NIH Pain Draft Report—Have You Commented?

NIH Pain Draft Report—Have You Commented?

The U.S. Pain Foundation tweeted yesterday that only 1100 people have thus far commented on the National Institutes of Health draft report on the treatment of chronic pain.

The Pain Management Best Practices Inter-Agency Task Force was established to propose updates to best practices and issue recommendations that address gaps or inconsistencies for managing chronic and acute pain. The U.S. Department of Health and Human Services is overseeing this effort with the U.S. Department of Veterans Affairs and U.S. Department of Defense.

The draft report was issued on December 28 and the federal government is giving individuals until April 1st to comment.

In a recent article in the National Pain Report by Richard “Red” Lawhern, Ph.D., spoke to some of the issues he recommends pain patients consider before commenting.

The report, which you can read here, is 91 pages long and is worth the read if you have the time.

Here’s how the U.S. Pain Foundation summarized the report:

  1. Pain is an enormous public health problem with profound individual and societal consequences
  2. Successful management of pain requires individualization of care in the selection of therapies tried, in the consideration of risks and benefits of therapies, in the duration of treatment, in the optimal dosing of medication and so on.
  3. Best practice in pain management is achieved through a multi-modal, multidisciplinary, integrated model of care including a full range of pharmacological and non-pharmacological treatments.
  4. Stigma is a major barrier to treatment, so it is critical to provide education and awareness of the underlying disease process of pain and to provide empathy and a nonjudgmental approach to treatment.
  5. Public, patient, and provider education is critical to the delivery of effective, patient-centered pain management and is necessary for optimizing patient outcomes.
  6. The risk-benefit balance for opioid management must be considered on an individual basis as there is wide variation in factors that affect the optimal dose of opioids.

Here’s the best way to submit your comments.

Let us know if you’re going to comment and what you will say.

Follow on Twitter:

@NatPainReport

@edcoghlan

@US_Pain

Authored by: Ed Coghlan

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Mavis Johnson

People on here need to look up the definition of Socialism. The sitution we are all in, is due to Market Based Healthcare. It was profitable for the pharma industry to market expensive, name brand opiates, to an expanded market. They made so much money they undermined the regualtory agencies, and our federal government. 20 years later, they still have not come up with anything sensible. There is money to be made, the FDA brought in Industry Insiders to deal with this issue. They ignored the unintended consequences, while they help pharma by demeaning people with pain. What we have here is Corporate Fascism.

They knew about Oxycontin back in 2000, yet they allowed them to continue marketing their product. The mass media is still misleading people about this problem, they rarely mention people with pain, except to desaparge them or blame them for run away corporate misbehavior. The hospital and insurance industries saw a profit here too. They could easly deny care to certian people, or refuse to pay for certain claims. They deliberately stigmatized and blamed people with pain, while refusing to treat addiction.

The so called Opaite Epidemic, has been a markeing scheme. They sold pain patients gadjets that caused infection and death. Dangerous steroid injections were peddled, and the patietns wheo were injured were silenced. The alternative medicine quacks elevated their schemes and legitamized psuedo scince. The only advocay for pain patients or really any patients, was all corporate funded. In order to receive corproate money, the patient groups had to be misdirected. The so called advocay groups, were a great marketing gimmick. They kept patients blaming everything but corprorate healthcare. Other Developed nations, do not have this problem, they have Universal Healthcare.

Look at any of these so called advocay groups, all funded by interests that make money from patients despair, agony and confusion.

Rebecca Hollingsworth

I read the report, took notes, but haven’t drafted my response yet. The government needs to leave us chronic pain patients alone. There is no one size fits all solution as we all know. What works for me may not for someone else. And you are correct, socialist medicine at its worst. My pain management doctor is being forced to stop prescribing opioids. I’ve been his patient for 10 years and now being made to taper because of this insertion and intrusion by the government. I thought best practice was what the patient and doctor decided, not some inept public officials. I haven’t been able to find a new doctor yet so oh boy, can’t say I’m looking forward to anything right now. I hope everyone that is suffering because of these insane rules finds relief. Praying for all.

Margaret

The thing is I am working only because of the monthly prescription of a tiny dose of meds. I can surly do better with an increased dose but I’m afraid to ask for a raise because of the laws and the fear of being labeled. We get medicine to help our pain and we are then able to work and have quality of life. If something else worked better, I would do that. But opioids work better than anything else I have tried and I have zero side effects!!!

susan

I hope you receive my response. Thank-you.

Prop and best pratictices in pain management is socialism. None of these best practice have not worked, because everyone in pain have tried these best practices. Its a waste of our money and only raise the cost to those who have insurance. Trying to brain wash people in pain that this will help us is continal insult and only line the pockets of pain management doctors & continal suffering & debt & forced unnecessary unproven procedures to get a tick tac worth of opiates. We the people in pain are burned out on such practices & we now turn are backs & no longer want to participate in what prop & BPIPM have constructed for whats best for their business & politically accepted profile. None of this is geared in best interest toward people in pain it’s a disguise for socialist medicine. More PMC will not have enough people to generate income to keep their doors open thats why their wanting insurance to cover the cost it has nonething to do with gaps in care & best practices is nonething but Politico terminology to influence pain people to back their agenda. Read the best practices it’s all geared toward not the pain patient but how the practice is run to incur income.

justsaynoemore

I seriously doubt my comment will get posted as well. I am a former elected official and the American political system is a joke. This will get thrown in the wastepaper basket.

KGTheAscent

I’m sorry but socialized medicine is not the answer. My son has a rare disease that requires specialized treatment. I do not need the government telling me where he can go for treatment or maybe even denying treatment. How many doctors would we loose if we went to a socialized type of medicine? There are already plenty of doctors that do not take Medicare and Medicaid. I’ve billed Medicare and Medicaid…. people would be surprised at just how little doctors get paid for office visits when they see patients.
My family was covereded under a medical plan that the doctors worked for the insurance company. (A company that the government looks to as an example for a one stop shop health insurance plan.) I still don’t see how that’s not a conflict of interest. Anyway….. I know for a fact that I had diabetes for over a year and never once was told about it. I found out after we switched insurance companies and doctors. I also know my son would not be alive today if he was made to go to a neurosurgeon that did not specialize in his type of disease. There was just too many issues that were not addressed or ignored. Personally I do not want that for my family.
It just scares me to think that the government would be in charge of my families health care. God help us if it’s run like the VA. You know because…… that’s run so well. Picture that on a nation wide level for everyone. No thank you!

T J

The ongoing war on drugs has resulted in inocent pain patients being lumped into a category of drug abusers.although I sympathize with addicted people and problems that may have caused their addiction . I have been a responsible pt. On pain meds for two decades for my pain wracked body.this past year found me getting doses cut to 10 percent,and lowering to the rediculas 90 milagram Morphine equivalent. Although this might be appropriate for a opiate “naive” pt. As the termanology goes, but the dosage for a “seasoned”veteran as I guess the term would appropriately consider myself, is not. It doesn’t seem to matter that the medication did provide me with some sort of life quality, something that has diminished drastically . One size fits all in the world of Lost cause medicine, no longer do I feel as if I am being treated medically, just pasafied for the sake of being in extreme pain.

Cindy

I have written my story. I also listened to the US Pain Foundations webinar. It was very good. They are trying very hard to help us. Sending your story in is a way of helping yourself.
Cindy Steinberg is going to speak at a hearing at the U.S. Senate Committee on Health, Education, Labor, and Pensions, on @/12. Cindy is the National Director of Policy and Advocacy for U.S. Pain Foundation. Cindy is the only person living with chronic pain who has actually breached the government and is doing something to help us. I give her a lot of credit in trying to turn this thing around.
During the US pain Foundation webinar, Cindy said the most important thing we can do is write in and tell our stories. They were very surprised, the last time they gave us a chance to write in, they got over 3,000 stories in 2 weeks.
Please make sure you send in your story. It is the biggest thing that we can do as individuals in helping to stop all the craziness. I know it’s hard to do. Even if you can’t deal with writing your story down, say I’m to sick to sit and write my story. If we all do this we will be heard. This is our time, please take it!
https://uspainfoundation.org/
P.S. My name is Cindy but I’m not Cindy Steinberg 🙂

FormerPatriot

Virginia, Bernie supporter myself and think socialized medicine is the way to go, BUT for now, it seems to me that the way CPP’s are being tortured or abandoned by government interference in their healthcare is actually one of the best arguments its opponents can use AGAINST it. With the current influence of money on politicians, there is no way socialized medicine will EVER gain a foothold in this country, but maybe candidates who want to run against it could use this situation in their arguments…at least then our voices might be heard!

Holly Marquis

No one can experience my pain. I wouldn’t wish it on anyone. We I say my pain is a 7/10 and I look perfectly normal, is because my pain is chronic-everyday I have pain. Just because I’m not crying doesn’t suggest it’s not real. Do not punish me for some rare diseases I was born with and you cannot relate. I should have access to ANYTHING that potential lower my CONSTANT pain.

What do you do when you are involved and go to a Pain Clinic but an issue which is painful which is not related to your issue that you go to the clinic for? People see this or you tell them then they don’t address or treat what you have seen them for! What are patients to do ??

Kelb

I commented over a week ago but when I logged into site to help others comment, my comment was not to be found! I saw past comments but not this one…..I will repost a comment of course but scary to know its gone!

These guidelines are making the doctors afraid to write opioid opioid medication. What do people in pain do? i have been this medication fr years and just the slight cut makes me very ill. Even though the doctor’s say it;s only one ill a day, it won’t make a difference. I guess reading about something makes you more knowledge, then the person(people) who tale this medication.

ElizabethR

I sent in my comment last week. I’m in somewhat the same situation as Pam (see earlier comment). I’m 82. All I want is to retain as much functionality and quality of life as I can in my remaining lifespan. As she has, I’ve tried many different approaches, including non-pharmacological, to reduce my back and neck pain. Most have not worked at all or were very short-lived in nature. I start another round of PT next week.

I’m fortunate in that so far, anyway, I’ve been able to remain on a low dose (less than 20 MME) of a mild opiate; I have never experienced adverse side effects. On the contrary, responsible use of this medication allowed me to stay in the workforce until I was 78 Y/O and allows me to continue living independently in my own home with my now-89 Y/O spouse. Although I am far from pain free, I am able to do the shopping and errands as well as most of the household duties. If increased pain were to render me non-functional, we would likely be forced into assisted living–or worse. Continued longevity would become significantly less welcome.

One current scare tactic about older adults and opiates is that they may cause breathing problems which could perhaps contribute to death (this can happen, rarely, but usually involves underlying medical issues and/or high dosages, sometimes combined with alcohol or other drugs). I suppose that’s the reason my HMO felt compelled to provide me with Narcan–despite my declining their “suggestion”. That’s the same opiate-agonist medication that law enforcement uses to reverse heroin/fentanyl overdoses. Great! Nothing like placing a responsible, law-abiding patient in the same classification as a “drug addict”/criminal. Insulting, demeaning and abusive in my view!

What will it take to make the powers that be differentiate between a “drug addict” and a long-term pain patient who has a verifiable record of responsible medication use?

dave

The sheer unabashed market fundamentalism, expertcentrism, rankism and Prussianism and neoliberal paralysis of the pmtf is a testimony to the failure of our crrent pain care system. The total lack of fundamental fairness, of policy representation, of genrally accepted policy principles testifies to the continuing escalation of failure by experts and government in pain care. They cant get it right and they stand in the way of moral, social and political progress in pain care. Theyve treated people in pain as serfs whose rights only they have the right to recognize and assume because they were given the right to speak on the issue- that makes them right. Obviously the pmtf has a strong social dominance orientation and has no respect for democracy or the opinions of people in pain. Congresses idea of democracy is 27 wolves and a sheep voting on dinner. No doubt there will be a continuing escalation of failure- because not getting pain care right- ensures that there will be resume builders and funding for pain experts and government. The pmtf is a tragic farce- a red herring for the structural changes needed to empower people in pain and ensure their wishes are treated with respect and that democracy in America isnt dead.

Pat

I have been a Pain Mgmt patient for over 3 years and have been been treated like a criminal because I am seeking relief for my pain.
These guidelines are in response to addicts NOT those of us who are searching for some resemblance of our lives!

Sharon L Lumley

I am 70 years old and have severe osteoporosis. The compression fractures were not addressed until late – August. Because I had been to the emergency room 2 times, my pcp1, orthopedic doctor, then to a Spine team doctor, and because Tramadol was prescribed by these doctor (my pcp and spine doctor 2 timee) and because I have no car, I did use 3 difference pharmacies, I am red flagged in the computer and I am unable to get pain medication except OTC. I have recently had another fall. Doctors and Pharmacist are afraid of losing their license so therefore I have to suffer with pain which will eventually lead to other health issues. I now have hypertension from not being able to address the pain

What is this that Naomi is speaking of ?
A report from the PRR to the CDC?
Link is not powered
Anyone have any info ?

Deborah M Babcock

Maybe people are beat down so far as to commenting on this is in their prospective ineffective and worthless cause were all still in pain and living with chronic pain day and night..Do people really think that botox,physical therapy,anti deppressants,ibuprophen,tylenol and all of the other BS that their comi g up with will work for our pain !!?? Come on people. We are human beings with feelings and get treated like drug seekers,UAs popped out of the blue only to find that there isnt anything in my body !! Good one,,try again…people have been beat down so far that suucide is an ootion and some have done just that !! Animals get treated better than human beings !! Hmmmmm ponder that…people are being treated like Guinea pigs,how is that right. Most of us have already gone through trying everything on the market and to no avail however there is something out there that does work for people to give us back parts of our lives…It is opioid pain medication that has been around for many many years and is effective with little to no side effects for most people..im tired of being a Guinea pig to pharmaceutical companies all the while their bank accounts ard growing !! It isnt fair to be pushed away by our very own doctors (wasnt even worth capitalizing) whom we put all of our trust into when it comes to our health and well being !! I can guarantee you that the 1 percent dont get pushed away,their families and loved ones..would they sit and watch their loved ones grimmace in pain day and night to where they are barely holding on ! Would a doctor 0r (NP) let their loved ones be in pain day and night !! NOOOOOO none of them would do that cause they love them.!! I love my family and they live me too !!! So,why on Gods green earth do people have to suffer !! We are all being neglected,tortured !!! Does that sound good or fun. Hell Noooooo.!!! Is this opiod epidemic only targeting the middle class and lower ? Im about ready to invoke my rights as an AMERICAN CITIZEN Lawyer

Mildred Bradway

According to the disability Act of 2015 in not prescribing pain medication is a discriminating against the pain patient when all other treatment has failrd. Is tgis true?

Queen Mary

TU

Veronica M Clark

I don’t know if I responded or not. Would be helpful to know. If I haven’t, I sure would like to! Apparently meth, heroin, and cocaine are now ‘opioids’. They were called narcotics before. Street drugs. I’ve never heard of a doctor prescribing cocaine or the others, have you? Apparently those of us in chronic pain don’t matter. Nor does the responsibility of parents maintaining their children’s medications. I said it before, and will again. If someone wants to end their life, they will find a way – no matter how. Pills are just easier.

Martha

Thank you for the ‘Warning Call’ Ed. Having a very tough time with pain right now. I am trying to find someone to help me type my comment. It is extremely painful for me to sit, text & type. I can’t respond anymore right now…but
YES, I plan to comment.
Martha

Seriously Suffering

The reason so few comments is because people have surrendered to the fact we are truly screwed, you cant defeat the federal government

Theresa Negrete

I was considering adding my experiences, however, I don’t think it would matter! There’s one Pain Patient profile I haven’t seen represented. Think the prejudice for taking Opioids for pain is horrible and it is. Patients with Chronic Pain and a mental diagnosis have had unspeakable troubles being treated for pain. Because of their mental diagnosis, many doctors have not believed them. They have to jump through many more hoops to get treated. I’ve had enough! This world is [edit]! I truly believe the Government wants to save money and let all of us who, they believe, are not contributing anymore to productive society, just die off. The powers that be don’t care! My GOD, all of this persecution of Doctors prescribing Opioids, Doctors PUT YOUR CHRONIC PAIN PATIENTS ON PALLIATIVE CARE!!!

Virginia

It’s all been said before, Ed. You’ve just said how it needs to be right here in this last report today. Are they really gonna listen to us? I’m tired, fed up with this whole thing and I think Bernie; has anyone ever heard from him by the way?, had the right idea all along.

Naomi

Those guidelines, which discourage doctors from prescribing opioids for chronic pain, are voluntary and only intended for primary care physicians. But they’ve been widely adopted as mandatory throughout the U.S. healthcare system, causing additional pain and anxiety for millions of pain sufferers.

“Chronic pain patients feel or perceive that the CDC has failed them because doctors are making extreme generalizations in determining appropriate care for their pain patients,” PRR found.

The PRR report to CDC was obtained by Pain News Network under the Freedom of Information Act. Excerpts from the report can be seen by clicking here. (EVERYONE NEEDS TO READ THIS, EVERY DR HAS BEEN LIEING TO PEOPLE LIKE ME WITH CHRONIC PAIN. !!! ) IM GETTING A ATTORNEY NOW!

Naomi

I broke my back at 17 , ive had 5 lower back fusions since 1989 to 2014 , i live in Chronic Pain everyday and its just not for that. Over the years ive had 2 knee surgerys, cancer /cervical, complete hystrotimysurgery, rt carpel tunnel surgery, rt roter cuff surgery, Sleeve Gastronomy surgey in 2014 with many many complications, including the staples in my stomach hurt dailey, i have Fibromyalgia, Arthitiss, Cervical bulding, and now need a rt hip surgery, rt knee surgery. So for me to keep what pain meds i get now , i have to jump through hoops all the time , do injections that dont work, and my ins wont pay for. And then i have to go in every 20 days to get my meds which my dr at Sunnyside clinic in clackamas or never gives me enough to last. So i feel he is setting me up to fail on purpose. Also i feel that dr is basiclly TOURTING ME FOR MY PAIN MEDS. NEED HELP . PORTLAND, OREGON!

Pam

I don’t understand how the government can interfere between a patient and their doctor. They are inserting themselves in one of the most intimate relationships a person will have in their lifetime. A few years ago everyone had to sign HIPPA paperwork to ensure a patients privacy was protected. What happened? Now it’s the business of the DEA, insurance co and the pharmacy. They all feel they have the right to know our private information regarding our health issues. When you try to have a prescription filled the pharmacy personnel now can ask what is the script for – which makes all the customers standing around privy to our personal information as well as the DEA etc! Do we have to surrender our dignity because we have health conditions that are painful and debilitating. I know there are people who abuse drugs but if I am a law abiding citizen that has behaved appropriately and has not abused drugs in the past…then I believe I should be treated with respect and not be ABUSED by the very people who are supposed to look out for my welfare! Even if this mess ever gets straightened out I’m not sure doctors will ever be comfortable writing scripts for opioids anymore. Which is a terrible shame because many people have taken them responsibly and were greatly benefitted by them! My quality of life is much lowered since I am in pain most of the time and at 70 years old and I just want to be able to cook and do light housework for me and my husband. Over the years I have tried many things to help reduce my pain. All efforts were for naught. I’m out money and time for each attempt at something that did not work. I just don’t have the energy to fight for what I feel is just simple consideration for my health, dignity and self respect!

Thank you!

John

I just submitted my letter. It was a bit angry but after what the new policies have done to me and others I have seen, I let them off pretty easy. Here in Arizona if one is what they consider a high use patient with conditions that can not be helped with low dose narcotics, a back rub and accupuncture, the doctors will not pick you up. Believe me, my pain management clinic closed at the start of the new Trump rules and I have applied to 12 clinics since. At 65 I had to go through detox unsupported, and just lie here on the couch in pain. That’s what a lifetime of never having taken anything but through my doctor has gotten me. What it says is the remaining doctors are afraid of prosecution for treating patients like me or are complicit in this belief that we are a part of the national drug problem. In my 32 years with Pain Management I have never violated policy, have worked and been a model citizen. I really resent being put here because some politicians flipped a switch without thinking it through. What a mistake and if this continues uncorrected, what a crime again here-to-for law abiding citizens.

Rich Reifsnyder

Hello,First Dr.Red I Thank You From The Bottom Of My Heart For Your Compassion And Tireless Never Ending Campaign To Help Millions of Us CPP,S and Veterans in This War on Pain Patients.My Mother Passed away February 2nd,when I get my head cleared up a little more I will submit my comments like always.God Bless All And God Bless Dr Red,You Are Our Guardian Angel Red❤️👍

Brett H

I never received or was asked to receive any money from this [edit] medication. I can tell you the Exact problem with SSRI medications. The doses are too Damn huge. There is no way of getting smaller doses in between and these meds work through the blood, brain barrier. The initial dose was great. Going from that dose to the next was impossible for me it made me feel like jumping off a bridge and every little thing felt like a big deal. I quit cold turkey. Was yelled at by my nurse she said your not supposed to quit cold Turkey. I said it’s a time released capsule. How? Anyways I don’t want that near me. Gaba supplement from GNC stopped the zaps ( thank God) after putting up with them for 2 weeks. Where is my settlemsnt