Has the DEA Gone Too Far? A U.S. Senator Who Is a Physician Writes the DEA

Has the DEA Gone Too Far? A U.S. Senator Who Is a Physician Writes the DEA

U.S. Senator Bill Cassidy, M.D., (R-LA) is urging the United States Drug Enforcement Administration (DEA) to ensure patients with chronic pain, who use their prescriptions responsibly, continue to have access to their needed pain-management medication as policy is carried out to combat the opioid crisis.

“…The 2016 Guidelines for Prescribing Opioids for Chronic Pain have been misinterpreted or misapplied, presenting a challenge to patients with chronic pain and those who treat them… Reports share that some of these patients have thereby turned to illegal opioids… Proper education and training is essential to providing adequate care to patients who suffer from acute and chronic pain,” said Dr. Cassidy in the letter.

Cassidy has been a leader in the fight against the opioid crisis, introducing legislation to give law enforcement the tools they need to combat the epidemic, and legislation targeting foreign mail containing illicit opioids. Read more about his work against the opioid crisis here.

The full text of the letter to the DEA is below:

Dear Acting Administrator Dhillon,

Over the last 20 years, the scourge of the opioid crisis has escalated. Opioid deaths have increased dramatically, accounting for over 47,000 deaths in the United States in 2017. The total economic burden of prescription opioid misuse alone in the United States is $78.5 billion a year, including the costs of healthcare, lost productivity, addiction treatment, and criminal justice involvement.

I commend the Drug Enforcement Administration (DEA) Diversion Control division in actively engaging the 1.6 million DEA registrants involved in all aspects of the opioid crisis including the manufacturing, wholesale production, prescribing, and dispensing of Controlled Prescription Drugs (CPDs), addiction and overdose deaths. The DEA’s Diversion Control efforts are geared towards preventing the non-medical abuse of CPDs by providing education and training within the pharmaceutical and medical community and to pursue those practitioners who are operating outside of reasonable medical standards.[1]

As a physician, I know that when the DEA speaks, doctors listen. On April 24, 2019, the Centers for Disease Control and Prevention (CDC) emphasized in a commentary published in the New England Journal of Medicine that the 2016 Guidelines for Prescribing Opioids for Chronic Pain have been misinterpreted or misapplied, presenting a challenge to patients with chronic pain and those who treat them. There are anecdotes of patients on stable doses of opioids for years, being cut off from prescriptions (forced tapered or abandoned) due to physician misinterpretation of the CDC guidelines. Unfortunately, these reports share that some of these patients have thereby turned to illegal opioids. For many Americans who suffer from chronic pain, these misapplications lead to them not receiving pain treatments that might otherwise be a part of a healthy pain management regimen that result in measurable improvements to life functions, including a return to work, quality of life, and improvement in activities of daily living. Providing the medical community with proper education and training is essential to providing adequate care to patients who suffer from acute and chronic pain.

On May 9, 2019, the U.S. Department of Health and Human Services (HHS), in conjunction with the U.S. Department of Defense (DOD), the U.S. Department of Veterans Affairs (VA), and the Office of National Drug Control Policy (ONDCP), released its Comprehensive Addiction and Recovery Act of 2016 (CARA) legislated final report, Pain Management Best Practices Inter-Agency Task Force Report: Updates, Gaps, Inconsistencies, and Recommendations. This report, made by 29 members with backgrounds in pain, addiction, mental health, state medical boards, primary care physicians, nurses, pharmacists, veterans, and professional medical organizations, was released for key stakeholders to assist the public at large, private stakeholders and government agencies in their attempts to improve the quality of pain care given to patients in the context of the current opioid crisis, as well as aiding in the proper interpretation of CDC guidelines.

Among other things including education, risk assessment, non-opioid treatments, the Best Practices Final Report emphasizes a key distinction between patients – there is the patient with chronic pain, on stable doses of opioids, in which the dose does not escalate (and does not have any indications of opioid misuse, has met the requirements of their treatment agreement, and are generally compliant patients with clear benefits of opioid treatment) while the patient remains under a physician’s care.

This is in contrast to another group of patients (with opioid use disorder, at risk for overdose and death) who exhibit drug seeking behavior such as escalating doses, doctor shopping, purchasing illegal drugs, and resorting to criminal activity to support their lifestyle who would clearly require a different approach to treatment than the previously mentioned group.

Anecdotally, patients whom I know to have been on long term stable doses of pain medicine are complaining of no longer being able to obtain proper pain treatment and their doctors pointing to pressure from the DEA and/or citing the CDC guidelines. I have included an example of such a patient letter as an attachment to this letter. I am concerned about the unintended consequences of clinically appropriate patients no longer receiving or having access to the appropriate treatment due to ongoing misunderstandings between the physician and regulatory agencies such as the DEA.

To this end, I would appreciate your response to the following questions:

What instructions does the DEA give to pharmacists and physicians as they treat chronic pain patients?

Do these instructions differentiate between the two types of patients described above? Those on stable, chronic doses and those exhibiting drug seeking behavior?

If a patient has been on a chronic, stable dose of opioids, is there any reason that a doctor would feel pressured by the DEA to alter their practice of medicine by changing or force tapering the patients from opioid medications?

How has the DEA incorporated the recommendations laid out in the HHS Pain Management Best Practices Inter-Agency Task Force Report in its interactions with pharmacists, physicians, and other CDP registrants?

What other instructions or guidelines does DEA use in its efforts to properly educate and train pharmacists, physicians, and other CDP registrants?

What, if any, empirical trends have you seen from any production quota adjustments made by the DEA in its effort to reduce the amount of drugs available for illicit diversion and abuse while ensuring that patients will continue to have access to proper medicine in the medically supervised arena?

Tools like the Pain Management Best Practices Inter-Agency Task Force Report should be seen as a resource to better equip the DEA and other key stakeholders while seeking to combat the opioid crisis. Empowering the registrant community with instruction in best practices will serve those in need of medication who are combating pain in the acute and chronic period. This should prove to be a help as we all seek improvement of the patient’s well-being and overall improved function. I look forward to your response.

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Sabrina Webster

Did any aee the news feed on the cdc web site about misapplication of prescribing opiates which said their recommendations were not ment for doctors to use to cut peoples medications who were on high doses of opiates or to throw them out. I just want to say god is starting to answer our prayers. I believe that doctors are pulling this off as putting us down as new patients. The last pain doctor had me as a new patient for 10 months. He refused to help me period i even cried in his office i was hurting so bad . The sciatica in my toes has almost driven me to suicide and i almost went to the streets but i drank wine instead . Now i know why the elderly people i used to work for had a case of wine in their fridge. It was used for pain.check the paper u take to receptionist when u leave to get ur next appt.and thank u congress man cassidy for having a heart something pain doctors dont have anymore. I have never been treated by people so mean in my life. They refuse to read any of ur previous records , mri’etc. they want u to get new ones go to another physical theripast see another surgeon everytime u switch because u cant get help from them . I wrecked my automobiile from lack of sleep and rest. When i told the pa about the pain in my toes her response was no we will not help u hatefully. Then stop taking my money if ur not gonna help me i thought. These doctors are truely on a power trip and its sad . Cause now that i know how heartless they are im truely afraid of them. They can do alot of harm to a person . U shouldnt leave a doctors office in tears every month thinking id rather have my teeth pulled than step foot back in there.i finally left if i have to start over i will and if i have to be my own doctor i will . That is my attiude now. I win’t be treated like that anymore . Ill do whatever i have to to survive. They have pushed me that far .i honestly cant do this anymore

Plus,

Has the DEA Responded?

ALLISON JUDD

DEA.. CDC.. STOP THIS GENOCIDE OF MILLION’S SUFFERING. DO YOU HAVE A CONSCIENCE ? YOUR TRYING TO STOP THESE DRUG’S FROM GOING INTO THE UNDERGROUND. ARE YOU SERIOUS ? WHAT A LAME EXCUSE . IT’S A SLOW PAINFUL DEATH YOUR ARE SENDING US TO. STOP STOP MAKING YOUR EGOTISTICAL REGULATION’S. EACH DOCTOR NEED’S A CATEGORY ” CARD ” . SIGNIFYING EACH PATIENT AND THEIR PAIN LEVEL. DOCTOR’S NEED GUIDELINES IN PRESCRIBING. THERE ARE NONE. SO THEY HAVE NO IDEA THEIR LIMIT”S.. GESTAPO STYLE RAIDING IS AN OUTRAGE WHEN A DOCTOR HAS NO GUIDELINES AND IS ONLY TREATING HIS PATIENT’S . THEY ARE NOT CRIMINAL’S. THEY KNOW AND UNDERSTAND THE RISKS WITH TREATING PATIENTS WITH OPIOIDS. AND A GUIDELINES AND RISKS MANAGEMENT SHOULD BE IMPLICATED WITH PRESCRIBING OPIOIDS. YOU LEAVE THE OUT-COME ON THE PATIENT.. NOT THE DOCTOR.AND HIS DISCRETION . ITS NOT HIS FAULT SOME BECOME ADDICTED, THEY HAD ADDICTIVE PERSONALITY DISORDER BEFORE HAND. HE CANNOT BE HELD RESPONSIBLE FOR OTHER’S OUT COME.. YOU CAN NOT SAVE EVERYONE.. THAT LUDACRIST !!! STOP STOP THIS GENOCIDE.. IF YOU … DEA… CUT BACK ON QUOTA… YOU WILL KILL THOUSANDS OF PEOPLE AND THOSE AFTER SURGERY… OUR BLOOD WILL BE ON YOUR HANDS… STOP THIS NOW. DEA.. AND GET BETTER ANSWERS.. THAN BEING A GESTAOP..

R Arroyo

I have been a chronic pain sufferer for 18 years with Complex Regional Pain Syndrome. For the first 3 years I tried every medication & treatment to find relief for the excruciating pain and finally was prescribed an opioid medication. For 15 years I was on a stable low dose along with a benzo for my extreme anxiety (that I was on long before I was put on pain med). In Nov 2018 I was stopped cold turkey from both due to the CDC guidelines and the NP telling me & my family she would not lose her license for me!! When did a government agency become my physician? Why do CPP’S have to give up what quality of life we HAD? Responsible pain patients are just that, responsible.

I have been a chronic pay patient for more than half my life. I was a nurse and got hurt on the job.
So far, I have had 13 back surgeries and most of my spine is held together with titanium. I have 12 loosened screws and a broken rod.
I have not received any pain medication for five and a half years.
Consequently, my life is not a life… just an existence. I spend most of my time lying in bed on my left side ONLY, I even have to eat lying down.
The only thing I take is medical marijuana and it does not work! The only time I get up is to go to the bathroom. The only time I leave my house is for doctors appointments.
I have to undergo another surgery to replace the screws and to fix or replace the broken rod.
Frankly, I am scared to death about this surgery. I have no idea if I will be able to to receive the pain medication post-op, especially when I go home.
The pain management I have now is a joke…they do NOTHING for me.
So, I just lay in bed, trying to read and trying not to cry.

Cynthia Cameron

I have recently had an unsuccessful back surgery that has left me almost completely bedridden. Because I cannot find a dr. who will write me opioid prescription. I cannot do daily chores around my house. Cook for my family nor attend family get togethers. This has left me very discouraged, isolated and feeling like I am worthless. I have elderly friends in CP. That if they can no longer get meds they will be bedridden too. 12 years ago I took my self off opioids. Which I had been on for 15 yrs. along with benzos. Because I no longer needed them. But remained on the benzos for an anxiety disorder. Now I can barely get those very much needed meds plus they’ve been tapered. Much less pain meds because the laws have restricted opioids and benzos together. I am a responsible patient that only takes my meds when I need them. I do not share or let anyone kmow I have them. They are locked up too. This is causing a lot of stress to those who worry they will lose their independence. Or have to live their life in pain. You are made to feel like you are a drug seeker when you ask for meds. This is not what medical professionals took an oath to. It is causing great harm to their patients. Get the illegal drugs off the streets. And quit making responsible patients suffer. The blame needs to be placed on the guilty not the innocent. Who only want to have some since of normalcy in their lives.

Ronda Bruse

Unless u have lived with high impact pain u will Never understand the severity in which it hits you. Having lived this nightmare I can tell you it unfathomable! I would take labor and delivery any day over this demon monster. I was a hard working mom for over 20 years when this disease struck me down an from that moment I was completely disabled crying and in so much debilitating pain I couldn’t move or leave my house.. Imagine being in so much pain u want to die crying Everyday of your life only in reality u really just want to live but u require strong medicine to combat your affliction? Then imagine the medical profession saying they can’t help you? I have been to hell and back with my conditions and I deserve proper medical treatment! Severe high impact Pain and disabilities living with such needs PM period ! All other treatments have been exhausted only to fail.. Strong medicine to combat Pain is a Must.. It is inhumane neglect down right cruelty your subjecting people with disabilities to.. This is a all out war on doctors and patients and a embarrassment to our country… Give us back our Dr. So we can rightfully take back our Heath care!!!

No rights in America

Random alcohol and drug testing for all public servants including the DEA Senators all White House employees also joint Drs appointments for all I’m expected too be taken too one room with 7 other patients and talk about my health problems in front of all No hipa rights for the disabled I’m only asking that the people who judge us and demeaned is live by the same insane rules that they think we should lived in the DC area for 19 years and saw too much do you k ow what some of these so call leaders are doing them selves???? B please join me in writing you State and federal and demand they live by their rules that they think we should I’m only asking them too do the same and see how they like it I’m guessing if they had too just once talk about their health problems in front of 7 other patients that they would be mortified and do something too change some of their ignorance and discrimination policies???????????????????????????????????????

No rights in America

Hey pain patients we need too demand random drug and alcohol testing for all White House staff all senators and all DEA agents lived in the Dc area for 19 years and saw too much first hand some of these groups of people are doing prescription opiates and drinking and driving if they hold us too the standards that they are and treating us badly they need too follow the same rules they deemed on us. We should demand that on all oh and yah since we no longer are given hipa rights they should try the same kind of appointments at Drs as they think we deserve its call group Drs appointments with 7 other patients in one room maybe that would mortify them enough too reconsider listening too us and realizing how wrong all the crap and damage they have done too people like us is???????

No rights in America

The DEA is not qualified too be my Dr. I’m feed up with the treatment that the US government has allowed too happen by allowing people too practice medicine without a license the damage that has been done by all mentally and physically too people like me who are permanently disabled have taken away and violated the constitution and in general our human rights by people who are not qualified too do so it is no longer a free country for people like me America Law now sucks and I hope that what these unqualified people have done as we die by their judgment by what they have done too us is murder and I hope that the same kind of suffering and judgment happens too the ones who are not qualified and they no longer have a voice and are treated like trash for no wrong doing of their own just like we are by them I am desperate too survive and don’t want too die but am because of unqualified know it alls Karma and God are not ok with people like me being denounced and condemned too die too try too save the street drug user who most don’t want help or care about anything but themselves MAKE AMERICA GREAT AGAIN BY ALL MEANS VALUE THE LAW BREAKING DRUG STREET USER AND GIVE THEM MORE RIGHTS THEN THE LAW BIDING DISABLED REALLY IM ASAMED OF AMERICA AND THESE POLICIES ALSO VERY TIRED OF BEING TOLD THE STREET DRUG ADDICTS HAVE A ILLNESS ITS NOT THE SAME THEY CHOSE TOO DO THIS TOO THEMSELVES DISABLED DID NOT!!!!!!!!!!!!!!!!!!!! Most of my disabilities are caused by the true really bad drug ALCOHOL AND DUI DRIVERS WHO DIDNT LOSS THEIR LICENSE IN THE TAKING OF MY HEALTH THANK YOU TOO AMERICAS POLICY FOR NOTHING!!!!!!

Kerry Smith

So let me simply answer this question and it is yes! My experience comes from a week ago when I had a full lumbar fusion. Total lumbar. Fused. I am living right now in so much pain that I cannot see straight and yet the only thing that my surgeon can say is that he is sorry. His hands are tied. I am taking 1 percocet, 7.5 325 three times a day and a cheap muscle relaxer. Oh, and a hydrocodone 7.5 325 for break through pain. Right after surgery, I was having Diladid infused into my veins 4 times a day. They had to stop it. When it came time to go home, my surgeon said there was nothing he could do without being locked up and losing his medical license so this was the best medicine he could provide. My scar is over a foot long and I have 50 staples.Surgery was supposed to be 3 hours but instead was 7. All hardware was replaced and the doctor had a difficult time removing the old hardware. He would not tell us what he had to do to pull it out. My hips, for some strange reason, have become so painful that I can barely touch them. I am black and blue down my back and into my buttocks.I take 3 baths a day to try and help. My pain management group will not issue any pain medication either during this time. I am left with two options; to break the law and find a source somewhere of pain medication or to find someone that will sell me medical cannabis. We live in Tennessee and do not have MMJ options. I do not sleep. I cannot lay down. I am in such pain that I do not know what to do. Make no mistake about it, I have no fear at this point of finding a way albeit illegal of easing my pain. If this is what the DEA and FDA wanted for people who live with chronic pain, I would like to congratulate them for making civilized human beings act like wild animals. Should you think about having a surgery to improve your condition in life, you really need to think about the cost of such a surgery. More than likely you will suffer beyond your wildest dreams.

Terry

You bring up a great point. Normally compliant chronic pain patients are now seeking illegal drugs on the street. I am not one of them. I was originally taking 195 mgs of oxycodone daily, and I needed all of it to be able to function. Now I’ve been cut drastically and quickly down to 60 mgs daily, holy crap did my life change!!! I had to totally rearrange my life, seriously, sometimes I can’t go for a visit with my family because I can’t hardly move!!! I could go on and on but you all know what I’m talking about. And yes I think about getting drugs on the street because I can’t take this pain 24/7. So far I haven’t and I’m just dealing with it. I can’t even use the cbd ointment my mom sent me, it’s got cannabis in it, that would show up on my urine screen. It just sucks. I might be just be venting. God bless you all.

Dick fort

I’m probably just gunna kill myself soon I’m not gunna keep living like this and what I mean by that is this. My doctor for the last 6-7 months has cut my meds from 60 10mg methadone and 120 oxycodone, now before we go further I know that’s a tad high and is why I agreed with the doctor and said let’s start cutting the oxy even though it had been the best out of pain time I had I had been at that dosage for over five years iv been on pain meds for over 10 years, what I didn’t agree to is for her to keep going so no iv been cut to 60 30mg oxy and 30 10mg methadone iv literally been bed ridden for the last two and a half months, right now as I type this I’m in the worst pain iv been in years and I can’t take a single pill cause I’ll run out and be really screwed I literally begged her not to cut the methadone as that was what was helping me and also helping get through the month, this month she tried to say methadone is only supposed to be taken once a day which is complete [edit] if ur coming off heroine and go to the clinic yes that’s how they do it there once a day but when it comes to useing that opoid for cronic pain it’s fine to take it multiple times throughout the day also I found one research article that found 60mgs a day was an extremly effective dose when it came to using it for pain mangement, I was put on it cause originally I was going through and having up and downs with just the oxys so I asked for an extended release and after trying literally everyone the methadone worked the best, I literally can’t take much more and she wants to keep going further I won’t make it through this month as it is and she wants to go further I literally can’t walk to the bathroom just to bathe myself, the pain in my left leg is undescribable I’d rather someone stab me with a giant butchers knife in my leg right now, and u know what the doctor says to me “what I give u is what ull get and I’ll like it “ur prob see a video of me soon, sorry but I can’t keep going like th

Niese Cramphorn

I think this is Awesome on the part of Senator Cassidy but not just a little late, her comments are years too late. I have been under this assault for the last two years. My pain management specialist is under attack, being sued, and is license threatened. I am in constant pain, my entire body is in revolt to this miscarriage of common sense. Oregon is in the middle ages in this issue. The medical board is making up its own rules and laws regardless of what the CDC or any other acronym agency might want to see as the rule.

I hope this gets straightened out soon or it will be after my death.

Kathleen Ganley

What needs to happen now is this senator needs to speak out about this with the media in the halls of Congress to inform the public of this crisis. I have a feeling this letter will be the end of it and we won’t even find out if the DEA responds. It is a crisis and a war on chronic pain patients. Senator Lamar Alexander is also interested in this, although he is retiring. We have advocates, we have activists. Remember when the ACA was being threatened and the disabled community with their advocates filled the halls of Congress protesting against that? They made a lot of noise and they got attention. Our advocates and activists need to start talking to the public, not just us and not just at these hearings, where they try to shut us up. Why won’t the CDC and the FDA speak up after their clarifications of the guidelines? It seems like all we do is talk to each other and it is getting us absolutely nowhere. I would like to know if they try to get booked on cable media shows or even local news and are turned down. I really think it’s because it goes against what everyone has been lied to about over and over again and it is not politically correct to talk about the benefits of opiate medications for chronic pain and even acute pain now, considering what is happening to people in hospitals postop. Nothing is going to change unless the public is educated and told the truth.

John Steward

At my August appointment, my excellent pain specialist/MD told me that she would have to start lowering my dosages of opioids to meet the magic, arbitrary number set forth (?) by the government. She told me that an Emergency had been declared, giving the government strict oversight of doctors prescribing opioids for the management of chronic pain. (In her defense, I hope I am repeating this correctly)

If the DEA is threatening legitimate doctors to the point that they fear losing their medical license, and thus their livelihood, then this has gone farther than a misunderstanding of some recommendation. This Big Brother approach is causing really problems for real people. We have enough to deal with, coping daily with intractable pain, the financial hardship of being disabled and unable to work, the sheer boredom of being stuck at home and socially isolated due to chronic pain and disability.

The desire to rant and rave is strong. I am so frustrated by my disability, and the government is now piling on with draconian oversight. Please, please, please, straighten out this mishegas.

Stacie Wagner

These questions are well put but should have been asked and answered before the prescribing guidelines were ever issued. I know that my life has been destroyed by the actions of those that are supposed to be the gatekeepers of public safety. There are fates worse than death and that is the hell we have been sentenced to. In order to save the lives of chronic pain patients, these guidelines must be reversed because it is the only rational thing to do.

Don Prue

Thank you Senator Cassidy. Everyone is aware of the opioid crisis and yet it seems all the agencies involved ignore the facts which include who is misusing them and the increase in suicides as a result of uncontrollable pain.
Deprive responsible pain sufferers from relief and they end up becoming another illegal drug user statistic.
Chronic pain is depressing! The constant threat of losing legitimate relief is stressing. I have had seven back surgeries and was told by the surgeon that I would be on pain meds the rest of my life. I don’t want to be, I hate taking drugs but finally realized that he was right. I’ve discontinued them many times over but my pain truly is unbearable.
My pain doctor has tried every drug on the market to control my pain and I have a severe reaction to everything but Oxycodone. I don’t get “high, buzzed” or anything else. I only get minimal temporary relief.
It seems that no one believes that some people are actually responsible adults. I don’t know where to go from here.
Please continue to pursue your mission representing us.

Pharmacy Staff knows

Where was the response ? Do we get to know what happened . This was interesting but lengthy to follow in the beginning,
Can or should we (chronic pain patients) be contacting them with the same /similar questions.
This was a well put letter especially towards the end.

John

I am one of those patients – after exhausting other alternatives, I was on a stable but high dose of morphine for 20+ years – which I used as prescribed ….and it enabled me to live a normal life. Same Doctor, no issues…no increase in the dose.

Since this Opioid Crisis started Ive been forced to taper down and am now prescribed only 1/3 of the dose that worked well for 20 years.

It’s not enough. I’m exhausted from lack of sleep….I’ve been hurt several times at work and even totaled my vehicle when I fell asleep driving, I’m sick to the point if vomiting from the pain at least 3 times each week, and I put off needed surgery because I couldn’t possibly endure any more pain. I have cavities that progressed to the point I need the teeth removed – and I can’t imagine having that done and the additional pain – even though it’s possible an infection could kill me. I used to enjoy vacations with my family – I enjoyed hobbies and interests – but I haven’t gone anywhere or done anything but work in 2 years. I don’t enjoy my life anymore. And I don’t have any hope of things getting better. Fortunately my Doctor of more than 20 years hasn’t just cut me off and she’s seen how badly I’m doing and hadn’t reduced my dose any more for a couple months – but I know a reduction is coming and I honestly don’t know how I’m going to survive when that happens. I’ve really deteriorated over the past 2 years.

Our Governor brags about the things he’s done that are causing me so much pain. But when I call to ask his staff what am I supposed to do now that his policies are keeping me from being able to get the medicine that enables me to live – they have no answer.

The news is dominated by stories of attorneys suing the drug companies for causing addiction. I would love to see just once, an attorney taking these government officials to court for what they’ve done to people like me……

davidkenberg kenberg

FIX THIS MESS THAT SHOULDN’T BE HAPPING!!! IT NEEDS TO BE FOUGHT HARD FOR US WHO’S LIVES ARE IN DANGER.I KNOW NOW I’M FACING A VERY PAINFUL DEATH!! THANKS TO ALL OF YOU THAT HAVE LET THIS HAPPEN TO US!!

davidkenberg kenberg

We need to form and get together some way so we can all say what we feel about this.Will this ever end or will we die first.Make them suffer like we do and see how fast they get there med’s which I’m sure a lot of them are on there drugs. I will be talking with the medical board and the CDC at some point. I have pictures to show to all of these people and what there doing to me and others who suffer the wrath of our diseases and conditions .Do we have to retain lawyers to fight for our rights to be out of pain? Do we go to Washington and bang there doors down to get help? Do we have to wait till a number of suicides to show how far they have gone to put us in danger for our life that we all have the rights to be treated for our severe pain? Tell us what are you waiting for? If you think this is ok you couldn’t be more heartless.Explain to our kids and family why we have to die because of there actions. That I have been made aware of no one can refuse to treat us with our severe pain and severe burning through out our bodies and the hell were stuck inside of our brain and bodies are torturing us every single day of our lives.When we wake up we are all thinking another cruel day to live in!!!! I really don’t think our hard work to fight to live matters to anyone.Why are Dr’s letting this happen to there patients when they know this is so very wrong? Why aren’t they all getting together to fight for all of us? They feel helpless and you can see it in there faces.Well give us answers that we so deserve.I’m sorry I’m being harsh but this is so very real for us suffers.We never get a response to all of our letters we always write.WE DON’T DESERVE THIS AND EITHER DO YOUR THREATS TO THESE POOR DR’S.So if you care as much as you say then fight as hard as we all are to save our own lives. Our lives matter!!!! Prove to us that you all really care and not to right stuff to shut us up.WE DON’T DESERVE TO DIE THIS WAY!!!

davidkenberg kenberg

I have read most of your comment’s and I agree with you all.I’m very sick as well for 18 year’s and never asked for medication for my pain.I didn’t want to be accused of any wrong doing as well. I think giving them the power to say we can’t be treated for the severe pain we barely live with day after day and hour by hour and our med’s being taken away from all of us who are real pain patient’s literally make’s me sick to my stomach. Because of there actions that are taken way to far and will kill a lot of us because our brain and bodies can’t take the severe pain we are in .It takes a huge toll on us. They are saying they don’t give a damn if we live or die I would think if this happens can’t our family file a wrongful death suit? I would think so. There putting us in danger and tying the Dr’s hands behind there backs so they can’t treat there patient’s that need help so bad. So there are Dr’s who are leaving there practice that they worked so hard all there life to helping patients who need them so bad .How dare they do this.I feel like we are receiving the death penalty because were very sick. A lot of time’s I think to myself how in the hell am I going to live with all this pain.I have been very active with my research for 18 years to understand my disease and how to get my Dr. to help me the best he can and now I’m reaching for help and then I get a call at my home that my Dr’s office will no longer treat me.I’m not even on any of those drug’s so that should tell you it has gotten way out of control. Were told to go to pain clinic and paying all our bills to see them and co-pays for nothing they can’t help us either. I couldn’t understand how people would get drugs on the streets.I know now!! Even suicide I get that as well. Most of us will have to resort to that. Is this humane no.by know means.I am so sick of this [edit]. I can’t even say how much anger this has given me and others who suffer for drug attics on the streets.SHAME ON THEM FOR DOING THIS TO US .

FedUpWithThisMess

The Senator doesn’t ask enough questions but it is encouraging. Congress should question their failure to address the real culprit, illicit fentanyl OVERDOSE crisis. It’s still on a killing spree while cops are trying to pin it on the wrong guy. It’s as if they’re paid to look the other way.
All politicians need to realize it IS politically correct to prescribe pain medication AND they really need to call out DEA failures.
The dea knew illicit fentanyl was a threat years before the CDC Guidelines but they focus on legitimate prescribing, and even if they think overprescribing has anything to do with this overdose crisis (it doesn’t) the DEA is the ONLY one who knew where medication was going way back when there were pill mills. Not pharma, not doctors… only DEA knew, they authorized increase in production. Law enforcement can’t move the line to suit them.
The DEA is failing doctors and patients miserably, as well as people with addiction because illicit fentanyl deaths are still rising.

D. Jackson

I need the matter addressed for people who have taken Xanax and Opiates for many years without any problems and being able to function daily, doctors have made patients choose one or the other stating the government told them the law has stipulated these changes, so please allow patients to continue taking both as long as it’s done responsibly

Roxanne Brewer

Thank God someone of some importance is saying something!!! I am cancer survivor with severe arthritis and spondylitis. I was stable on my pain meds had some quality of life, went to pain clinic where I was evaluated by psychologist, drug tested, followed monthly, was doing fairly well then boom dose reductions, etc. Now I’m taking suboxone for pain ever read side effects of this stuff? It was that or have my pain med dose severely reduced with no warning. Retired nurse (28 years), mom, grandma and this is how it ends.

Linda Kay Thomas

Thank You…THANK YOU, Senator BILL CASSIDY; THE UN-BELIEVABLE LETTER TO THE DEA HAS BEEN THE “BEST START TO MY YEARS”…. THANK YOU DOESN’T BEGIN TO EXPESS OUR GRATITUDE……AS YOU KNOW, NONE OF THE OTHER LAW-MAKERS WILL EVEN TAKE A PHONE CALL REGARDING THE SERIOUSNESS OF ” US CHRONIC PAIN PATIENTS”….I AM ONLY 67 YRS OLD AND DUE TO MY PAIN THERE IS NO QUALITY OF LIFE!!! I HAVE AGED SO QUICKLY AND I KNOW WOMEN IN THEIR 90’s THAT ARE YOUNGER LOOKING AND SO ROBUST IN THEIR QUALITY OF LIFE…..WHILE I AM LUCKY IF I CAN SCRUB MY BATHROOM….MAKES ME SAD TO TALK ABOUT IT…..I LIVE IN S.E. TEXAS, BUT BATON ROUGE IS MY HOME….YOU MAKE LOUISIANA (AND THE CHRONIC PAIN COMMUNITY VERY VERY PROUD)…..OH, AND THE LETTER WRITTEN BY CINDY STEINBERG TUGGED @ MY HEART….GOD BLESS YOU, SENATOR AND PLEASE TELL CINDY THE BOTH OF YOU ARE IN MY PRAYER……WELL DONE!!!!

George Douglass

I just read all the comments and “Fed Up” said it all in the fewest words. I am a suffering stage 4 Cancer patient and Our Blood is on the Hands of all these compliant legislators who sat on their hands and let this happen. It truly is that simple. “Good night and Good luck!”

Joyce Noel

My husband is one of those negativly affected by the opioid crisis. He was on some form of pain medication for his back for 27 years and it was taken away. He has subsisted on Street drugs for the past two years and he has been honest with doctors about it which has resulted in pretry much bei g told to ‘stay a junkiie’ . He would absolutely give up the street drugs if he could get help. He has suffered a heart attack from the pain.

Joy Robinson

Well, Sen. Cassidy made a half-hearted attempt to fight for Chronic Pain Patients. But, it was only for -certain- Chronic Pain Patients, and I quote:

“This is in contrast to another group of patients (with opioid use disorder, at risk for overdose and death) who exhibit drug seeking behavior such as escalating doses, doctor shopping, purchasing illegal drugs, and resorting to criminal activity to support their lifestyle who would clearly require a different approach to treatment than the previously mentioned group.”

For those with escalating conditions and/or who’ve been on the same mg dose for years, the need to adjust their medications is vital. Now must we be afraid to talk with our provider to avoid being labeled “drug seeker”, “a risk” or diagnosed with “opioid use disorder”??
What about the Chronic Pain Patient who also has a mental health diagnosis? Are they too a risk? What if they had a mental health crisis?
I ask these questions as I embody this scenario. There are too many vulnerable patients falling through the cracks of the healthcare system.

Sen. Cassidy is only presenting a “best case scenario patient” in his letter to the DEA. If he is genuinely concerned and truly fighting for the Chronic Pain Community I urge him to go back to the drawing board. It I imperative that -ALL- in the Chronic Pain Community have access to the care and medications they need. To prevent abandoned patients from obtaining dangerous, life threatening medications from illegal sources and to prevent suicides.

ElizabethR

Although I’m not sure it will help, it’s encouraging to see a physician differentiate between compliant pain patients on stable dosages of opiate medication vs. a different population consisting of those with a possible substance use disorder. I think it is even more important to note that overdoses and deaths are, overwhelmingly, occurring among people in their teens and 20s who misuse drugs recreationally; they are not taking medication for any medical purpose. These are entirely different populations!

Misclassifying mature adults with multiple incurable, painful medical issues as “drug addicts” and treating them like potential criminals is cruel and wrong but, even more important, it is not addressing or solving the “opioid problem”. Overdosing and deaths caused by heroin/fentanyl ingested by young adults will not be stopped by denying grandmothers the pain medication they need to maintain functionality and some quality of life in old age.

Kathleen Ganley

I have posted this article on Facebook. I don’t understand why news organizations will not include chronic pain advocates to discuss what is happening to our community. Are they afraid of looking “politically incorrect?” Do our advocates reach out to them and are ignored? I am getting fed up that our “crisis” is not being discussed.

C.Hall

I just have one paragraph I took issue with, which is a ‘Public Interest’ issue. U.S. Senator Bill Cassidy, M.D., (R-LA)stated: “Anecdotally, patients whom I know to have been on long term stable doses of pain medicine are ‘COMPLAINING’ of no longer being able to obtain proper pain treatment and their doctors pointing to pressure from the DEA and/or citing the CDC guidelines.” I wouldn’t say patients are “complaining” but reserving and exercising their rights. We are telling someone that we have the right to do something specific, and that we will discharge that right if we feel it is necessary! “The denial of access to pain relief, if it causes pain and suffering, constitutes cruel, inhuman or degrading treatment or punishment.” {via Article 7 of the International Covenant on Civil and Political Rights (ICCPR)}

Furthermore, a report to the Human Rights Council in 2013, the Special Rapporteur on Torture described “abusive practices” in the health care setting. The Rapporteur
stated that a denial of pain treatment may constitute cruel, inhuman, or degrading treatment if it fulfils three criteria—the suffering of a person is severe, the state is
aware or should be aware of that suffering, and the government has “failed to take all reasonable steps to protect individuals’ physical and mental integrity.” As an
illustration of what constitutes “reasonable steps,” the Rapporteur stated that ensuring the availability and accessibility of WHO Essential Medications” is not just a reasonable step but a legal obligation under the Single Convention on Narcotic Drugs, 1961.” {via Pain Management: a Fundamental Human Right. Anesth Analg 2007;105:205–21)} that outlined the legal rights to pain management.

“So, before” any authority pass edicts, let’s listen to the people it will mostly affect!

Thomas Kidd

I must bellow once again. Many people think this evil wicked madness was only started in 2016.WRONG! I have been in daily chronic pain for 30+ years of my 67 years, and I also have Narcolepsy. It’s a mild form of this sleeping disorder but it has caused me to be disabled at the age of 42 years old. My wife has lower back pain which has caused her to not be able to work, and at the present she can bearly take care of herself. In May of 2006 we were both told at a pain treatment clinic near our home that we would not be seen anymore and we would have to find another pain management clinic. At the time I was the only one with Medicare and I finally talked my PP into sending me to a clinic 77 miles one way. My wife and I were both being treated with Methadone and she lost everything. I continued to share my medicine with her and continue to to this day. She has her Social Security now and Medicare to but there is no way she can get into treatment. And if this gets out we both will be allowed to die. A few months ago I was having a big pain flare-up and my wife took me to our local ER which had city police and Sherif deputies who were following the ER providers around and that wasn’t bad enough they stood and jeered and mocked me and my wife. Anyone should see why I am near the end of my rope. At the time of my ER visit 2 ten mg tablets would have gotten me through to refill the next day. People in Russia and China aren’t treated like this. My wife and I haven’t gone to the streets for pain medication but we cannot rule it out. I very much agree with a couple of comments on here. “This is way to little, to late. We have trusted our Lord and Saviour for many years and will continue to trust Him. Even unto death if it comes to it. But suicide is not and never will be an option. We are lovers of life and especially eternal life. But at the same time we understand why those who do committ suicide, do so. All people have not faith and cannot bear this.

Doctors who abandon or neglect their chronic pain patients, any patient, should be sued. We cannot sue the federal government. I’ve checked with an attorney. He informed me that suits would be successful if we go after for-profit entity, doctors, clinics, hospitals. I pray noone else in my family develops chronic pain. And now, I can worry about appropriate end of life pain control for my remaining parent. I despise what our society has become and pray every day for miracles.

Charlotte Brock

Thank God Senator Cassidy has the courage to tell the truth. It is very disturbing to see so many suicides due to chronic pain.

Bradley Bill Parker

Yes as a Chronically sick Person with an Incurable Disease {multiple cranial nerve autoimmune disease} I remain a victim as collateral damage from this Countries crazy “kill all” war on Opioid Narcotics, or what ever they’re calling it. Twelve Months ago I was about Seven Years into the Serious Battle with an Aggressive autoimmune disease of the inner ear that’s raging hell across my central nervous system. Without a CLUE as To WHY, my Responsible Primary Care Physician decided To Pull Up His TENT STAKES and Move One Thousand Mile’s AWAY to Denver Colorado Without Any Advanced Notice to me What SO EVER. The Associated Hospital involved Literally Ignored my requests to be seen by another Doctor stating that they were all at Capacity, Yaaa Right [edit]. HOW MANY TIMES Has This Happened so far, AND There’s Literally Nothing That WE CAN DO ABOUT IT IS THERE. I can’t believe That I’m STILL ALIVE. UNTREATED PAIN IS TOTALLY A SLOW KILLER and I don’t recommend it to anyone else PERHAPS Someone could FIX IT. You Can’t Imagine What This is like.

Thomas Kidd

To answer the question! YES ABSOLUTELY YES. The DEA has went beyond the rule of law. How can a non-medical law-enforcement agency teach medical practice? Pardon me but a trained medical doctor should know better. We have become no better than Communists China and Russia in what has taken place with the mistreatment and torture of the sick and dying. What qualifications does anyone at the DEA have in any medical field? They use scare tactics on the law-abiding citizens of this country and the doctors trying to help the sick and dying. They must be stopped. The real drug crisis is on the streets with Fentinal and Heroin not prescription drugs. Why are people so blind. The DEA was never formed to cause more pain and death which is what they have done and continue to do. This is nothing but power gone mad and control of something which they know nothing about and will never control without just out and out killing people. Every DEA agent should study our history carefully and understand what was tried during Prohibition. Morality absolutely cannot be legislated, been proven over and over. Again I repeat, this is actually worse than Communism allowing a law-enforcement agency to have that much power. We have no free society and it’s probably not going to change until our elected officials wake from their money induced stupor. I am sorry if I sound harsh but after 30+ years of being cursed lied to and mistreated I am at the end of my rope. Thank you congresswoman for trying to help. But the facts need to be learned before wading in. It’s like the old adage, “throwing they baby out with the bath water. I hope and pray that some out there still remember just what that means. Daily chronic pain will cause a person to say and do many things which they wouldn’t do if they were treated like humans and not like criminals. People have been and are continuing to go to the streets for pain relief and I fully understand that. Let’s stop coddling the DEA
andCDC.

Thank God for Senator Cassidy. We all need to write Senator Cassidy & thank him. I plan to do so. I have written other senators & nothing but junk mail in return, I’ve also called & was not allowed to speak to them directly but the secretary & no one called me back or sent a letter regarding my call. Thank God just keep praying that Senator Cassidy will put pressure on the DEA to let up with these ridiculous torturing of individuals with chronic pain. I’m too afraid to go to the streets & everyday I think about it & today is a very bad day. If someone showed up at my door with street drugs I don’t know if I could turn them away. I hurt so much. I hate the very thought of doing something like that. I was raised to tell the truth & do the right thing. we that get no pain medication after me having it for 25 years with urine test being clean, pill count correct sometimes more was left then what I needed. I wish I had it now. My spouse was shocked when I said I don’t even want to vote. I have voted 34 years. Never missed. I don’t care anymore. I kn I’m blessed in so many ways but I can’t enjoy it cuz I hurts so much.

Laurie

I doubt my former neurologist will even read these new guidelines and the DEA will keep on killing people like me.
Now, I’m fighting just to keep my Clonazapam from being abruptly halted and hurting my heart even more.
I can barely move, but they don’t care. My prescription expired before I refilled all the prescriptions and now, I have to try to run around and get this fixed…how, I don’t really know.

I’ve been off my pain meds for about 1 1/2 months and I am too weak from a liquid diet due to a bunch of dental snafus to hardly get out of the house

Patricia Williams

Good for Senator Cassidy that he, at least, had the guts to ” Do what is right and face the consequences😆”. Advocating for MD’s having SOME discretion to use their medical training and individual judgement to tailor treatment to INDIVIDUAL patients is a risky move these days when algorithms, law enforcement, insurers and politicians dictate medical decisions. I only disagree with his pouring syrup all over the DEA, praising the DEA’s efforts to teach MD’s 😱 about medical opioids and pain management. Of course, Senator…physicians and surgeons listen when the DEA speaks, but it is NOT because they value their medical insight…it is because, like most citizens of this country, they are TERRIFIED of Federal law enforcement and assorted government bureaucrats who can so easily ruin careers and lives if you so much as come on their radar screen

Jody Hoffman

Why come out now and say this? He is a MD and he led the fight against the opioid epidemic, he was instrumental in the CDC guidelines being enforced, they were not misapplied because I read the guidelines & it is very clear that and says “this is not intended for chronic pain patients or terminal patients whose pain is well controlled, this is intended for NEW opiate prescriptions for someone who has never taken them before” it is clear to me and I’m a high school dropout. They chose to ignore that paragraph, they chose to taper and cut off long term chronic pain patients & terminal patients, overdoses and suicide increased in 2018 because people were going to the streets and buying pills or heroin to treat the pain and withdrawal symptoms and it was laced with Fentanyl, or they decided that it was better to die than be in pain and they killed themselves but suicide negates the insurance and not one person said this is why. They are going to start saying that mistakes were made by a lot of people & we are so sorry for your loss but we are going to fix it now because the pharmaceutical companies are settling, millions of dollars is earmarked for rehabilitation and Suboxone assisted treatment for addicts & I promise you that somewhere along the way these guys are going to be rich because of it. Wake up everyone until they come out and say STOP! You can prescribe more to the people who are in chronic pain and terminal it won’t change. I’m so damn sick of this [edit] over and over again. It was about money, I was a junkie and drug addict for years and no one gave a damn about me being an addict I cleaned up in 6 months of jail and have been for 26 years. Now junkies are worth saving? [edit] again they are going to be rich and that is all

Lori T.

The plight of the chronic pain patient continues its destructive path. The stories of those who continue to be cut from their usual medication regime is heartbreaking. As I have posted many times before, forced tapering and patient abandonment will lead many to street drugs which could cause immediate death. Many others will chose suicide. This insane encroachment of the DEA into our personal relationship with our own physicians needs to stop immediately. It seems like everyone that has any power over this situation is DEAF and BLIND. I can only hope this situation is short-lived. Gentle hugs to all precious souls affected by this issue. May you find strength and support in others. Pain can be a long and lonely road. Power and strength to all pain warriors.

American

Truly wonderful news to hear Cassidy is fighting to ensure chronic pain patients “continue” to have much needed medicine but what does this do for those who followed the rules, remained stable and never demonstrated drug seeking behavior for years only to be force tapered to such a low ineffective dosage that we now have to go completely without? Who’s gonna fight for those of us “in my case all but bed ridden for the last 17 months untreated with medicine and completely forgotten about? Why imprision innocent people within their own body and make them needlessly suffer? Many chronic pain patients feel they would die without some kind of help I know I will….

Sarah

Yes, the DEA has gone too far. For 20+ years I was on opioid medications that managed my pain and allowed me to function. Beginning in mid-2019, my doctor eliminated one medication completely and then cut my remaining medication by a third. I am once again in bed most of the time, depressed and in too much pain to participate in life. My husband now does it all; he shops, cooks, cleans, handles finances, laundry, ferries me to doctor appointments, etc. Early this year we had retired to an active walking/biking/hiking community in Midtown Atlanta and both of us looked forward to the healthy lifestyle change after our 30 years as suburban commuters. Now I am depressed and angry. I cannot find another pain doctor who will take me as a patient. Since we are new to the area, we are suspect. My husband and I spent 7 HOURS driving around to different pharmacies on my fill date last month before finding one that would/could fill my rx. In Atlanta, you can’t call and ask if a pharmacy has an opioid medication; you must physically present the Rx before they will tell you if they have it. Pharmacy personnel look you up and down and pass judgement. It is a very humiliating, time consuming process. We were both exhausted and in tears that day, fearful of not being able to find a pharmacy in time to avoid a cold turkey situation. Chronic pain patients, who have for years complied 100% with their pain management contracts, who never lost an Rx or asked to refill one early, who passed all drug screens and pill counts, have all been thrown under the bus.

God help us.

Fed Up

Thx for nothing, Sen. Cassidy. Where were you YEARS ago when you could have actually helped patients? The blood of all the suicides is on YOUR hands, as well as every other Senator & Representative.

Gail Honadle

Autopsy finds rapper Mac Miller died of fentanyl, cocaine and alcohol mix https://fox8.com/2018/11/05/autopsy-finds-rapper-mac-miller-died-of-fentanyl-cocaine-and-alcohol-mix/ combination of drugs and alcohol, “mixed toxicity,” saying cocaine, alcohol and the powerful opioid fentanyl were found in his system.

China Is Using Fentanyl as ‘Chemical Warfare,’ Experts Say
https://www.theepochtimes.com/china-is-using-fentanyl-as-chemical-warfare-experts-say_3067392.html

Jeanette French

HI, it isn’t just pressure from DEA and CDC to doctors and pharmacists, they have received warning letters threatening them with the lost of their license and their business, and the threat of criminal action against them. These letters exist as I have sent hem. So it is not a surprise that few pain clinic still exist today and some states no longer have any. Clinics that were raided and shut down, no one did anything to try to contact and help those real pain patients that were going there, they came to their appt one day and the doors were locked.Not all of their patients were abusers. The major drug problem we face in this country is mostly illegal drugs, and it is an endless vicious circle of useless procedures, violence,ruining of lives,and crime, bribery,etc..the drugs will come into this country as long as there is a demand. If this country really wants to stop the drug problem they will follow Portugal and Canada’s lead in legalizing the drugs, cutting the head off the snake. If there is no longer a demand, it puts the drug lords, mafia etc put of business. Remembering Prohibition, once alcohol became legal, there was o more mafia or illegal distilleries operating. The crime and violence stopped. There is no way to stop the drugs from coming into this country, they will always find a way in, new ways are constantly being found. There is to much money at stake for them to stop. So study and follow Portugal’s drug policy and institute it to stop all the billions of money poured down and endless rain.It does not mean drugs are handed out freely to anyone who wants them, Study their policies and it will all make sense. Their overdose deaths have plummeted. And then allow Pain doctors to again treat their patients and please set up pain clinics in reach of all patients again. Find those who’s clinics were shut down ho need help. The states without any pain clinics desperate need them,thx for hearing me.

Rebecca Payne

Thank you Dr. Cassidy for the thoughtfulness behind this. I’m begging for my life. And for all of us that are barely hanging on in hope that someday we will be well enough, and pain free enough, to actually find small glimmers of joy. This is not living. Life is not meant to be like this. Please help us before more of us die by our own hands.

Deborah Jacobus

Glory, Hallelujah and Amen!!! Those who have responsibly taken opioids should not have to go through the tapering or stopping of their medication!!