My Response to the CDC’s campaign to spend $4.8 Million to “Raise Awareness” about Prescription Opioid Abuse

My Response to the CDC’s campaign to spend $4.8 Million to “Raise Awareness” about Prescription Opioid Abuse

by Kristine (Krissy) Anderson

Kristine (Krissy) Anderson

Kristine (Krissy) Anderson

Editor’s Note: This article was written in response to the recent National Pain Report article, CDC Spending $4.8 Million to “Raise Awareness” about Prescription Opioid Abuse.

I would like the consulting agency, ICF, recently hired by the CDC, to know what the chronic pain community knows. I doubt their team for this project is going to turn to pain patients and advocates like us, who have worked so hard, and spent so many years, hours, and moments in pain, reading and researching, chatting with each other here and on Facebook groups, sharing our stories, knowledge and ideas, and the incredible frustrations we have that add to our anxieties and our physical and emotional pain. I would like them to know what the real statistics are on opioid use, and on death tolls, the number of times we read misquoted statistics and misguided studies, and what some of us have gone through because of the CDC’s efforts being geared toward addiction rather than the improvement of the lives of people in chronic, intractable pain.

I’d like ICF to know that the CDC has swayed the general public’s attitude and ignored the real reason opioids exist, and not that OUR medicine should be cut, taken away and patients and healthcare providers be blamed for the “opioid crisis.” There is a chronic pain crisis and I’ll say it more than once. We are not addicts.

I would like them to know about the doctors whose offices have been shut down, some arrested and so many who chose to stop treating patients on opioids and take down their own practices, their livelihoods, in fear of the DEA, because most, by the largest margin, were treating people the RIGHT way. And ICF should know about the large number of areas in our country that simply have no pain management physicians nor clinics anymore, so that patients are either completely isolated or have to travel far distances if they can even find a physician.

I would like them to know about the conflicts of interest in the panels and groups that were put together for the CDC’s guideline development. Do you think they will know what the secrets are?

I would like the agency to understand the knowledge and experiences of some of the great nurses, doctors and other healthcare people who read and comment here — what their opinions are and what facts they’ve shared. I’d like them to know the outcome — from our standpoint  — of the CDC’s big publicity push after the guidelines were released and what the press, country-wide, did in handing junior writers and writers who had no idea of what investigative journalism is, a press release on something as big as this. Hundreds and hundreds of articles were published written straight from the CDC’s press releases. How that hurt millions and millions of sick people, ICF may never know. (To the CDC, I’m sure the results of that publicity campaign was a huge success — to us it was a travesty.) Then we nearly laughed when articles came out saying the CDC couldn’t understand why they had such a low approval rating, so they hired an agency to fix that. I don’t have a clue whatever happened with that idea. Does anyone?

I would like this agency to have the list and links to these articles (which I have in a file) and I would like them to read the comments written after the articles where people like us, doctors and pharmacists, nurses and PA’s, writers and advocates made their cases. (And, yep, I’d like a part of that budget money for my time so I can get my electric wheelchair and go somewhere, have an integrative clinic to go to on my disability income, and for other readers to have a share so they can get proper treatment, without stigmatization and fear of being called an addict.) I’d like publishers like the National Pain Report to get a share for devoting their spare time away from regular jobs to working for patients. Yep, that would be nice, because when I owned my ad agency, I worked very hard at researching everything I could about every new client. If there was adversity, I addressed it.

I would like the agency to interview some of you and ask you what you’ve gone through with the changes your doctors had to make after the guidelines were written, like you who were sent straight into withdrawal because your medicine was cut off cold, you who went to your appointments only to find a note on the doctor’s office door saying the clinic was no longer in business or “no opioid medications will be prescribed here from now on.”  Stress furthers disease and pain. How did you do? There are so many stores. So many stories.

How sick are we of being told to use alternative therapies when we’ve lost everything and cannot afford them? I’d like ICF to see how many of us had the alternative therapies back when we first got sick or injured (and insurance paid for it), and the statistics on how many benefitted and how many got more injured from them, against how many improved and surpassed their pain. I’d like them to know those of us who wish not to live a good share of the time and why, and learn the stories of those who have taken their lives because one cannot live in high-impact pain all the time. It’s impossible. Some people committed suicide directly after the guidelines were published because they were afraid and felt their last days of hope were upon them.

Because of the CDC’s actions against people in pain, we are treated more and more like dirty addicts instead of patients. This has ballooned more so than before the guidelines were put in place and the publicity started. If only the publicity on the opioid problems addressed the simple fact that there are people who use these drugs as medicine and rightly so! But no. The articles didn’t talk about anyone who needs an opioid as a medicine, only that there is an abuse problem. All of the abuse doesn’t come from our pills in our legally-ladled bottles. Most all of it  comes from the streets. Was that mentioned? Sometimes, but the stats were all wrong. Really wrong!

Sometimes we have to remind people that we all “used to be somebody.” What is the most sad part of all this? I’d like them to know, because it’s how we feel when we’ve lost the love, respect and caring of family and friends. For the most part, they believed the CDC’s and FDA’s statistics, not the real ones. You see, one day a person has a brother, but because the publicity that has swarmed this earth, and it being all about the addicts and the illegal drugs or use of the drugs that are OUR medicines, that brother doesn’t understand us anymore, therefore have let us go. Family and friends don’t understand that our medicine is being stolen, misused and altered, but we are not addicts and we are not the problem. The “opioid epidemic” doesn’t address the “pain epidemic.” We are invisible.

We are people. We are the patients of life-long pain that doesn’t get any better and mostly gets worse. We have been through things most people will never be able to imagine. Some patients have overcome some of their obstacles, but most cannot, and we don’t have cures or alternatives. We’ve tried them already.

We have been set aside, our countless and tiring efforts have been ignored, our healthcare professionals have been slapped. Our lives have been zapped.

Finally, I’d like people like Ed Coghlan, CEO of this website, and his staff, who devote their time to research, activism, advocacy and publishing (there aren’t any other sites just like this) be awarded, invited to panels and discussions at the CDC and other platforms, and revered as pioneers in this field. There are others who work so hard to help their own families, such as Steve Ariens and many others, (pharmaciststeve.com link please) whose devotion to work for a better future is his testament to a chronically-ill and pained wife, who has spent years fighting pain and disease.

Let’s help ICF understand this new assignment in full. Let’s hope they remember why opioids are used and for whom they are intended. Let’s hope they don’t continue adding cars to the train and jump on the same bandwagon all the others have. Let’s help them know the truth.

Krissy Anderson is a retired on disability, and works when she can as a volunteer freelance researcher/writer. She contracted Histoplasmosis in the early 1980s, which eventually caused chronic illness and life-long pain. She was the owner of a successful, international marketing communications agency and a model. She was a hard-working fireball with the world at her feet.

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Authored by: Krissy Anderson

There are 43 comments for this article
  1. N ciancio at 10:24 pm

    Can we start a petition for the new president, Donald Trump? I believe if we let him know what Obama has done to us , as far as punishing us for the addicts and abusers ;he may do something. I’ve lost my job, and almost my husband of 25 years because of this insane cut from the cdc. I will file for unemployment and disability now.. I have no choice !!

  2. Pam Hawthorne at 3:52 pm

    Thank you, Krissy, for telling our story! Like you, I would love to have my productive life back! I have tried every alternative therapy there is & spent thousands of dollars which is not easy to do on Disability income. Now, all I can do, on days when I’m able to, is start & sign petitions to CDC, DEA, FDA, NIH, & DHHS; write emails & letters to state & federal legislators & officials, and comment on articles in an effort to make the voices of Chronic Pain Patients heard.

  3. Marlisa Griffith at 12:07 pm

    Thank you so much, Krissy for speaking out for our community. Your words are meaningful and pertinent! I hope the CDC and especially the ICF are listening and will answer your important questions! CDC & ICF, please pay attention. Our lives matter too.

  4. Bill at 7:03 am

    ….Just finished reading Krissy’s article, and ALL your comments! “Kricket” posted a link on >madinamerica.com<, under a story titled "Stop the War on Pain Patients"….
    The DEA has done, and continues to do, far more harm than good. That's true for BOTH "legal", AND "illegal" drugs. I wish I had more better answers, and solutions.
    DEA = Destroy Every(body&thing) American….
    ~also~
    DEA = Drug Express America
    Please enjoy my lame attempt at humor!

  5. Lisa-Diane Joseph at 4:35 am

    This is the first article I’ve found supporting the chronic pain community and our need for medication. This is a very well written article, and the comments following show just how desperate people with chronic pain are to be treated with respect and with appropriate medication. I have been in pain since childhood, mild and bearable. Then while in the military and attending journalism school I became very ill, probably a reaction to the many immunizations given in the normal course of being on an Army post. Then the first Gulf War broke out and we got more vaccinations. I was 35 years old and my life came to a screeching halt. I’ve been in moderate to severe pain now for 25 years, and I don’t mean sometimes, I mean 24/7, 365 days. I’ve been asking for a small increase in my dose for 10 years. But because of the “wisdom” of the FDA, DEA, CDC and VA my doctors are not allowed to increase my dose of opiods. So as my pain gets worse my dose is reduced, because they wanted to protect my liver and took some of the Tylenol out of the Vicodin, from 500 mg to 325 mg. So to get the same relief, not nearly, and get some sleep I take the extra Tylenol when I go to bed.
    When will the powers that be leave our meds alone and let our doctors take care of us the way they want to? I’ve had two doctors tell me they want to help me but their hands are tied by the regulations. One even told me a story of a patient of hers that accidentally overdosed, then refused to increase my dose for fear that would happen to me. I am very careful with my medications, but because someone else made a mistake I have to suffer. I thought medicine was supposed to be on a personal basis. Help us get the relief we need so we can try to be functioning people again, not dependents of a failing system.

  6. Carol at 5:56 pm

    Thank you for sharing what so many of us are going through.

  7. christine Hawkins at 5:56 pm

    Another issue is when you move in Florida from one County to another you have to find another doctor and pharmacy. I went to the same anesthesiologist he specialized in pain management. I also went to the same Pharmacy when I moved the doctors wanted you to fax all the information first from your pain management doctors and your surgeons I was turned down by 4 different doctors after I fax them every bit of 50 or 60 pages I sat and one doctor’s office for 4 hours and she stated at the end of the day when I was still there waiting that I was over-medicated and then she didn’t see any reason for me to be on that kind of pain medicine. It all depends on how a patient metabolizes medicine. So I was denied the medicine that I needed for the pain in my sciatica from a previous surgery that the surgeon left t disk fragmenta.And alot of sc was wrapped around the sciatic nerve root I was forced go to a doctor and get on Suboxone which doctors have found a way to make money off of that because they only accept cash first appointment. $350.00. When I asked for the walk out Iwas told it was cash only. I told them I would file it myself with my insurance company and they told me to go find another Doctor. Another scam just like the pill Mills !!cash only These Doctors are General Practionersthey take like A4 hour course which entitles them to be an expert on Suboxone. I cannot tell you the pain I suffered. I e blown L4 L5 SI three times each. Surgery on both. Only to be treated with disrespect..Every time I have a script filled I have the worse anxiety the medication that I need will not be available or it’s on back order

  8. LInda at 5:37 pm

    Awesome article! I urge all of u to read this! Thank you Krissy Anderson for saying what needs to be told over and over again! I only take Tramadol, that barely touches the pain but my Dr. Absolutely will not give me anything stronger! I suffer from RA and fibromyalgia.

  9. Constance at 5:17 pm

    Thanks SO much. I haven’t been able to come here for a while because of pain so horrendous that I can’t sleep, can’t eat (nothing stays down) and can’t think straight.
    I’m simply exhausted from this fight. I’ve lost my life and nobody can/will help.
    I feel myself slipping deeper into such a dark and hopeless place -tramadol doesn’t help & Gabapentin is making me feel so out of touch -like feeling drunk,which makes it impossible to function (I WOULD NEVER GET BEHIND THE WHEEL on this drug!)
    So, feeling pretty defeated.
    Thank you all! Sometimes when reading y’all’s comments, I feel like you’re telling MY story!

  10. diane at 1:12 pm

    Very well said. My daughter has Complex Regional Pain Syndrome. The most painful disease in medical history. No awareness no cure. Put the money toward research .

  11. Denise Tremaine at 12:33 pm

    I have been diagnosed with Fibromyalgia (Which does not exist in the minds of many, but that’s another story), and now have rheumatoid arthritis. This article was perfect. Family tries, but they just want mom back. Hubby is understanding, but still would like dinner cooked. Friends understand cancelling on them, for a bit – then disappear. What gets me the most upset about all of this is the depression that all of us fear – and there are many, many, many people who could not handle the pain, the lack of Dr.’s who understand, the limited number of pain meds that can be prescribed, the ignorance of so many – and they ended their life. They simply could not continue on any longer. I have been there. I am 56, and I don’t want the rest of my life to be like this. I used to be a mover and a shaker. I did great things. I was active. Now, the simple act of taking a shower is some days the extent of my day. We need more articles like this. We need more voices like all of the ones who responded to this article. We need more resources for the people at their limit, who don’t see the value of their life. They can’t speak – we need to be their voice. We need to speak for them. If you have not ever experienced long term pain, don’t put your restrictions on me. I was pleased to read this article today. I hope that others will share it. I just fear that the DEA, and other agencies still lump those of us with chronic pain with the junkies who steal to get their drugs. We are considered addicts. I have been called an addict by more Dr.’s than I can count, even though I have been on the same level of medication for 7 years. Please, let’s do something about this.

  12. christine Hawkins at 8:47 am

    I too have suffered through failed back surgries. I have had 4 series of steroid injections. One time the Doctor hit a nerve ,it took me five min to walk a cross the street the pain was that bad.Now I just had another disc laminectomy now for once and seven years my left leg doesn’t hurt on my sciatica now my right leg hurts and it hurts when I turn Bend walk ECT. The surgeon suggested I go for more injections. Steroids turn me into a monster my husband leaves for days at a time it’s that bad and they don’t help at all so the next step he said was a spinal fusion I’m just so sick and aggravated the pain you put your faith in these neurosurgeon that they don’t have all the answers and they can’t cure the pain. All I want to do is go back to wor k even part time.I can’t even do that. Every job I had I gave 100% Ind long run in collecting 35% of what I use to make.If it want for the pain meds. I couldn’t funtion. The government needs to put people in charge who have suffered and know what it’s like and not sit back on their Thrones and judge and tell us what we can and cannot do for pain the way I feel right now I’d like to gig everyone of them. Let them suffer for awhile and say take an alieve

  13. christine Hawkins at 8:31 am

    4Million on raising awareness? What about making the pharmaceutical companies spend the money on awareness and come up with another alternate medication rather than opioids nobody signs up for heroin when they’re in pain how stupid was the pharmaceutical companies coming up with that in the first place they should be held accountable

  14. Deb at 10:41 pm

    Very well said. Moved me to tears. Thank you!!

  15. Tricia Gaynor at 9:12 pm

    I am a survivor of my prescription cut off. It’s been 10 months, after 11 years on pain medication, I was cut off completely for 1 urinalysis that said the medication wasn’t in my system. I don’t know how this happened & it had never happened before but the thing I find so alarming is that my urinalysis was done on 3/18/2016 and I noticed the CDC letter online when I was trying to research how this could of happened, it was just by luck I stumbled upon it. Anyway I had to self detox on my own from the powerful pain medication that I was taking for 12 years and I felt like dying, well obviously you can probably tell i was going through withdrawals because I never spent a day with out them. Anyway finally after a horrible 10 months of constant agonizing pain, & countless doctors not believing me I’ve found a doctor willing to believe me and take a chance on me. As lucky as I am I’m petrified because I don’t trust the system anymore I find myself a nervous wreck with anxiety now so afraid of this happening again even though I was always so careful & followed all my doctors orders & did everything exactly right & never abused any medication in my life nor ever failed a urinalysis before. I’m so afraid of this happening again. Thanks for your support and for what you are doing. If I can help in any way please contact me
    Patricia Gaynor

  16. Jade at 8:45 pm

    Spot on Krissy. I lost a 42,500 a year job thay I loved because I could no longer perform my duties, my new husband because I couldn’t be the wife he needed. I lost my family because they don’t understand and they believe the hype that noone is in pain they are just “addicts”. Friends arw gone because they think u should just push through the pain, ya right, this pain is not something you can push through. It has you, you are defeated. At this point with this condition the only way to amy quality of life is medication management. I was pursuing my bachelor degree , but could no longer concentrate and had to drop out Jr. Year. I never did a narcotic in my life until a back injury with fusion surgery that resulted in CRPS in my right leg. It has since spread to the other leg, abdomen and arm. This pain is unbearable and I am under treated amd have no quality of life at 49. My doctor stated he won’t increase my dose because of all the overdoses in the area. What a joke. So what does that have to do woth me? Doesnt matter!!! Everyone is an addict or a dealer amd a potentional overdose. Well thay is yoir job to know ypir patient. The new clinic I went to today said, sorry we can’t help you, you live an hour away and not in our County. We dont feel comfortable. This is a joke. All you addicts have ruined it for us who are lying in bed in co nstant agony and just want some relief. Yes we want pain medication. Becuz we NEED IT TO WALK, TO LIVE, NOT FOR A HIGH BECAUSE WE CAN’T STAND OUR LIFE! WE HAD A LIFE! !! AND it has been taken from us. We were the ones paying taxes working making a difference. We wernt searching for a high. .I wirked for 31 years. 20 in a hospital as a Unit Secretary and 11 as a Staff assistant in the Healthcare Unit in corrections…I’m sorry that you have a drug problem and you need help and care. Well I need help and car., But because of your abuse and your addiction to be buzzed, we are treated with a paint brush and put in your category. When we don’t want to be high we want relief of agony. The studies have shown the chronic pain patient does not become an addict. Physically dependent, Yes. Dependent to get out of bed amd have somewhat of a life? YES! A competent pain doctor can tell who the pain patients are and who the seekers are. But we are getting punished because of this epidemic. I was told in ER once, well I cant treat your chronic pain in the er amymore, because drug overdoses have surpassed car accidents now. Really? RUKM?? Im really really sorry. I dont know who and how that hapoened. Maybe loss of jobs and sending them alloverseas had a lil somethibg to do woth men women amd the loss of livlihood. And desparation and need to escape the life and sell drugs to make money I DONT KNOW!!! BUT,Whoever is supplying these drugs DOCTORS who are doing the prescribing to patients who dont need them and sell them. These doctors have to know which patients are not taking the meds. And let me tell you a CRPS patient wouldn’t sell his pills because he needs every last one of them to survive. And now we can’t even be comforted now? While they are raising the awareness of the drug addict, please, please educate your doctor’s on the patients who have to have them to live. My doctor told me the he gets emails from the Dea saying his opioid patients are going to have to start picking up scripts weekly. What a joke, I’m lucky to leave the house once a month. Have these doctors forgot what real suffering is. Didnt they go to school to save lives of theor patients? To prolong life? To relieve human suffering?The greed and love of money has surpassed any human decency and care for human suffering. This has become my reality. Isn’t the first line of the hipacratic oath”Shall do no harm”?? Well, when you purposely withhold medication to a know chronic/intractable pain patient letting him walkwheeled out of your office without proper treatment a violation of the oath? The first line? Your cycisism amd skepticism and inability to differentiate the addict from the chronic pain patient based on history, diagnosis, and evaluation then you are in the wrong field. A known longterm suffering patient who has been diagnosed for years and you treat that person as though they are there for a “high” or “a threat to your DEA number taken away”!!! Please change fields! I predict many chronically and intractable unmanageded pain patients will be taking their own lives as the “forgotten” patient just gives up., And who’s gonna spread awareness then? Who’s gonna be their voice? Right: nobody!!!! Because you already have us in your “addict” category anyway, so it won’t matter. The world has gone mad, inhumane, unethical amd JUST SAD!

  17. Tim Mason at 5:10 pm

    Dave, I visited that page last year and copied and pasted entire false studies in there for them to chew on. I gave them several salvos of poorly written non peer reviewed garbage they published.
    Go for it.

  18. Tim Mason at 5:05 pm

    I don’t think the surgeon general is a surgeon at all. He was or is a women’s health doctor. just happed to be one of Obama’s chosen (previous green card holder that joined the navy).
    His tour as surgeon general is about over.

  19. Julie Dawson at 4:58 pm

    Thank you so much.
    Krissy, you are inspiring and it’s a relief to here your words.
    I’m 50 and I feel like I can’t be 60 cause by then I would of had enough pain.
    I try my best but am looked at by family and friends as an actress of sorts as I do a lot of oohs and arrrs to get into and out of a chair.
    Unless you are in chronic pain you don’t understand the every minute of every day battle.

  20. Dave at 3:39 pm

    We should make frequent visits to ICF’s facebook page. Explain to the company in the comments section and share it with all your friends. Give the company a taste of the bitter medicine it is dishing out with its dispersal of CDC propaganda. It has been released that one of the architects of this eugenics program, CDC director Tom Frieden is resigning in a week. When is the surgeon general next? They create this mess and will probably get a high level position with the big rehab market.

  21. Jean Price at 1:55 pm

    I agree whole heartedly that this article spells out what’s happening in the realm of pain care and what’s happening to people who live with daily pain! An excellent piece, well stated and comprehensive.

    And…YES, it would be wonderful for the ICF agency to know ALL of what’s so well outlined in Krissy’s article…IF, AND it’s a BIG IF…THIS WOULD MAKE A DIFFERENCE FOR THEM, AND ULTIMATELY MAKE A DIFFERENCE FOR US!!

    YET, we are NOT their client, the CDC is. And I’m guessing their MAIN job is to KEEP THEIR CLIENT HAPPY…and fulfill their client’s directive…meaning they will likely be churning out more of the same deceitful rhetoric and fraudulent claims as we’ve seen for the last several years concerning the “demon opioid pain medications”! PLUS THEY’LL BE LENDING THEIR OWN EXPERTISE AND CREDIBILITY TO IT!! (Groan! Sigh!)

    If ICF researches this issue at all from an UNBIASED point of view, they’d easily see the problems they are up against in working for the CDC and trying to promote stopping the use of opioid pain medication across our country! And saying it’s a way to stop heroin use and overdoses would have to stick in their throats…if they have any common sense at all! They would then have to promote incorrect data, be advising doctors to adapt inhumane and ineffective treatment regimes, and know in their hearts this was abusive and wrong!! AND KILLING PEOPLE! That’s IF they care! If they keep from JOINING the CDC’s witch hunt themselves!!

    Looking at this realistically, can we expect them to help us? To change the minds of those in power at the CDC? To expose the CDC’s wrongdoing and their greed!? Can we expect them to go against the current mindset of the Senate, the DEA, state governors, the Surgeon General, or even one of their own (with Sanjay Gupta as ICF’s executive Vice President)? And more importantly…to go against their client?! I’m not optimistic that they will be any kind of help or resource FOR US…unless there are some very compassionate, intelligent emoloyees who dig into this enough to find out what the real issues are! Even at that, they’d likely have to turn down the job because the CDC isn’t interested in correcting themselves!! Their only achieved goals so far have been increasing the abundance of street drugs coming in, and potentially increasing the use of street drugs by denying pain medication to people with legitimate daily, life limiting and life threatening pain! Plus they have reduced the number of those in pain by suicide due to unbearable suffering! And oh yes, they’ve ruined some doctor’s careers and shut down once available pain care clinics/resources!

    As good as this article is, unless we can in someway flood the ICF with this information and a firm plea to not work against us…AND THEY AGREE…I think their role with the CDC will be one more nail in our collective coffin! (And I say all this as a usually pretty optimistic person! Yet also a realist!). I’m so hoping I’m wrong!

  22. POPS at 1:17 pm

    Well said Krissy and thanks,

    As I have said many times in the past. The CDC, DEA, FDA and the host of other alphabetic idiotic bureaucracies are abusing their power and chronic pain sufferers to help government funded businesses like Phoenix House, profit. Not to mention the justice system and prisons. This Alphabet Soup Group filled with uncompassionate bureaucrats care absolutely nothing about the tens of millions of people they are negatively effecting with their actions. That includes people suffering from addictive personality disorder, prisoners serving time for Marijuana possession, doctors who prescribe narcotic medications and of course the entire chronic pain community.
    Approximately one third of our country is being openly abused by these agencies and the National news media is more than happy to help them by only reporting their negative propaganda. Then, they ignore our letters, emails and petitions, writing us all off as if we are nothing but addicts craving our opiates. The news media reports overdose deaths by saying the person who died had struggled with addiction for years, or they put dependency in the same category as addiction. It’s all a popularity contest and right now, the chronic pain community is losing big time. Until the entire chronic pain community and their families REVOLT openly and tactfully, these bureaucrats will continue to smack us around like a bunch of abused spouses.

  23. connie at 1:11 pm

    I wish I had your way with words! You said it all so well. How do we get the anti-opiate nazis to listen? Thank you Krissy!

  24. Scott at 1:07 pm

    Krissy,
    Your article is SPOT ON! I wake up everyday and read what our government agencies our doing to the chronically ill patients. I am still in disbelief.
    I did not ask for a inexperienced anthesiolgist giving me 3 epidurals within 10 minutes without the use of a floroscopy. Then he had the nerve to scream at me for not laying still. Third attempt with needle caused an electrical shock that started at my hip and went out my toes that lifted my leg off the table causing me to urinate myself, then screamed at again by anthesiolgist for moving. Ended up in hospital with. Spinal headache, chest pain, unable to walk more than 10 ft for 2 weeks. I was one day away from being transfered out of that hospital to another hospital for a rare nerve patch operation. 18 years later I still suffer from arachnoiditis, and I lost my job, ended up on disability. Words can’t describe how my life has been turned upside down. FDA does not authorize epidurals to this day, but why does the CDC want us to go to pain clinics for more epidurals. STRANGE?
    Or to watch my 14 year old son be put on Acutane for acne for 6 months at 60 mg a day for 6 months which caused him to have IBD, arthritis in both shoulders, both wrist and right hand. To have watched him get a colonoscopy at 18 years old. Again, another drug the FDA authorised for teenagers that ws originally manufactured as a chemo drug for brain cancer. But yet, the CDC and FDA have
    Keep these drugs on the market ( by the way, side effects including suicide) from generic Accutane have injured more teenagers than car accidents.

    Then, you have patients that suffer in pain daily due to our government agencies having there hands in both cookie jars of FDA and the CDC with people switching from lobbiSt to decision makers for our government agencies. Follow the money!
    Now, we have once hard working Americans that can’t work and suffer in chronic pain daily that are being treated like the scum of the earth all due money over ignorance. Shame on you CDC!
    WE should be more concerned how herion is getting into this country with ease. Who is behind this. That is where the money needs to go, shut off drug dealers. May God help us!

  25. lisa murphy at 12:01 pm

    Is there any way you might be able to create a change.org petition to send to the CDC and President Obama before he leaves office?
    I don’t have the social media following to make an impact.
    My medication has been cut down as many others, to the point that I cannot function as I once did.
    I have been a chronic pain patient for 25 years, and tried a page full of medications, and alternate therapies before going on opiates. There are a small subset of patients that only respond to this medication.
    I am furious that myself, and others like me have to suffer in pain for the actions of other people. We should not be punished and be made to suffer in pain needlessly.
    Addicts who want to get high will find a way regardless if they can get opiates or not.
    And what about alcohol and tobacco? They are both legal, and kill many more people a year, and for what medical purpose are these to be used for?
    Pain medication used correctly by a pain management doctor increases the quality of a chronic pain person’s life. We don’t get high off of them, we just have our pain blocked when prescribed at the correct dose.
    Some people who otherwise would not be able to work are able to work due to proper pain management, and lead a more active life and be a part of the community.

  26. Anne Fuqua at 11:30 am

    CORRECTION:

    I found out that the SANJAY GUPTA who is Executive VP of ICF is NOT the same person as DR. SANJAY GUPTA, the neurosurgeon. No matter how much they look alike.

  27. Christine jacoby at 11:06 am

    Just wanted you to know I have also emailed the ICF with my message of pain being undertreated and ignored.
    Am sure not as thorough as yours but I am in pain about to lose life because of it.
    Let’s pray the ICF does some research before launching their opioid abuse campaign.
    They need to campaign for chronic pain patients be heard and save their lives.

  28. Alice Pandolfi at 10:15 am

    Bravo! after 15 years on opiods etc, spinal surgery has proven to relive the most awful of the pain. Now I am weaning meds and feeling good. As an RN, where has out hearts and brains gone? Stop the gangs, fraudulent docs and the underworld from their blame the drug abuse, NOT the victims or genuine uncontrolled pain.

  29. Jerry at 10:03 am

    Thank you, What an excellent article. You said what so many of us know and live with.

  30. Tim Mason at 9:52 am

    Hi Krissy, You are right. It is time to “take the gloves off” in our approach. Ask these people for their credentials and the number of years of experience in their field. These questions will show that the agencies have relatively young executives (25-34) just promoted to a job that they have no experience in. Furthermore, this is the generation that is “chemophobic”. I just saw a webinar put on by the American Chemical Society (ACS) about chemophobia and you could replace the word chemical with opioid and still give the presentation. “How we got here and what to do about it.” There have been similar phobias in history and there has been a specific cause for them. DDT use and Bhopal India and GMO foods are the big causes of chemophobia. Domestic Terrorism is the cause of firearm phobia. Many historical accounts are given in the webinar and how these things fester out of control.
    You are dead on in your suspects too. Media. It’s news worthy!
    If for some reason many of the terrorists now wore hats like you are wearing in your mug shot up there, I would be scared of you.
    Here is the mix. Its the young + naïve + no practical experience with something that makes things bad.
    Every apple off a tree is not fit to eat. Some have resident worms and some are rotten. No need to cut the tree down! You don’t ban gasoline to stop drunk driving!
    More after page 2.

  31. Anne Fuqua at 9:38 am

    Fellow FFPCAN member, Tracy Rogers and I have just found out that the Executive VP of ICF is none other than Sanjay Gupta!

  32. Kym Russell at 9:24 am

    Thank you! Well said. Those of us who bravely live with relentless chronic pain are being physically and emotionally crippled and unfairly stigmatized wherever we go because we are viciously mis-labelled by CDC and its patient crushing misinformation campaign.

    Like the author, my early on experience with chronic pain, I spent my savings on alternative therapies, saw integrative doctors, nutritonists and on and on. All the savings are gone after a long, successful career. I’m living in poverty and in pain. Not because any lack of effort on my part but because of a medical system paralyzed by CDC. I’ve have painful out-patient procedures in pain management clinics that worsened my condition for months — yet, was not offered relief to aid in recovery.

    Chronic pain creates a downward spiral: it cause changes in the brain and nervous system so that cognitive abilities in pain patients, which are already overwhelmed by constant pain messages, worsens and diminish our ability to speak for ourselves, begin to regain health, rebuild relationships lost due to the scare tactics of using “painkillers” that CDC communicates and our loved ones believe.

    CDC is spending millions to spread Fake News rather than acknowledge the needs and rights of pain patients.

  33. Carole Porter at 7:54 am

    And Dear Lord don’t we get weary!!

  34. Tim at 7:50 am

    I have NEVER heard a BETTER narrative of the life of a chronic pain patient. Krissy Anderson has nailed the physical and mental life…….of a person, an individual, in chronic pain. Well stated, that we have already tried “alternative treatments” for pain management. Those of us who have been candidates for surgery……..have already had surgery. Those of us who are not candidates for surgery have been down the trail of…. “least invasive medication first”. Some of us are even born into life with disabling, crippling, uncontrollable pain. It has been a way of life. It doesn’t get…..better. I ask why, is the CDC making the one life we have more difficicult? There are many different conditions lesding to continuous disabling pain. Those who have no pain, or those who can control pain without “jumping through hoops” and the stigma of opioid medication use………count your blessings.
    Those who are in policy making. Why are you attempting to further harm those who have a treatable, painful condition? You must realize the last avenue of a normalized life includes treatment with opioids? Regulated, professionally prescribed, medically engineered opioid TREATMENT for those STILL trying to be a part of humanity.
    Those of us who are using opioid medication in the attempt to ease suffering because of a MEDICAL condition ARE different “minded” than those who CHOOSE to abuse opioids whether prescribed or illicit! We, the chronic pain patients are a totally, different, statistical group of individuals and should not be represented in the afore mentioned group of people.
    Different medical conditions call for different treatments. There are physical conditions and there are physcological conditions. The two CAN intertwine but, call for entirely different methods of treatment. NEVER should the two conditions be added together to conclude a statistical value that can impact either in a negative fashion. There are people that choose to use opioids for recreational use. There are those that were treated with opioid medication but, can not be entirely blamed for their addiction. However, I do not know of even ONE chronic pain patient that chose to be in disabling, continuous, life altering pain!
    If you have not walked in someone elses shoes, how can you “judge” how difficult the traveling is?
    Again I say, WELL STATED Krissy Anderson. I continue to hope that understanding, reality, and consequence, is in the vocabulary of those who are appointed to use superior policy making for the good of ALL. Not to make policy to achieve a more acceptable statistic. If you are going to base policy on statistics, at least accept honest, accurate, information in the compilation of those statistics! Thanks, Krissy Anderson.

  35. Laurie at 6:55 am

    Bravo Kristine (Krissy) Anderson. Standing ovation to you for having a voice for all of us who suffer with chronic pain daily and use our medications for the intended reason. We are not addicts so thank you for voicing your opinion and setting the majority of us in the class of opioid medication users that need our medications to function daily. BRAVO!!!!

  36. Danny at 5:54 am

    Bravo! Well said, Krissy! I want to share the 2 newest developments in my so-called life. First, after an MRI, my doctor compared my brain to the NFL players who suffered brain injuries while playing football, but have committed suicide after retirement because of the constant severe head pain, depression and other issues that come with brain injuries. (I was electrocuted. “Connected” to low voltage for 12-15 minutes.) Granted, my doctor said that an MRI cannot show such damage in the brain; only an autopsy can do that. But he’s been my pain management neuropsychiatrist for 15 years now and has followed the studies conducted on these poor men since it began. He even said to me “I’m very surprised that you’ve been able to live with this for 26 years while many of them couldn’t make it for 10 years”.

    The second thing has to do with one of our favorite subjects: insurance companies. I learned from my pharmacist (a GREAT man!) that he’d lost about $2,000 on one of my prescriptions because, starting back in September, my insurance company suddenly started reducing the amount of money they will pay him for this specific medication. (I will not be more specific because I’m honestly afraid that “Big Brother” might be monitoring this site.) He thought there was simply a miscommunication of some kind, so he didn’t say anything right away. After all, I’ve been prescribed this same medication for 25 years. In December, I was finally informed of the situation. I now have to pay over $500 each month to get my medicine. And, I can’t officially appeal it with the insurance company because, technically, I shouldn’t be paying that money. Either the pharmacist had to take the loss or stop filling the prescription. He could get in serious trouble if it ever came to light that he was “allowing” me to pay the additional costs. While I cannot afford this extra monthly expense while on disability, I also can’t live without this medicine. Yes, it’s a very strong opioid, but it’s allowed me to live much longer than I ever imagined. How can insurance companies get away with such sudden, arbitrary actions?! I know many people hate “Big Pharma”, but I was working for one of those companies when my accident occurred. It’s “Big Insurance” that’s the real Evil in this country, along with the CDC, FDA and DEA. I don’t know how much longer I’ll be able to have my medication. But, when the day comes that I don’t have it, I don’t think I’ll be around to comment on National Pain Report anymore.

  37. JoDawn at 5:32 am

    Yes! Yes! Yes!

    I’d also like them to know the number of people dealing with a pain dr that could care less, but are frightened to either speak out or try to find another dr, because at least having one is better than nothing…right?
    We. Need. Help.

    Jodawn

  38. Anne Fuqua at 4:34 am

    Great idea as usual Krissy! We should definitely get patients to write and let them know about all the things that CDC most definitely omitted!

  39. Mark Ibsen at 4:26 am

    Thank you Krissy for yet another well written, cogent article, submitted into a discourse that is not listening.
    Very polite.
    Sensible.
    Well referenced.

    We are living in the post-fact world.
    Like Alice, we are down the rabbit hole where nothing makes any sense.
    In a culture where facts don’t even matter to scientist types,
    And
    Meanwhile
    People die of a preventable suicide.
    Insanity.
    God bless you, Ed Coghlan, Steve Ariens,
    Tina Petrova
    Dr Forrest Tennant
    All the patients who have fought for their lives.

  40. TOPDOG at 4:16 am

    This is no more than pro-drug-war propaganda. I object to publicly funding these projects that are in turn used against the American people. All drug war funding needs to be cut.Including their massive propaganda machine.

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