The Pain Patient Says Our Government Isn’t Listening

The Pain Patient Says Our Government Isn’t Listening

By Ed Coghlan

“The pain patient in America feels unheard and doesn’t believe that our government even cares about them.”

Those words from Paul Gileno, Founder and President of the US Pain Foundation which shared results of an online poll it conducted with some 1900 pain patients.

The distrust of the new CDC Guideline for Prescribing Opioids for Chronic Pain is overwhelming.

  • 95% says they think the guideline will diminish the quality of pain care
  • 96% believe the guideline will hurt access to care
  • 94% believe the guideline will increase the stigma of people living in pain

The overwhelmingly negative reaction is not surprising given the protests the pain community have already had regarding the CDC proclamation.

“Patients are so frustrated about what’s happening to them,” Gileno added. “We need to stand and say this is absurd and discriminates against people in pain.”

The emphasis on opioids has also blurred other access and quality issues associated with the care that pain patients are – or are not – receiving.

“People who favor these guidelines would have you believe that all pain patients use opioids, which isn’t true,” said Nicole Hemmenway, Vice President of the US Pain Foundation.

As another survey respondent said about the overemphasis on opioids, “You should stop equating pain treatment to opioid prescriptions. There is much more to pain management than opioids but that information is not getting out and that is harmful to patients. Patients need to be self-empowered to manage their pain and live their lives.”

For Gileno, a pain patient who founded the Foundation which is now the largest pain patient advocacy organization in the U.S., it is the message that the patient is receiving from our government that is troubling.

“People in pain are saying, talk about us and our pain and stop talking about the medicine we take.”

Some of the people who took the poll are also steamed that alternative therapies often aren’t covered by the insurance companies.

As one wrote, “Start asking the CDC and other governing organizations to demand that insurance cover other recommended treatments, such as massage, acupuncture and aromatherapy. It is unfair to recommend these treatments, take away what we have now, and refuse to pay for the new alternative.”

The US Pain Foundation also asked what people think should be done to make the case about what they believe is the inequity of the new guideline.

They want to make a statement.

As one said, “What we need is a social uprising campaign to bring everyone together and fully informed on each of the different policies in order to make change happen.”

US Pain is going to announce an effort along those lines in the near future, according to the two executives we spoke with.

The distrust of the government also came through surprisingly in how they view the National Pain Strategy which was released the same week as the CDC Guideline.

By a nearly 2-to-1 ratio, respondents says it’s bad news for people in pain and 58% said it would worsen care of people in pain.

“That’s disappointing and shows we haven’t done a good enough job of promoting the importance of it,” said Gileno. “The National Pain Strategy represents the first time that people with pain have been validated by the government.”

The National Pain Strategy was hailed as a potentially transformative moment for how pain is assessed, treated, and taught since it was released, but not much has been publicly shared about how implementation is going to happen. We reached out this week to the NIH about next steps with the strategy, but have not yet heard back.

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Authored by: Ed Coghlan

There are 61 comments for this article
  1. MichaelL at 7:55 am

    When one includes weight loss in the pain management, they deny the fact that the pain is one of the cause for the weight gain. When one cannot exercise, the weight is going to go up! Poor pain management would result in weight gain! But, let’s blame the victims of pain and poor pain management! The statistics prove the people complaining about the present situation are nothing but pain management Chicken Little-s! Many times the number of overdose deaths happen in hospitals, every year, in the form of “hospital error” deaths! I had a patient, who died in a nursing home, where the nurses bragged, “they finally got the medication down the patient, after crushing it and forcing her to swallow it!” It was no wonder the patient was refusing. They were crushing her 80mg Oxycontin! But, no malpractice lawyer would even listen to the daughter! It was never reported as a hospital or physician error, either! (He told the nurses to crush the Oxycontin!) Lesson to me…avoid organized heath care, as much as possible! Sadly, we, chronic pain patients, are stuck in the “Catch 22”!

  2. BL at 2:50 pm

    Jean Price, I was going by the comments at regulations.gov. Those in favor of the CDC Guidelines and some wanting stricter Guidelines far out numbered those that were against them.

    Christine Taylor, if more chronic pain patients did all they could to keep their doses low, we wouldn’t be going through what we are now. Unfortunately, too many chronic pain patients don’t want to adjust their lifestyles, beyond what is easy. They expect their drs to comtinue to increase their meds.

    Christine Taylor, pain contracts are proof that patients were told what they can and can’t do and that they understand it and agree to it. A patient can’t say they were never informed they weren’t to get a prescription for pain meds from another, unless they talked to their pain dr first when they have signed a pain contract.

    Requiring pain patients to sign pain contracts are up to each individual dr. It is alo up to each individul dr what they put in them, although most of them are standard. I have seen several pain contracts that state if the patients weight is or becomes a problem that they could lose their pain management if they don’t keep their weight down. Since additional weight increases pain, this makes sense.

    When a pain dr sees that a patient is trying to manage their pain with things like keeping their weight down, exercises, diet, etc they are more likely to work with the patient. After a time of the patient saying they are doing theses things and the pain dr doesn’t see results, often removing or reducing narcotics will produce results. Chronic pain patients have gotten use to having their meds increased when they gain or don’t lose weight and they don’t like not being able to continue with the way things use to be.

  3. Christine Taylor at 12:50 am

    Richard A lawthorn PHD,

    It is so sad what happened to that poor man. I do hope his family pushes the issue. For many it is just too stressful. Having said that, if they are looking to have the issue handled by a lawyer they can set up a Go Fund Me page. I would definitely contribute and share it.

    Hopefully you do get a response from FB groups. I am someone who has been successfully treated with opiates for chronic pain for 14 years now but I am in Canada. Once I had the dose that helped me it never increased. I had been in pain so long that I fantasized about dying, in fact I hoped I would. After finally having my pain treated adequately I was afraid of developing a tolerance and needing more so I do what I can to prevent it. I trust my doctor and she trusts me. Doing what I do I actually had to decrease my narcotic as I would get a rebound headache when I had pain and needed the break through med. I told my doctor and she cut my dose in half but wrote the script out so that if I needed the original dose, I could take it.

    I think it is time doctors and patients stood together, pooled money and started to proactively fight this through the courts. Too many disabled people are being discriminated against. Here we have things such as The Human Right’s Code and The Health Care Consent Act but I see how some patients are having trouble. One doctor wrote that we should follow CDC guidelines like in the USA and I am ready to scream about it if I am discriminated against.

  4. Christine Taylor at 12:24 am

    (KQ1). While benefits for pain relief, function, and quality of life with long-term opioid use for chronic pain are uncertain, risks associated with long-term opioid use are clearer and significant.

    Who makes this cr*p up? Did they actually use patients suffering from long term chronic pain?

    It is true that patients become tolerant to the medication and there needs to be a plan in place to help reduce tolerance where at all possible. If a patient does become tolerant on one of the highest does possible, the medication would no longer work well for them. Most of us are not at this point.

    I am so afraid at reaching this point that I have come up with my own ways to prevent this and have discussed them with my doctor. I use exercise, ice, and drug holidays (meaning I do not take anything and instead rest and use positioning) I also recognize that I must put up with some pain.

    When I am in a bout where things are not so bad I remove my patch for about 12 hours at a time and reattach with surgical tape. This helps me to avoid withdrawal symptoms and reduces the amount of narcotics in my system. If during this good time, pain is tolerable, I will remove the patch for longer. All this helps to ensure that my meds work when pain is worse of when I absolutely have to be up and functioning. On days when I do not have to be up and am in pain if I can manage to put up with it, I will rest in bed the day, use ice or repositioning.

    Another strategy I use is medication such as Lyrica. (there are other options) Yes I understand that people do not like how it makes them feel but if you are truly afraid of tolerance you will use it to combat at least some of your pain. After a while most of the side effects will go away. If they do not try just using the medication when you do not have to be up and functioning. Anytime you can use something else other than a narcotic it decreases the chances that you will develop a tolerance to the dosage that originally helped you.

    Some people are reluctant to try an antidepressant or anti-seizure because once they do some doctors automatically remove the narcotic. Fear of this possibility can increase anxiety about pain, which leads to more pain.

    Instead of the CDC slopping out their silly ineffective guideline perhaps they can help patients to ensure that they are able to maintain the dose that once helped them. Patients would be less fearful about not getting pain relief, and doctors would be less anxious about treating chronic pain.

    The silly pain contracts that doctors are making people sign is discriminatory. I agree that pain contracts are a must but they need to include things such as exercise, diet, and non-narcotic medications. In turn the doctor should agree that they will not remove the narcotic while the patient is using all reasonable methods to help.

    It would be highly beneficial if they looked at how chronic pain sufferers kept from increasing their dosages.

  5. MichaelL at 10:09 pm

    Makes me want to cry. Being one of those “bad” doctors having my license revoked, my suffering, from chronic pain, puts me at the mercy of these doctors, who think they have the ability of gods. They think they know how much pain I feel? No one could. I don’t care how may letters they have behind their names! Your story makes me want to cry!

  6. Kris B. at 7:24 pm

    I have to say I agree with this but I live in KY and the pain management in my state has been run like the CDC’s new guidelines for years….it is sad as I suffer in daily pain from neck and back, interstitial cystitis and Atypical facial pain that does not respond well to medications because it is Atypical ….

    I do get treated with pain meds for my back and neck only , I am left on my couch not able to function with a heating pad between my legs..with the purple vein marks to show how hot this heat has been on me for so long…

    yet my pain doctor will only treat my neck and back and only give me norco 5’s I have been on them for years…my back is okay but this pain med does not come close to touching my other pain problems

    I had my caseworker go in and beg him to raise me to norco 7,5’s to get me up and functioning…he said no…he said I am 45 years young and I was to young to make a raise in them that he worked in a suboxone clinic 2 days a week and saw too much addiction..now my insurance company is not even paying for my neck injections……….nice!!!!

    So does anyone stop to consider how this affects a person mentally to live in such pain on a a daily basis and not be able to function? the tole it takes on their families? You want to see suicides? or deaths….keep not treating us for pain and see how long until we break! I promise I am a limit and I have a time..and I have a note in place…and I will not go out with pain meds NO WAY….but when I can take no more …I will exit on my terms….

    I pray every day to just be able to go out to dinner or the movies or just shop to buy a new shirt…I have not got a haircut in almost 2 years…..

    how do you think this makes a person feel..oh and I have a great mental health team thanks! they are helping me so much to try and get me through this life and keep hope in me.

    We need change..I am not an addict …I do not over use my prescriptions…I sit in pain with heat and or ice on my privates on my couch..I will not buy illegal street drugs..I am a good honest person…who just wants my life back…

    Thanks for your time

  7. CathyM at 12:09 pm

    Love all the replies and stories! We need to get these out to the public!! I hear the very valid concern that government isn’t listening to us and doesn’t have our best interests at heart – but it’s not just government – all of our medical systems are corporation-based these days!! The decisions about pain meds is coming down from the lawyers and the doctors are now just employees! This is CYA stuff, and that is one reason why the corporate medical system is treating the CDC guidelines like rules! The CDC covers THEIR butt by saying “it’s only guidelines” and the medical bureaucracies cover theirs by saying they “have to be ahead of the curve”… I have an idea: why don’t they just make us sign a waiver, like the wily computer companies do? Instead of the whole nasty contract/hurdles, just have those of us who take opioids sign that we won’t/can’t sue if we become addicts! That covers their butts and allows us to decide what risk we are willing to take. They do that for operations (I know, because the hospital that botched not one but two surgeries on my right hip has small print that I had to sign while on the gurney that prevented me from suing) But I doubt they will be willing to be that honest. So I agree – there has to be class action lawsuits – we individually are afraid to speak out for fear of losing our medication (a very valid reason!) but as a group we would get publicity, and that hopefully would keep the medical corporations from punishing us (but I know striking workers often lose their jobs, so it’s not a guarantee).

    Thanks to those doctors who posted here, who are still trying to help us! And the lawyers – we will need many advocates. As a writer, I’m trying to get essays and articles into the media, and also work on stories that might convey the experience viscerally – sometimes we have to touch people at a gut level. So I’m glad some folks are making documentaries and posting videos to YouTube – let’s find them and pass on the links!! Wake up our busy, distracted fellow citizens to an issue that will definitely affect them sometime in their lives.

    BL, I’m not sure where you get the data for: “Like it or not, not being able to function is not as serious as possible addiction.” – that totally varies with the person. My 92 year old friend hurt her hip, and addiction is NOT an issue for her! And most of us commenting here have proven that we aren’t addicted. Addiction is both a biological and environmentally based issue (I’m a retired mental health therapist who worked with substance abuse, among other things). The risk is a LOT smaller than they are making it seem! Yes, the higher doses of the stronger opioids carry a greater risk, and yet there is significant evidence that many/most pain sufferers don’t become addicted. So – monitor the risk for the first year or so of taking meds, but after that, if there is no evident addiction, the risk drops far lower, and all this hoopla is NOT necessary.

    I believe there are a lot of self-serving motivations in this new move – I note that the cost of naxalone has just shot into the stratosphere, and several drug companies are introducing “abuse-resistant” versions of codeine – extremely more expensive of course, and not currently covered by insurance! It’s really hard not to be cynical about this. But it has always been true that the squeaky wheel gets the grease – keep speaking out and especially get your loved ones to speak out! They are the ones who can’t be called “drug seeking”, and who can describe what they see when they see us suffer.

  8. BL at 4:41 pm

    Tim Mason, could you be more specific ? The past few weeks have been much busier than usual. My pain level is higher than usual and overdoing it is catching up with me, so I apologize for not understanding exactly what you’re asking.

  9. Donna at 2:00 pm

    So true our government needs to step up the pace !!! We are so behind in times Europe n Austria n Canada is so far ahead of us!!!!!

  10. Steve P. at 8:00 am

    Andrew F. Marshall what would we need to do to start lawsuits and who should we be filing those suits against?

    I am tired of watching the pain community and the ones I know and love either be murdered, suffer a heart attack, suffer a stroke, and/or go into shock, being brought to the brink of death, due to these sadistic and inhumane policies! I’ll be a face for the community if that’s what is needed, but I need some help starting these lawsuits.

  11. Pharmacist Steve at 3:04 pm

    The bureaucrats/politicians don’t hear you because they “don’t feel your pain”.. Congress has a single digit approval rating … BELOW car salesmen and yet 90% will get re-elected. 435 House members and 34 Senators will be up for re-election in Nov… They will only feel your pain if they have to find a NEW JOB in Jan 2017 and those that take their place had better listen to those who put them in office. We are seeing with the Presidential election just how insider controlled who gets nominated to run for President. It is like a game of “political cloning”… Insiders want to make sure that the only ones up for election is one who is part of the same “group think”.
    Everyone believes that the war on drugs is a failure.. except those two political parties that keep funding it for the past 46 yrs..
    The current Democratic/Republican party is not “your Father’s party”. Congress imposed term limits on the office of the President… but.. no term limits for Congress ?
    If you always have to vote for one of the two ENTRENCHED parties… you are voting for maintaining the STATUS QUO… and how is that working for you ? IMO, you can write letters… you can generate/sign petitions… tell the cows come home.. how is that working for you… how about the petition with 150 K signatures calling for the resignation of the head of the DEA… noticed who is still running that agency ??
    The last Presidential election out of the 252 million eligible voters only 126 voted and 5 million separated between winner and loser and the 106 million that didn’t vote – strangely the same number of chronic pain pts and the number that didn’t vote are THE SAME.
    Change for the chronic pain community is not going to happen unless those in the community stand up… rather than standing back and waiting for someone else to make things happened… YOU DO NOTHING… YOU GET NOTHING…

  12. Tim Mason at 2:40 pm

    BL do you have a reference for the testing protocol you mention? I worked in Pharma for 42 years and do not recall drug efficacy like you mention. Something new?

  13. Jean Price at 7:33 am

    BL…many people didn’t respond because it was unclear who would use the survey and for what purpose. So I have to disagree with the numbers not being there, and also with your statement of many agreeing with the CDC! Recently on a Facebook post, a comment I made received over 1000 likes and roughly four hundred comments, mostly from people who have been negatively impacted from these current guidelines and changes. You may have other information to base your analysis on, but from what I’ve seen and heard, the numbers are out there and the problems are real. And growing, since there are reports that even post operative pain care has been threatened and denied, along with pain treatment for cancer patients. Some areas are hit harder than others and some people still have compassionate, caring doctors…yet the risk of losing those few is real. I’ve been confused before about your interest and stand on the issues of chronic pain. Would love to hear your story and the insight you may be able to offer all of us.

  14. Michael G Langley, MD at 4:21 am

    As a former physician, a general surgeon, being forcibly retired over pain management, I am appalled. Even worse, I will suffer, with everyone else, because I have a post traumatic neuropathy from a broken back. In the four years since my injury, I have been inadequately treated, for the severe, unrelenting, tingling, pain in my left foot. I had a “pain specialist”, one of my former competitors, decide to write a letter for Medicare saying I had exhausted all of the treatments available, THE FIRST TIME THAT I WAS IN HIS OFFICE, so he could get permission to insert a dorsal column stimulator. He did not offer physical therapy, acupuncture, ultrasound therapy, (or many other types of therapy) that were NEVER tried! Sadly, I had a huge abscess and MRSA infection that happened with the back surgery, the last time I was cut on! He would mislead the government to get permission to do a risky procedure on me! All, so he could collect a big paycheck! I am just waiting to figure out where I will be able to move to get adequate therapy for my pain. I was up most of the night, tonight, with the tingling in my left foot, even while taking all of my prescribed medication! The problems with pain management have been going on for a long time, considering it has been over ten years since I was denied my medical license! This is just another nail in the coffin of the chronic pain sufferers. My mother was allowed to die in her room a year ago…but she was 78 and had chronic pain, too! She would just have been a drain on the system, with her pain and the cervical cancer that the doctors ignored for two years!…………..(;-P

  15. Andrew F. Marshall at 12:08 am

    I have been a lawyer practicing, almost exclusively, insurance defense litigation for over 30 years. I was a very active athlete all through college, law school and afterward. My chosen sport was slalom water skiing in which I participated competitively during college and for a time thereafter. Thereafter I also included barefooting, wake boarding, and surfing. I was part of a small group that skied together for years during college and continuing for years thereafter. Most injuries were cuts from striking the ski and the occasional rib fracture, bruises and sprains. That is until I completely blew out the C 5/6 disc (severe herniation) and suffered a large bulged disc at C 6/7.. I had seen many such injuries in cases I defended, so I was familiar with the medical terminology. I my case the neuro-radiologist’s report stated “a massive herniation on the left side with fragments of the disc present” One disc fragment is impinging the cord but no signal loss. When I spoke with him he said that it was the most “blasted out” disc he had ever seen. His report went on to state that “this patient is at some risk for the development of quadriplegia”. I went on to learn that but for the cord involvement surgery usually depends on how painful are the radicular symptoms. However, I was also told that nerves carry 2 signals, sensory and motor. Surgery is usually a function of how much pain you can stand without it. Yet, if there is a loss of motor function and atrophy of the muscle, if the nerve root impingment is not repaired the loss of motor function could very well be permanent at the level before surgery. Well I was put on opioids along with conservative treatment for a while when surgery became necessary. The pain before surgery was almost unbearable, and without pain meds would have been. They fused my vertebrae and installed a titanium plate connected to c-5 and 6 with 4 screws. I then had to wear a collar for 7 months while they fused. I was able to stop taking the pain meds about 3 months after surgery and remained pain free and med free for numerous years thereafter. However, to make a long story short, after many years I developed many different spinal problems in that area due to spinal stenosis, scar tissue, and a worsening of the C6/7 issue. I dealt with this by use of trigger point injections and blocks with steroids. These were over used to the point that I developed cataracts in both eyes. The pain had now become chronic and surgery was not an option. I now had no choice but to use opioids because the pain moderate to severe and was there day in day out and still is. It has damaged all areas in my life. The only way I can function is by use of these medications. I have suffered some of the stigma from all of the negative publicity that surrounds all narcotics which unfortunately lumps everyone together There is no question in my mind that when such stigma is practiced by authoritative entities (with and without state action) and involves legitimate use of pain medication constitutes unlawful discrimination against a specific class of individuals which rises to the level of an unconstitutional violation of their civil rights under Title VII. This is also a definable class the injuries and damages to which are cumulative and in addition to the tremendous suffering already experienced and to be experienced in the future with no end in sight. Worse yet, with the prospect of the loss of the only remedy available to some, there is little doubt that with such increased stigma, lack of recourse and the new loss of hope of receiving medication, more will turn to any source available to curb their pain, and many more suicides will be misclassified as overdose.

  16. BL at 10:02 pm

    Edwina Caito, would you please post a link to that state law. Thanks.

  17. Cynthia at 9:18 pm

    If there are 100 million Americans in pain, maybe 60 million in severe Chronic pain, then that means one in 3.5 or one in 5 is in pain that needs treatment. To me, that must mean that every family has a pain person in it, or knows someone dealing with pain issues. So surely the word is spreading, by mouth, about what is happening, and most families have been impacted already. There must be a lot of outrage out there now. So it shouldn’t be too hard to get some strong lawsuits going. I think we need advice from some attorneys. What Kind? Malpractice? I don’t know that much about what kind of lawyers do what kind of lawsuits….but someone on here must. The suggestion of making donations to a non and then funneling the money to a good law firm to take our case, whatever kind of case would be most effective, is what comes next. We need power and direction. Who has some good advice? We need to stop talking to each other and hire some big guns to speak for us in the bigger world.

  18. Tim Mason at 4:54 pm

    Are diabetics addicted to insulin? Are people with HBP addicted to Lisinopril? Are asthma patients addicted to various inhalers. Was my father addicted to L-dopa? Of course not. How foolish the think that someone with any disease requiring daily medication is an addict to the life improving or life saving drugs they have available. Can the above mentioned drugs kill someone…YES. People take these and other medications responsibly. Chronic Pain patients too take their medications responsibly. Why? Because a Chronic Pain patient, like the diabetic is a responsible person. He/she knows they have medication and it needs to last a certain amount of days.
    At one time in my life I was on a much higher dose of oxycodone. OxyContin actually. I had a spinal surgery that allowed me to greatly reduce my medication. I had some unpleasant days, about a week where I felt bad because I was not longer taking them as before. I take a much lower dose after an ALIF 360 and a total right hip. My disease is hereditary. I did not ask for it.

  19. Pain Physician at 3:22 pm

    Sadly, the government does not care at all about chronic pain patients. I estimate at least a third of my patients are no longer able to work as they had previously; the feds view you as consuming resources and paying little in taxes currently. The taxes and social security you paid in the past do not matter. This collectivist view of “the needs of the many outweigh the needs of the few” is prevalent throughout government bureaucracies, especially over the last several decades. The money saved by the government by not paying for medications let alone procedures patients may find beneficial costs nothing but the human suffering of their subjects, something to which governments are quite insensitive. They will certainly push for expanding the availability of euthanasia in the future under the auspices of “relieving the suffering” which they have caused…

    Although they will not make prescription narcotics illegal (plausible deniability, you know), the feds will make the life of your physicians whom prescribe them as part of your management so difficult and fraught with personal as well as professional peril that prescribing narcotics will become (and quite honestly, already is) the “third rail” in the practice of medicine. Covertly preformed de facto prohibition of legal narcotics by policy.

    Some of the comments above correctly state “the CDC did not issue rules, they are guidelines”. Yes, guidelines. Those guidelines the DEA will use to target physicians for investigation, those guidelines prosecutors and malpractice attorneys will introduce as evidence in criminal and civil acts against pain docs, the guidelines which will be used against physicians in state medical board hearings. Those guidelines which will, by design, curtail legitimate opioid use…

    I am still in there, fighting the good fight with my patients, treating the individual, not society. I have witnessed many good colleagues leave pain management, having seen the writing on the walls. I have seen others persecuted and their lives ruined by the DEA, et. al. for doing nothing more than caring for those unfortunate enough to have chronic pain. I know that some day- they will again come for me. I will, of course, suffer but that is inconsequential to the misery the federal bureaucrats will indirectly cause pain patients after the demise of me and the few pain physicians left…

  20. Dave at 3:04 pm

    Jean- I agree the worst is yet to come- I saw what happened when NYS legislators overwhelmingly voted fro prescription monitoring program ISTOP- the governor called it “the total package” and told lawmakers to not bother voting for a bill requiring education in pain care. ISTOP, within a year was a disaster as people diverted to heroin- so the overwhelming confidence in the “total package” lead to 12 more bills introduced in the NYS legislature to mop up the mess caused by “the total package”. The CDC sought to disempower people in pain as much as possible and treat them as serfs without rights.
    Just like “the total package” the CDC guidewlines will fail-they will lead to diversion, increased suicides-and even physicians soon enough will see what a poor plan the CDC guidelines are-as it will call for them to use treatments they dont know how to use.
    People in pain should realize by now- government and the health care industry cant get it right when it comes to pain care- they are hoeplessly too far removed from people in pain and stuck on keystone cop like modernistic approaches to pain care. It is both a comedy and tragedy of errors.
    Its time for people in america to take back pain care from our keystone cop government and health care industry.
    I have emailed Ed, a copy of my American Pain Rights Act- written in 2010- which foucuses on rights of people in pain to chose their treatment and better representation in government, fines for providers that discriminate against the rights of people in pain, etc
    It is as different from the National Pain Strategy as it gets- for the NPS focuses on providers determining what access to pain care people in pain will have- the APRA focuses on people in pain deciding what access to pain care they will have. The NPS doesnt give much weight to the voice of people in pain- the APRA focuses on gmaking the voice of people front and center.
    The NPS is about the old guard continuing their control over people in pain- the APRA is about people in pain becoming the new guard in pain care. The old guard has had their day= and they mess up pain care for society-and once again i say the keystone cops in pain care and government cant get pain care right-its time to give people in pain a full and fair chance to get their pain care right.

  21. Steve P. at 11:37 am

    The time for talking is over!

    The time for lawsuits and flooding the courts with lawsuits has begun!

    It is time to start suing the doctors, the hospitals, and the State and Federal governments that choose to systematically torture, discrimination, and murder us!

    We have been going to the media for years, only to suffer negative consequences, as the media turns the pain patient’s stories of a life of agony and misery into a story of drug addiction; misleading the public by making absurd claims that if pain patients would just stop taking their medications they would no longer be in pain and would be able to get on with normal lives! Just watch the following video, this is what going to the media leads too!

    http://www.nbcconnecticut.com/troubleshooters/Troubleshooters-Investigation-Law-Prescription-Medication-Painkillers-318512611.html

    Going to the media DOES NOT WORK and has been a miserable failure for years! The media has declared war against pain patients!

    Make no mistake, the socialists in our society view us pain patients and the elderly as a social burden, to be ignored and extinguished. They see us pain patients and the elderly as leeches, draining their system and preventing them from implementing their plans for a healthy society! They are spreading lies and misinformation to gain popular support, so that they may implement their sadistic and inhumane policies! They fully know that pain patients are dying, either by their own hand or because their bodies just give out! They know the damage that chronic pain causes to the body, the mind, the heart, and the soul! They are using our own bodies against us, so that we will disappear for the betterment of their society!

    Just the other day another one of our friends died from a stroke caused by inadequate pain management while she was in the hospital, after receiving a hip replacement! One of thousands of the same story that is resonating throughout these forums by thousands of pain patients. Another kind beautiful soul, dead before her time because of the systematic torture, abuse and discrimination being perpetrated by the socialists in our society, government and medical establishment!

    Doctors have already begun using the “evidence based treatment” clause of the National Pain Strategy to deny treatment to pain patients, claiming that pain cannot be proven scientifically, as the words of the patient are not sufficient evidence! Even though that very same argument could be used to deny people food, because no one can prove they are hungry until the damage to their body is too great to recover from!

    The time for words is over! We need to begin fighting for our right to life, liberty and the pursuit of happiness! Before more of us are murdered by the systematic torture, abuse, and discrimination! Every single pain patient I know, including myself, has been brought to the brink of death by these sadistic and inhumane policies, just within the last 2 years!

    We need to take this fight to the courts and we need to do it NOW!

  22. Richard A. Lawhern, Ph.D. at 10:37 am

    Jean Price and others: I’ve inquired last week of 10 Facebook groups whose members have chronic neurological face pain. The posting read as follows:

    Wanted — Chronic pain patients (particularly but not exclusively in Tennessee) who have had difficulty getting physicians to continue opioid medications on which they have been stable and well managed for at least six months. I will pass your stories to two doctors who are working with a media producer to generate a program on the effects on patients of the so-called “prescription opioid epidemic” solutions proposed by the CDC in their revised voluntary practice standard for prescription of opioids in chronic pain.

    You may be contacted for an interview on your experience. I addition to commenting on this posting, please pass a point of contact (email address and/or phone) to lawhern@hotmail.com.

    ===========

    I will welcome further notes from people here on the National Pain Report, for forwarding to the same physicians. The following is one of the more horrendous responses I received, but by no means the only horrible story. People are being involuntarily weaned off opioid medications all over the US because doctors are choosing to accept the CDC guidelines as mandatory not voluntary.

    ==============

    Dear Sir, I am from Michigan. I have been a pain patient for 16 yrs. I am 55 yrs. old. My cousin had his meds taken away cold turkey, after years and years of pain from 2 failed back and neck surgeries. He was NOT weened. He was going thru withdrawals, tried to take a shower, he threw-up and inhaled it into his lungs, his blood pressure was sky-high, and he then had a massive stroke. His ex-wife found him 2 days later laying on the floor in his bathroom. In the hospital they put him on life support. Last night the family decided to pull the plug. He was only 56. If he is to live he will be a vegetable. He DID NOT deserve this…None of us do. What are we suppose to do after they take us off our medicine (weening or not)? Our Lives are gonna be Hell. OH…The hospital know that he was taken off his medication, but they insist the death certificate will ONLY say Massive Stroke. This is affecting not just the patients, but our whole families.
    ================

    I’m doing what I can to promote greater visibility for the atrocities being worked against chronic pain patients by the CDC, FDA, and DEA. Obviously, I do what I can do but it’s not nearly enough. Others must also own this public health issue and act in coordination. Thus I have a question for the site administrators and advocates here. Is the National Pain Report registered as a Non Profit Organization which may receive donations to pay for a dedicated campaign of legal action against US government? If so, I’ll donate. If not, then who has gotten serious enough to set up such an organization?

    Sincere best regards
    Red Lawhern, Ph.D.
    Patient Advocate

  23. Jean M at 8:35 am

    The worst is yet to come, folks.
    In Florida on vacation, I had a shooting pain in my neck and head. So, I went to the Mayo clinic e.r. In waiting for the test results, laying there crying and just short of screaming in pain, my poor mother asked the doctor, is there something you do to help her, please?
    The doctor said, “Due to the new CDC recommendations, we here at the Mayo clinic are very conservative in our approach to pain. We have decided to be ahead of the game and have implemented policies that will soon come to be standard for all emergency rooms. We do NOT give pain medications in the er unless the person has been in an accident. We definately do NOT treat chronic pain. She can take one of her regular pain pills.”
    Hmmm…so, he just said alot!
    Obviously, my regular pain pills were not helping or I would not still be in this kind of pain. Second, not all pain pills treat the same types of pain as we all know. My dilaudid helps my chronic pain but has never helped my migraines. (This was different anyhow)
    I was not there for any issue that I am in pain management for!
    Howrver, this e.r. trip was fruitful because it gave me a lot of knowledge, even though I left there in a tremendous amount of pain and with alot of anger.
    I did find help at a different e.r., btw.
    But, Mayo says and I confirmed this with an e.r. nurse friend of mine, that ALL e.r.s will soon stop giving pain medication in the e.r. unless you’re in an accident. Wow. People, we’ve GOT to act before this happens in law and regulations!

  24. Marissa Cole at 8:08 am

    I have to say I agree with Richard A. Lawhern, P.H.D.’s comment.
    I believe too that the best way to proceed from here is to flood the main media outlets with our stories. The government is bought by Big Parma and we all know it. Whoever pays the most gets what they want.
    Every person, at some point in their life has had or will have to deal with some type of pain. Unfortunately, some more than others. When acute pain goes away, the person usually forgets what it was like to live with it. Let’s remind them what it’s like with our stories.
    Send them pictures…
    David Barstow, with the New York Times did a story about workplace safety, OSHA and the Senate sub committee that was in charge of OSHA. He included my brothers story, who was killed on the job. He told us, we have to make our stories stick in the minds of the readers…include pictures so they remember a face because people forget names. Make it real.
    So, everyone, we need a leader, hopefully this organization, since they’re already in place to do it. We need to get our stories together and petition the media to put pressure on the government. Elections ARE coming up!
    I want to share a story of a friend of mine too.
    She lives in Florida and has been in pain management for a few years. She has many health issues that will only get worse with time and will always be in pain. She cannot live without her medication that takes the edge off or she just wants to die because of the pain. She is NOT an addict but was forced into a methadone clinic because of the DEA crackdown in Florida and the horrible result for chronic pain patients.
    Here’s just a few of the many ironic things she saw. The pain management doctor said he couldn’t prescribe methadone because the DEA frowned highly on PM Dr’s giving this as a prescription. Too, he said, she wouldn’t find a pharmacy that would fill it anyways. A few others she knew in other states that had prescriptions for this same medication for chronic pain, not addiction, we’re on roughly 10mg tablets 3 to 4 times a day and we’re told that was a high dose for PM.
    Well, this clinic allowed HER to tell THEM what amount she wanted each day for the first 5 days uo to 50 mgs! She is now on 65mgs a day! After only a month! This medication accounts only for 2% of prescriptions written but for 33% of overdoses! It is a very dangerous medication in many ways. Why does the DEA allow this but takes our legit PM Dr’s off to jail and us on the floor in pain?
    Money.
    That’s it. This clinic only takes cash, no insurance. $16 a day, having almost 13,000 patients. THAT’S ALOT OF MONEY!
    When I took her one day, there was an armored truck escorted by the police, picking up the cash. While I waited, I watched them bring out soooo many bags of cash, I was floored!
    These are the legal drug dealers now! I saw so many people come out, looking high as a kite and get right behind the wheel and drive off! Not to mention the 3 drug deals I watched in the parking lot in 30 minutes! Right in front of this police officer! What?! What is going on here, I said to her! She said half the people there are there for pain management issues but they have to lie and tell them they are addicts just so they can have their pain relieved. This is horrible!
    She said when she signed up, everytime she answered a question and said the word “pain”, she was told, “we can’t write that word in our paperwork”.
    Something really wrong is going on and it needs to be fixed. We are the only ones who really care.
    So, what’s the next step to get this to the media?

  25. Kristine Castro at 7:36 am

    To me it’s a shame that others (who may or may not be living in chronic pain) are dictating to us how we will be treated. What works for someone, nay or may not work for the next person. Pain control should be up to the patient and Doctor. Not someone who doesn’t know us. You see, it’s incomprehensible for people to understand the absolute intensity of our pain. How can they understand how someone can possibly have this much pain all of the time, when they themselves are healthy and have not lived through this pain.
    I’ve read time and time again that the number one cause of death in chronic pain patients is not the medications, it’s suicide. I’m sure each person reading this can relate. We’ve all thought about it.
    Not all alternative treatments help everyone. We all can’t get a massage, or tens units. Massage hurts me so bad I suffer for a week after. Also, tens units only make my pain worse.
    I hope and pray that instead of taking away any quality if life we may have, by taking our medications away, that scientists are frantically working on a cure so we won’t need the medications to function.
    I’d just like to see the government go about this the right way. I’m sorry to say, but they take away our medications because there are so many deaths because of them, what will they say when there are many more deaths because can’t have access to any pain relief.
    Shaking my head.

  26. Jean Price at 6:22 am

    Dr. Lawhern…once again, some great ideas, and I hope our advocacy group is not only listening but really ready to act! I don’t understand what is taking so long for definitive action, since all the letters and visits to congress and websites and Facebook posts aren’t really curtailing the problem or producing results! Perhaps they too have issues of political correctness or funding sources to keep happy. It begs the question! Please let me know if there is anything I can do to further your ideas, I’m reachable through message and email. I also think it would be possible to raise significant funds with little overhead expenditures to use for legal actions, and even start a separate fund for patient assistance when dire financial issues arise from chronic pain. I suggested this earlier and they said they had “thought about it”, but “Patients Not Addicts” said they themselves were working on it and had already approached the Foundation and were told it “wouldn’t work”. I have to believe there are some intra-organizational issues, instead of teamwork! Sad, if that’s true. I don’t think the other group has gotten very far to date with this effort/plan. But I’m not following them regularly.

    Dave…could you email me your pain rights act, or let me know where I can find it? I think many here would like to see it! I am also on message on fb. You have good insight and first hand experience and your comments offer some reasonable paths for our advocacy groups and the rest of us to look at and act on. I am, as always, confused about the lack of overwhelming/concrete action from the various support/advocacy groups for those with chronic pain. There are many efforts yet more of the same hasn’t helped yet, and I am doubting it will. I have a high value for resource sparing and energy efficient actions, and results! I think they have much activity going on, yet it is too fragmented, especially among all the groups. Pulling together would seem a good idea, if those running the show would be able to co-lead, and not want all the power/work/control/glory.. The group “Patients Not Addicts” has similar issues I believe, plus as a health care PR person, their name is an issue for me, since it doesn’t address pain but rather addiction…and that’s what we’re fighting against combining! Lots of good people working hard I. All these groups…yet somehow they are missing making a impact, showing positive results. Another frustration of chronic pain, I guess! I’d also be interested to know if you or Dr. Lawhern hear anything back from this group regarding your suggestions and offers. I wish there was more specific input to address our suggestions/questions in these comments. I often feel like we are preaching to the choir and there’s a whole world out there we could be reaching! And we give our comments into a vacuum! Maybe not, but it feels this way!

  27. Terri Lewis at 3:23 am

    1,000,000 voices acting together as 1 will be far more powerful than multiple messages deteriorating in the echoes.

  28. Terri Lewis at 2:53 am

    I’m going to say something people don’t want to hear.

    People with pain need to stop acting like victims.

    People who have pain must become experts, informed with the best information about the problems they are experiencing, with solutions they can articulate with ONE VOICE.

    Everyone with an ax to grind doesn’t need a facebook group. What is needed is collaboration, and research. Even with limited resources, massing the voices and pocketbooks of persons with pain as a single voice working under strong leadership can make a difference.

    If we want the attention we deserve we must walk the walk and speak like professionals with voices that can be heard.

    No happy? Do something about it instead of shouting into the well and listening to your own voice come back to you. It may make you feel better but it will not lead to change.

    Frustrated? Yes.

  29. wendy at 10:14 pm

    I just wish that the CDC and DEA would disclose where they are getting their statistics for the basis of their new guidelines regarding the ‘epidemic” of drug related deaths and addiction. They say that people are dying from “prescription pills”. Are these meds legally prescribed to them by a licensed MD and retrieved form a legitimate pharmacy? Or are these actually “street addicts” who will take ANY mind altering substances, in any and all altered forms, in search of their next big high. And why is heroin even introduced to the equation? I have NEVER been prescribed heroin, cocaine, LSD or any other “street” drug, by my MD and/or pharmacy. An addict is generally desperate and from the time they have ingested their last dose of “junk”, they are thinking about where they will be able to get the next “fix”. Why not start “reform” w/those folks? What is really needed is better mental health benefits to help get to the root of why the addict is using. Even if the prescription drugs are totally eliminated, those that want/need that high are going to try and grow and/or lab produce any kind of substance that they feel will fill the void. The chronic pain patient is one of the most closely monitored patient. I have a limited number pills prescribed and for only one month at a time. I have to urinate in a cup to have the contents evaluated for compliance. The addict/abuser isn’t having to submit to any of this. The addict probably WILL have a better life if he could “get clean”. The chronic pain patient’s life is going to be in ruins because the only was that most of us can even get out of bed is due to the mild to moderate relief we get for a few fleeting moments, from our legally obtained meds. I am 67 years old and have been dealing w/my pain issues since 1997. I have never OD’d, sold my meds, abused my privilege to have the meds. Additionally, I figure that the average life span these days for me is around 72, or so. So, what am I being saved from/for? Just let me live whatever years I have left, in peace and w/the least amount of pain and government interference as possible. Cigarettes and smoking are far worse habits/addictions and use up far more medical dollars and government funds. They also cause second hand health issues to those close to the smoker. They cause automobile accidents by distracted drivers when they lose the fire from their tobacco device while behind the wheel. Yet, all that has been done to stem that activity that has NO useful, healthful benefits is to put o little blurb on the side of the package from the surgeon general. So, in all fairness–just put a sticker that warns the user of all the peril of the pills in the vial of meds, and let us ne on our merry way.

  30. KrisF at 9:39 pm

    I have been on opioids for years trying to cut the pain. I have an average of 10 to 20 joint dislocations a day. Almost a year ago my doctor found the right dose. The last year I had my life back my kids lit up around me, friends were happy to see me, I smiled. Because of the CDC guidelines and pressure from local government my doctor has start cutting patients meds. He’s titrated me down to about a third of what I was taking. This is no longer living, it’s hardly surviving. I’m angry and bitter all the time, I can’t sleep more than a few minutes at a time from the pain. I’m back to using a cane and parts of my body that have been silent now scream in pain again. I’m so glad that beaurocrats know what’s best for us…😡😡😡😡

  31. Jan Lee at 9:07 pm

    JanLeeHypnosis
    It’s wrong that alternative medicine is not covered by insurance. These interventions can and do help chronic pain sufferers. Please view my YouTube videos (JanLeeHypnosis )
    I’m so sorry what I do is not covered. …and angry that an addict has an easier time getting drugs than pain sufferers getting meds .

  32. BL at 8:58 pm

    A hundred thousand letters from chronic pain patients will never happen because there are not that many not receiving adequte pain management. Look at the number of public comments in those 30 days and most of them were in favor of the CDC Guidelines. The large number needed are just not there.

    The CDC, DEA or FDA has any authority when it comes to demanding that insurance companies cover non medication forms of treatment. Well, they can demand it but it will never go anywhere because they do not have the authority. You need to lobby poilticians and Centers for Medicare & Medicaid Services. Things are tried out on Medicaid patients and if it is sucessful and low cost, then it moves on to Medicare and private insurance. Louisiana Medicaid won’t even pay for pain management drs if you receive Medicaid. And many other states have strict guidelines about what can and can’t be prescribed to a patient with chronic pain who receive Medicaid.

    The Hippocratic Oath is not a binding oath. You also have to remember that when a dr is balancing treating a patient with opiates and the possibility of them becoming addicted, that not prescribing the opiates is more in line with the oath due to the harm they may cause. Like it or not, not being able to function is not as serious as possible addiction. I’m not sure where it states that if there is a medication on the market that patients are entited to it, because that is not true of all patients for every illness and medication.

  33. Edwina Caito at 8:47 pm

    Though the CDC guidelines are harsh, pain patients whom don’t live in Indiana should consider themselves lucky! Those guidelines are soft compared to the Indiana opiate law!! The maximum dosage is 15 MME per day and no more than 60 pills per month. Yes, you read that correctly!! FIFTEEN milligrams. in order for a physician to prescribe more, they and their patient has a LONG list of things they must do to comply such as random pill counts, urine tests, counseling, pulling of ALL medical records for several years. contracts signed and much, much more. The law states that if ANY of the requirements on the list are missed, Indiana attorney general Greg Zeoller (who also assisted in writing the law along with a board of people) he may pull all patients records in the physician’s practice. In addition, the law states that the attorney general may pull all patient records he “there is reasonable suspicion that the physician MAY miss a requirement.” This has sent Indiana doctors into a tailspin, cutting medications off completely, cutting them to the minimum or getting rid of all of their chronic pain patients. it is especially frightening for doctors who work under hospital corporations ( like my PCP) They not only have to worry about losing their medical license because of the law, they have additional pressure from the hospital board as they do not want patient files being pulled and scrutinized. I was on 10 mgs Norco every 6 hours as needed for my pain for several years…..not I get 7.5 mgs twice a day and 59 pills per month. Needless to say, my quality of life has declined and yes, I have been on the brink of suicide. I am allergic to the “protocol” medications for my illness, so opioid therapy is the only thing that works for me and is safe. I am far from being an addict as I have never needed to change medications, nor have I needed my dosage increased. In closing, I just want to warn chronic pain patients that it’s not the CDC guidelines you have to worry about as much as you do what’s happening in your own state! Our law went into effect in December 2013! So when the CDC guidelines came out, I laughed! I could only WISH to have the CDC minimum dosage!! I am trying to learn what avenues Indiana pain patients may have to try and amend the law to EXCLUDE some illnesses that have no cure. As it stands, the only exclusions are patients with terminal illnesses and those under the care of hospice, hospitals and nursing homes. Our suicide rate has gone up and the heroin overdose rate has increased more than 300%. In addition, HIV is spreading like wildfire. So doctors, please be aware. Indiana is crashing and burning and the lawmakers don’t care. They have turned a blind eye to the monster they created.

  34. Paulc35 at 8:35 pm

    I have had pain since i was a child. I also have worked in healthcare for 21yrs and I’m on the front lines. These regulations were to protect the Addict. Laughable. Here’s what happened. Once all PCPs stopped writing pain medicine then sending all chronic pain patients to pain specialist 1 thing happened to all the abusers. We saw the highest Over Dose deaths at any time in history from heroin overdose. Why? Because the addict couldn’t get oxycodone so to street drugs they went. In a 6 month period we saw more heroin over doses than I had seen in my entire 21 yrs in healthcare. Gang I’m telling you something is going on. They CDC is not looking at the increased deaths from heroin use. I did so much damage to my gastrointestinal tract from ibuprofen use from not being on opiods sooner. The problem is that for all these uninformed members of the cdc and congress that think they are doing something good are all healthy. They to will be affected by their own actions taken today when they themselves, or a family member is suffering and nothing is done for them. I don’t know what they’re researching for their statistics, but they are not listening , or asking the emergency rooms of the United States. They say these are guidelines. Hmm. Really? You have scared every physician so badly that even the experts “board certified pain specialists” are standing down. Everyone will pay for this narrow minded thinking. You will cause more deaths than you will ever save from these never ending guidelines. I use to do urine drug screens every other doctor visit, which is every 4 mos. Now very recently urine drug screens are every visit. I know whats next. Bye bye to the only medicine that keeps me off of disability. True chronic pain patients have fewer than 5% abuse. CDC, Congress, Senate listen carefully. You are taking actions that will impact every person in this country including you at some point in your life. Lawyers need to come up with some type of legal actions to pursue rather it be denial of medical care, unconstitutional, the only person not affected is the ADDICT. If you really want to help addicts then pay to send them to rehab gor 6months thousands of miles away fro their home base. Its not the drugs that call them back. It’s their “drug using friends” that are waiting for them when they get home. Put them on parole and require them to get that monthly shot that makes taking opiods pointless. No the government isn’t trying to help the addict. It’s just a cause they think healthy people want to hear.

  35. Mark Ibsen at 8:26 pm

    I just saw a patient with back pain
    No relief from Tylenol
    Or
    Ibuprofen.
    My rx for voltaren was declined by insurance.
    “She has to fail at other modalities first”
    Sent her to chiropractic
    That’s not covered either.

  36. Tim Mason at 7:48 pm

    Complacency is the problem. Complacency has taken over everything from your local fast food chain to Congress. The newer generation in charge works minimum hours per week to achieve their “work-life” balance. I have read somewhere that the problem in congress is they have taken to view “its not my job”, “not my responsibility”. This is why the president has run amuck with his “executive orders” and no one will stop him. The whole world has gone mad. I posted on another thread here of three senators that are recommending that opioids be banned. These are career politician not physicians. What they do or say is bought and paid for by some insane interest group. i.e. Dr. Carome with the consumer advocacy group-PUBLIC CITIZEN. Look this guy up. He is the physician for Responsible opioid Prescribing. He is funded by Phoenix House. Nothing will be done to stop these people until class-action lawsuits are underway and directed at the alphabet soup groups.
    What we have are government groups and scientists getting grant money to do these studies and put out poor, inaccurate statistics. These statistics are picked up by YOUNG, writers for Forbes, Yahoo, and all sorts of other magazines and tabloids. There is no accuracy in media. None.

  37. Sandy Auriene Sullivan at 6:56 pm

    Richard A. Lawhern, Ph.D. -makes a very important and valid point but one we all do know.

    We CPPs are always reaching out to media outlets high and low. From CBS to various blogs, to the CDC and sharing it publicly on social media puts a name and a face on pain.

    Share it in groups, create pages start network locally with community groups. Local news outlets as well as candidate meetings this summer! Local candidates, state reps who have to agree to push for these guidelines to be used within your state. Tis the season.

  38. Deb at 5:14 pm

    It is true that what the CDC has published is GUIDELINES. I’m having surgery on my sinuses next Fri and my doctor informed me that there are new regulations and she is now only allowed to write 5 mg. of percoset for 3 days.
    Most of the doctors are so afraid of having trouble with the government that they are not seeing these as guidelines but as the law. It doesn’t make any difference to these doctors if this is enough to control your pain they are very afraid of losing their livelyhood and losing what they have worked so hard for.
    I have made it a goal to write one email a week to a television station asking them to tell the story of what addiction has done to the chronic pain patient. I don’t think I’m good at writing so if anyone that is good at it would like to format a letter for us to share with the news stations I would really appreciate it. I’m sue there are others that if they had an idea of what to say might join me in writing these emails.
    I think we have to try to use the media like the addiction treatment community has.

  39. Dave at 3:20 pm

    I like Lawherns idea of flooding media with letters and suing government/organizations over poor pain care. Nice polite conversations with governement or organizations in the health care industry are likely to lead to a yawn.
    It is apparent that neither government or the health care industry is a friend to people in pain. They have had many years to get pain care- and their failure is written all over the sorry state of affairs in pain care today. zthey remain unrgenerate and unapologetic. They hold themselves out as blameless and not responsible for poor pain care.
    The time is now to collect money and get a high profile law firm to start suing and get media to take the voice of people in pain seriously.

  40. Jean Price at 3:14 pm

    Tim…they are guidelines but many doctors are treating them as if they were hard and fast rules, especially the general practice doctors and internist who now refuse to treat even long established patients who also have chronic pain that requires opioids. And most pain clinics have reduced patient dosing and increased the use of invasive (non effective) pain treatments, plus many doctors are just jumping ship because it’s too risky for them. What strikes me as odd is that it is even filtering over to the general population and impacting people with broken hips and post surgical pain, even some with cancer pain! But isn’t this how a witch hunt usually works…everyone starts judging others as unworthy?! There was a new post on Facebook last week about an “Out the Monster” campaign directed at stopping “accidental overdoses”, whatever that is! I made a comment about there really being two monsters, one being chronic pain and the need for opioid medication being denied. There were close to four hundred likes and numerous comments of people suffering in just a couple of days.. The site wrote me back and said it was supposed to be to reduce the “stigma of accidental overdose” and they were sorry if that didn’t come across! But they didn’t respond to my request for a definition of this. And who would have guessed they are sponsored/connected with Orexo Pharmaceuticals, and they make a naloxone combination medication to treat abuse! Sort of self serving, isn’t it?! I think they’ve taken their post off, because I can’t find it, or the responses. I sound like a broken record, but again I believe our advocacy groups should form a coalition for strength and purpose, find a nationally known figure to champion us, and look into legal action. My guess is Dave’s generous offer will not even be responded to, so the resources we do have and could muster are unutilized. Most of us, like Carla said, are not able to extend ourselves physically to become effective activists, yet we do make small efforts to educate those we can and show people there is such a different side to this than what they are being told. More of the same isn’t likely to impact the money and power behind the people who have created this bedlam. They need to be held accountable for wrongful deaths and illnesses stemming from out of control pain and too swiftly reduced or abruptly stopped pain medications! If our advocacy groups won’t organize to do these things, we’re hung out to dry, I’m afraid! Which is where a lot of people already are. We need every investigative reporter in this country to be contacted to do an expose’ on the people behind the scene that have flooded money into the CDC and the government, and we need our families…able bodied people to join us, yet unless they are educated, they tend to abandon those who need them most. Such a sorry state. I’m sure we could rate a day of prayer with the church groups, we only have to have the people who advocate help orchestrate these things. We as individuals just don’t have the ummmph! They might if they band together.

  41. Rebecca Smith at 2:36 pm

    it is true that alcohol, which is addicting and is worse than some of the drugs we take is legal to buy in all 50 states for adults. I can find the statistics for this and so can any of the govt officials who are touting that opiates are so bad. I know for a fact that when I was homeless there was only one person out of the 50% of people in the shelter that were on other addicting drugs. Alcohol should be considered a drug, because it is more likely to be overused in our lifetime than other drugs. I wonder do they look into the affects of alcohol like they opiates. I am only angry at this because i have alcohol addiction in my family. I cannot drink i get nausea every time. i have a disorder that just does not like alcohol. it is a metabolism issue for me. It is funny too, cause it affects all kinds of meds and to say i was addicted and act like it is a belly laugh for me. I am sorry but no way. Where are the govt officials who ask people and there are more and those who do not over use any drug at all. It is sad in the end we have to come to this for nothing, but a buck. And to end this…what people are feeling is true. i have been in one pain group and in my own disorder group it is starting to affect us all in these groups. I will state both combined are in the the hundreds to probably 1,500. Is this helping us? Not at all and it is hindering our getting some quality time in our lives. I do not think the govt want to kill us, but they are sure not wanting to help us.

  42. Richard A. Lawhern, Ph.D. at 2:14 pm

    I shall be very surprised if NIH responds at all to the findings reported from your survey. The major problem with your methodology is that your respondents were self-selected from an open invitation survey. It is well known that among medical patients, those who are doing the most poorly are the most likely to respond to inquiries of this type. Thus the doctors will write off your input as “biased”.

    If you’re ever going to have an impact on public policy, then I believe you must greatly increase public awareness of chronic pain among those who do not share the pain experience. Petitions to Congress or the NIH are a non-starter because those organizations are already corrupted by money from Big Pharma and medical practitioners in addiction medicine.

    One way to get better outcomes may be to bombard public media outlets with demands that they tell the story of pain patients instead of buying off on the CDC/FDA propaganda campaign. A hundred thousand letters to the editors of New York Times and Washington Post are likely to get somebody’s attention. Another option would be to build a war chest fund and “sue the b#stards” (to use the title of an old book) for medical negligence and malfeasance in office. If you solicit even ten percent of chronic pain patients in the US and get a ten percent response in donations of $10 dollars each, your fund will amount to $10 MILLION dollars — surely enough to attract a law firm for at least a year of work before trial of the suit. Even a group as broke as chronic pain patients can afford a ten dollar donation.

    Sincere best wishes,

  43. Dave at 12:57 pm

    https://twitter.com/DebHouryCDC Heres the link to one of Obamas dictators who wishes to treat people in pain as Golems. You can see my tweets- that i dont tolerate her antidemocratic, anti-freedom, her Anti American values and practices. Let her and the rest of government involved in this fascist campaign to eliminate the voice and rights of people in pain hear from us. Lets make some noise-we know all they will consider it “vague static” but we need to excoriate their values , their evidence and their alleged right to treat us without any consideration of our values, beliefs, and practices. Let us take back pain care from those who are opposed to people in pain and opposed to American values and freedoms.

  44. Renee Richardson at 12:56 pm

    The stats the CDC is using are severely outdated to say the best. A few other issues besides ins. not covering CBT, massage, acupuncture etc..is they don’t even cover a lot of the meds. So sometimes all we have is the pain meds. My ins. won’t even cover whst they mention as an alternative-naxalone. Also, in my case I can’t take NSAIDS as I’m allergic nor ibuprofen as it acts my ulcers & Gerd up even though I’m on meds to control it. I’m not as most people in chronic pain a patient of 1 disease/disorder but multiple one’s making my pain severe. PT & exercise actually increases my pain. This also creates more people forced to see specialists which is more expensive then there won’t be enough doctors to fill the need. I think initially then maybe twice a yr we should see the specialist but then let the primary dr. take over prescribing the meds. W/tight communication w/the specialist which dr’s SHOULD do to begin with. Every patient is different so to make a blanket guideline for all patients isn’t fair to those of us that can’t even bathe everyday. Then higher ins. premiums, which families are already broken. Husband works for Caterpillar & we still live paycheck to paycheck for just him & I. Increase in medicine co-pays, as well as more disability cases which increases the backlog we already have but also costs US-the CITIZENS of the US more money which will further make us even poorer. I’m also sure that this is another attempt to fully take away our pain control & further would like to see what type of pain patients & how severe their pain is where the CDC got their info from as to how well they work. I also have tried steroids which only barely decreases pain & for just a few days. Injections for my pain (epidural steroid) 3 different times & they did absolutely nothing except for causing my pain to increase & cause me to be bedridden for 4 days & nights. Yes, urine tests & education needs to be monitored & constantly reminders of how important it is & maybe even longer dr. visits every 3 months so theycan better evaluate the signs of overuse & how they’re affecting the patients long term. This is only goingto cost the American citizens more $$$ including those of you that’s so against it that only has minimal and/or no pain yet try to talk for all chronic pain patients. Way to go! The “do-gooders” of the world-good job. Now, don’t complain when you have to pay more taxes etc…& end up poor as well. I might add more $ being taken away for citizens to provide more people food stamps, more people with free healthcare not only taking $ away from the people but also the economy.

  45. Tim Mason at 11:32 am

    These are “Guidelines” and not “Regulations”. The pain specialist can still make the decision to treat with opioids. “Opioids” and derivatives are still in the “toolbox”. The state or has guidelines to go by. It would be interesting to if people are having problems with a certain state.
    If someone has an organic disease, demonstrated by images and diagnostic tests, has not committed a drug related crime or violated the patient-clinic contract there should not be a problem.

  46. Dave at 11:26 am

    I am willing to work with others- including U.S. Pain Foundation, to make the voices of all people in pain count and get all in government, all in the health care industry to hear all people in pain. Our government and health care industry has become too tyrannical and too indifferent to us- and we need to act energetically to restore democratic values and moral decency.
    It is morally outrageous for a government “for the people” to ignore the concerns of people in pain and treat them as if they were not part of our society. There is no excuse for it and it is a violation of not only our social contract but the rights of man(and woman) in society.
    This is the tipping point – and i hope the point at which people can agree that we need to work together to be heard- regardless of our differences.
    As I wrote in 2010- in the American Pain Rights Act- the voices of people remain mute and meaningless and as distant as fading stars to the powers that be- need I say i was right then- as I am today with regard to our uncaring govenment and health care industry when it comes to individuals in pain having control over their care.

  47. Deborah Babcock at 10:08 am

    Doctors have all taken oaths..what about the oaths..doesn’t mean anything ?? How about our rights as human beings,,,it states that if there is a medication on the market available to the people that works for US then we should have access to the said medications..so were not suffering needlessly..

  48. William Halper at 10:08 am

    What frustrates me the most is that no matter how many letters, emails, phone calls people with Chronic pain make or their sympathizers, it is apparent that the CDC and the other powers that be don’t listen simply because they don’t care! An article in USA Today (3-16-16), the CDC urges doctors to “avoid prescribing powerful opiate painkillers saying that the risks from such drugs far outweigh the benefits for most people”. I do take issue with that statement! It is ultimately up to us, the patient, whether the bad outweighs the good. For me, if my nose falls off, my ear starts shrinking, I don’t care at this point. The pain is serious which calls for a serious pain medication. This is invoking fear into both the doctors and the patients who for years have been using this drug successfully for their pain. For many, the alternatives simply do not work, others may find relief with the Lyrica’s, but from my understanding, a small percentage. It frustrates me terribly that the human factor is no longer considered, never asking a person who has chronic pain what they experience, what works for them. Ultimately what I foresee is the black market expanding, more profiteering, and sadly more suicides because of the lack of a strong medication for those with a serious chronic pain condition! As the CDC director Thomas Frieden said in this article, “We hope to see fewer deaths from opiates.” I hope he starts to keep tract of the increase in the suicide rate! This is a very sad and pathetic time now for us as we apparently no longer matter.

  49. Deborah Babcock at 10:03 am

    Is this what our government wants people to do,,kill themselves off to take their burdens away..more people have been positively affected by pain medicine than negative meaning the ones who abuse everything they can get their hands on and end up overdosing..why do innocent people who have no other choices have to suffer..

  50. Deborah Babcock at 9:58 am

    So,if I’m not wrong..all of us that have chronic untreated pain have to live with this pain that drastically affects our quality of life,,,until they all agree On a plan or stop haggling about people’s pain issues and do something about it. How long is this going to take because most if us have lost all our pain medications that take the edge off of our suffering..people have committed suicide..

  51. William Dorn at 9:40 am

    I am 62 years old and suffer from chronic pain.Opiates have givin me my life back.In my lifetime i have seen the goverment claim pot was the gateway drug to hard drugs.Now its opiates.The truth is they cant stop the flow of illegal drugs so blame opiates. These new laws will cause the death of more people than it will save.Please leave pain meds alone and go after the real problem illegal drugs’

  52. Pamela Richards at 9:32 am

    I lost my family and children over my chronic pain. Now faces unbearable depression cause of my children calling me a liar, etc. Sometimes it takes everything for me too continue my life. I have been called a drug addict, by my kids. I also have 9 grandkids I am not allowed to see. My story is a very sad one. CDC does this cause they can. I also have other health issues and I so wish my kids could understand.

  53. Angel at 8:53 am

    Very appreciative of all the hard work advocating for pain patients. These new guidelines are set to cause even more stigma and difficulty accessing and maintaining treatments. Even more worrisome is the discriminatory attitude towards pain patients.

  54. Carla Cheshire at 8:16 am

    Many chronic pain patients are too sick and in too much pain to put a great deal of effort into activism for their cause. From my own perspective I can write a letter or two but I don’t know from one day to the next if I’m well enough to do much more. Why are people trying to take the only medication that works for me (opioids) away? I’m not hurting anyone. My dosage has been the same for 10 years! I’m just trying to live my life as best I can and opioid therapy works for me regardless of what someone else who has not been in my shoes says.

    I believe they have their own agendas. Drug companies want to profit from the widespread use of Naloxone, others to advance their addiction treatment centers, some to make a name for themselves and politicians to win over the public with anti-overdose, anti-addiction laws. For them it’s all about killing the drug, not the problems that brought on the addiction in the first place. They don’t understand that many are helped by opioid medications and that they are living better lives because of them.

  55. Bob Schubring at 8:04 am

    Pain patients would “stand and say…this discriminates against people with pain”, but we’re in too much pain to get out of our wheel chairs, let alone make the trip to Atlanta and inform the CDC why their opioid guidelines are worse than the so-called “epidemic”.

    The Affordable Care Act commands us to pay Insurers for a health insurance policy, but does not require that those insurers pay for benefits we’d actually use to relieve pain. Conversely, insurers balk at the concept of paying hundreds of thousands of dollars on Interventionist pain surgery, and only do so, because of the fear that there is something wrong with cheap opioids. It takes a lot of years to endure a hundred thousand dollars worth of therapeutic massage, and only days to get a hundred thousand dollars worth of Interventionist spine surgery, but right now, the Interventionists have better lobbyists. Insurers provide the spine surgery out of fear of the lobbyists and politicians and bureaucrats (who usually retire young and have lucrative second careers as lobbyists)…then complain that they are losing money.

    The common element to these disparate, battling groups, is that they all claim to seek better health care for people who need it. But because they don’t ask us what actually would make our health care better, they waste mammoth amounts of money and labor, interfering with the delivery of health care.

    Learning to speak up, is a survival skill. When we learn to reach out to other rational minds, our disabilities get a lot less terrifying. I co-founded the #GivePainAVoice effort, to assist people in learning precisely that skill set: How to speak up for oneself and others, effectively.

  56. Donna Ford at 7:58 am

    This is so true. I have a daughter and know other people who live in pain 24/7/365 and yet all of the emphasis on using opioids has been connected with addiction leading to heroin use. Not everyone using opioids ends up being addicted and using heroin. Some need these drugs to function. This isn’t just about patients with cancer or other terminal illness having access to opioids, it’s about having it available to pain patients who really need it as well as alternatives being covered by insurance. I hope the CDC will listen to those who really know what it’s like to live with pain on a daily basis!

  57. Jean Price at 5:53 am

    The issue with the NIH pain report is NOT that there hasn’t been a good enough effort to promote it! The issue is it doesn’t fully address what’s really going to happen and how…and if the proven effectiveness of opioids as an adjunct therapy will be supported! It is cumbersome, wordy, and not definitive enough! I have a hard time believing our government doesn’t know people in pain are not only unhappy but already suffering and negatively affected by the CDC “guidelines” and the unhealthy emphasis on denying opioids to those with chronic pain and acute pain. Definitely our doctors are already impacted! I wish each member of Congress and the CDC and The DEA would come along with us to our Doctor appointments in person….not just be there because of the specter of their restrictions that’s hangs in the air. Perhaps then they would understand the discrimination, the absurdity of what is happening. And the reason… supposedly addiction…is really a whole different issue, so what will they really be doing about that, since heroin useage is supposed to be their target! What started this craziness about pain care, and what will end it? Someone in these organizations need to be held accountable for this travesty and the deaths and emotional devastation and strokes and other health problems that have taken place because of it!

  58. Leigh Peltier at 5:48 am

    Thank you for this. This is just how I feel about the CDC’s new guidelines. Just because I’m a chronic pain patient who takes an occassional opioid doesn’t mean that I’m abusing opioids. I would love to go back to regular massages as I did in the past, but the new economy and my finances can’t afford it. I’d like to try acupuncture as well, but the cost is a burden. We need to rally and continue to rally until the CDC understands that the chronic pain patient isn’t the problem with the opioid abuse.

  59. Tim Mason at 4:18 am

    When you have people like Dr. Michael Carome of the consumer group Public Citizen putting out wrong information things are going to get bad. He is the Physician and chair for Responsible Opioid Prescribing funded by Phoenix House. His proposal is to ban all opioids.
    These Senators need to be on a watch list of evil doers for pain patients.
    Joe Manchin D-West Virginia
    John Barraso R-Wyoming
    Richard Blumethanal D-Connecticut
    I have yet to be affected by any new CDC or FDA “Guideline” but these people need to be silent because they don’t know what they are talking about. They are career politicians that are paid push legislation.

  60. Doug at 3:45 am

    The major problem with the CDC guidelines are that they say that opiates should only be prescribed for post operative pain treatment and for end of life pain treatment for the terminally ill. They stated that there is no scientific research / evidence that proves opioid medications are beneficial to people with chronic pain. Unfortunately when the CDC had their meetings to discuss and implement the guidelines, they didn’t invite a single chronic pain sufferer or a licensed pain management physician to testify on behalf of the 106 million people who actually suffer every single day of their lives. Also the statement about not evidence concerning the benefits of opiates to treat chronic pain is way out of the box. Opium and its present day derivatives have been used to treat pain and chronic pain for thousands of years. Isn’t that prof enough?
    Yes, opiate medications have their dangers such as addiction and possible overdose, but every medication that is advertised on the television has possible side effects including death, that’s why there is always a disclaimer at the end of the commercial. Plus as history has proven, prohibition of a substance will never stop those who desire it and we have already started to see counterfeit drugs that are made with even more dangerous ingredients that have a much higher chance to cause death. People who have addictive personalities will not be the only casualties from these counterfeits. Loosing access to opiates, chronic pain sufferers will start going to the streets and self prescribing. I say self prescribing because without the supervision of a physician, they will dose themselves until the pain is decreased to their satisfaction and that’s very dangerous. Then as we have already been seeing, chronic pain sufferers who have not been able to get their pain relieving medications are committing suicide.
    So yes, I see the CDC guidelines killing more people then they will save. Now it’s time to find out if our government representatives care about their constituents.

    Now the issues about alternative treatments for chronic pain that only work for some and are not covered by most health insurance. So many of us have tried everything from physical therapy to acupuncture, epidural injections, electro theropies, stimulator implants and even those so called non evasive surgeries, that’s why we take opioid medications for pain. I myself have been poked, prodded, streched, electrocuted and cut so many times that when I have to get an IV, if the need ever arose, I could do it myself. I have over $42,000 in medical debt compounded from years of surgeries and failed treatments because I didn’t want to depend on opiates. I wanted to find a treatment that would work for me and keep me working, but instead I ended up worse off then I was before the alternative treatments and if the government thinks I’m going to go through all that agony again, they are saddle mistaken.

  61. Linda Myers at 2:54 am

    The government says that opioid medicationi s too dangerous and that too many people are dying. They don’t want pain patients to have access to the medication that brings relief to thousands. That excuse seems very strange considering the amount of people dying from alcohol and tobacco (many more than are dying from something that actually helps people) yet there is no move to stop people from buying those dangerous addicting drugs. How hypocritical is that? It seems the government thinks we believe anything the media says. Unfortunately people not affected by chronic pain do believe it and consequently support this devastating action. They say we are addicted while they sit there drinking and smoking. This is a nightmare.