! Sharondunbar804@gmail.com

Carolyn Cappitelli

BL, I think you are confusing my comment and Christine’s. I am the one who moved to Florida and was shocked to find how horrible Medicaid is here. I had wonderful care in NY but the cold weather was a big migraine trigger. I get SSI because I stopped working to raise my kids and go to school to become certified in substance abuse. I was only 3 quarters short of qualifying for SSD…they only go back 10 years so all of my years of working before that did not count. I am waiting 5 months to see a Neurologist and still have 3 weeks to go. Moving back to NY is sounding better every day. I wish I could reach out to Christine. She is in my prayers and I am sending virtual hugs. Hang on, sweet one, you aren’t alone.

keisha

I never imagined at 33 years old that I’d be in chronic pain 24/7 and extremely limited in normal activities!! I do everything I can not to cause a flare. I do follow the protocol!! I’m bad depressed, anxious and can’t sleep so I just started meds for that! My pain meds help me tons but there is still pain. I would have never thought I wouldn’t be able to do things with my kids like I should be able to. I’ve been dealing with back pain since I was 25 years old. I was diagnosed with Degenerative Disk Disease in 2012. After my 2nd back surgery, a two level spine fusion and disk replacement, that I was diagnosed with “failed back surgery syndrome”. In 2013 I was diagnosed with Pseudotumor Cerebri and had a Lumbar Shunt placed in my spine to drain fluid. It failed so did the other lumbar and brain shunts. From February 2014 to May 2015 I had 19 surgical procedures including brain and back surgery. I caught staff infection after that and they had to open my back up again to clean it out. During that time i had about 30 lumbar punctures which they missed and hit nerves on most of them. It was a year after that I had my recent lumbar shunt replaced about 2 months ago. I’ve been through a great deal and I have more Scar Tissue than anyone can imagine that is pressing on my nerves and there is nothing they can do about it! Was officiall diagnosed with AA in 2015, really had it since the FBSS in 2012. Now you see why I’m in so much pain. I am trying to be strong but times I am weak. I am raising 3 kids ages 8, 10 and almost 13. I have to fight for them.

BL

Christine, call your insurance company and ask for a list of Pain Management Drs in your area. When you call them, do not ask if they prescribe a particular med. It may take you a few visits before they prescribe an opiate. Each dr has their own was of treating their patients. Rarely will you find a dr that will treat a patient based solely on what previous dr said. Be sure that the letter your dr wrote is with a copy of your medical records. You did not say how long ago you moved to Florida. If you have a current pcp, a new dr will want a copy of those medical records also. If it has been a while since you saw the dr in your previous state, those medical records and letter may not carry much, if any weight.

Being approved for SSA disability depends on your medical and on medical evidence, age, education, etc. Your non medical evidence needs to be consistent with your medical evidence. The details of how your impairments affect your ability to function needs to be in your medical and non medical evidence.

I am a little confused by your posts. You state that you are on Medicaid in Florida. Florida is not good health insurance when it comes to pain management. Also, Florida did not expand Medicaid. If you are receiving Medicaid in Florida and you don’t have any dependents, unless you are 65+ and receiving SSI due to be poor what you are saying regarding your history will raise flags to any dr or drs office. I apologize if I am misunderstanding.

This saddens me & angers me as well. I wish that I could somehow see this program or a clip from it, as I feel that that would be more conducive to me being able to accurately & properly respond in kind. I will probably see if there are any clips of it on YouTube or something. I’m so sick of this ****. I really thought that there might be better resources in Canada, but seeing one Canadian’s experience makes me feel wary now. As cannabis doesn’t work for me, I’ll have to soldier on & continue to get the meager prescriptions that my doctor (reluctantly) prescribes. I have arthritis & CFS. I’m slow to take action with most things b/c feeling enervated often keeps me from accomplishing much. I get about half the meds I need. My doc prescribes only 50 mg of tramadol twice a day, and I need twice that. So sometimes I have to skip doses in order to be able to double up on days when I really need it, like household chores & errands.

I’m so tired of living like this. I’m tired of even fighting & trying.

AYP

Today, president Obama and a recovering addict are live on Facebook to talk about opioid addiction and opioid-related deaths and overdoses. It is a very good time to write your personal story to the White House so that they do not continue to stigmatize or stereotype people who take opioids. Although I agree with their treatment-related bills in relation to opioid-addiction, there is a far bigger, national concern with suffering patients that they don’t seem to recognize as being further damaged by more restrictive laws. There are far more of us, the responsible chronic pain patients, than there are of addicts abusing/over-dosing on opioid prescriptions. As much as we are all so tired and in pain all the time, we’ve got to make this a priority before it ends up costing us even more time, money, & humiliation that it already does at the moment. We cannot continue to be “kicked while we are down” by the sensational media, over regulation/restrictions and the politicians. They won’t ever have the slightest clue and they will continue to make life even much more difficult if we don’t start coming together to fight for the rights to live a meaningful & purposeful life. This would mean a rally and/or March at the WH, which would be difficult for many of us. But it’s gotten to the point when we’ve been pushed into a corner without any type of advocacy. Our numbers are so much higher and underrepresented than the opioid overdosing/abuse.
There is a link to message the WH.

Angella anderson

This is very upsetting to me. I am 52 with fibromyalgia and arthritis in both knees, both good, both hands and my lower back. I am not on opioids as of yet, but when i go to the doctor for these problems, and they find out that i have fibro, and ptsd for childhood asexual abuse and abuse from my former marriage, they just see another woman with fibro and see someone seeking drugs or complaining about pain. I’m not even asking for opioids, but meds that i can get through the workday. I want to be productive and work and not cry when i get up in the morning. I want to be able to exercise, i want to not be depressed, and not be in pain all the time. I don’t want to be like my 75 year old mother who has had fibro since before they named fibro and is her doctors worst case he has ever seen. She is on several opioids several times per day and also now has parkinsons and beginnings of dementia. The pain changed her. She was not a nice person and was not my mother. Unfortunately, the meds are not always perfect either die to side effects as she has alot of health issues, colitis being one of them. But there has to be a way to help people who are in pain when shots do not work. For many people, me, included, cortisone shots, last as little as two weeks.
Insurance companies need to be more open to covering things like massage therapy, that is known to help things like fibromyalgia. And the need for medication may not be as necessary. Employers need to be more open to flex time for longer treatments such as massage or water therapy or non traditional therapies that take longer than a regular dr.appt. if they don’t want people popping pills them they are going to have to allow more time for different treatments.

Carolyn Cappitelli

Christine, how can I contact you? Are you on facebook? If so, please send friend request to me.

Christine

Yes I am an RN AND YES I HAVE KEPT 16 years of records with compliance. My pain dr from Maryland wrote a letter /referral stating this patient has “years” of compliance.. And the new dr I don’t even think they have read the severity of it?
As far as the Medicare and job I am single … My children are grown .. On their own and have no room…… I have no family …parents died in my 20’s …😔
I had been told years ago to collect disability but 1) I worked so hard to get my nursing … Oh god…. I not one to sit on my ass and collect disability I felt I could do this… I struggled at times but as I get older the harder it is…having a newer issue per EMG ….. C8 is. Damage causing nerve to have continious pain!!!!
I am at point I need disability however 😔it takes a year to ” possibly” go thru ! ? I have no other income I spent my retirement .. No savings R/t starting in a new state etc….. I really need. I feel angry insurance dictates what tests to run? I have good insurance! I need advice I need help what to do

Barbara Domer-Hostetler

I would LOVE to march on Washington about this, but I am far too disabled now to do things like that anymore. However, I did write to my congressman, and I encourage others to do the same. Writing to CNN will accomplish nothing.

In my letter, among the many things I wrote, I pointed out that there is obviously corruption in our government, and I asked if because of that, I lump him in with the “bad seeds” and automatically assume that he is corrupt as well? I pointed out that that is the equivalent of them assuming that all people on pain medication are addicts.

I just hope he reads it. Our government needs to know that they will just be creating another problem if they continue on their current path. One of two things will happen: chronic pain patients cut off from their medication will either commit suicide, or they will turn to illegal drugs, thus increasing the addiction rate.

I never thought my own government would do something so ignorant. I am SO frustrated!

Christine Hughes

Unfortunately, your CNN town hall event, only showed one side of pain medicine. I was actively planning my suicide due to debilitating, chronic and irreversible abdominal pain. It was narcotic pain relievers that saved my life. Please do those of us who use pain medicine responsibly and for life saving measures the simple favor of posting this. Respectfully, Anonymous

Wayne S. Swanson II

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[edit] 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 .… Read more »

Cynthia

Oh Carolyn…I hope very much that you will send your story, which is so incredible, so representative of what is happening, to all the powers that be. ESPECIALLY the two CNN producers mentioned in PAul’s post. YOU should be on their show. And Dr. Drew, with his irrational zeal and misplaced obsession, needs to hear and see many many stories like yours.

BL

Carolyn Cappitelli, if you were an RN and you’re disabled you should be receiving Medicare, if you have been disabled for more than 29 months. I have out a link below that will help you find a pain management dr in your area. Do you have a copy of your medical records when you go to see a new dr ? It may take a new dr a few visits before he will prescribe you hydrocodone or any other opiate. You will also have to sign a pain contract and take routine drug screens, among other things.

Medicare.Gov Physician Compare-
https://www.medicare.gov/physiciancompare/search.html

cynthia

Dr. Lewis, Thank you for posting the links to the bills. wonderful to have those. will read.

Carolyn Cappitelli

I am so upset and disappointed with CNN. While Dr Drew and the others on the panel said that they are not trying to get involved in the doctor/patient relationship when these drugs provide the only quality of life a responsible chronic pain patient has, they are still calling for these meds to be done away with. They are trying to put fear in the doctors, and it is working. I can no longer get my medicine. I was a nurse/substance abuse counselor, driving to work to meet clients and was hit head on by a drunk driver. I have a traumatic brain injury and chronic horrific migraines that put me in a dark room for days, curled up in a ball, begging God to take me. I know 5 people with cluster headaches and/or migraines who, in the last 8 months, took their own lives because they could not take the pain. No one even addressed that in the death statistics. While I was taking my meds as prescribed I had a life, volunteered at the battered women’s shelter and the local animal shelter and was able to go out before dark. Now the glare from the sun keeps me indoors, the nausea from the migraines caused me to lose weight (I weigh 90 pounds now) and every day is hell. I understand that there is a problem, but why should people like me have to suffer like this? I never abused or misused my Hydrocodone. I was careful and responsible. It helped when nothing else did, and my insurance won’t cover any alternative treatments such as nerve blocks, massage, Botox, acupuncture, etc. I am disabled and have to be on Medicaid. I even moved from NY to Florida because the cold weather triggered my migraines so I can honestly say that I have done everything right. I think you should do a follow up show addressing these issues. You have angered many many people and with good reason. Thank you for taking the time to read this. Carolyn Cappitelli

Debra Joy

I boycotted CNN a long time ago. I now boycott any and all “national news”. They’re all controlled by the federal government now. Sorry, but I no longer believe that this situation with chronic pain patients will ever change. I now have to constantly live with unrelenting pain every day. I, too, was sent to “pain management”. My daily dosage was immediately cut by two-thirds. It is my belief that the DEA and DOJ are perpetuating this problem. Just keep watching, reading. It will all come out one day that someone, somewhere, somehow, among these agencies, are raking in money, “drugs” for themselves. I say this because these agencies are NOT going after “the streets”. They’re going after the doctors, patients. Yes, I am a registered voter. So what? Voting is also “rigged”. I have fought, written letters that don’t get read, made phone calls that fall on deaf ears for 5 years now. My mother is in a local “warehouse for the elderly”. I am the ONE and ONLY person to make sure she receives some modicum of care. When I am no longer needed for this duty, I’m outta here. I give up. I honestly believe that when an American citizen is no longer able to be a “productive member of society”, however the federal government defines that, we become expendable. And sorry, but that IS NOT going to change. I’ve been at this for far too long. I am just too exhausted from constant pain, too sad for everything I’ve lost due to losing my health, too angry and thoroughly disgusted with what’s going on in many areas of our government, that I can’t fight anymore. The only exception is my mother. However, I run into walls there also. She is in pain, gets 1 Tylenol 3 at bedtime. At a “care plan” meeting last week, I asked if she could get 1 more per day with afternoon .25 xanax. Her pain increases as the day goes on. Their response: “Well, no, we don’t want to get her over medicated, and with pain medication, there is a high risk of addiction.” Really? Really? She is 84, was brutally, unmercifully, beaten for 17 years at the hands of her ex husband. Besides the pain, she also suffers from dementia pugilistica. She is there waiting to die. So ya see, even nursing homes no longer treat pain. I do wish everyone luck in this endeavor! I do! But, I’m out of it.

Carlos morales

I’m a cancer patient. The whole atmosphere regarding opioids, created for the most part by those who use them illegally, has created great pain and difficulties for me. My oncologist sends all their patients to a pain management Doctor as they are concerned with intrusive oversight by the dea and doj. The pain practice requires every patient to submit to UA, on demand pill counts, contracts signed as they fear the same intrusion by the government. These tests and even the pain doctor visits are often rejected by insurance as medically unnecessary. That means I have to pay.
Once I get an rx, I am lucky to find a pharmacy to fill it. The chains will outright lie and say no stock or that they do not take new patients. The reason, large fines imposed by the government on Walgreens, cvs etc. my choice is a mom and pop where the cost is double and not covered by insurance. A group of seriously ill people in pain are suffering because other people are breaking the law. It is not right.

Terri Lewis PhD

http://www.namsdl.org/library/06D102AD-E233-8F84-967C7258AADF08F4/

This link sends the reader to a list of bills pending before the House of Representatives and Senate. All focused on a variety of aspects of drug law, each person here should take the time to review them and contact your elected officials.

S. Browne

We are willing to go to DC Lets organize !

Donna Ratliff

Hi Paul, I just sent you an email. I hope you read it. It’s been years since we’ve spoke but I feel we need to again. If your willing? First, Thank you for getting this far to even get on CNN. As for everyone here telling your stories here? CNN is not going to read it here!! So, PLEASE send your stories to the email addresses below to tell the producers!! Scott Michaels who posted earlier has the right idea FOLKS! We’ve got to get to DC! And fast!! How many of you live not too far from there? And, who can go there? Remember this is your last chance for a life! So this is about it! Since Obama did his tricks! We’ve got to be seen and heard about how were being treated because we have Legitimate pain!!! The data written on every article is different. So much incorrect data. That is obe of wirst problems. Wete being combined with illegal drug users deaths! There’s only 2 million addicts in the US! Listen, I’m ALL for making the trip to Washington DC! I’m willing to GO! Paul Ryan blew my mind TODAY! Please?? Please Everyone, we’ve got call the speaker if house and possibly Nancy Pelosi and give them HELL about how OUR pain care is not the same as those addicted!! Not enough is Enough!! We have to do this in droves!!!Not enough is being done for us to be heard! Thanks to Paul Gileno for trying! Kudos to Paul!! When we call and go DC they need to know that We are tax paying citizens! Hopefully all registered VOTERS! Whenever you call and or if you go to our DC March? they have to know that we VOTE! Tell them that thousands of members of our groups will work to vote them all out for not listening the pain patients! They’re not being fair and all this extremely unbalanced! The best plan we can make that could happen the fastest? Is FOR Paul to get with me for a joined effort to do all this with ALL groups UNITED as ONE! But if I need to, I’m planning it in my group to make a day ASAP and have tons of us call and demand they postpone these bills until there’s a balanced bill for pain patients to be totally separate from the addiction issues to be treated separately! It also wouldn’t hurt for us to send certified letters with a small donation to all of the Presidential nominees. Tell them we’re livid and they’re going off half cocked to ruin the lives of many people. They have got to l ow what the consequences are going to be! I refuse to spend the rest are of My life in bed like grandmother did back to n the 70s and 80s! She died after spending at least years in bed. That’s NO LIFE!! We’re going in reverse PEOPLE! Pain care gas went so far Left that… Read more »

Bri

I am a chronic pain sufferer in Canada. When my pain exceeded OTC medications and my doctors were no help, I turned to using cannabis illegally rather than try to find a doctor who would help me with opiates, fearing I might become addicted or be cut off suddenly, or as has happened too often, have the doctor prescribing them suddenly leave the province and not find another like-minded doctor to replace them. Finding a doctor here to prescribe cannabis legally is always difficult and they charge prohibitive amounts of money in cash, which I cannot afford on disability. I didn’t see the CNN program last night but hearing about it angers me. I wasn’t aware that nearly one-third of the U.S. population is affected by this discriminatory abuse of chronic pain patients. Some of the comments I’ve read here make me sad and angry. Anyone not moved by them must be inhuman. The only group of people I can imagine to be profiting from the torture and inhuman suffering of chronic pain patients by brushing you all with the same “addict” brush is the addiction treatment industry. They are also the only group I can think of who could manage to be almost universally believed. The “war on drugs” is so ingrained in mainstream U.S. culture that anything sold as a remedy to drug addiction is seen as positive, when in fact, it may now be ruining lives in its search for new sources of profit. Consequently, this prevents the public from realizing that when the needs of legitimate pain patients aren’t met, this can actually lead to greater problems, such as law-abiding people turning to illegal drugs or illegal means of obtaining legal pain meds and/or formerly productive working people becoming bedridden and unable to care for their families (which can easily become still more cause for them to be mistaken for being addicts), and the devastating consequential loss of income and assets. At worst, this can lead to suicide when pain becomes unbearable. Pain on this level is simply beyond the ability, for those who have never experienced chronic severe pain, to even imagine. They cannot comprehend it and the insensitivity expressed by even family members can be utterly shocking in its coldness (I have been there, thanks to my mother and a daughter). The overall big picture, as I see it, is another story of greedy, wealthy people discovering a new group of vulnerable people to exploit and destroy with yet more income inequality. The greed and self-interest of these few is what keeps so many in poverty and national debts soaring, while the wealthy still find ways to conceal their wealth to avoid paying their fair share of taxes. This will never turn around as long as so many are robbed of their health, productivity, and their ability to be active, working citizens. As for that show last night, it sounds like everyone famous catered to their own egos while ignoring the only down-to-earth human… Read more »

Cynthia

Paul Gileno…do you have a link to the 18 bills congress is considering regarding pain meds? Or does anyone else in this loop? I’d sure like to see those….can do a search….but maybe someone has them all together. ??

Dooney

I had to leave work early today in tears after discussing this CNN fiasco with coworkers. I also relayed stories to them of a chronic pain forum I read. You know, people posting that they want to commit suicide, sharing their loneliness, despair, sadness, discrimination and the utter hell they go through. And I cried.
I am so angry I could spit nails about this one sided story. And so sad for all of us.

I listen to a talk radio station at work based in California. Dr Dr Drew has a 2 hour segment. He tells us listeners, yells actually, ALL OPIOIDS ARE BAD. They actually had his promo for a while saying the same. Not once has that station had a segment that told the perspective of a pain patient. It’s all about addiction, how evil pain pills are, and no one should take them.

I have tried to call in but maybe because I’m in Colorado I can’t get through.

I want to ask the great Dr Drew if he ever held a gun to his head because he had severe pain 24/7. Or if he ever thought he was dying of a heart attack /stroke because his pain was a 10/10 but it was actually a severe panic attack. Or if he ever prayed to God to please let him go because he was tired of the fight. Or if he ever thought I am not afraid of dying but of living.

And then I would tell him how opioids have now made my life livable. And you want to take that away from me ???

jess

God help us! Mass sucide is going to be the only option left to us, please some group with real power and not just pretty words help us PLEASE!

scott michaels

i wrote a email to the producer, cmon people send in letters.blow up her email with rebuttals to the production
THOSE IN NEW YORK SHOUD PICK A DAY AND PROTEST.IN FRONT OF THE CNN STUDIO

Amanda Perry

The open letter below was also emailed to both producers. Thank you for the article. Please correct my math on this if any of it is incorrect.

https://www.facebook.com/amanda.a.perry/posts/10153566267811074?pnref=story

BL

If 100 Million Americans contact CNN, that will make a difference, but they won’t. I doubt if even 1,000 or maybe not even 500 contact them. Because those being denied pain management are not in the majority. I know no one here agrees with this. But if all someone has to do is email CNN, what excuse do chronic pain patients have that are being denied pain management for not doing so ? They can do that from their beds. You have to speak directly to those that you want to hear you. If you do not, you will not be heard. Making excuses will not get you heard. One voice, a few hundred, a few thousand will not matter. A few million, might make a difference, but what about the rest of the 100 Million ? CNN nor anyone else is going to listen because they know they numbers are not there, or they would have heard them long before now. I do not understand why everyone is so surprised when the numbers just are not there.

Katherine Owen

Thank you so much for writing this article and providing the links to the producers. I too am a chronic pain patient and I am outraged by what is going on!

Nancy Fish

I do not want to live in a country where chronic pain patients are collateral damage for the war on drugs I am having a meeting with my senator Barbara Mkulkski May 18th. Hope she can help shed light on this issue

Steve P.

The time for talk is over and the time for the legal defense of our Constitutional right to life, liberty, and the pursuit of happiness has begun!

We will not be taken seriously as a community until we start taking the doctors, companies, organizations, and government agencies who are persecuting us to court, just as many other minority group have and are doing to great effect. Only when they are forced to defend their unconstitutional, inhumane, and sadistic actions in the courts will the truth be heard!

We have been reaching out to the media for years to no avail. If anything, the media has done more harm than good by twisting stories of pain and agony into stories of addiction. The media simply wishes to push the anti-opioid agenda of the current administration and its supporters, regardless of the lives it costs or who it harms.

Angel

Follow the money. We desperately need to know who is behind the anti opioid push what company and why that’s trying to turn the tide against opioids and pain patients. Until we know why and who we won’t be able to fight back.

Christine

I am feeling I have this voice but no one cares to ask what I feel? What we think? You know ” the people with real pain ” I am an RN FOR 16 years and My CRNP younger than my own daughters said and after only seeing me twice… Stated… Well we will be starting to decrease meds …. After 16 years of documented compliance she out of blue without reading my hart states…. “Yeap it’s a state requirement! “Omg I reared up .. My pain increased my BP INCREASED AND I SAID ….” How will I ever work ?” You don’t understand I will be bed ridden I have 1 more year to get daughter through college “! She looked me dead in the eye with a smirk and stated ” Ummm not my problem”! So many thoughts have crossed my head I’m scared and am losing faith to the hips ratio oath the belief I have the right to be pain free! What is wrong with this world today god?😢😞

Katie Sabo

This is what I wrote to the CNN producers. This is ridiculous.

100 million people suffer from chronic pain. 23 million have tried “illegal” drugs including marijuana and yet you use this statistic to say that 23 million people are addicted to drugs. These should be treated as separate issues but drug addiction and sensational stories like these are hurting people who are already in pain, who already have to travel long distances every month to get medication so that they can have some kind of quality of life, who already submit to invasive urine tests to make sure they are using their medication properly. What other kinds of patients have to do this?

Studies have shown that those in chronic pain do not experience tolerance to opioids and only need increasing doses if the disease that is causing the pain gets worse. Opioids do not make people who are in pain feel high. It just takes away the pain just enough so they can get out of bed.

The true epidemic is for the 100 million Americans in chronic pain being denied at an alarming speed the only medications that keep them functional and having some semblance of a normal life. The doctors who warn of the magic addiction of opiates have a conflict of interest in that they make their living off of treating addiction.

Enough of this one sided conversation. This is disgraceful and yellow journalism. IThe prescripton drug epidemic is not an epidemic, it’s hysteria. It’s a witch hunt. And it’s not based in science. What will it take until you and other media outlets listen to those who suffer in pain and tell our story? How many of us must die in pain or live out the rest of our lives in bed, curled up on the floor, attached to heating pads and ice packs until our story is worth telling?

Do the right thing and actually investigate what’s happening to the unheard 100 million Americans suffering every day, stigmatized and pushed aside by opiodphobia. We are all horrified by the torture of prisoners. This media treatment of those in chronic pain is no different and stories like yours are pushing money to the addiction recovery industry and torturing those who are truly suffering. Enough.

Katie Sabo
Kathleenheather@gmail.com
917-715-8890

Paul and others: a recent blog published on Scientific American can play a meaningful role in challenging the distortions of folks like Anderson Cooper and CNN. “Opioid Addiction Is a Huge Problem, but Pain Prescriptions Are Not the Cause”

http://blogs.scientificamerican.com/mind-guest-blog/opioid-addiction-is-a-huge-problem-but-pain-prescriptions-are-not-the-cause/

The US House and Senate are now moving toward approval of a multi agency Task Force to recommend best practice standards for opiate treatment of pain. The membership list of this proposed Task Force is heavily weighted with people whose focus is addiction. Chronic pain patients seem to be seriously under represented. Chronic pain patients and their Associations will need to lobby fiercely to be heard at all as this Task Force proceeds over the next year. Public meetings are a likely venue for speaking out. The National Pain Report and the US Pain Foundation will need to be there and be vocal.

Barb

Paul Gili no, was also so mad at CNN and Anderson Cooper. He and the show made people like me with chronic pain feel like a dirt bag.
And when he told that lady that she was only a low percent of the population, I was hot!!! And then he said the government wouldn’t take her medication away, that is complete BS, because they have taken mine away and I have complied with everything my Dr wanted me to do , from anew appt every 30 days, urine test, pill count etc, but still no more opioids. Had to be sent to a specialist, which took months…. please help us….

MichaelL

As another person in your situation, (both sides of pain management, extremely well educated) I was even more angry at the pain doctor that I was referred to. He claimed that he had exhausted all forms of treatment, for my pain and needed to put a dorsal column stimulator in. That was the first time that he ever saw me, and HE LIED! He tried nothing new. No ultrasound, acupuncture, micro-stimulation, TENS units, must I go on?! Add to that the I had a MRSA infection, from my first surgery for the broken back, so poorly treated that I developed a spinal abscess. I almost died! I could not understand, other than considering his greed, as a reason that I would want an invasive procedure, with that history! He finally allowed my PCP to treat me with tramadol. It helps me 70% of the time. Why should I have to suffer 30% of the time because I would not follow the, poorly thought out, recommendations of a greedy man! I think they would not care if suicide was the alternative that us chronic pain patients consider. Now I worry that the high dose of gabapentin (maximum allowed) could be deadly, in the end. But, it is the only way they will treat me!

LORRAINE LENCINA

Mr Gileno, thank you for bringing this issue to our attention, and for providing links to use to contact those CNN producers. I am on longterm opioids due to chronic pain from a hereditary condition, Ehlers Danlos Syndrome. I have posted a link to your article to a large online support group, asking that people reading this also contact those CNN producers as you have suggested. I asked that they also copy anything they write to their legislators.

The misinformation about chronic pain patients and the use of longterm opioids is getting worse and worse, and the level of hysteria on the subject seems to be growing. Some rather frightening legislation has already been passed, and other laws have been proposed that would actually LIMIT what you doctor can prescribe. The media over and over again quotes anti-opioid groups without vetting the information, which is so frequently distorted or outright incorrect. Starting with their statements that opioids “don’t work” longterm for chronic pain. Even the CDC in its guidelines admitted answers are not there due to lack of any consistent research, And in fact, there have been studies which indicate longterm opioids are helpful for some with chronic pain.
I hope people WILL write these producers as you have suggested. I will be doing so.

Wayne S. Swanson II

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… Read more »

Carol Hammond

I was listening to Fox Business Channel when Paul Ryan came on at 11:32 Washington DC Press Conference. He began talking about Opioid addiction and the CDC. He mentioned Susan Brooks and Bob Dole, authors of two of 18 bills all against pain patients. He said more Americans die every year from drug overdose than die in auto accidents.

I saw this link and it is very telling. All studies seemed to be within the government. I hope you can read all of this. http://www.cdc.gov/mmwr/volumes/65/rr/rr6501e1.htm