CDC Sets late January Meeting for Opioid Prescribing for Chronic Pain

CDC Sets late January Meeting for Opioid Prescribing for Chronic Pain

By Ed Coghlan

It looks like January 28 is the next important date in the Centers for Disease Control and its Guideline for Prescribing Opioids for Chronic Pain.

The deadline for public comment expired on Wednesday (4,012 comments were received).

That’s when a workgroup will present its observations to the CDC’s National Center for Injury Prevention and Control’s Board of Scientific Counselors (BSC).

The workgroup was formed at the public conference call on January 7 to review the draft guideline and comments received on the guideline, and present observations about the guideline to the BSC.

The CDC anticipates the workgroup will present its observations in a report to the BSC at a January 28, 2016 public meeting. There will be 90 minutes allotted for public comment during this meeting. A Federal Register Notice published on Monday about this meeting and it included specific instructions on how to pre register to share public comment either in person or by phone.

After the BSC has considered the workgroup’s observations and makes a recommendation, CDC will review the public comments and BSC recommendation, revise the document, and submit it for CDC scientific clearance.

A CDC spokesperson told the National Pain Report, “We do not have a publication date at this time. The guideline is a priority for our agency. Given the lives lost and impacted every day, we have an acute sense of urgency to issue guidance quickly.”

Here’s the coverage of the CDC January 7 meeting that ran on the National Pain Report.

The CDC reports that health care providers wrote 259 million prescriptions for opioid pain relievers in 2012 and that prescription opioid sales in the U.S. have increased 300% even thought, according to the agency, there has not been an overall change in the amount of pain Americans report.

It’s the abuse of opioids that has been driving the CDC offensive. Its website says that almost 2-million Americans, age 12 or older, either abused or were dependent on opioid pain relievers in 2013 (the last year the data were available.)

Pain advocates have been very critical of the CDC process, believing that chronic pain patients have not been represented in the development of the policy and that the assumption that addiction is the biggest issue have prejudiced the process.

They argue that legitimate use of opioids for pain relief is being compromised.

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Authored by: Ed Coghlan

There are 34 comments for this article
  1. BL at 9:35 pm

    Pat Harrier, how was it determined that the opiates were the reason you passed out at the wheel ? Unfortunately, because new drs want a copy of your medical records from your previous dr, I doubt that you’re going to find a dr that will prescribe you pain meds for libality reasons. Have you gotten a copy of your medical records and read them to see exactly what your pcp wrote in them ?

  2. Scott michaels at 10:12 am

    every state is different, but i would contact every pain management doctor within 50 miles and give him all of your documentation OR CALL YOUR INS. CARRIER AND tell them the policy you have is supposed to cover painmgt and have them refer you to a dr.
    some state like WA are impossible. in that case I would move. but thats m. i wouldnt live with the pain i had before opioid therapy

  3. Pat Harrier at 9:28 am

    I am a chronic pain sufferer. Because I was in an accident where I passed out at the wheel (luckily noone was hurt except me), my pcp at the time took away my prescription opiates and discharged me from his practice. They did a blood test at the hospital and I tested ok, yet I had to go through major withdrawals as he would not even wean me off. I never abused my medication, give it to anyone, etc. I haven’t been able to get any sort of pain medications in almost 2 yrs. I suffer greatly, my quality of life is nill. I stay at home sometimes not even getting dressed for the day because of the pain. Now the CDC wants to make it even harder to find pain relief and have some sort of quality of life I have done pain clinics, shot, physical therapy, etc. but none of those treatments worked. I am tired of being home bound. I also have been rendered disabled by the SS/Medicare administration. I didn’t need a lawyer to be granted SS Disablity and Medicare. My records spoke for themselves. I am at a loss on where to go to receive my medication and try to control the pain I am in (Car accident in 2007 and work related accident in 2010) I have had back surgery, however the surgeon that did the surgery ruined my back even more. The hospital escorted this surgeon out the door 2 days after my surgery. The further damage that was done is not repairable. Please make easier to obtain pain medication for people who have been rendered Disabled by the SS Administration. Putting more restrictions on pain medication without taking into consideration the chronic pain issue.

  4. Sherrie Harris at 4:03 pm

    Even if he does have his son to help him do all that does that mean just because he has help that he shouldn’t be able to get his medicine that’s helps to? And no when it comes to a controlled drug you have to take care of it especially if you are able to speak
    If everyone looked at this issue like you are thru our wonderful government does there would be alot of dealths due to suicide from not being able to take it anymore because we do not abuse nor misuse our medications. That’s the difference between a true chronic pain suffers and drug addicts.

  5. Jean Price at 10:54 am

    In looking over these newer comments, I see the frustrations and anger of those who feel their quality of life will be reduced if the CDC does not hear their issues. All of this revolves around appropriate prescribing guidelines for opioid use for people with chronic pain. Is this really so difficult?? Or is the difficulty for the CDC trying to combine appropriate prescribing with prevention of opiod use for addicts. Again, two very different goals!! Unless these are addressed singularly, how can either group have what they need?? I want to be more productive, more able to care for myself and even others, more a part of my community and family and social network. An addict wants to escape reality, to use their energy seeking drugs that will help give them a false sense of euphoria, and to withdraw from society and community and family. Not at all the same issues as I have! Have any addicts written in to implore the CDC to make their lives easier and more productive?? Have any addicts complained about the humiliation that comes with needing a prescription for their drugs? I think you see my point!! Separate the two with different guidelines….or risk giving neither what they ultimately need. Addicts will find ways around any restrictions, and people with pain will not have the energy or health to play by a poor set of rules to receive the medications they need. Two sets of guidelines that serve the best interest of first the patients in pain, and then the physicians, and then those who would abuse drugs. You don’t lack the intelligence and dedication to do this…you just need to step back and realize these are not the same problem. We’re counting on you to realize this, and there are probably more of us than those who would abuse their medication. Thanks for seeing the whole picture!

  6. Valerie at 8:41 pm

    Oh one thing I didn’t say is that I categorically thinking someone needs to be done about the problem of addiction in this country. However I view addiction as a symptom of a much larger disease nor the disease itself. All I know is that making EVERYONE’s life more difficult it NOT the solution to the problem. It can’t be a blanket treatment anymore then ANY treatment for any disease can be. I also know that those who are addicts will ALWAYS find a way to stay addict unless you treat the underlying disease. However those moral good citizens will jump through the hoops in order to try and get treatment no matter how emotionally distraught it makes them, which I have to point out is the last thing someone who is in a lot of pain should be made to do since the more distraught you become the more you no longer can mentally handle the pain your in. It would be a offense against the Hippocratic oath that all doctors took! Chronic pain eats your at mind if you let it because you NEVER get a day off from it and it NEVER goes away. You also have to remember that a good person is also likely to be embarrassed that they even need help (I know I am!). Adding the word addict thrown around too liberally and the condemnation that going along with the word won’t be helping ANYONE get better only worse!

  7. Valerie at 8:21 pm

    I normally don’t allow myself to get caught up in this sorta thing even though it directly impacts me. Since I am lifelong vegetarian who is “healthy” looking and has never been overweight NOR have I done ANYTHING harmful to my body outside drinking a couple beers and smoking a cigarette or two in my whole lifetime. I’ve also never broken a law bigger then going a couple miles over the speed limit. I also love science and was on my way to completing a Ph.D degree in Virology for the express purpose of actually working for the CDC. However my whole life changed in a blink of a eye when I was in a car accident that nearly cost me my life and did cost the guy who hit me his. Unfortunately I’ve never gotten better from the car accident since I was finally diagnosed 6 years later with Reflexive Sympathetic Dystrophy which pretty much means I got hurt and while my body healed my brain didn’t get the message and it still thinks I’m hurt. While in the beginning it is restricted to the part of the body that was injured the longer you don’t get PAIN MEDICATIONS and very strong ones at that for an extended time period the more PERMANENTLY it’ll damage you. You’ll lose the ability to move and use your body and slowly your entire body will be affected leading to the worst pain possible that the human body can endure. You heard right it worst in CANCER or even getting your limb CUT off! Sadly, if I got treated immediately I would have had a great chance of being cured. If you wait there is NO cure nor is ANYONE in the United States even trying to cure it. I’d literally be better off living in Brazil since there their actually trying to cure long term sufferers. However since I was raised in a family who didn’t go to the doctors office if you didn’t have at least a broken arm and even then you’d only go to the doctor 3 days later when they could put a cast on. I was never treated in fact the hospital never even did a CT scan of my head till 2 years later. Even though I told them 4 different birthdays because I could remember anything nor could sit up without blacking out since my skull shaped had been changed and I had a TBI. However since I couldn’t communicate what was wrong or even what happened they never stopped to look. That was when I figured out that A: Doctors don’t have your best interests at heart nor do they care about you in ANY way they just want to get the job done as quickly as possible. B Unless you communicate EVERYTHING and I mean everything they will miss what is right before them especially if it isn’t something they are used to seeing. However of course few doctors will even take the time to listen to their patients for more then fifteen secs. (Which is why the true responsibility is on the doctors to not prescribe to those who are abusing the system. However making the system more difficult will ONLY punish those with ACTUAL pain since true addicts will just find a easier way to get high and go buy illegal drugs. Law abiding citizens will just end up in the hospital costing the system even more then before. Since when I get bad I end up being in hospital avg of 5 days and the cost is more then 20,000. Times that by a couple times a year if not more!) C: doctors don’t have time to study up on the best ways to help their patients and while NOT using drugs. Since they tend to have to be spending that time learning about all the new medications that are coming out plus they might know what they are looking for. Which is why drug reps are always courting doctors and steering them. If that wasn’t bad enough now magazines advertise meds so that patients will come in asking specifically for certain medicines. Making it that much more difficult to get a patient to try something that might be slower acting at take alot more effort for the patient then buying then popping some pills. We are a nation of people who are used to spending 6 billion of weight loss pills instead of just eating less crappy fast food (which doesn’t actually mean eating less just less crap.) So to the CDC I say why punish the victims instead of the criminals? If you want to change things it would be way better to inform doctors and make them take classes in diet, natural remedies and ANYTHING that someone at home in pain could do to help THEMSELVES! Because believe me this system is getting to the point where I don’t believe in the health system at all. You don’t turn away people in need! Nor do you make it more difficult for someone to get treatment! It like saying to someone with Type I diabetes “well if you would just eat healthy and exercise you’ll be fine!” Now does that mean they CAN’T do anything but take medications?? NO!!! It just don’t mean they can NOT take medications and be fine! Put it this way if you plan to not allow me the ONLY treatment I have available PLEASE find the cure first! I’d kiss you on the lips and jump for joy and more then happily throw my medications away and NEVER take them again!!!! I can’t even express how much I’d LOVE to not be dealing with pain so great that NOTHING helps it more then just slightly. Pain so great I CAN’T function normally even with medications. Pain so great that from the moment I wake up I spend every second of every day trying to figure out how to HELP decrease the pain myself. From using a Far infrared bed, helping in clinical trials, to Epsom salt baths, herbal teas, eating healthy, trying to exercise any way I can, but above ALL else learning mentally how to cope with pain and how to be a mentally healthy as I can be! I’ve literally been genetically tested to see how likely I am to be addicted to opiates and was found that number 1 no pain meds really help my pain a ton hence the fact I’ve never even had a slight sensation of being high EVER and number 2 there are fewer people in the world that could be any less likely to be addicted to opiates then me! How about we treat the illness NOT label those who use pain killers as “addicts”. Does anyone at the CDC understand how horrible it is to have to try and hide the fact that your sick and HAVE to take opiates because of public perception ? How everyone constantly second guesses the amount you might need and they aren’t even your doctors but your family and friends?! Or how it feels when your in tremendous pain and go to get a script after being in another car accident but with RSD this time and the pharmacy tells you that they won’t fill the script but won’t tell you why? While all the time knowing that even though I know categorically that I still NEED opiates and will keep needing them AND my risk factors of addiction are super low that, that information will not inform the CDC or other governing structures from making my life living hell (literally) in order to save me from something I don’t even have! I’ve jumped through every hoop, taken every drug test, paid for tests I don’t need or make me worse to fulfill the directive, seen my doctor monthly while having her not covered by my insurance etc… So to think of them adding even more challenges makes me want to give up. Since apparently doing everything perfectly right doesn’t help me in fact it does the opposite since stress is my trigger for my immune system to flare up and attack me nerves so not only does this sorta thing make me worse rather then better but it literally causes me to lose nerve function that I won’t EVER get back!! (This fact I figured out a whole 2 years before science knew about it!) However through all of this I refuse to just be a victim because victims can’t do ANYTHING to change what is happening or has happened. Instead I spend my time learning everything I can to help myself and then systematically do clinical trials on myself to see what might help and what might happen. Because hey at the end of the day I’m a scientist!! 🙂 However that person the CDC doesn’t see because they only thing I am to them is a long term opiate user.

  8. BL at 4:53 pm

    marty, I’m looking at it from the governments point of view. Does your son also help you bath and get dressed ? Does he prepare your meals ? You are Blessed to have someone that lives with you to do the things you can’t do and to help you with the other things. I just saying that exaggerating when addressing the CDC and other goverment is not to chronic pain patients advantage. Would your son be willing to get involved in a demonstration like the one Scott michaels mentioned in Atlanta ? hances are you don’t live in Atlanta, but would your son be willing to be involved in a demonstration where you live ? The reason I ask this is because if you can’t get involved, if pain meds access is that vital to you, your family should be able to be involved ? The number of comments to the regulations.gov website, against approval of the CDC Guidelines, is a very small number compared to what it needed to make real change.

  9. Dorian W at 2:05 pm

    regarding the doctor in GA being raided. See that is an issue even to me. Those psycologist or any other mental doctor has no reason to write an pain reliever medication. anti depressants and similar are fine. They have not been trained in actual main mgt. I believe PCP, ER, AND PAIN MGT DOCTORS ONLY SHOULD WRITE THEM AND ONLY ONCE TRAINED TO RECOGNIZE THE DIFFERENCE BETWEEN A DRUG SEEKER AND AN ACTUAL CHRONIC PAIN PATIENT. YES A PORTION OF PAIN IS CREDITED TO THE BRAIN, BUT THEN REFER THE PATIENT TO A DOXTOR THAT CAN SERVICE THE PATIENT FOR THE LONG TERM. PHARMACISTS SHOULD KEEP THEIR MOUTHS SHUT AND JUAT FILL THE PRESCRIPTIONS UNLESS THE PERSON APPEARS ON THE DATA BASE AS A DOCTOR SHOPPER. IN THAT CASE NOTIFY THE DOCTOR AND THE DEA. THERE ARE AT LEAST 20 MILLION OF US THAT DO THE RIGHT THING AND OUR DOCTORS DO AS WELL. 1 BAD DOCTOR IN GA. OK HOW MANY PLASTIC SURGEONS DO UNNECESSARY SURGERIES THAT GO BAD. HUNDREDS IF NOT THOUSANDS. THEN THAT PATIENT NECOMES ONE OF US.
    YES SOME THINGS NEED TO CHANGE, IF THEY WANT TO TRY A NEW METHOD WITH ONLY NEW CHRONIC PATIENTS FINE. BUT IF THERE ARE PEOPLE THAT HAVE BEEN ON OPIOID THERAPY FOR A YEAR OR MORE, THEN THEY HAVE GONE THRU THE GAUNTLET OF OTHER METHODS TO ALIEVE OUR PAIN AND THATS WHAT BROUGHT TO WHERE WE ARE. SO AS A SUGGESTION ALL PATIENTS
    THAT ARE DOING FINE WITH THEIR DOSES FOR OVER A YEAR, LEAVE THEM BE. THIS WAY IF THE NEW PATIENTS ARENT HELPED WITH THE MIN DOSES OR THERAPIES YOU CAN ALWAYS ADD MORE. YOU DONT WANT TO CREATE A POPULATION OF SUCIDAL PEOPLE LIVING IN CRAZY PAIN OR ADD TO YHE STREET HEROIN USE. WE UNFORTUNATELY BELIEVE MANY PEOPLE WILL RESORT TO DRASTIC MEASURES IF THEIREDIXATION IS DRASTICALLY REDUCED OR REMOVED. IT IS ALREADY HAPPENING IN STATES THAT HAVE KNOWINGLY PUT PEOPLE IN THAT POSITION. SUICIDE AND HEROIN DEATHS HAVE GROWN 10 FOLD

  10. Heidi Therrien at 12:30 pm

    I have had cyberknife, stimulator alternative treatments. These treatments didn’t work for Trigeminal and Occipital Neuralgia. The opioid so barely touch it but they do enough so I am still alive and functioning. Never once abused it as pained that I have. As usual government works on a symptom not a solution because it the lazy man’s solution.

  11. Richard Oberg M.D. at 12:13 pm

    Dave wrote an excellent comment on the 14th responding to Mavis everyone should heed. I’m taking a different approach also. Lots of people’s anecdotes aren’t going to change or move a group of people who wouldn’t listen to them in the first place. I am one of ‘them’ and can tell you the notion that empathy can be taught (especially to highly competitive overachievers who enter medical school) is largely nonsense. We had an ethics course added to my basic science classes (first two years med school) that everyone thought was a complete waste of their valuable limited time but for different reasons than me and for my same reasons as the false teachable empathy notion. Does anyone really believe that people already two decades old (or more) can significantly change this part of who they are by taking a limited course they don’t view as relevant? People don’t really understand how this process works and I admit to being initially naive also. In college there’s a pre-med group who are mostly aware of ‘the competition’ which I detested and never declared as such considering engineering, etc. but was in many of the same classes they were and my best friend was always pre-med. Individuals strive for the highest GPA to exceed the competition for limited med school slots. I was under the false assumption that once you got accepted to med school this childish behavior would cease – only to see it get worse. Med school becomes even more competitive for choice residency slots in limited supply. Now who in their right mind would think this process selects for highly empathic/ethical people??? The latter is by pure chance alone and despite the seeming high level of medical organization, most physicians at heart are lone rangers who do what they want unless forced to do something different. When I hear what lay people think about this they’re mostly wrong. The reason you hear most patients want to keep their primary physician is because they’ve already vetted some really bad ones or heard about them through friends or insider connections like me. Why otherwise wouldn’t they be perfectly happy to see just anyone??? The longer most physicians have been in practice the more resistant to change they are. Believe it because it’s correct. This is an uphill battle but it’s necessary to understand underlying assumptions to achieve political gains we all desperately need here.

  12. Justine Saine at 11:55 am

    Speaking of bogus numbers Scott, just yesterday (great timming too may i add for the upcomming meeting!) a doctor in Jonesboro Ga. was raided, the headlines being “36 patients dead!” Then mentioned only 12 autopsies found that medications (mixing) were the cause! Ok now I know this Dr. shouldn’t have even been writting for pain meds, his secondary specialty is addiction of all things,this psychiatrist may i add if you go beyond the first few pgs if google youll find back in 2010-11 were a congressman or representative had sent letters to other officials asking them if they knew the numbers on per dr and per med and per cost who were the tip ten prescribing drs.,well this dr.s name came up most,just about all the list. And most werent even pain meds at that! How he thought he could get away with such indecency is beyond me! I also found two seperate year addiction conference handouts that included him as being in attendance and these were to efucate dr.s on addiction,how mixing benzos with opiates were terrible,other subjucts dealing with his field and pain mgmt. Calling him out as a certified addiction specialist! This story is crazy,esp since that one were the letters were sent out (top 10) an answer to the author stated,yes we thank you for pointint out,etc,etc,and weve taken steps and 7out of ten have been fired,and we just got a computer system hooked up with the dea,yada,yada bet next year you wont see them.in the report! And the main offender…a psychiatrist, is what 6 yrs later just being taken out by swat yesterday!!! Wow!!! And after reading some stuff on here about how google mkes it worse by what they show for searches and how the media makes it worse by outrageous numbers….hmmm well 36 deaths..but only 12 are found to be directly because of medication(s)! I wonder are they speaking over his whole career as a dr.? Which is about 36-40 yrs! And made it sound like patients of dr.s never die when those are the sick,in pain,diseased,etc. & yes the ones who die probably before someone who didnt see a dr. at all!? Im just astounded! Im not in anyway defending this guy,or trying to lessen the severity of grief on loved ones of those who did die in his care…not at all! Im just astounded by the headlines,the way they make it out…Dr.Death! OMH! I also wonder in the follow up to this headliner yesterday..are they going to let the world know what exactly the other 18 ppl who died while seeing him (the ones that didnt od,or die from medication issues)!? And isnt just perfect timming!?

  13. Sherrie Harris at 11:37 am

    Dave,
    Thank you for taking the time to answer my question. Thank you for explaining that to me. It’s totally my life. It does effect my family and me being a wife/partner Mother and Grandmother. Thank you. Maybe our voices will be heard. I am hopeful that the change is going to be good. HOPE.

  14. dave at 11:03 am

    Sherrie- If I was a person with pain and wanted to influence opioid guidelines, I would focus on how the treatment burden of finding a doctor, a pharmacy, and a udt, and refills takes away from my job, my being a wife, a mother, working, etc. Explain how treatment burden interferes with being a productive and a contributing person to society. I would not focus on how access to opioids prevents me from suicide, or even eases the pain. Focusing on how opioids alleviates symptoms makes it sound like the person may not be interested in functional recovery. So frankly, as candid and open as some of the comments are. they, in my opinion will not be well-received. Explaining how a lower treatment burden with regard to access to opioids saves money, time and improves the ability to be a wife, employee, mother, etc will be better received, in my opinion.

  15. Scott michaels at 10:59 am

    I ACTUALLY TOOK THE TIME TO READ ABOUT 1500 COMMENTS ON THE REG.GOV SITE. ITS APPEARANT THAT WE ALL SUFFER FROM EXTREME PAIN, THE PAIN IS NOT GOING AWAY,, WE WILL HAVE THIS AND MORE INTENSE PAIN UNTIL WE DIE AND THERE IS ONLY 1 SOLUTION THAT HAS DIMINISHED OUR PAIN, OPIOID THERAPY. WHETHER IT IS 4 NORCOS A DAY TO 3/80 MG OXYCONTIN AND 6 OXYCODONES A DAY, THAT IS WHAT WORKS FOR US TO FUMCTION AND HAVE A RELATIVELY NORMAL LIFE.
    I READ THAT WE ALL TAKE OUR MEDICATIONS AS DIRECTED FOR THE MOST PART AND NOT ONE OF US USE OUR MEDICATION RECREATIONALLY. THE MEDICATION FOR US, DOES NOT GET US HIGH. IT ONLY DULLS THE PAIN, EVEN FOR THE HIGHEST DOSE PATIENTS. THE ONLY SIDE EFFECT THAT SEEMS TO BE PREVALENT IS CONSTIPATION. A SOFTENER OR MILD LAXATIVE. THAT SEEMS TO WORK FOR ALL OF US. OTHER THEN THAT I CAN NOT SEE A REASON FOR THIS ABUSE THE CDC AND THE GOVERNMENT HAS PLACED UPON US. THE VOICES OF THE RELATIVES OF JUNKIES ARE BEING HEARD, NOT OURS. AT THIS POINT IT WOULD BE NAIVE OF US TO THINK ANYTHING WILL CHANGE IN OUR FAVOR.
    THE ONLY WAY TO BE HEARD IS TO MAKE A STAND. HOW TO DO THIS I DONT KNOW. I WOULD LIKE TO THINK WE COULD ALL GATHER IN FRONT OF THE CDC AND PICKET THIS ENTIRE OBSCENE SITUATION. THEN THE MEDIA WOULD COME OUT AND THEY MUST RECOGNIZE US. IF THERE ARE A COUPLE OF HUNDRED OF US IN WHEEL CHAIRS, WALKERS, BRACES, CANES OR JUST THERE ALONG WITH OUR ADVOCATES AND SIGNS SAYING WE’RE ALIVE AND WE MATTER ETC. I know its probably too much to ask, but if we want to continue to recieve our medication without interruption, to let people know we are tired of being judged, we are tired of being made to feel like a junkie and to let them know just because they cant see our pain, we can, and its not pretty. Any suggestions or thoughts let me know. I believe the cdc is in atlanta, maybe on the 28th of january, local pain patients can do sometging, however we have time to do something on a larger scale for the following workshop meetings.
    WE JUST CANT SIT ON THE SIDELINES AND CROSS OUR FINGERS AND HOPE THEY PAY ATTENTION TO US.
    SHOEHAUSE@GMAIL.COM

  16. Sherrie Harris at 9:39 am

    Dave,
    How or what can we do or say to change this? Believe me that I wish I could turn back time to where I lived a life without chronic pain and having to take medication for this horrible disease. One in which I have is Fibromiligia. It’s not my main sorce of pain because I have 4 more diseases. Please tell me what I should say because other than expressing the horrible pain and not having a quality life.

  17. Sherrie Harris at 9:24 am

    Hey its Sherrie Harris.
    I have already commented about yes they do better control for pain medication to not get in the hands of people whom do not have a real chronic disease / condition to be on these Meds. My question is to everyone;
    Has your Doctor told you that you can only receive a 28 days supply of medication? This is causing me problems because I am having trouble getting it here on time. I use our Insurance company pharmacy because of how they treat and talk about you like you are a drug addicts just seeking a “high” . I don’t know about all the rest but I feel nothing off the medicine except for dulling the pain. No ephora. Haven’t had any ephora in my life in a long time. So again how many have been told that you are only able to get a 28 day supply of medication? ??

  18. marty at 3:27 am

    For the most part the comments are right on. Some people actually don’t have a clue so I wonder what they really think chronic pain is. Such as this comment “As for all of the people that say they can’t get out of bed without their pain meds, if this were true, the nursing home population would sky rocket. That is just another thing that makes chronic pain patients look like they are exaggerating their pain and their need for pain meds.”
    Without going into my story I will say that for the last 3 years I am one of those who can’t get out of bed. I call to my 22 year old son generally about 2 am and he comes to help me with my walker, gets me the 10 feet to by bathroom and then to a chair Then he brings me coffee and heads back to bed while I wait for my meds to kick in. I worked until I was 60 in a lot of pain but not like I am now. First off I don’t want to go to a nursing home and I guess you are unaware of how hard it is to get into one on medicare. Pain pills leave me the option of staying in my own home if only to do the simplest tasks. But it means I am still alive and with people I love. Without pain pills I would surely still be in bed screaming at every movement like I was for a year. I am not a addict. I am a human being with chronic pain who only wants to be heard and live out my life in less pain.

  19. Michelle at 8:16 pm

    I am so greatful that I’ve had the privilege of being a part of this uprising.
    I’ve suffered with chronic pain going on 20 yrs now. However my treatment of
    pain meds began 18 yrs ago.
    I have RA, OA, fibromyalgia, nerve damage from Shingles, herniated & degenerative discs in both my lumbar & cervical discs. I also suffer with carpal tunne, & IBS…….
    I’ve never understood how one body can suffer so meny ailments. So meny painful ailments. Just about the time I began to except my destiny the rules changed. Now I have to prove that I’m sick via contracts & drug testing. As if being sick doesn’t keep me poor enough. If the lack of compassionate care doesn’t kill me First, the cost of these new rules/attitudes will.I hate being sick, I hate how society looks at me for having chronic pain.
    I also hate that drug addicts seem to be writing my script for treatment. Rather than compassionate care professionals. And I was under the impression that law inforcment was a friend to the disadvantaged. So why is the DEA & other government ranks dictating my Dr’s appts?
    Ok I’m done ranting. I agree with Michael, we all need to ban together & protest when the CDC meets again on the 28th.
    That will surly get the attention of the media. And give us a greater voice to be heard.

  20. Patricia Johnson at 7:03 pm

    Prior to an accident in 2006 I lived a healthy, active life. I worked full time, raised my daughter on my own and performed all the chores that are associated with being a home owner. I was the happiest I had been in my life. All that changed in May of 2006. My spine suffered multiple injuries including spinal cord compression, multiple herniated disc and it exasperated issues I never knew I had: spinal stenosis, degenerated disc disease, scoliosis, spondyolisis and other debilitating conditions. I went to several different pain clinics, physical therapy, aqua therapy and when all failed I was final deemed totally and permanently disabled. It was devastating. The life I once enjoyed was no longer. After numerous attempts to manage my pain issues with a multitude of prescription drugs being tried, my Doctor finally found the right combination for me. I did not want to be high. I did not want to be drowsy and incoherent. I only wanted relief from the nagging, constant pain that I lived with. Walking was impossible without holding on to and leaning up against a cart. Laying down didn’t help, nor did sitting. There were no comfortable positions. I contemplated taking my own life. I only didn’t for I did not want my young daughter to be alone and have her memory of her Mom to be tainted with the questions and sorrow of “why would someone do this?” I am not an addict. I do not get high or abuse my prescriptions. What I am is able to try to manage my pain and occasionally have a somewhat normal day. Even so, when I have a somewhat “normal” day, I try to take care of my home…nothing big….vacum, dust, dishes. The next few days I am not able to do much at all. But, at least I had one day. When the CDC changed the law, making me pick up my prescription monthly from my physician, it created such a hardship. My doctor is 35 miles away, (I live in a rural community). In the winter, roads can be impossible and I stress about driving in those conditions. Our lives are already so difficult, beyond your comprehension. I’ve thought of moving to a better climate but fear that the stigma of being a pain patient would leave me unable to find a physician who would take me as a patient and if I did find one who would accept me, will I be looked upon as a drug addict? I am 63 years old. I’ve never abused alcohol or drugs. I rarely took an aspirin prior to my accident. I understand you are concerned about those who DO abuse these medications but please do not lump all pain patients in this category. These medications are necessary for us to have some quality of life. Please. Do not take that away from us. We are not addicts. We truly suffer from debilitating pain.

  21. BL at 4:39 pm

    dave, I agree with a lot that you said. It does chronic pain patients no good for some to threaten to commit suicide if they can’t get their pain meds. All that does is strengthen the point of view that those that take pain meds are weak and think they have to have their pain meds to live. Like it or not, not having pain meds is Not a cause of death on a death certificate. If not havng pain meds was a big cause of death, there would be info to back it up. Explaining how pain meds allow you to continue to work, clean you house, care for your children, etc is productive.

    As for all of the people that say they can’t get out of bed without their pain meds, if this were true, the nursing home population would sky rocket. That is just another thing that makes chronic pain patients look like they are exaggerating their pain and their need for pain meds.

  22. Dave at 12:24 pm

    Melvis- Doctors, who will be reading the comments from people in pain are taught to ignore and suppress their own pain. (Many studies of orthopedists and emergency room staff are evidence of such).And so I think they will shut down when reading some of the comments that focus on the suffering from people in pain and will not hear the message that people in pain wish to convey. Instead, doctors who are very industrious people will likely see those comments not in a compassionate way. I’m sure you know the biggest complaint “patients” have about medical care is lack of respect and not being listened to. So why should the doctors and other folks be the exception to the rule? Some pain care orgs have made as their goal getting society and doctors to understand that pain is real. And don’t we know Lyme disease and fibromyalgia are still considered contested illnesses and that women with migraines are labeled menstrual or going thru menopause- just like men with back pain are seen as malingerers.
    One of the goals of pain care education for primary care physicians via the soon to be released NPS is to teach them to be empathetic and to understand peoples pain-and so if we had doctors who were empathetic- if we had doctors who read the comments by people in pain at the CDC- there would be no need for the NPS to call for them to have such education to improve their empathetic skills.. Ill give you some proof- the concept of “catastrophizing” is a pejorative many pain specialists use in describing people in pains’ communications. In fact you can go online to pubmed or to PCORI to see how the government pays for research into “catastrop[hizers”. I have spoken out against the use of such pejoratives when referring to people in pain.
    In Dr Scott Fishman’s book on communication and pain he write of how some seasoned pain specalists being inured to the voice of people in pain. And so from my point of view, people in pain who commented- maybe expecting water from a rock to expect that the CDC will be sensitive to their suffering. I think I know well that the dried voices of people in pain remain mute and meaningless and distant as fading stars to government and the health care industry-and as I am the author of the American Pain Rights Act and 3 pieces of legislation in NYS to require education in pain care- I believe I am doing my share to enlarge the voice of people in pain and improve the sensitivity of health providers. As Dr Biro wrote- as long as the conversation lasts- their is hope for people in pain- I included that in my comments to the CDC, as well. But people in pain need to understands- who wish to be heard- need to understand that what they communicate may not be what is heard by government and health care providers.

  23. Christina at 12:20 pm

    There are so many chronic pain suffers out there that don’t know the CDC is doing this. They won’t know till they go to fill a prescription that something has changed if their physician do not tell them. I don’t understand why more physicians aren’t doing more. They are the ones that will be the most effectived. If we don’t stay on top of what the government is doing they will TAKE ALL OUR RIGHTS AWAY. Then they will MAKE US FIGHT TO GET THEM BACK…
    I didn’t get to comment on the CDC but from what I read I didn’t see anything about metabolism the way the body break the medicine down everyone is different. DNA and how heritity of diseases are passed threw to their children. I think the overdose numbers are not accurate. I think it was a lot easier to say that’s why the person died but had multiple types of drugs or alcohol in their system. I think the DEA let it get out of hand just to get the control over it. I think using numbers from 2012 is ridiculous and should be numbers from last year.

  24. michelle at 12:16 pm

    Why?? Why are they even going to change it? All this will do is make it harder for us pain patients to get what we need to b able to have somewhat of a normal life.
    Me, myself have thought about suicide because sometimes the pain is just to much to handle.
    I have to go to the Dr ever month do a drug test every MONTH just to b able to get something. It doesn’t take all the pain away but at least I’m able to deal with it most of the time. I can NOT sit for long periods of time or stand for long periods, or lay down or even walk for long periods.
    An yes there has been times when I go to fill my medication at the pharmacy an hear them talking, saying things like,How many of these have we filled today. Last month one of them said well at least this Dr isn’t one of them that has a different phone number every 2 weeks.
    I do think they need different guidelines for opioid prescriptions. They shouldn’t group legitimate pain patients an addicts together. It is so sad how people think that every person that’s on pain medication are addicts. An don’t fare go to the ER at the hospital with a pain condition cause they think your a ” drug seeker”.

  25. Richard Oberg M.D. at 11:37 am

    Thanks again Ed. It’s rather astounding, isn’t it? I haven’t seen one article on chronic pain from ‘official’ sources in the last two years that relates to anything other than death and destruction. Usually there’s a caveat at the end saying it doesn’t mean some patients won’t need them. Huh? It’s all a lie of course and the many thousands of blog posts I’ve read to the contrary speaks to an entirely different side to this issue officials chose to ignore – why? I’m glad it’s being called out but I’m cautiously optimistic this effort will do much. I’d like to suggest something I’ve suggested to our state officials to no avail – how about physicians with personal experience using these meds safely and effectively (like me) having an official say in this? Why are these people any more ‘expert’ than me? If everyone on the Core group and others who get lots of attention like neurologists who’ve never scripted for these around here and I doubt much anywhere get outsized citing as ‘experts’ against opioids are healthy then they should be countered with others like me who’s spent over half my career as a patient AND full time practicing physician. Anecdotes are considered abhorrent for national policy yet that side uses them all the time – why the double standard? One last thing – if the data construct used for saying opioid use is ineffective was applied to antibiotics they’d also be considered ineffective – yet ‘we’ all know that’s not true. Why? Antibiotics are widely misused and over-prescribed for self limited viral illness, etc. more than used for legitimate causes and would dilute large statistical analyses to show they don’t work which, of course, is nonsense. Yet another statistical double standard. The perverse effect is antibiotic misuse IS rendering them ineffective as everyone does know due to resistance with myriads of literature reports beseeching physicians not to hand them out just because patients want them. And on and on…. Where’s the balance??

  26. Melvis at 11:33 am

    To dave
    I normally do not respond directly to others comments but yours I feel I must.
    You seem to be confused on why people in pain are commenting about their situation vs how their lives are /were enhanced by the use of opiates? I think your intentions are good to point out a different tactic however your misunderstanding of a patients desperation & absolute fear of losing their only hope for a ” normal” existence appears much more clouded. I think I can clear that up for you.
    Think of a diabetic who is being threatened everyday that they can no longer get insulin because of junkies using up all the syringes. Would ask them to not speak of their fear? Or an asmtha sufferer who is facing a huge government bureaucracy threatening to ban steroids because weight lifters & professional athletes are abusing them. Can you imagine a person crippled with arthritis trying to ” reason” on a comment page being faced with that dilemma now?
    Again…pain is debilitating and just as dangerous & life threatening as other diseases. Don’t believe it? Look at suicide rates for patients who go untreated….

  27. Melvis at 11:13 am

    I don’t get why all the focus on pain patients & the treatment that is literally SAVING lives vs the much lesser number of addicts who have chosen to use pharmaceuticals to feed their addiction? Is it the goal of government to pull the plug on the ONLY classification of medications to treat a long gone untreated medical condition ( pain) because they know some addicts in their own family who can not abstain from using? Is it because too many members of society who were once dependent on assistance are now back to work & functioning? Yes opiates can make your life a living hell if you are using them to get high. They can also save or repair your life if you have debilitating pain and need them to keep it under control. As a health provider I remember the big push in early 2000’s to ask/ document/ treat the 4th vital sign ( temp pulse respiration PAIN)
    We all had to recognize & acknowledge patients pain levels & provide treatment. If we did not treat pain we were derelict of our duty!
    Now our government is attempting to REVERSE what they pushed us to acknowledge in the first place!! Pain is real….and the treatment available that is proven effective is opiates. Now we stand by hand wringing while they attempt to remove our access to that lifeline? Enough is enough!!
    Why are we all just standing by allowing them to do this? Where is the outcry from American Cancer Society? Or Muscluar Dystrophy Association? Or all the othe major large associations that work with pain patients?
    Shhhhhhh….the silence is deafening.
    We all need to respond with stopping donations to those charities who are sitting by idle & not defending pain pts. in these hearings. If you won’t fight for us we do not donate another dime PERIOD!!!

  28. dave at 10:16 am

    I have read a number of the public comments on the guidelines on regulations.gov from people in pain. I think people in pain would better serve themselves by focusing more on how regulations affect their life, their job, their family, etc- rather then focus on how the guidelines affect their symptoms. I think, officials at the CDC will see people in pain as needy, dependent and noncontributing sick people-as an underclass feeding off the health care industry and tax dollars. It would be better to counter this underclass stereotype with a focus on how productive and responsible and “normal” a person in pain would be if the guidelines were more liberal with opioids.
    There is already too much stigma associated with having pain and taking opioids-remove the stigma by presenting people in pain as not symptom laden but just like everyone else who wants to have a decent life and contribute to society.

  29. Sherrie Harris at 9:52 am

    Hello there I am a chronic pain patient since 2001. I am also on high dose of pain medication and I have 5 things that causes chronic pain and fatigue. I have to go to the Doctor once a month to get medicine and mail it off pray it gets here on time because if I go to the local pharmacy around me they do treat and talk about you like you are a drug addicts. I have heard them speak of others when I use to get my meds filled local. This is Shameful and degraded to me and others. I have to take drug test every three months to get my medication. I feel like there needs to be more patients on this board instead of people whom really do not understand what we go thru in just one day. I use to have a better quality of life before the DEA stepped in and decided what our Doctors can write. Quality of life use to be 8 now it’s a 2. That’s a good day to. Please hear our voices. I understand the importance of this. I cannot imagine what I would do without my meds it scares me. Pain chronic pain takes control over your life your thoughts and anything you wish to do you have to be prepared. No just jumping taking off to somewhere you have to plan ans pray that it’s going to be a good day. Thanks for letting me express this.

  30. dave rosen at 9:42 am

    yep. the problem has been the group us together. a big problem is addiction specialists lime yourself GENERALLY are looking to put money in their pockets. PHOENIX HOUSE weaseled their way into the cdc and thier mission is to fill thier beds and detox centers. They have created a wag the dog scenerio. This is a fake problem that has been hyped up to satisfy insurance companies and rehab centers by exploiting the families of the FEW THAT IN THE PAST HAVE LOST A LOVED ONE. Every addiction specialist knows addiction is a desease. You cant blame the drugs. its a genetic problem. tgose people, if no pills were ever introduced to them would have become addicted to alcohol, heroin or something. For an addict 1 is too many and a thousand isnt enough. For a chronic pain patient what ever the doctor said is what we take. it took us a long time a lot of bullcrud nonresponsive therapies and more money then any patient with a chronic illness should ever pay to have a life. NOBODY SHOUD LIVE IN THE PAIN WE DO, EXECT THOSE THAT WANT TO TAKE OUR MEDICATIONS AWAY. LET A FEW OF THEM LIVE IN OUR SHOES FOR A WEEK, THEY WILL CHANGE THIER TUNE VERY QUICKLY!

  31. Jean Price at 8:18 am

    This work group is supposed to be about guidelines for prescribing opioids for chronic pain. I don’t see that really being the focus in what I’ve read. I see the focus being on addiction to opioids and overdoses! These are two extremely different issues, and those of us who take opioids responsibly for chronic pain are beginning to feel this will result in more regulations to physicians for helping their patients who live with pain. I don’t doubt your concern over those who abuse opioids, and we all should be concerned. It is a major symptom of the poor mental health in dealing with the problems of life. But I am struggling to believe you have my best interest at heart, because I am merely a person who has lived with pain for 25 plus years and uses opioids to help me be able to do my activities of daily living. I am concerned about this! To help control my pain, I use a wide variety of therapies besides medication. Yet the medication helps me be able to do some of these therapies… like relaxation, meditation and imagery, and distraction and being connected with my friends and family. I also use heat or ice, and prayer and educating myself and journeling, and maybe even baking a cake on a better day! And I was fortunate to have the tools I needed to look at the feelings that come with the multitude of losses and resulting grief we who have chronic pain experience. Losses as large as no longer being able to work or join in some family activities or even get down on the floor to play with my grandchildren! These are things that you must keep in mind when establishing your guideline….otherwise you have failed us and our physicians. If you don’t separate the issues of addiction and use of opioids for chronic pain, you risk doing just this. Please consider two sets of guidelines and that would help both groups of people. I know you have heard from many families in pain over their loss of loved ones to drugs. This warrants your attention…yet not at the price of combining the issues and then addressing neither effectively. Their pain is real…and so is mine. Their pain stemmed from abuse, mine comes from multiple back and neck surgeries, rheumatoid and osteo arthritis, degenerative disk disease, and multiple other medical problems that impact my quality of life. I have never abused my medication nor been uncompliant with my doctor’s care regime for me. And there are many like me among the thousands of people your guidelines will impact. Please work for us…we already have enough working against us. Thank you for hearing me.

  32. Kristine (Krissy) at 7:44 am

    There is a huge number of people who live in chronic pain and rely on narcotics as the one of the only sources for relief of some kind. In talking with others, most of us don’t get full relief, nor do we “get our old lives back,” but without these medications, many of us literally wouldn’t be able to function. I would go straight to a wheelchair full time if I could even sit up. I have tried so many alternate therapies over 30+ years and some things have worked — in partial — here and there, but my situation (and my bones) have deteriorated to a point that some alternative therapies can even make me worse now. In addition to using opioids, I use the highest dose of Ibuprofen and it works with the other medicine very well. I used to take aspirin also, but after so many years, my stomach can’t handle it and I’ve had holes in my stomach from it. I really hope the CDC can do the right thing for patients. I have never abused my medication; I think if I did, I would be very miserable indeed. I don’t like having to take these pills, but they have changed my life. I don’t like any sort of “feeling” from medication, but people who need it and are on the right doses don’t get a high, so when I hear people say, “What’s it like walking around high all day?” I explain that my meds don’t produce a high in my body. I can’t feel anything other than relief from pain.

  33. Scott michaels at 7:15 am

    Ed can we have someboody like you in there. Its amazint that they still stand by these bogus numbers. Just last week the DEA STATED THAT ANYWHERE FROM 450 TO 1.5 MILLION PEOPLE JUST USE HEROIN. THAT IS A HUGE SPREAD. JUST YESTERDAY THE JAMA SAID PRESCRIPTION ILLEGAL use of PAIN Medication is down. They have yet to admit there is a corilation. next, with 259 million prescriptions written being quotes a number of times, it is irrevilannt. As Ive said even if only 20 million people had chronic pain condidions that required that require a monthly refill and only get 1 prescription, that is 240 million prescriptions. that does not account for the millions of accute patients that get medications for everyother reason nor does it mention how to address remaining the remaining 80 plus million chronic pain patients thatare untreated or undertreated because doctors and hospitals afe forced to treat them like street junkies, only in search of drugs for recreation
    Until the CDC SEPERATES AND ACKNOWLEDGES TAT THERE ARE DRUG ADDICTS AND CHRONIC PAIN PATIENTS. THEY TAKE PAIN MEDICATION FOR 2 DIFFERENT REASONS. PAIN PATIENTS HAVE LEGITIMATE REASONS FOR THE NEED FOR PAIN RELIEVERS IN WHAT EVER DOSE THE DOCTOR PRESCRIBES, THE DEA RULES ARE WORKING IN TERMS OF THE DATA BASE, THE CLOSURE OF PILL MILLS AND THE PRISECUTION OF BAD DOCTORS AND PHARMACISTS. THAT SIDE OF THE ISSUE IS WORKING AND NEEDS TO BE PUT IN THE EQUATION AS WELL. LASTLY, NOW THAT WE HAVE DATES FOR THESE WORK SHOPS, HOW CAN WE PROTEST! THERE MUST BE THOUSANDS OF PEOPLE THAT ARE LOCAL TO THE CDC. NOT TO MENTION THE MILLIONS AROUND THE COUNTRY! ALTHOUGH MANY OF US ARE TO ILL TO TRAVEL, IF WE WERE TO STAND OUTSIDE WITH SIGNS AND UNITE, WE WILL GET THE MEDIA COVERAGE WE NEED. THE POPULATION MUST BEADE AWARE OF OUR EXISTANCE AND OUR NEED FOR THE MEDICATION THAT IS SO IMPORTANT FOR US TO MAINTAIN ANY TYPE OF PRODUCTIVE AND SOCIAL LIVES WITH A MINIMUM AMOUNT OF PAIN AND CRITICISM.
    PLEASE CONTACT ME AT SHOEHAUSE@GMAIL.COM IF THERE IS ANYTHING I COULD DO TO HELP. TAKE CARE AND THANK YOU.

  34. Debbie at 6:20 am

    I hear the word dependent on pain medications which sounds like addicted? I am an addiction therapist and understand there is a deference between addiction and dependent which is different and used inappropriately. Anyone who takes something long enough can become dependent and with pain medication the person can or will go through withdrawal should they discontinue taking the medication but that does not mean they are “addicted”, does the person experience cravings? There are symptoms to addiction which again is different then dependent. Primary care physicians and the CDC through dependence out as if chronic pain patients are addicted. Is the person taking the medication as prescribed? Are they misusing their medications? I ask please distinguish between the two. I know a few chronic pain individuals that take a high level of pain medications who take their medications as directed and don’t know how they will be able to continue working and functioning should the CDC get their way. I have heard of people becoming suicidal due to high level of pain not being managed. Doctors and pharmacists treating people as if they are all drug addicts. People are stigmatized. Change the mind set that everyone in pain medications are drug addicts!!!