HHS Recommendations on Chronic Pain Due Late October

HHS Recommendations on Chronic Pain Due Late October

By Ed Coghlan.

It’s going to be the end of October before we see the set of draft recommendations of The Pain Management Best Practices Inter-Agency Task Force. Once the recommendations are released, there will be an extensive public comment period where the patients, providers, and policy makers can weigh in.

The task force was established to propose updates to best practices and issue recommendations that address gaps or inconsistencies for managing chronic and acute pain.

The U.S. Department of Health and Human Services is overseeing this effort with the U.S. Department of Veterans Affairs and U.S. Department of Defense.

The hearings in late September attracted several chronic pain advocates and federal luminaires.

U.S. Surgeon General Dr. Jerome Adams, who is an anesthesiologist with self-described “experience in acute and chronic pain”, said the process must result as a “message for effective pain management.” Dr. Adams did point out that his own brother suffered from addiction and his problems started with opioids.

Another official from CMS said that the goal is better pain management and we must get this right.

The power of the chronic pain patient was also evident.

Richard (Red) Lawhern, Ph.D. Margaret Wilson, and Trina Vaughn of the Alliance for the Treatment of Intractable Pain, attended these Task Force meeting and gave short presentations. 

Dr. Lawhern sees much that is hopeful in the directions which have emerged thus far.  Members and leadership of the Task Force have finally “gotten” several fundamental messages: 

     –  Regardless of the faulty assumptions underlying the 2016CDC Guidelines, the Task Force acknowledges that there is no one size fits all patient or treatment plan.  Treatment must be tailored to individuals. 

      –  For many patients, opioid therapy will continue to be a key component of an integrated treatment plan that may include other medication and non-mediation therapies as adjuncts (not as step therapy to deny access to opioids unless all else fails). 

 –  Tellingly, the Task Force will recommend against imposition of any mandated numerical daily dose threshold. This position in effect contradicts much of the CDC Guidelines and State regulations based on them.  It will be interesting to see if the final report extends this principle to 2019 rule changes of HHS/CMS authorizing “soft” and “hard” edits of prescription plans at 50 and 200 Morphine Milligram Equivalent Daily Dose levels.

     –   Mandatory or coercive tapering of high dose legacy patients is unjustified and risky unless some condition in the individual patient’s health justifies such action. 

The 90-day comment period will trigger a process that will result in a final report to Congress in May 2019.

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Authored by: Ed Coghlan

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Gina

I’m not feeling very optimistic, especially because of how the administration feels about opioids. If Republicans continue to hold the majority they will just follow their leader. I also don’t know if I can handle the severity of the pain I have until next May.

Elaine McKee

Hi everyone, I’m a chronic pain sufferer and I know what all people with pain are going through. I’ve been on medication for over 10 years but the dosage and strength of the medication gets lower and lower. I tried going off pain medication and was.in so much pain that my life literally stopped.. not much in the way of cleaning my house, cooking, everything I normally do to take care of my family I just couldn’t do. I have numerous issues with my back, as well as problems with my feet are legs and are all well documented so you’d think I wouldn’t have a problem with doctors but think again!! I have done pys therapy, epidurals, shots shots, shots and more shots but medication is the best way possible for me to live a productive life.. Btw, I am almost 60 yrs old. I am going to write to my states law makers. I have to try to make a difference!!!😱

Marjorie Booker

Everyone please write to your congressman, your senator, your state governor, state senator and state congressman. Get your spouses and parents and children all write. If you have learned nothing else from last few months, it is we have to shout out, “Hey we are being harmed. Tax paying chronic pain sufferers need your help. You have caught us in your good intentions and our lives are drastically changing in not a good way.”
We can’t attack because human nature will put them on the defence.
Also we should write other Senators as well. Activate your electronic voice and send the emails TODAY.
Don’t wait till tomorrow cause you won’t remember or have time.
Remember keep your story as short as you can and ASK what they intend to do for the chronic pain patient.

Alex

This appears to be good news. I hope and pray that these professionals will be heard as they speak out on our behalf. If I could I would give every one of our advocates a big hug and 2 week paid vacation to a destination of their choice. I am so grateful for their support. So grateful.

Are there any lawyers out there willing to fight for us? This would be a HUGE class action suit. I feel like this is no longer America, land of the free. What happened to my rights? Why do I no longer have the right to live without chronic, disabling pain?
These doctors only worry about themselves while us patients are considered guilty until proven innocent by a urine test. And then we’re guilty again until we take the next urine test. And let’s not forget all the money these companies that do the drug testing are making. This is not America, land of the free. I can only wish all the people making these stupid decisions suffer like we do for the rest of their lifetime so they can experience what we go through first hand. Until then, nothing will change unless someone will help us sue these idiots, along with these companies making millions off of our tests, and even most of the doctors that don’t put the patient first. What ever happened to “First do no harm..”?

stephanie logan

I was on a dose of oipiod pain meds for 15 years. I have a few chronic pain diseases. My pain journey started age 12. I went through 12+ surgerys to get rid of my my pain. I tried it all physical therapy injections ECT to only end up in worse pain. My primary used to write all my pain meds until DEA kept sending him letters. He sent me to a pain clinic. All was good there until a company that is a chain purchased the pain clinic. I was sent to see the head Doctor. I had my 29 year old son with me. This Doctor verbally and emotionally abused me. Telling me my pain meds can not be working because I was on them for to long and demanded he take me off! After 10 minutes of first appt he said ” the only thing wrong with you is fibromyalgia. Let’s back up a bit. When he came in the room he had a medical file and said so your taking Xanax. I said no I’m not! He very rudely said so your lieing because in your chart says you are. I asked what’s the name of the chart you have? HE HAD ANOTHEER PATIENTS CHARTS! He did not apologize nor did he go get my records that would have told him I have much more than fibromyalgia. Every time I tried to explain my medical conditions he got load and talked over me. As we were living he stops us and says doubt it be nice to get off this [edit] so you do not have to see me your parol officer! Right before that he says you know there are studies proving you have a huge risk of getting Alhimers when on oipiods long turn. My son says mom that would kill me to see you go through that. Then this Doctor says to me so get off so your son does not have to clean up your mess when you get Alhimers! I’ve never abused or misused my pain meds in that 15 years. This doc almost killed me taking me off so fast. I ended up in the hospital went from size 18 to 8 in 3 months and lost all muscle mass. I don’t sleep I early leave my home.i know have no quality of life and I’m only 56.
All cpp patients need there meds back! Will this be in HHS recommendations?

Beverly

I’ve been in unbearable excruciating chronic pain for years. I’ve not done nothing wrong I’ve worked hard and raised my family. I’m getting older and the pain is getting worse. The CDC guidelines in the DEA is making it impossible to receive proper care. I’m not asking for sympathy I’m asking for understanding. We need pain specialist not addiction specialist to fix this problem we’re facing. I know there’s doctor that are chronic pain patients. Why not have them sitting on your panel. For every healthy drug specialist that’s on that panel have someone suffering in chronic pain to balance it out. Let us live our life and dye in dignity not shame and pain. I’m not an addict and I’ve committed no crime.

Julia

Thank you for the update! My hope is that everyone who knows about this task force and everyone who’s taken the time to comment on this article will also take the time to make their voice known when the docket is open for our comments.

CathyM

This is good on a Federal level, if Lawhern is correct that they understand this about pain patients. But what about states?? Oregon IS considering mandatory ban on opiods for all Medicare patients (I’m not even gonna renew my application for Medicaid prescription help, to avoid being caught up in this next year!) I’m encouraged by the pushback from the pain community, and hope that with the “bipartisan bill” just passed, Congress will pat itself on the back and move on, letting the pendulum swing back toward the middle.

Connie Woods

I pray they hear us. There is a place for long term opiate use.
10+years for me. I’m at the end of my life and would like to still be able to enjoy it on days that I can.
I’m not hurting anyone. My medication is locked up and I’ve never had a problem. Unfortunately drugs on the street come from other Countries not the US. I should not be punished for other people who have addiction. My lovely daughter is and she would tell you it’s not us but them. Methadone has been a life saver for her. There is a place for both of us .

Rich Reifsnyder

Hello,Let’s try again,yesterday my post was deleted by the moderator!!!I totally agree with Cheryl.Any person on the panel or committee who knows or has a family member or friend who is addicted and OD and died should not be on the committee.The member should recuse themselves or be dropped from panel.There was bias from the start with the 2016 Opiod Guidelines,not one Pain Doctor,Pain Patient,or Pain Advocate was on totally biased committee.Dr Red Lewhern asked the HHS for an investigation into the CDC for Mafeance over The fictitious 2016 Opiod Guidelines,and I cant wait to see the answer and results of the investigation.Too many CPP,S and Veterans committed Suicide from the fictitious Opiod Guidelines.And there are millions like Me suffering inhumane torturous pain from this whole masquerade and war against me and millions of CPP,S and our beloved Veterans.The Moderator Deleted my post yesterday,so let’s do this again.No person on this planet,except a doctor has the right to tell me how much pain meds to take or force a reduction on how much pain meds I can take!!!!If this investigation of the CDC uncovers wrongdoings every single person from PROP to the Alphabet Agencies should be prosecuted to the full extent of the law for homicide and crimes for torture and inhumane treatment against CPP,S and Veterans.Millions are suffering and thousands committed suicide because their pain medication was reduced or taken away.This had turned into a Suicide Epedemic.I can’t comprehend how this Government can let a Disabled person in inhumane tortureous Pain suffer needlessly but have a Safe Place,Free Needles And a Guardian Angel standing by if a Heroin Addict OD,s,And let a 90 year old women cry in pain,then give Narcan to Heroin Addict.Why aren’t we taken care of when we been taking this pain medication for decades and have had a quality of life up until the 2016 Guidelines.Millions of us vote in November.

kelly

I am a 56 year old disabled woman that has been a compliant pain patient since 2012. I used to work hard, was vibrant, on the go, loved sports, hiking, fishing, movies, just loved life in general. I have slowly become dismantled of my former self. Sustaining injury from a traumatic gunshot, sustaining injury from years of hard work and heavy lifting and disease processes I had become disabled. How disheartening when you love life and like to work. I had hope. I had thought that with enough work and therapy that it was going to get better. I was prescribed opioids which were given me hope to get things done around the house. I was walking the dog, getting some exercise, staying in shape, and then it all came crashing down. The government had decided that doctors should not be given these drugs to pain patients. So I went in one day and my life took a dramatic turn. I was sent home with a small script of half of the amount I was originally taken, but why? I was well under the so called 90mme. Oh by the way that sleep medication I was taken to get rest every night to help the pain issues-can’t have that either. Now my world consists of watching the clock. So miserable that I watch the clock to see when that magic number rolls up so I can be out of pain for a bear minimum of 3 hours. So this is what the people in charge have given me 9 hours of so called pain relief. What happens to the other 15 hours? You grit your teeth, you cry, you rant, you lay in bed and dream of sleep, you day dream of what your life was like before, you rock back and forth in the bed flipping from side to side and just wish someone would knock you out. You don’t even won’t the other 15 hours of a day to be part of a day because only 9 really counts for anything.

kelly

I have a problem with this article right out of the gate. Dr. Jerome Adams who is an anesthesiologist. Okay the “anesthesiologist” part. Anesthesiologist are the new Pain management doctors across our country. What they are bringing to the community is a surge of procedures they claim are so beneficial that most doctors are pushing patients to have these done before they will prescribe opioid therapy and that is including the anesthesiologist that run pain clinics that offer these injection procedures. Most of these injections are types of steroids and other medications that are NOT FDA APPROVED. They are compounded medications that are made in settings where they can become contaminated. This happened in Maryland along with other states. People were severely sickened, some died, and some will never regain their former status. These are high dollar procedures that cost patients large out of pocket expenses. For some they have been beneficial but for others just another test filed into a very large folder in the search of pain relief. These actual doctors refuse patients opioid therapy until they have tried and exhausted benefits and money. They set up what seems to be like a assembly line of people on certain days that are what is termed injection surgical day. For some patients that have not had any benefit from these injections if seems to be the staffs and doctors opinion that they just have not noticed it yet or they document falsely that the patient is getting some relief. Like coaching the patients to say certain trigger words to document or just not believing the patient at all. Also I don’t think anyone can be fair that has had a loved one die of an overdose when making decisions for others in setting parameters or even making suggestions. Sorry but some of these people get into office and then start with their own personal agendas instead of seriously and solely doing the job they need to. Even VPBiden chose his last months of work to be on personal note

Patty

Chronic intractable pain is a condition that tortures me. My only crime is chronic incurable diseases. I’m a patient that deserves to be treated with proper medication, respect and dignity! Instead I’m treated like a criminal. I can see why people that are taken off life giving medications are wanting to die and actually committing suicide. Let our Doctors treat us! Or should I make my MS appointment with the DEA? This insanity needs to stop or we will see a “Suicide Epidemic” God help us 🙏🏼

Missy

I don’t get this narrative of “all these people” who ended up “addicted to opiates” that started with prescription pain pills!!! Before I was diagnosed with RA I was prescribed opiates because I hurt so bad. Once I was referred to a rheumatologist and was put on RA medications I felt better and immediately stopped taking narco that I was on for years! I wasn’t addicted! I did well for several years before I restarted my narco due to worsening conditions. I believe if someone continues to pursue hard drugs it’s not because they took Vicodin for awhile!🙄

Jami Williamson

I am a chronic pain patient for 2 years I sat on the couch or in bed crying. I told my husband this was not living and I was going to commit suicide. He took me into the doctor and pleaded to get my pain under control. That was 3 years ago, I am on daily lower dose hydrocodone and working full time and enjoying my family again. Yes, I still have days the pain will interrupt my day but knowing I can take a pill and continue my productive life is reassuring. I am terrified that my few pills a day that give me life may be taken away and I will end up back on the couch or in bed thinking about ending my life because the pain is just to much to live with.

I myself is also a chronic pain patient who needs my meds .i have been on my meds for years .im 62 years old i cant hardley walk .i have ra bad both of my knees are bad and i cant have surgery due to my health .i have had heart attack .i have arthritis so bad and diabetes real bad I’ve lost half of my foot .i agree these people have no clue what we go through .both of my med s have been dropped down .for chronic pain they should not be allowed to tell the dr how much meds we can take .cause what works for me might not be enough for other people .im so tired of hearing its for cancer people and end of life care come on just because i dont have cancer dont mean i should suffer in pain .i smoke marijuana as well it helps but it dont take away all my pain .i really think some of these people that are making these desisions needs to be in our shoes .u know it dont matter what we say the chronic pain people cause they wont listen to us no way anyway in there eyes we are all junkies ..no one cares at all about us .proven fact ..truth is the st drugs is what is killing people not pain pills .put a limit on the age on who can get them .its not our fault that young kids od off meds its there fault .we should not be punished for that .my wife is 39 years old i watch her cry everyday cause she is in pain .its not fare .

I have been on my pain meds for 20 years .without it i cant walk .these people do not realize what they are doing to the chronic pain people .u will push most of them to st drugs or killing them self cause they cant live with the pain .who ever said opiods are for long term use is a compete fool .and let them be in my shoes just for one day than tell me that .im 39 years old i have had open heart surgery a major heart attact .i have 3 hernaited disc in lower back i have gout .i have ra and graves disease i have a blood clot disorder .i have bad lungs ..i need my meds .and this is not fare for people like me. Lower the dose dont work for people like me .i have tried everything Physical Therapy nerve blockers everything the steroid shot injections of cortisone that’s what caused me to have the blood clots in my lungs from the start. .they people need to leave chronic pain people alone …

Claudia Webber

frankly I am appalled that the doctors who went to school to become Pain Medicine Specialists are now reduced to a common doctors level and a pharmacist has more power than a doctor who is fully aware of your ailments. I am a 55 year old woman having broken my back twice with 12 broken vertebrae and having had spinal cord stimulator implanted as well as the fact that I have and i c e d. The constant fear and anxiety that the cdc’s new recommendations have placed on chronic pain patients is insanity forced tapering certainly will not solve the problem but rather worse than it in other ways. The facts need to be reported properly semicolon the truth of the matter is they are skewed by the fact that there are overdoses of younger individuals using heroin and fentanyl which is bunched together with opioid overdoses. Statistically women over 50 do not OD on such medication. I have been forced to taper from my working combination of medication shots and exercise only to slowly see that I am no longer able to do what I was prior to this tapering. I now need additional assistance from my husband and being unable to do what I could do is quite depressing. I am in fear for all the chronic pain sufferers. Certainly it cannot be a one-size-fits-all situation and putting forth a law that requires 90 mm he’s for each individual is absurdity there are individuals that require more due to numerous complicated situations and the decision to be left in the hands of a specialist end of story I am both scared and angry hopefully our voices will be heard!!!!

Teresa Tomsic

It’s already been determined what to do. No matter what or how many people suffer from diseases, Illnesses, cancer, we are the addicts to them. I’ve lived over half of my life in pain. From a disease I didn’t ask for. It is a disability, cannot work- would have loved to work actually. I also suffer from other illness that go along with my first disease. “Interstitial Cystitis” which feels like bladder cancer pain and kidney dialysis! 30 years of this, no cure, no medication for it. As No one is taking this disease seriously! Were lost in the cracks. Plus other autoimmune diseases. I don’t have a good quality of life at all. I do what I’m told. I take my pain medication as prescribed and now My other Dr just took me off my anxiety medication with only 8 days. First time I’ve even met him. Switched me to a different Dr. He Saw what I was taking for my disease and told me he cannot prescribe my anti anxiety medication anymore. Getting down to it – it wasn’t about me, He said “He didn’t want to lose his job “, Didn’t ask me why I take pain medication Etc. Didn’t care. I suffer from PTSD, panic attacks and anxiety as well as I was attacked at the age of 15 and assaulted 2 times. I still live with it everyday. I told him I don’t need 2 pills a day, Even the lowest dose of 1 in morning and 1 at night or even just 1 would be sufisant so would I have a episode I would have something to help me. No he took me off cold turkey after being on it for over a decade. My first visit with him. Most of my life is spent in bed. I can’t work, I went to college, but had to stop because I was pregnant and had preeclampsia so I never got my degree. Plus what is wrong with me may have something to do with where I lived as a child. 4 families died of cancer on my rd. I lived in a good part of town. Then my next door neighbors both died of cancer around the same time??? We had a chemical plant there, We were wondering if that could’ve had something to do with the cancer and me?

Marie

Myself and my husband are both on opioids due to chronic pain issues,being reduced on our meds ,is not an option for us to be able to function somewhat.Push for medical marijuana then please.

Molly Canfield

I worry every day and late into the night that the most effective(so far) treatment plan for me includes opiods (along w/muscle relaxants, nerve medication and exercise) and that my legally, professionally prescribed medication could be taken away from me by my OWN government! While the DEA and CDC generally promote fear mongering often feels surreal to me, the ongoing anxiety and looming depression are all too real. I never, ever want to fall back into a severe, clinical depression as I’ve experienced in the past but (possible) loss of the most effective plan for treating my chronic pain threatens even the “strongest” among us. *Side question: When I shared with a specialist Id been referred to for a dermatology issue about my chronic pain story that I was on opioid therapy, this Physician’s Assistant scowled and said “You know they’re addictive??” How do my fellow Pain Warriors recommend I respond? Really seeking your thoughts and ideas.
(The reason the topic was broached in the first place is that I was asking the doctor if it would be acceptable for me to leave some US Pain Foundation literature as part of my ongoing efforts to educate and inform the public about chronic pain and those who live with it.)

Margaret Hardin

It’s so easy for these politicians and managers of CMS etc to point their fingers at those of us living in Pain and on Pain meds that give us a chance for a better life. But how many of us remember the “pill parties” of the late 1990’s and early 2000’s, when teens would raid their parents’ medicine cabinets and take whatever pills they could find to a party. Taking all the pills everybody brought, put them into a bowl, and get whatever ‘high’ they got. Remember those stories? I would guess that a lot of kids participating in those parties, especially if they did that fairly frequently, ended up as addicts. But those of us who rely on these meds for a semi-functional life are the ones who are the problem? Really??
Margaret.
10-level Spinal Fusion. T-7 – S-1

Anon1

Thank you to all of those involved in drafting these “Best policy Practices” For the Very first time today October 3rd 2018 I have Hope again something I havent had in well over 2 Years..since the egregious detrimental CDC Guidelines were published in 2016. I have “Hope” again that Chronic pain patients will be able to have access back to the opioid medications that make life tolerable for many of us. I have hope that “tapering” of effective opioid doses will finally stop. I have hope that Chronic pain will be recognized & well managed again. I have hope that the Suicides due 2 pain will stop. I have hope that insurance companies & pharmacies will stop the opioid dose mandates that have caused forced tapering of stable opioid doses nationwide. I have hope that we will be able to live our lives again without fear that we will be next to be cutoff from opioid medication. I have hope that this “One size fits all” of chronic pain patients will Stop finally. I still however have Fear, fear that even if/once these best practices are published that Many, many Doctors will still be to afraid to rx opioids to anyone. I have fear that even though Doctors may “Recognize” the best practices that they will yet still adhere to the CDC Guidelines out of Fear of prosecution/arrest/raid by the DEA. Yes, these best practices are a HUGE step in the right direction…However, if provisions are not put into place to “Protect” Doctors from DEA then I very much fear…this current nationwide opioid phobia will continue out of pure fear from DEA. Thank you again to all that helped draft these best practices…it is truly the right step down a very long road. Thank you.

Cheryl

It’s extremely frightening that cronic pain patients have to consider getting their medication on the street and are over dosing because they have no alternative when their long time doctors are cutting them off for cronic diagnosed pain issues or worse committing suicide because no one will help them and most doctors consider everyone” drug seeking” . People are dying out there from mostly her ion and fentanyl over doses on the street that would never have happened in the past with legitimate pain patients. . We need more people to speak out and remind the government that people need help…. not blanket legislation. .

Michelle

Too many people are hooked on medications and its about time that other alternatives take place instead. More people will turn to Medical Marijuana and CBD. People are misunderstood about Medical Marijuana its not a drug its classfied as an herbal plant and CBD is used for pain, sleep, and other health issues.

Kathleen Kaiser

This is probably the best news I’ve heard all day. I’m going to let everyone that I know with chronic pain know to watch for this so they can comment when the time is upon us.

Quit tourtureing chronic pain patients we had enough of this insanity!!we didn’t chose to have these intolerable horrible chronic medical conditions period! We are in hell 24/7 without all these govermeant and other entities trying to kill us by denying our only hope and relief! Our pain medicine our gift from our creater to give us relief and hope from this horrible pain and suffering! Please just stop percuting us for our medical disability!!!!in Christ we trust amen!

Cheryl

I really dislike when a doctor or someone on the task force says a family member or friend was an addict that started with opioids.

They are NOT going to have an unbiased opinion. The minute they say that, we all know which way their voice and vote will sway. Just because you knew of or know an addict does not mean we all are addicts.

I think that person should recuse themselves from the panel. It makes the scales of justice and unbiased thinking go too far to one side.

Our continued way of life depends on these agents of the government and doctors to make a humane and sympathetic voice for our cause, not against it.

If we have been in pain mgmt with no ill effects for years what will happen when required to wean us off? Let me tell you…
Job loss through sick days as we will be unable to work, disability, Medicaid, foodstamps and Section 8 housing will become the norm. Alcoholism as well as street drugs will be our new way of life instead of being good, tax paying citizens. Suicide will become rampant, divorce, break up of the family unit as the chronic illness will take its toll.Homelessness will follow suit. Is this really what they want instead of ppl that contribute to society? We will become the takers.

I worked my whole life till I went on disability at the age of 53. My whole world spiraled financially. I know what will happen to chronic pain patients. Instead of being a contributing citizen they will also spiral downwards.

I ask, nee beg, do not add to the pain and suffering of those that suffer now. Think of the handicapped ppl also on opioids
They too will be affected., at what cost to society.

Remember folks elections are our way of getting rid of those who do NOT listen to the ppl that elected them.

This is not just about medication. This is about quality of life. It’s like saying all immigrants are illegal, all teenagers are bad, all politicians are crooked. Not all opioid users are drug addicts.

Praying for all.

Cheryl

I have reached the end of my road. I am without hope. There is no where to turn. I trusted my Drs 20 years ago and they have now ruined my life. I am so scared that my will to live will be overcome by an attack of pain that is so unmanageable that pain will win the battle. Why is our government killing us? Why are my Drs killing me? Why??????????? Pray for all of us in this untenable situation.

Ellen

I don’t as a rule advocate lawsuits but Dragonfly you should find a good malpractice lawyer one who takes only if a win ER doctors should have knowledge or if not looked up
Your illness before they walked in your room to have been tackled for raising your arm if you were a back teen and security was a white cop they would be charged with a hate crime
This is a hate crime and for that doctor to start a support then say his brothers addiction started with opiates we know nothing else about his brother and were they prescribed to his brother a party favor or illegal left that out
CDC just announced grants reasearch projects listed and not one mentioned chronic pain
And we have to go back to pain consults but let PCP prescribe because there are not enough pain mds esp if you just need medications; I lost my beloved midlevel provider have another but new pain and fit not sure maybe steeper learner curve; we need be listened to for few minutes instead filling out mounds paperwork nobody reads
I will try call Human Rights but why someone has not picked this up A hate crime leading to torture and death pain patients

William Dorn

How can we get this speeded up. Congress will drag their feet and take forever. We need this now before more people die. Also buy the time they do something it will be so watered down it wont help.

This may sound real promising to people, changing the guidelines to “authorizing “soft” and “hard” edits of prescription plans at 50 and 200 Morphine Milligram Equivalent Daily Dose levels”. If I’m reading this correctly it sounds like the previous guidelines will be handled on an individual basis and people who’s doses were tapered down or abruptly reduced (in my case), will be reinstated to prior morphine equivalent amounts based on their condition(s) and past morphine equivalents. There isn’t one doctor in the U.S. that’s going to increase their patients doses to their previous amounts. Every doctor is petrified they’re going to lose their license(s). My new amount of opiates allows me to get out of bed in the morning but little else. My life went from being very social, doing yard work, cleaning the house, cooking dinner, picking my grandson up from school and watching him, doing my art work, driving, going on vacations and much more. My point is, doctors are just NOT going to chance it. Maybe they should release guidelines that MANDATE doctors reinstate people’s previous opiate amounts and then start reducing doses based on each INDIVIDUAL’S NEEDS, conditions, past records for urine tests, running out of meds early, selling their meds, etc.They need to start at the beginning and reduce (or not) patients meds. Some people may be handling the taper down really well and some, like me, may not. The people coming up with the guidelines NEVER considered that there are actual people on the other end of their new rules, lives are being horribly ruined. Would you risk your license, your practice, YOUR LIFE? It will just never happen!!! Believe me, I desperately want my old life back the way it was pre-guidelines before my meds were cut so quick and so drastically. It’s the typical government knee jerk reaction and they’re NOT known for walking things back. It’s a travesty. Let’s look at the REAL stats for a change. God bless you all.

Steven

I do not get it . Please claify Ed. You say cdc2016 is not law but from experience we all know it has been. Think a nice man Forrest Tennet. I met the man and he means for the best for each high use paient.He nearly was shut down.In conclusion most high use paitents have already been exterminated and the rest hanging by a thread. Some people cannot make it on 200 much less 100 or 50mme.

Dying without care

If you have relied on narcodics for many years … Not needing more but continued care… it is suicide to think I should do a taper of 50% in 2 months! This is without knowing what happens next month! It is not narcodics that will kill me, but DOCTORS who are afraid of the DEA .. CDC and have allowed my care to be dismissed!
DISMISSED!

Chris

Hello fellow Pain sufferers!

I am wanting to find out information to be able to get info on the extensive patient statements for the Task force hearing.

I also have wanted to let people know that I have discussed with the Alex Jones news show Infowars.com and I will be getting some national air time and Because I do not have a central source to send people to join together nationally and locally by state – so the millions of us chronic pain patients that are suffering under this agenda that has been pushed down from the CDC through the HHS and so many people need to be able to join together and be involved in these hearings.

I am very concerned and want to help in informing this inhumane attempt to keep people from having access to pain medications. When they like myself have done all the other options and they didn’t work. I have been told by many Drs that I would be on pain meds for the rest of my life- and now I’m being forced tapered – I am a legacy patient- for a decade I was prescribed 50x daily what I currently take. So they told me to just taper down to an acceptable level medically and we can keep you there.

I’m a full time single disabled Father and this entire issue has been a constant worry. For years.

I look forward to hearing from Ed the author of these articles to have a conversation! Please contact me.

Thank you- everyone we need to not be silenced we need to be heard. The science backs us up!

Victim left suffering...

‘Billy,” the answer to your question is noted in paragraph 1. After the report is made available, a 90 day period for public comment will be offered. All details/ instructions pertinent to the commenting process will be provided by HHS once the comment period begins.

cindy

For over a month, I’ve been trying to find out who and how to contact about this issue, besides my own elected officials. I called HHS and never got a call back. This column helps a lot and I look forward to info about the issued report and how readers can comment during the public comment period.
I’ve asked on this blog for the NPR to publish this info, but never saw anything.
Another poster has asked about this today.
Please keep us informed as to who and how and when we can send our comments about the dire need to keep our meds.

Jan Poole

I want to try to help Alessio. Can you ask your Doctor for Fentanyl? It is 100 times more powerful than morphine. I have Complex Regional Pain Syndrome which is the highest rated pain on the McGill Pain Scale. I was started on 100 mcg patches but you probably wouldn’t need that much. He can start you on 25 or 50.
Also, I know I’m repetitive in saying this (but so many CPP’S don’t know this), if you ask your Doctor for a PALLIATIVE CARE DIAGNOSIS (which is not just for cancer, it’s for a serious condition that will last a lifetime)—- if your doctor will give you this Diagnosis, you will avoid the 90MME dose that’s going into effect in 2019.

Google Dr. Thomas Kline, he explains all of this and you can print it out and take it to your doctor. I hope this helps you and others. My doctor did it for me.

Heather

My stomach is still doing somersaults because I had no idea that the GOVERNMENT was ever literally going to hold my life in its hands. The hysteria is still raging on. The DEA is still a threat to providers and a lot of damage has been done.

Recommendations… What we need is imperatives. And a recognition that people have committed suicide as a result of the government’s over-stepping into physician offices. We need protections and recognition of International Human Rights Law.

We also need it to extend beyond opioids, to other medical treatments that are beneficial yet can be abused – like stimulant drugs for people who have sleep disorders or ADHD. Or nerve pain agents like gabapentin. We need the federal government to be in step with states when it comes to medical marijuana use.

I pray this truly is a step forward. If the recommendations are disregarded, then we haven’t gotten anywhere. Is there a plan for how we can actually push for implementation and acknowledgement of any beneficial recommendations? What if they’re watered down? Then what?

Can we look forward so that we’re not caught off-guard? How do we help ourselves and protect ourselves? The fact that it went this far is telling enough of what we’re up against.

Unjustified and risky and yet we’ve ALL been through this…..
Still having faith that God will prevail. That all of our lost voices, even those that have taken their own lives due to the unfortunate ignorance of others will be heard once and for all.

When,where and how do I respond to this public comment period? Also,any suggestions as to it’s format,length,etc. ?

Alex

Thank all of you for your help. I broke 7 vertebrae in my spine and it took 4 years to stabilize incompacitating pain. I use a fentanyl patch above the new Medicare allowance, that is ridiculous. PLEASE help us with this and other knee jerk reactions.

Dragonfly

While all this email, letters, picketing……are going on, i am sitting at home in pain suffering. I had my meds taken June 2017 because of the opioid crisis. The last trip I made to ER was this month. I got called a liar by the doc. I started to cry and asked to leave. He called security on me. When I heard them behind me as I was reaching for the door, i raised my hands and asked them not to touch me cause i have ehlers danlos syndrome and they could dislocate me. When i raised my hands my shoulder came in contact with one of the security guards and he took that as a act of assault. I had 300 lbs of man on my 139 lb body. Put me to the floor, handcuffed me and snatched me up by my armpits. This government involvement has caused much stress on the medical field. They are scared to treat there patients. Now I’m charged with assault, tresspassing and disturbing the peace and Im sitting at home bruised, soar, ribs popped out of place and no help from anyone for the pain. When is this madness gonna stop.

Alessio Ventura

These people are clueless. I just had major spine surgery due to an infected fusion cage that had been put in at L5. My pain is unbelievable, and I am questioning the value of my own life. Because of the infection, they are flooding me with Rifampin and Ampicillan. The Rifampin effectively neutralizes many opiates, such as fentanyl and oxycodone, so the surgeon prescribed 8mg extended release dilauded along with short acting dilauded 4 (mg). The pain remains uncontrolled and I am seriously allergic to NSAIDs. Because of the infection, I cannot stop taking the Rifampin.

Well, nobody has the extended release hydromorphone (dilaudid) because suppliers have cut back due to the “opioid crisis”, where existing restrictions, especially those laid down on July 1, 2018, have made the medicine unprofitable. The alternatives while taking rifampin are few and far between and the surgeon told me that pharmacies are unlikely to have stronger doses of alternatives.

These beureucrats and politicians are imposing HELL on innocent people. In the mean time, street drugs are increasing in supply and addiction and death from the black market are on the rise.

This is insane folks, truly insane.