Response on CDC Opioid Prescribing Guidelines – Pain Patients Need to Be Heard

Response on CDC Opioid Prescribing Guidelines – Pain Patients Need to Be Heard

On Friday, December 14, 2015, the Centers for Disease Control and Prevention (CDC) opened up the public comment period on its controversial Proposed 2016 Guideline for Prescribing Opioids for Chronic Pain.

16 days into the comment period, there have been over 1200 comments. That sounds like a good number until you realize it’s only 0.00001% of the estimated number of American adults who suffer in chronic pain.

We don’t know what CDC will do with the comments or how it will digest and draw conclusions from them.  Will the comments really make any difference?  One can hope that the comments will get the CDC thinking that the use of opioids is not solely an addiction issue, it is also a chronic pain treatment issue.

What is the public saying so far?

We asked Terri Lewis, Ph.D., who is an expert on health policy particularly as it applies to chronic pain, if she sees any themes in the comments thus far.  Here’s what she had to say after reviewing the comments thus far.

“Here and there are commenters who would prefer to tell the CDC how to address this process properly in order to derive a balanced approach.”

“I am struck that few commenters have addressed physician education, system issues, insurance roles, workman’s compensation screw ups, or factors associated with other intangibles like the influence of a sicker, aging population and polypharmacy.”

Dr. Lewis provided a cursory overview of the primary trends she observed in the comments. They are as follows, and do not reflect any percentage weight.

  • No, hell no. Opioids are bad because…they killed my….
  • I am a professional and I am sick of dealing with people abusing the system – go CDC!!
  • I am a professional and I am glad to see the CDC putting in place guidance so I have a mechanism for refusing to dispense.
  • I am a professional and I believe these guidelines go too far.
  • I am a professional who didn’t understand the problem until I was injured and now I understand what it is like to be treated like an addict.
  • I am a recovered addict who got started down the road of heroin(e) [sic] when I …..
  • I am a person with chronic pain who relies on these medications and I have been harmed enough already. Please don’t take away the little quality of life I have remaining.
  • I am a person with chronic pain who is successfully working with my physician team around a sensible prescribing routine that is working for me – leave it alone.

What are some possible reasons why the number of comments are so low?

“Persons with chronic pain are doing the very best to get through the day,” she said.  “It may take them more than the usual amount of time to formulate their thoughts about these issues. Many will not be able to respond without assistance.”

“I do see a few responses from care partners of persons who have chronic pain – but not nearly enough.  They have an important story to tell and we need to encourage them to tell it.”

“What is clear, is that for many of these respondents, opioids are working well, but we don’t know enough about that – primarily due to lack of research methodology.  For those who were harmed, the comments provide support that a host of factors were involved – from poor patient selection, wrong prescribing, over prescribing, the characteristics and beliefs of the user, lack of patient-physician engagement, and so forth.   For both of these very reasons, I maintain that treatment must be based on the needs of the person and not the population.  Treatment for chronic pain requires an alliance between deft physicians and educated responsible patients, no matter the methodology because not all paths lead to Rome. Each patient is unique, every injury is unique, and every dose-response to treatment is unique.  Overgeneralization leads us to accidents and injuries due to faulty assumptions.”

“Reducing supply lines for prescription opioids or supply side economics will not address the problems associated with poor patient selection, wrong prescribing, over prescribing, the characteristics and beliefs of the user, lack of patient-physician engagement, and so forth.  It will mean that persons who will benefit will have to endure far more of a burdensome misaligned set of processes.”

There are just over two weeks left before regulations.gov, will no longer accept comments (deadline January 13, 2016, at 11:59 PM ET).

If you are wondering the best way to respond, here’s an article that Dr. Lewis wrote for the National Pain Report with some smart advice about how to comment effectively.

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Authored by: Doug Lynch

There are 24 comments for this article
  1. Jane B at 11:27 pm

    The lastest politic is Obama and his minions pressuring Democrats to support the guideline, oppose delay and even investigate the potential financial conflicts of interest of members of the Interagency Pain Research Coordinating Committee, but not, of course the CDC opioid drafing committe, work group, expert reviewers or BSC. Write your elected officials. demand an meeting or phone call or skype session to express your point of view and tell them you don’t endorse the guideline or anyone who supports it!

  2. Mr Clusters at 7:29 pm

    Many more PATIENTS in pain will die from these guidelines. It’s also going to hurt ALOT of people and their families, friends, and business as usual too. No pain relief = no activity, loss of quality of life, loss of productivity, unnecessary suffering, a higher value on the ‘Black market drugs’, etc ….

    These new ‘Guidelines’ needs to be completely scrapped and the study needs to begin with talking to the patients in pain more and finding out what they think is best for them, not anyone other than the patient and their doctor should advise about prescribing pain medication amounts across the board. How dare anyone to tell a doctor how to prescribe to their patients, whom the CDC have never met. The CDC’s stats don’t mean anything if their not including all factors.

    It’s not the person in pains fault that some other person overdosed, so why punish the people in pain ?

  3. BL at 7:14 pm

    Being silent gets you nothing. And that is exactly what a lot of chronic pain patients may end up getting, nothing when it comes to pain medication. I hope I’m wrong, but I’m willing to bet that these guidelines pass because the vast majority of comments were in favor of the guidelines. I didn’t keep track of the number of pros and cons, but there seemed to be far more in favor of than against. It does appear that chronic pain patients not being adequately treated for their pain is the exception and not the norm.

  4. chris at 5:16 pm

    I have been disabled since 1996, have taken a certain amount of medication for this Whole time along with a pain pump. I have never abused them and my Dr. is upset also that they have cut my medication in half and now I am back to barley moving again. I don’t wish this on anyone but I wish they could feel what real pain is.

  5. James at 4:31 pm

    anonymous –
    There is no reason that I should be denied medical treatment because of others who have abused the same medications that allow me to keep working. Or my mother to be able to walk.

    Is there no middle-ground? Why should one group have to suffer?

    It’s my impression that the majority of people who have become addicted did not show up at the doctor’s office with chronic pain. From what I’ve seen/heard, many of them experimented when they were younger with street drugs. Now, no matter what, they do deserve help but so does the chronic pain patient.

    My pain nearly drove me to suicide years ago. I should not have to live like that. Something else needs to be done other than to restrict EVERYONE from using the medications. How is that a fair solution? Should I not be able to continue to work? What is your solution?

  6. anonymus at 9:22 pm

    The reason there are so many comments from people that are for the guidelines are because of the groups such as the ones I have saw that have made it a mission to comment in support of the guidelines. These people are not in cronic pain and are able to post away. They are doing it and have spread the word to as many other of their addicts / groups and have asked them to post comments in support . These are the people in support of the guidelines. They post them in the private areas of their face books and at their meetings . Many Re Hab groups ( all of them) So that is where all the support for the guidelines are coming from . This is really wrong and each and everyone of them are meeting and commenting in support of the guidelines ( well it is over now but yes those are the people) http://www.bryanshope.org
    http://www.mitchellshope.com
    these are only a few based in Michigan that you can see on face book. these are groups of people that are addicts past and present.
    trials to triumph m/m &crossing over ministry
    billy p.- public speaker “from a mess to a message” Billy Pfeiffer
    Foundations recovery network Scott Massi (who speaks at many of the re hab programs
    Brighton Center for Recovery
    Milford counseling
    Alliance of Coalitions for healthy communities
    The anonymous people / a documentary they are sharing
    I hate heroin
    These are all on face book

  7. BL at 7:43 pm

    Has anyone kept track of all the replies ? I was wondering how many of them are for the guidelines and how many are against. I’ve read most of them, but I didn’t keep track of pro and con, I should have.

  8. John D. Hopkins Ph.D. at 9:30 pm

    It is critically important that the CDC recognize opioid prescription needs vary greatly with patients. There are patients with intractable pain who require high or very high levels of opioids in order to be able to function and to keep their pain at tolerable levels. Without these high levels of opioids they will be in extreme pain, bedridden and unable to carry out even the basic functions of their lives. I see this need daily as a care giver to a relative. CDC must recognize this situation.

  9. LT at 8:17 pm

    @ Miki,
    I am also unable to post a comment on the CDC site, or even read the other public comments on their website.
    Either the website is poorly coded, and incompatible with some browsers, and/or security software, or is there is a deliberate attempt at blocking commentary? Anyone’s guess is as good as mine.

    This just seems like another poorly thought out and badly implemented policy, crafted by people with no actual experience in the lives of those who are forced to live with their decisions. I am seeing this more and more as a Civil Rights issue. I stumbled across this site looking for allies in the struggle, and ideas on coping strategies. At least it’s good to know I am not the only one recognizing the absurdity and unfairness of the whole situation.

    I am just another long term chronic pain patient trying to understand the increasing hostility, the accusatory behavior, and degrading treatment I have been experiencing by my formerly caring and compassionate physicians and nurses.

    (The Stanford prison experiment and the Milgram obedience study are the only logical explanations which seem to come to mind.)

  10. Susan Wade at 8:55 pm

    I have lived with Fibromyalgia since probably childhood. L5S1 Discectomy (failed due to misdiagnosis), chronic back pain, chronic chest pain, 2 MI’s, Prinz-Metal syndrome, somatic dysfunction … the list goes on for what I live with DAILY, therefore so does my family.
    Back injury in Feb. 1995; tried to ignore for 7 wks. when I couldn’t stand up & went into spasms FAMILY made me go for care. The nightmare begins! Having had 8 surgeries previously (since 2 y/o) I am no wimp or cry baby. I went to a D.O. I worked with after Employee health MADE me go to ER. Continued therapies & work for 4 YEARS!!!!! Three more uears pass before!!! asking for pain medicine… he laughed & said ‘I’ve been waiting for you to ask’. The only reason I did then – my FAMILY couldn’t live with the pain monster that now lived within me. I still only take 1/4-1/2 of what is prescribed because (I hate the feeling & nausea) I DO NOT want to ever become tolerant or addicted. Many times refills EXPIRE before I ever request them from the pharmacy. I regretfully have a very low social life due to the fact I live with this pain & can’t stand much movement around me plus the fact I hate to subject others to my pain & inability to cope around others.
    Since there is NO CURE at this time for these issues ; you really want to swap lives with me? If you did live inside MY body – YOU would beg on the side of the road for relief (or street drugs). I have NEVER & WON’T; so my ONLY hope is the wisdom of MY health care provider. Please DO NOT tie his hands so I may have something resembling a LIFE.
    The fact this was done IN SECRET is against the Constituition of the United States.
    You are welcome to see any of my medical records (since birth – that’s where my issues started) if you would like by contacting ME. I will gladly sent anything that will be of assistance to prevent this attrocity.
    I pray for your wisdom in revisting this issue.

  11. Pingback: The Opposition to Guidelines Discouraging Overuse of Narcotics | naked capitalism
  12. BL at 9:27 pm

    I have to say again, chronic pain patients aren’t vocal and visable. When I said chronic pain patients needed to organize and demonstrate, I was told they are in too much pain , don’t have the money, etc. Well, that excuse doesn’t work now. These comments and the numbers are saying there are more people being affected by addiction and drug abuse than their are people being denied adequatge pain management. You also have to remember that saving the life of addicts is priority. Chronic pain patients having quality of life is not a priority.. If you want to use the argument that those denied pain meds are committing suicide, that just makes chronic pain patients look unstable mentallly.

  13. Heather at 4:26 pm

    I commented today. I’d been putting a lot of thought into what I needed to say. It takes a lot of effort but if we fail to comment, then we fail to advocate for ourselves. I was upset by the number of responses in favor of the guidelines. Addiction is an awful thing… awful… but most chronic pain patients do NOT become addicted. We have different needs as a population (chronic pain patients) than people who have addiction issues. There is much more personal bias and stigma than there is research and dialogue.

    I fear we’re about to be crushed. I’m sorry, but we need all the comments that we can manage and time is running short.

  14. j.mraz at 10:29 am

    I would not wish chronic pain on anyone. To take away or limit what helps the sufferer get through their lives with some relief and maybe enjoy their limited activity…is beyond belief. But to not take into consideration the Voice of the Patient is very sad. Patients are human beings. Patients do not need to be at end of life to get real help. Physical therapy is limited as to pain relief and sometimes causes greater pain. CDC please allow the Patients to speak. Please take into consideration….their feelings. I intend to write and see if I can get through….as I have experienced and seen the suffering…firsthand.

  15. Kellie Ooley at 11:11 pm

    I suffer from a few chronic pain diseases. It’s already taken so much away from me and taking my pain meds is what help me to live my life each day. Without them I could not function. Dont punish us more than the pain already has!

  16. BL at 10:19 pm

    Scott michaels, if there are as many Americans with chronic pain that are being denied adequate pain management, they are going to run across this.

    The comments are not all from chroic pain patients. There are a number of comments that are in favor of these guidelines and stricter ones. So chronic pain patients that have commented are less than 1200.

  17. Lisa Nichols at 8:47 pm

    I can’t even bring myself to comment anymore. ..it’s just too disgusting how pain patients have to be in this push and pull issue..you want comments, real stories? The actually speak to those of us that are suffering, either by our own docs or by the public

  18. Donna W. Joe at 5:30 pm

    The proper laws regarding the use of opioids are already in effect. Those laws simply need to be enforced. I am a responsible chronic pain patient who has used Percocet for several years. My dosage is appropriate for my pain and my doctor properly prescribes and monitors my usage. Please consider the needs of those of us who suffer every day with chronic conditions that limit our daily activities and cause us to require these drugs in order to get some measure of relief each day.

  19. Joe Newman at 12:05 pm

    Having the CDC write guidelines to restrict pain medications for those whose lives are filled with severe, incurable pain on a daily basis just adds to the torment and does nothing to help.

    If only every member of the CDC and every physician who ignores the pain of others would be required to live with acure, chronic pain for only a month while having others deny them relief I think their attitudes would be changed for a lifetime.

    Physicians, either heal your patients pain or relieve it so that they may have some semblance of a life.

    CDC, look among your families. If you see one of them suffering from daily, painful torture can you really turn your back on them?

    When my Mother had terminal cancer with less than six months to live a doctor told me that he would not give her adequate pain medication because she might become addicted. It took all of my restraint to not give him immediate need of pain relief right there on the spot for being so insensitive to my Mother’s suffering and so ignorant of his responsibility and obligation to relieve the suffering of his patient.

    CDC and physicians remmeber this: what you do to others often gets done to you so be a help and not a hindrance.

  20. Armin at 11:26 am

    Totally agree with Scott,nobody knows about it,feels like the whole thing
    is skewed.Where’s the drug lobbyists.Why aren’t they publicizing this.
    Nobody is.

  21. Kathy Cooper at 10:33 am

    I worry that by having my comments on the Federal register it will cause problems. I was involved in some family litigation where these comments were used against me. Because the mainstream narrative is that we are all “Drug Addicts” it could be a reason for a negative reaction. Apparently these comments are misunderstood and due to the ignorance and fear in the general public, they are easily misunderstood. The Media has been playing a false narrative about anyone who unable to work, on public assistance,and on pain medications. I have never been in trouble with the Law, or ever had any problems with my Legally prescribed Prescriptions. That did not matter. I have plenty of documentation, MRIs and 2 surgeries, I have tried every alternative and avoided Pain Medications at first thinking I would get addicted. None of that mattered. I am afraid to even tell anyone I have chronic pain, because my family used it against me in Court to get a hold of my Mother’s assets when she developed Dementia.
    I have learned a lot in the past few years. Especially how much the Medias false narrative about us, has made us targets for hatred. My Ruptured Lumbar disc was misdiagnosed for Years. I was told it was all in my head, even after my first surgery. Even though I was working and attending College when it got worse, and I almost lost the use of my leg due to the nerve compression, I was still Labeled. Years later I have a great Pain Physician, but there is only so much he can do. I still can’t work. I made the mistake of cleaning myself up before going in public, making it look like there is nothing wrong with me. It made me feel a little better to not go around like a Victim. Often I had been in pajamas for days, yet I must be faking it because I did not look the part.

  22. Lawrence Feldman at 9:34 am

    My comment to CDC:

    http://www.regulations.gov/#!documentDetail;D=CDC-2015-0112-0425

    Comment from Lawrence Feldman
    This is a Comment on the Centers for Disease Control and Prevention (CDC) Notice: Federal Register Notice: Proposed 2016 Guideline for Prescribing Opioids for Chronic Pain

    As someone who has suffered from chronic pain since 1986, a condition diagnosed as RSD/CRPS of all four limbs due to a sports injury, I have been open to all modalities of treatment, even having tried acupuncture as early as 1989 at a time that ost ‘Western’ educated doctors would have considered such therapy a joke. I presently take Nucynta for primary pain relief, along with a host of other medications including antispasmodics, muscle relaxants and antiepileptics, after having been on percocet/oxycontin for almost twenty years. None of these medications, alone or in combination are perfect. My pain is at best somewhat ameliorated, and there is always a part of the day, especially after therapy or any extended physical activity such as food shopping, where it begins to feel unbearable. I have rarely felt a ‘high’, and that only to a slight degree from medicines such as as morphine and fentanyl which I voluntarily discontinued due to extreme nausea. What I take, I take because it gives me the best relief without undue side-effect, and I resent being lumped together with individuals who decided on their own to disregard prescribing instructions or who found a way to receive these medications with no other intent but their abuse.

    On what may be considered a side note, but I believe to be relevant to the issue of lowering the need for additional opiates for breakthrough pain, Medicare Part D does not approve the use of lidoderm patches for peripheral pain that is not the result of cancer or diabetes. The Maximus appeal board refused to allow coverage of these patches for RSD/CRPS, a by definition peripheral nerve condition, despite my having submitted photo-copied medical papers supporting my claim, as well as my pain specialist citing literature in his paperwork. I use these patches on especially active days, such as when I have therapy, and the pain levels extend to their worst. In light of present discussions on narcotic use, do the kind souls at HHS prefer I have another prescription for percocet to take for breakthrough pain?

    First, you unfairly attempt to limit the treatments available to lawful patients and, then, the system forces the very same group of patients to require more narcotic pain relievers by denying access to viable alternatives.

    Tracking Number: 1jz-8mx9-9tyn

    Date Posted:
    Dec 21, 2015

    Submitter Name:
    Lawrence Feldman

  23. unknown at 9:20 am

    Maybe pain sufferers are scared to comment and make public their thoughts. It’s scary to think an opinion may be used against them. Next thing you know they’re a target… I am not being over cautious, this is the world we now live in…

  24. Scott michaels at 7:14 am

    although we know about the guidlines and the open comment time by the cdc. the problem is that the CDC DIDNT ADVERTISE IT.
    MOST OF US JUST STUMBLED UPON IT BECAUSE WERE KEEPING UP.
    THERE SHOULD BE ADS IN AARP , TIME ON 60 MINUTES, PEOPLE NOTIFYING THE VETS. THEY JUST HAVENT BEEN FAIR.
    THE CDC SHOULD OF HAD PAIN PATIENTS THRU FOCUS GROUPS BE ABLE TO SHARE THEIR VIEWS AS WELL AS PAIN DOCTORS AND HOW THEIR HANDS ARE TIED. THE WHOLE THIG IS A GENUINE CONSPIRACY and im not paranoid