HHS Draft Pain Report—Lots to Think About and to Still Do

HHS Draft Pain Report—Lots to Think About and to Still Do

We reported the news this past week that the FDA will require label changes to guide prescribers on gradual, individualized tapering of opioids. The Agency reported what has been obvious to pain patients for some time—that harms is being reported from the sudden discontinuing of opioid pain medicines on pain patients.

The FDA announcement was met generally with praise by some of the pain leaders we spoke with.

“We remain deeply concerned about the significant population of patients who have been using opioid pain medications appropriately to manage their pain where the benefits to these patients outweigh the risks yet, are being forced off their medication due to physician fears rather than what is best for these patients,” said Cindy Steinberg, US Pain Foundation.

Stanford Psychologist Beth Darnall, who has been a critic of forced tapering agreed.

“It is wonderful to see national agencies issuing dedicated communications to correct the misapplication of CDC guidelines, and to assure patient protections from iatrogenic harms caused by rapid and forced tapering,” she said.

For Richard Lawhern, PhD, Director of Research for the Alliance for the Treatment of Intractable Pain, this is a long overdue “baby step” the FDA has taken.

As the week went on, it started me thinking about what impact this might have on the U.S. Health and Human Services Draft Report on Pain Management Best Practices: Updates, Gaps, Inconsistencies, and Recommendations.

The initial draft was well received by pain patients and many professional medical associations and professional societies.

Generally, it argued that balanced pain management should be based on a biopsychosocial model of care and that Individualized, patient-centered care is vital to addressing the public health pain crisis.

Did you know that 6,000 people commented before the April 1 deadline for public comment period? That’s a lot of input to categorize and include in a final report—which is due to be issued May 31st. The Task Force will next meet May 9 and 10.

This document will be the most important proclamation on pain treatment in the past several years. Here’s hoping that this week’s news from the FDA, the growing understanding by the national media that the opioid “crisis” is also a crisis for pain patients, and the thousands of voices who gave their opinions on the draft report are absorbed in the final report.

Like many of you, I’m anxious to see what the final report looks like—it’s an opportunity to create a roadmap that can truly benefit pain patients in the U.S.  

Authored by: Ed Coghlan

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Aldo Ritondale

It’s way too late for many of us. I was force tapered from 75mcg Fentanyl Transdermal patches to 10mg Oxycontin and from 30mg Oxycodone to 7.5mg Percocet (7.5mg OC with Acetaminophen). The withdrawal was severe; I wound up in the ER with severe dehydration from vomiting and diarhea, and I had severe malnutrition from constant loss of nutrient and inability to eat. My left kidney failed temporarily from myoglobin (protein buildup from dehydration), and I developed a urinary infection from the dehydration as well.

Anybody who tells you that opiate withdrawal is not life threatening is full of it.

Of course now my pain is uncontrolled on such low doses, and life is just not a happy place for me. I get sick to my stomach when taking oral NSAIDs, and Acetaminophen has diminishing returns in terms of pain control. I have tried every other available pain treatment modality.

I am sick of the lectures from politicians, media, and pharmacists, who have no idea what pain really is. The opioid crisis is really a “Dopioid” crisis (as in “Dope-ioid”, because the dopes are running the asylum.

I wish politicians would stay out of our healthcare, which includes our pain care.

Steve Abbey

Are all of these messages getting to the CDC to read?. Or the FDA or the DEA?. I don’t know either, but maybe it would be a good idea to start swamping them with these messages also!. I know the National pain people are there for the chronic pain patients but are they sharing the actual notes they are getting from Patients?. I don’t know, but “WE” should have shared these notes with everyone that’s involved with this crisis!!! The crisis of legitimate pain sufferers!.

Trish

The federal government treats pain patients like we are irrelevant, when pain meds allow many of us to be functional and participate in work, volunteering, keeping house, travel and engaging with family.

Here’s an opportunity for us to make ourselves visible to the public, and on the internet, the Blue Balloon Campaign. The first event is May 15th. The idea is to release and/or distribute balloons and fact sheets in public places, ideally visible to federal agencies, state government and medical facilities. People who are housebound can release balloons, send balloon bouquets with messages, or letters, to government officials.

Videos and photos of Blue Balloon events can be displayed on the internet, and over time the amount of action will continue to aggregate.

Here’s the Blue Balloon Campaign websitehttps://blueballooncampaig.wixsite.com/blue/campaign-map

Adam halstead

The government is basically setting up the cartels for success beyond imagination with these laws.

Adam halstead

Its going to require very drastic actions to straighten this mess out. While some doctors have been fiercely loyal about their patients..like they’re supposed to, the majority have totally sold out chronic pain patients. Im sick of hearing about Cdc laws drs use as excuse to dump patients. If enough drs stood beside patients things probably wouldn’t be anywhere near this bad. All I ever get is a back handed attitude from drs or nurses maybe a smart ass sharp remark. Most are selfish narcissistic uncaring pieces of work. At some point the people will totally revolt I can guarantee..I cant believe how these guidelines so easily came to be and all the misery, death and hate have come to be in the blink of an eye. The power that be has that much absolute control and its not going to get any better..that much is apparently true. I don’t know what language or reason these people will respect and respond to if any. Its the behavior of tyranny to oppress and cause undue suffering that taking people’s pain medication away period and those guilty must suffer the consequences.

Ali

The guidelines we’re instituted and bullied into being but:
1. Guidelines we’re not place in physician’s waiting room for chronic pain patients to read and reply.
2. Patients were not made aware of the deadline in an appropriate manner so all could know.
3. Where are the studies, where are they posted, and the internet is not available to all patients. Post them in patients waiting room.
4. We’re physician’s encouraged to give information on the study, the site to put in patients response to new guidelines, and the deadline date.
5. Who are all the agencies in the study and new guidelines posted at physician’s waiting room? Where physician’s given this information to hand out to patients.
New guidelines we’re a travisty of medical negligence without duediligence.
This whole medical change is causing collateral damage to chronic pain patients that can never be replaced or change.
CDC, FDA, etc agencies…have created an atmosphere of shame, dehumanising, demeaning, bulling, and loss of personal chronic pain medical care.
This environment created the way for suicides, profound depression,
rejection by physician’s of patients seeking medical care for pain, hospitals refusing chronic pain patients medical care, and leaves the chronic pain patients with absolutely no way to gain access to chronic pain management.
These agencies did not do duediligence in considering “first do no harm”. Instead these agencies trod it down with a nation of chronic pain patients and induced harm by medical malpractice negligence.
Human life devalued by government agencies who medically induced and caused harm.
We chronic pain patients are there collateral damage.

The only way to fix this debacle is to rewrite the guidelines making it a criminal offense to remove a chronic patients pain medication. Not only should the doctors be held accountable but also the Insurance companies. Anything short of this is a waste of everyone’s time and effort. We can all talk about this and complain how unfair this is and all the suffering caused and how many patients committed suicide until the cows come home. But until the laws are changed we don’t stand a chance.
A question for everyone who has chronic pain: since all this discussion started about how poor chronic pain patients are treated and the increase in suffering and suicide increases, has anyone been able to get their pain medication regiment back? Has anyone been able to get opiates to treat your pain? I know nothing has changed for me. Talking to my doctor, he has not heard word one about revisiting the treatment of the chronically sick pain patients. Not a word.
Maybe if we all get together, 20 million of us and our friends and families and choose a month where we all miss our Insurance payment. Then we will get instant change and instant media attention. Maybe then we will have hope of change.

January

The CDC certainly made a complete mess of things with those patients in pain. Chronic pain patients are not your average users. Average users are not even being given enough pain medications to treat their pain from surgeries! Chronic pain patients are the ones who are NOT ADDICTS but dependent on pain medications to get along in their daily life. Having my medications returned to me in the same dosage as before their discovered “opioid crisis” is the objective that would give me my life back. Only that solution is acceptable to me. I survived just fine for 5 years with my opioid dosage and now I struggle with the pain every damn day due to the new opioid regulations that caused my doctor to withdraw two dosages of my meds. That change has caused me harm. I was not in danger of becoming an addict but now I am simply because there are days I would do anything to get out of pain.

dave

“A long habit of not thinking a thing wrong, gives it a superficial appearance of being right, and raises at first a formidable outcry in defense of custom. But the tumult soon subsides. Time makes more converts than reason.” Thomas Paine
It may be comforting or convenient to believe government and experts have “the right stuff” morally and intellectually to meet the needs of people in pain- but here we are… 12000 years after the first know treatment for pain was used after civilization and millenia have past. Its pause for thought for me. And i say the experts and govts havent gotten pain care right and the PMTF is far from getting pain care on the right track.
There is no real goal to modern pain management and no clearly articulated rational from govt and experts. And that is where pain care derives from today- govt,experts and marketeers- it doesnt result from a collaborative effort that recognizes all the stakeholders as equal partners. And so pain care remains largely alienated and largely alienates people in pain from participation and having a real say other then no in their care.
So the PMTF and pain care today lack procedural justness and fundamental fairness. the PMTF laughably, and tragically believe their intellecual capacity and moral capaity and perhaps political capacity renders public input as quaint but unneccesary. But its all too clear, the PMTF isnt learned beyond their narrow and unfit paradigms and so they didnt even try to give full and fair consideration to a whole range of alternatives. Theyre also opposed to curing pain or treating to some specified target or maximal medical improvement or lowering treatment burden or adjustment burden, Franlky, I challenge the PMTF on the basis of knowing how policy should be made and to articulate their notion of health justice- for its only too clear they dont know what they are doing- assuming the public good is their objective.
THe PMTf is tragedy and farce.

Mandy

I am a chronic pain patient and have been for almost ten years ! We were all lumped into one as an addict and it’s not true. Yes we are dependent on a medication but do we want to be absolutely not ! Do we need this medicine o have a quality of life that’s hopefully bearable and where we are able to do things yes . Do we get high on meds no not at all!! If your treatment is correct with the pain level u are at there’s no high there’s a life that can be lived! I reacently had sugery that truly helped I was able to come down on meds greatly but there’s still nerve damage that will always be there but is managed with a medication and shots do I like it NO not at all but I can do more and with less pain. This crisis’s is people on the street or they didn’t need the meds to begin with and kept making things up to get them. People who are doing what they should go to a Dr every month get drug testing at this appointment . Medicine can be counted at any time and is counted at every appointment . We do what we are asked by insurance and Drs to get the care we need and are judged daily for it or can’t get the care that is needed so I ask how do you fix this for people who need this type of medical care and are compliant with absolutely every requirement that’s asked of them???? Someone answer that. Do NOT lump everyone into one group and assume that it’s all drug seeking !!!!!!!!!!!!

Debra

I whole heartedly agree with Alice Carroll! I even eased off of opioids by a huge amount after a surgery by myself to a much smaller dose that was just enough to ease the pain, but not be “high.” It’s not about being euphoric. It’s about having enough pain relief to maintain a quality of life. My physician dropped me cold turkey after 12 years of pain management via opioids & left his practice. No warning. I begged for help b/c I did not know what to expect. I went from being independent to living in bed, getting up to go to the restroom for 90 days. I had no physician no pain clinic, nothing. It took me that long to find out I had to apply to a pain clinic, & also first had to find a new PCP that could refer me to the pain clinic. I didn’t even want to get out of bed b/c I was too weak. Had it not been for the love of my children to get me back up & do these things I would have given up. This should NEVER happen to a person. I felt as though I was abandoned by healthcare & was left to die!
I was also denied by 1 pain clinic with no reason given after their “background check”. What is that all about?? This action by the health industry was appalling! I had to prove all my past surgical & reasons for needing pain therapy all over again even though I was considered disabled by the government due to my issues! Thank you for being an advocate for us!

Alice Carroll

Susan, Most long-term Chronic Pain patients that are prescribed opioid therapy reach an equilibrium where their pain is managed at a certain dosage. They stay at that amount (sometimes for years) and may have a rescue prescription for “flare ups.” The Main Stream Media and the Addiction Industry put forth that opioid users need escalating dosages. This is true if you are trying to get high. You must have more to get the euphoric feeling. Legitimate Chronic Pain patients do NOT get high, we get pain relief! We do not crave more. Yes, we will go through withdrawal if our opioid medication is stopped as we are physically dependent.

Doctors that stop prescribing and abandon Chronic Pain patients in opioid therapy should have their license to practice medicine removed. They can and do cause suffering and death to their patients. It is wrong that they are allowed to do this. They take an oath to “Do No Harm.” Medical Boards that allow this are complicit in its outcomes.

Vincent Morraele

I still wonder why we hear nothing from athletes, I was a almost pro but the point is are the pro athletes exempt? It would be nice to see a commercial with CDC FDA with some Doctors and professional athletes advocating that this has been a great misunderstanding and that our doctors are to be protected to help our fellow brothers and sisters with regimens that worked. Natural and part natural medications. There are lot pot stores everywhere but it does not help like an opiate does and that’s by far. Pot makes people loopy lazy and hungry and it’s expensive.

So will there be a nationwide statement of revised prescribing guidelines for opiate meditations like there was in 2016? This time a much clearer statement that ensures our doctors be able to prescribe 300, 400 to 500 mme for serious conditions, otherwise this will not go anywhere and nothing will change.

Shane

Fda already screwed the people over that really need the medication they lumped all opioid deaths together i want to know how many people died taken pain meds prescribed by there doctors

John Allen

I’m with out a doctor because I was knowledgeable more than him seeing how I’m the one living the pain detox me off of my pain medication in a week after 4 surgeries in one month I got degenerative disc disease damn MRIs CAT scans and they do nothing I sit with anxieties all I do is want to jump off a bridge and don’t have no one to talk to and don’t have any help

Bradley Bill Parker

Thank You for letting me posT. I’ve had recurrent viral labyrinthitis since 1999, which gravitates to menieres disease when it’s recurrent… I’m 56, thirty year tile contractor until April oF 2013. Sometimes a person with menieres disease or condition where HHSVS (human herpes simplex viruses, theirs about eight plus it’s suspect of more.) I’m not a doctor so my explanation should make more sense ha ha ha, it’s a relapsing and remitting infection that apparently really enjoys chewing the myelin sheath (like insulation on electrical Cord’s) off of our Cranial Nerves right down to the axone root. THIS REALLY HURTS. With menieres disease Sometimes There’s A LOT MORE Going On and menieres disease can’t account for all the symptoms. And when this is happening, IT’S NOT A GOOD THING. Through the nerves is how this virus move’s around, and it’s Moved down across MY FACE which has been numbed and tingling. This is the newest pain and it’s began about seven months ago. Trigeminal Nerve pain is as UGLY PAINFUL as it is Written about. Up until Seven months ago I had been treated with opioids for this Horrible Disease, Life Sucker. My pain medication had been chosen, prescribed and utilized APPROPRIATELY!. Hey! Suggest that it Wasn’t, TO MY FACE ha ha ha, I might hurt you… You Know that’s kinda the problem, one of um. I refer to my former primary care physician Doctor Michael Gruber who had been seeing me for over two years. OK Here it is! HE ABANDONED me! ha ha, it’s not that funny, is it. I mean the man, excuse me The Doctor Up and Moved a THOUSAND MILES away to Denver Colorado Without ANY Advanced Communication With Me at All. SON OF A [edit]!. Yes when I personally stopped by our little rural clinic here to make an appointment with the good Doctor they tell me He Had To Move for some kind of “Family Emergency” ? Everybody got a letter NO! No no.. I didn’t. Alright what else, PAIN. NO ONE IS GOING TO HELP me. WHY? Tradition. Who said the sixties were. Thanks, Bradley P

All well and good but what about the damage already done? I do not have a pain doctor anymore because he planned to leave town and would not see me before he left. My medicine ran out the day before he left and he would not call me another one in. I even told him I could not make it that long. He did not care. When he came back he took my medicine from me and I have been out since. I had a surgery on Apr. 10th.to try to remove a nerve but it did not work. I had filed a grievance on the pain doc but he used the grievance to plan to send me a termination letter and ban me from all the clinics where he is. Everybody lies for him. I will not be quiet and am going to file against him and I am protesting his letter to ban me. I sit in pain tonight with no meds and no nerve blocks. How can anything ever fix the broken, the abused and people who committed suicide and all the other damage caused by this attack on chronic pain patients? It is a travesty.

Stacy Cooper

My question is this, will the insurance companies and pharmacy help us when we are fortunate enough to have a doctor still prescribe but the issue is we are on our last day of our script and all of a sudden insurance won’t cover because of the hundreds of hoops they require us and our provider to go through to get our preauth approved prior to our refill date. There is no immediate mechanism to cover our scripts while doctor’s are wrestling with insurance and they don’t give a care that even one day without can have devasting affects for us. I’m blessed to have been able to pay cash the first time since the pharmacy give me a huge discount but the second time I went a week without my refill (I was smart the first time it happen to think about rationing during the six months enough to cover a week).

ElizabethR

We can hope, cautiously, that the recent FDA notification may be the beginning of a more enlightened and, dare we say, compassionate approach towards those suffering with long-term, incurable pain. Patients, especially elders, living with pain who use medication responsibly under their physician’s supervision are not the cause of the “opioid crisis”. We never were. Since 2016 we have been commingled with and regarded as “drug addicts” regardless of our medical conditions, history and age. We are not.

Ali

Chronic pain defines as constant, unyielding, relentless, and pain that can be debilitating.
The powers that be ignored there own oath “first do no Harm” and set guidelines that placed many many patients with out medicatin, physician’s, clinics, and hospital’s that will not treat a chronic pain patient with relief and respect.
Suicides, withdrawals, buying drug illegally, caregivers leaving them, and debilitating to the point of NO quality of life.
The chronic pain patient was labeled, demeaned, bullied, isolated, and left to suffer there pain with NO help.
The powers that be took away immediately all the help from a chronic pain patient that followed all the guidelines, respected there medication, and felt someone would help them.
The powers that be are responsible for the suicides and made a grave error. They are responsible for the labeling, bulling, demeaning, and isolation these patients have to live with 24/7. How will the power’s that be answer the charge of negligence in these patients lives. Nothing will happen to them. The chronic pain patients are the powers that be collateral damage from the misguided guidelines made so flagrantly without thought to the results of there actions.
Now new guidelines but to late and to little of a change.

Jeanette French

Let’s hope they have heard us loud and clear !!

Douglas Durbin

Tapering? FDC, CDC, DEA, NIH, and all concerned with policy making: yes, some pain patients are, or were, on too much medicine. I was one of them, and I needed to taper.. to a point – an acceptable, very individualized point. Beyond that crucial point it became destructive and caused more harm than was necessary. It’s happening all over the country and the affects are only just beginning to show how destructive this is becoming. The humane treatment for people who suffer cannot be catagorically placed into a “one-size fits all cap” if it’s to be useful. A bandaid will not mend a severed arm no matter how you place it. It’s not an appropriate fix, and like medicines for truly painful conditions, it has nothing to do with defiance or addiction or anything but the need to have appropriate medical care*. There are very different illnesses and injuries that cause differing levels of life-debilitating pain. This affects the very best of people and destroys lives if left untreated. “Tapering” is a word that ought to apply to those who live the lifestyle of the addict, without trauma or obvious pain. It’s not always easy to see the distinction, but the mass labeling of people and treatment is counterproductive. Their individual needs have to become important if either the addict or the pain patient is going to receive realistic medical care. To “taper” a chronic pain patient off his/her medicines is to cause harm and is destroying lives that are already very vulnerable. To “taper” an addict in a reasonable fashion is what your goal is, and even the addict will appreciate it afterwards. The pain patient and their families will not be “better off”, and this is where the danger begins for them; there’s no appreciation from the harm this is causing because of misinformed policy makers and physicians who cannot do their jobs without being threatened by policing agencies or policy that forces them to cause harm.

Susan

Has anyone considered that people get use to a pain medication and it STOPS relieving their pain. That is the reason people start taking more medication. It would seem to me that rotating different pain medication as well as different manufacturers might help in keeping the abuse to a minimum.

susan

Me too.

Douglas Durbin

I keep hearing about epidemics and addiction, but nothing about real solutions for those who truly have injuries or illnesses that create a life filled with pain. Addiction does not come from an inanimate object; it’s a lifestyle, a way of life, not an object. That lifestyle is very alien to those of us who are sick or injured. It’s not a pill that makes an “addict”, it’s the behavior of people and the things they do to get their “fix”, whether pill or liquid alcohol or heroin, the addict suffers from a totally different problem than the chronically ill or injured pain patient. We will not be jumping fences and hanging out on drug streets with the addict tonight, and I don’t think that’s fully understood by the majority because policy makers who jump to the conclusions that cater to the masses who are taught false ideas for problems that require different solutions. It’s easier to blame a drug, build a wall, get votes and funding, and call in armies to shoot the “monstrous object ravaging the countryside”, but it’s false, misleading, ineffective and destructive to the people affected on both sides. The addict can shrug it off and go his/her way, onto the next object that satisfies their need: historically something more destructive. While pain patients are left behind suffering. Both the addict and the chronic pain patient have different needs, different lives, and these problems need to be seperated and addressed by people who understand dependence versus addiction, and the lifestyle of the “addict” versus the lifestyle of the chronic pain patient. They are worlds apart and have no similarities in how they live life – it is a tragedy that those who “know better” in the medical community and higher levels of both healthcare and Drug enforcement agencies continue to let these differences remain obscure, both in their own policies and in the media. All sides will fail and problem will escalate and many more will suffer and die until this changes.

Heather

I pray this is a hopeful sign, and that the final report will benefit patients. If it can contradict or over-ride the CDC Guidelines, that would be my desired outcome. Is this possible?

I was grateful for the extended comment period. I read the full report, made notations and managed to formulate a response. Before I was sick, I could have done it in two days. It was disheartening that it took me a month.

If we can even make small steps to advocate for ourselves, one attempt every week or two weeks… some paragraphs we can recycle and send to our representatives, to the AMA, to the CDC, to Human Rights Watch…

I wish there were more of us who could muster up the effort to reach out to journalists, and to be on TV. I pray there are some who can do this. We need every small step, every voice… I send love and blessings to all of you, and I hurt in my heart for the trials we face with our illnesses alone… but we need to do all we can to continue to fight.

I don’t think the FDA statement is the be-all and end-all. Word still hasn’t gotten out. We need to pressure the CDC to talk about chronic pain patients in particular and to put out an unambiguous statement about who the guidelines were for (acute pain, primary care physicians), that doctors should stop forcing pain patients to taper off meds, and that we have been harmed by the guidelines. Either that, or to retract and BURY those d****ed guidelines before more people die.

I will work to hold them accountable! We all can work to hold the CDC accountable!

Michael Swift

I hope this becomes a pragmatic factor in future prescribing. I was on Methadone for 18 years- one of the WORST type of long term opoid to abruptly STOP, but STOP, they did and i plummeted into 6 MONTHS of the most traumatic fight for my life i ever had to endure. It is now going on 2 YEARS and still get 2 hours of sleep every night, (if i am fortunate), and as soon as the muscle relaxer taken at bedtime wears off, i awaken feeling like i was injected with pure adrenaline in a cold sweat and a pulse of 120. There are days when i don’t want to go on from the excruciating pain. I am requesting to address my state legislature in person at our capitol in Salem, OR., as a prime example of how harmful and DEVASTATING it is on a human soul to abruptly STOP a drug well known by all physicians and PA’s to Gradually taper. I had a clean – spotless record with my pain specialist for 15 YEARS. When that specialist retired in 2016 a PA took over my very complex case with a FORCED TAPER . Despite my pleas to see a PHYSICIAN to treat my case, and objections with the forced taper, my concerns fell upon deaf ears. When my PA went on leave, i was forced to see a replacement PA who was very stern, hard, loud and flat abusive. The provider acutally yelled at me in the exam room. I walked out with 3 months worth of scripts all at once-something the clinic never does! When i submitted the wrong script to fill my methadone, my clinic was alerted by the pharmacist and i was removed of all my pain meds and kicked out of the clinic as a suspected drug abuser. A FLAG was sent out to every clinic, every dentist and the only hospital in the small town where i live, with no response to my phone calls to the clinic that kicked me out – all prime examples of medical abandonment resulting from the “Suggestions” of the CDC’s 2016 guidelines. I am not alone and one voice of many whom i hope to speak on their behalf. Wish me luck with my legislators.-Thanks!

Alan Edwards

Do we need another guideline or proclamation from government about incurable intractable pain? Cancer has been curable for decades. Why do doctors need another pain guideline or proclamation from government acronyms?
Like the venerable John Stossel, I know government is the problem- not the answer. We literally have DEA agents gunning innocent people down during a false, immoral drug war. And the Supreme Court has circumvented THE CONSTITUTION AND BILL OF RIGHTS allowing police to lie, steal, and murder for profit on behalf of the war against pain patients. Why doesn’t the FDA proclaim there be no more civil forfeiture targeting incurably ill pain patients? Because they are not guided. Government needs Biblical guidelines. They need guidelines. Not us. We are harassed by pharmacists and physicians and politicians. Harassment and living in constant pain is making the USA a bad country to live. Don’t be a cheerleader for those who do harm. I’m not. I advocate for pain patients. The coming FDA proclamation will absolutely not do what pain advocates do. More pain guidelines wiil simply be moot or harmful as past grandiose pronouncements have proven. They have little empathy or morality. I am tired of all the rules that are hurting and killing the weakest among us.

Lauren Gilbert

I am one of the chronic pain patients being affected by these new policies. I won’t even address the increase in the amount of pain I experience every day, but I will address the effect that these policies are having on my body (which is already really broken) and my daily life. I had a part-time job that allowed me to actually get out of the house and contribute a little something to society while helping to increase my meager social security check. I’ve lost that job now because the drastic immediate decrease in the medication that I was taking according to all the rules set out by the state that I live in order to even attend or be a patient at a pain clinic. With the drastic, immediate decrease in the amount of medication that had already been decreased oh, I simply was unable to do my job.This post brings hope but January seems like a long way off. So many people who have been following the rules and just been getting by with some amount of relief are still looking at months and months before any constructive changes will happen for us. Why is it that whenever there is a “crisis” in this area that only the people who are following the rules are affected? My hopes and my prayers are simple, that this Injustice that is being visited upon good people with bad bodies will be addressed sooner then later. It seems to me that the doctors who are treating chronic pain patients know better than somebody in Atlanta or DC the individual needs of each of their individual patients. these doctors have no choice but to break their Hippocratic oath which states first do no harm because bureaucrats are threatening to take their licenses away. I don’t think I’m asking for much, because even with the regular amount of medication that I was taking my pain level as long as I took my medication without missing any specific hourly dose was still a 7. I’d like some of those folks up there at CDC to try living with that everyday and go into work and do their jobs.

Mike Ellery

I dont give the goverment such glowing compliments.They didnt care when they started this process…they dont care now.They have cost some citizens their lives.I will never forget this.Probably what happened is a few of the “higher ups”got a taste of the tapering when it hit a relative or loved one.Thats when things change;when it hits close to home.As for me,i will never trust the goverment again.

F.S.T.

While opioid reductions may benefit a couple dozen people, the Task Force needs to listen to what the rest of us chronic pain patients have been saying all along:

LEAVE US ALONE. PUT US BACK ON THE OPIOID DOSAGES WE HAD TO BEGIN WITH, THAT WERE OUR SUCCESS STORIES.

And then we’ll be glad to comply!
The underground illegal drug lords are listening and watching what’s happening. And they’ve been quite thankful to these asinine opioid “scare” talking heads. Who wouldn’t be? Their profits are up, the selection and quality of their wares is better, and they’ve got what is probably going to be lifetime return customers: those chronic pain patients who have lost confidence in their doctors and the powers-that-be who are hellbent on killing us.

Great job, CDC and DEA. Way to go.

Heidi, Seattle WA

What still worries me about the report is there was not specific protection for doctors who are willing to prescribe more than the dreaded 90MME. I did state that worry in my comment to the Task Force, but will not hold my breath that a possible solution will be put forth. There has to be a better method to even start an investigation into a doctor’s prescribing pattern! Too many wonderful, caring doctors have left the field. CA especially needs to tear up their ‘we will prosecute you if you ever prescribed opioids years before to someone who OD’d 10 years later “. Doctors also need to learn to listen to patients who have tried every procedure or treatment available before relying on opioids for pain relief, even if the doctor may not fully agree. CPP’S know their own bodies, conditions or diseases, usually far better than a doctor, and what treatment works best for them.

Progress is being made! There seems to be hope that things are changing. For my husband’s sake, I just pray it won’t be too late.

Gary Raymond

Primum non nocere. Where are the lawyers in this witch hunt? The United States Supreme Court was interrupted over a cake. Each Illegal immigrant has a lawyer. Where are the laws that say Schedule II opioid analgesics are illegal and Schedule I marijuana is legal? Lawyers are fearful their Schedule I cocaine will be withheld next. People suffering from chronic pain have a constitutional right to pursue happiness. It is up to our governments to guarantee that pursuit – not deprive us of it.

Laurie

The Doc are afraid of the DEA yanking their licenses…and who wouldn’t be? If we could get the police state out of the oversight of our medicine, we could, maybe have better medical care.
That said, I’m glad some people are finally coming to their senses in this new, senseless drug war on doctors and patients

Rosalind Rivera

As I read this report, I’m thinking that the tapering off of opiod medications does not address the core problem and crisis. The patients’ opiod medication is reduced, even slowly, how does any of this address the very fact that patients, including myself, are back to the beginning meaning that they are now in the most terrible crisis in their lives and that is that now their pain increases to the point that for many is completely intolerable. Once again, patients will suffer tremendously and not just psychically but psychologically as well and many, many more will turn to illicit purchasing of either pain medication or illigelal drugs from back alleys in order to ease their pain. This approach solves very little for some and does nothing for others. There will be a tremendous increase in the sale and buying of drugs such as Fentanyll patches, Heroin and the list goes on and on…

Rosalind Rivera
Lucerne Valley, Ca.

Gail Honadle

Not a thing will change, because those states want in Big Pharma’s pockets. Most of us don’t trust Pharma, dislike them for the Bad Drugs they approve that damage and kill. Or cost a fortune and insurance won’t cover them. Two weeks of SIBO antibiotic retails at about $1,550 for 2 weeks. It was so expensive that even at the Pre-negotiated price for Medicare/Tricare Life BALKED at filling it at a Private Pharmacy, and said get it filled at the Naval Base Pharmacy. A Pharmacy with very limited hours, closed on weekends. Or for what ever reason they chose.

Intractable Pain Patients are EXPENDABLE. Why do you think so many states are passing Euthanasia laws, states that won’t even use the same drugs to put a convicted killer to death with.

Debbie Nickels Heck, MD

Please use the word “eager” rather than “anxious,” a mistake I’ve often made myself but has a very different connotation. Having an English teacher mother made me aware of such nuances and ME a real pain in the neck!

I was researching treatment for broken bones. Both human and dogs. The Mayo Clinic treats fractured with over the counter nsaids like ibuprofen or Tylenol. Dogs on the other hand are given Tramadol ( a lower addictive opiate).
Until we start treating humans as humans this is all a bunch of [edit].
The CDC guidelines were just that, a guideline. They even stated do not make this law because this is a starting point. But states like Michigan who are owned by large insurance companies pushed to have these starting point guidelines set in stone. Until the focus is centered on these horrific insurance companies and their enormous profits very little changes with actually take effect.
We know the system is broken, so stop talking about how the FDC recognizes there are problems with the opiate crisis and fix the problem. Talk is cheap especially when millions of people are suffering. It’s no longer just chronic pain sufferers but now it involves accident victims and injury patients. Most patients with a fractured humerus get 5 days of opiates for pain relief even though it takes a minimum of 2 months for just the bone to heal. Most fractured also cause severe tissue damage which may take longer. It takes almost an act of God to get extended opiate relief. When they relent you may get one or two days of opiate relief then nothing regardless of the pain.
Until we ban together and go after insurance companies nothing will ever change. So lets spend more precious time talking about the issue while millions continue to suffer.
A question for all of us chronic pain sufferers; did any one of you get any sleep last night? I haven’t had more then a few hours here and there. Nights are always worse. Anybody sleep last night?

Rebecca Hollingsworth

Thank you Ed for the information. I am so glad that 6000 responses were sent. The extra thousand is a super response. My greatest hope is that changes will be made and made quickly. The needless suffering continues and we are losing cpp’s daily because they have reached their breaking point . Prayers for all. Keep fighting. We are worth it.

Vincent

I hope this makes a difference because at the rate of tapering I’m on, I’m gonna lose my job and be stuck in a terrible place in life. I’m being forced tapered and it’s getting rough. I’ve had all types if procedures and physical therapy and take drug test every month. I’m down to one break through pill a day 2 extended release doses and 4 fiorinol. They are gonna continue tapering in return will leave me in a place of no work and after 10 years of treatment all for what is how I feel. This news is making me feel better but I am not convinced it will help unless FDA and CDC makes a public announcement. Is that what will happen? Will all agency’s please make several public announcement’s to not force taper patients and make it clear that if the regimen was working please continue to treat patient with the prior regimen they were on. Please help us!

Thomas Wayne Kidd

If this continues the tapering of chronic pain patients meds, what good will become of yet another insane decision by the FDA? The tapering will continue and many more patients will commit Suicide or die in withdrawal. Doctors need to restore our pain medication back to the manageable level where we can function to what ever level we are able. I for one cannot be taken off the Methadone which I have been on for more than 30 years. I am not encouraged by this decision. My appointment is coming up on the 24th. A
and I don’t know what to expect! I have been reduced from 5-10 mg per day, to 2-10 mg per day and I stay in constant pain. Trying to talk to my pain doctor is useless so far. Suicide is absolutely not an option for me. So if I hear that I am to be taken completely off my medicine I am in deep trouble. Going to the ER is a waste of time, alcohol for pain does not work. I can get alcohol poisoning quickly and will die from lack of care and compassion. This same statement has been said for years about jerking people off opioid Medication, I have gone through this at least 3 times in the history of my treatment (?) Yet here we go again. In am wondering just what doctors are taught in the medical schools? Logic evidently is not taught. I am a born again child of God and understand suffering is part of my life in this world but this is nothing short of evil wicked torture. Government control is what is happening here and sadly most chronic pain sufferers are not getting it. I pray that I and millions more can survive another round of insanity pushed on us as our government plays political games with the sick and dying. Where is the good news???? Now if we were being returned to some kind of actually treatment of our pain I might be able to rest easy. But I haven’t seen anything that would indicate this. We are told to wait. Many people cannot wait for this any longer. Please explain this to me if I am wrong!

Jud

The report will be important to pain patients in other countries,too. It’s too bad that people with the power to dictate the lives and wellbeing of others go through such arrogant stupidity before education, knowledge, common sense and humanity prevail.