Patient Advocate Tells US Senate Committee “Pain Conversation is Long Overdue”

Patient Advocate Tells US Senate Committee “Pain Conversation is Long Overdue”

Cindy Steinberg put a human face on the chronic pain issue for U.S. Senators Tuesday in a meeting of the Senate Committee on Health Education, Labor and Pensions.

Steinberg, the only patient to testify, described her own two-decade battle with chronic pain as “being a prisoner in your own body and being tortured.”

Steinberg, who is the national director of policy and advocacy for the U.S. Pain Foundation pointed that the opioid crisis has “underscored our failure to provide adequate, safe, accessible treatment options for pain relief.”

She also said that “we can and must restore balance to opioid prescribing,” while emphasizing that chronic pain and opioid use disorder are distinct and separate diseases. Many patients use opioids legitimately and safely.

The financial and societal burden of chronic pain is enormous: it costs the United States an estimated $635 billion annually in terms of lost productivity and health care costs. It is the leading cause of long-term disability.

“Steinberg directly challenged the lack of resident expertise on pain management at CDC, suggesting that Congress direct the much better equipped NIH to rewrite the guidelines based on recommendations of the HHS Task Force. This is a recommendation I support,” Richard “Red” Lawhern, Director of Research for the Alliance for the Treatment of Intractable Pain wrote.

He added the hearings today were “marginally positive for people in pain”.

Committee Chair Senator Lamar Alexander of Tennessee said the “massive effort in reducing the supply of opioids has had the unintended consequence of hurting people who need them.”

Ranking Democratic Senator Patty Murray of Washington said that opioids have been overprescribed and it’s critical that they are marketed, prescribed and used responsibly.

Steinberg stressed that a multimodal, multidisciplinary approach to treatment—that includes both pharmacological and nonpharmacological options—is essential to effective, long- term pain relief. Inadequate insurance coverage, high out-of-pocket costs, and limited availability are significant barriers to effective care.

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Authored by: Ed Coghlan

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Dick fort

Sorry for ranting it’s just I know so much of what is actually going on, and what actually going on in the streets and the spikes in deaths since they have taken away access to the pills from legit cronic and even cancer patients it’s crazy, and I’m all for shots and epidurals but those only go so far, and all in for chiros and acupuncture, but there comes a point where that only works so much and start to hurt and become.more of a pain expecially if u aren’t weathly, there isn’t many options out there for pooer people and that’s the dead honestly truth. It’s really sad they won’t say because they want it portrayed theve fixed the problem well I can tell u for sure 100% that they have made the issue wayyyy worse and wayyyy more deadly the deaths have tripled if not more and they say the opiode epidemic is worse then ever ya well that cause u have people using dirty heroine mixed and laced with cheap deadly fentyel. It has zero to do with pills there is more dope on the street now then I have ever seen before in my life, while there going after these pills and pharma company and mds the dope and fent is pooring in and idk why no one is doing anything I would love to testify in front of Congress giving the opportunity to,it’ll never happen,but this is what’s happening they should leave the mds to there jobs let them do there thing keep and eye on things work a program where ur aloud to check in and look over some files and sit down with the mds and let them explain why there doing this with this dosage let it be an open book and if a patient gets caught selling his shit smackem with the books, make it super simple, drug test and contracts regular pmp checks and loosen up on this guideline [edit] every person and case like I said before is different and deserves special care u don’t just write the same thing for every person that would be lootacris how they even came up with this brain fart idea is beyond me.. that’s it and my.rant

Dick fort

And what is even sadder and the DEA and FDA will never admitt to it but by creating these guidelines that have pushed doctors to write at the 120 equivalent or usually below it has done nothing but push normal good law abiding citzens that do things for the cumminty to seek dangert drugs other where or take extremely sketchy risk buying meds to make up for the cut there mds have imposed on them meanwhile what happens is they think there buying there meds the fo home and take it and it’s either totally fake and a waste of money of it’s an extremely potent illict fenteyl pill that whinds up killing them in front of family and friends or just whinds up really messing them up, then comes time.for there normal doc appointment and there swab or urine test comes up positive and they get kicked out meanwhile then there really screwed cause they have no medication for the pain and is literally nearly impossible to find another doctor that will take you, so at that point what are ur choose I’ll tell you, buy illict garbage off the street that u have no idea what is, meanwhile this isn’t what u wanna be doing but what are ur chooses u deff don’t wanna die or kill urself , and then eventually comes ur second choose and unfortunately to many people lately have been making this choose and that recording ur sucide and death because u couldn’t live with the pain anymore and no one would help you , the DEA and FDA has villafied some of the really good doctors that we’re actually willing to help you , and help you get threw life comfortably, now I’m not gunna villify the DEA and FDA because they have done some good work and good jobs with some honestly bad doctors doing really wrong things and those are the ones that they should be concerned with but when they just start arresting multiple mds and taking there lisences away that they worked all there life for it’s not right meanwhile these dea offices lack 85 percentage of the knowledge of medical facts, they just see arrests and #

Dick fort

The guidelines came out with the 120 equivalent and all the mds seen that and it was like the shot heard around the world. And I truthfully know what happend a fax or message went out from the DEA office for all doctors if they were gunna carry on writing meds that they would either adhere to that or well show up on ur door cancer patients will be excluded from the 120 but cronic patients will meet these guidelines, and its [edit] cause till one of these dea officers gets shot of blows there back or hip or shoulder out or knees and find out what real pain is constant pain the pain that is 247 till then they won’t realize what it’s like and I don’t wish it on anyone of them honestly I dont, every cronic pain paitent case is different and needs to be handled one by one not bunched up and all fall under a persumption that we are all the same and all need the exact same amount of meds meanwhile our injuries are all different our pain levels are different for each person, we are different sizes and weights, and the most importantly we all metabolize the medications differently and they effect us differently… You can’t take someone that was one let’s say for example 120 tablets of oxycodone and the guidelines come out and ur MD says sorry u only get 60 now now uv been on them for seven years are use to that dose and is cut in half. At that rate two things will happen one u will go thru moderate withdraw ull become sick ur stomach will hurt and ull become extremely irritable which ur partner has to deal with and watch u suffer turning and rolling blanket on and off and this is with meds but cause u we’re cut with such a large dose it’s like being cut and even if u we’re to be cut slowly to this dosage the meds that once worked at the first dosage u found stability at and being there for such a long time then being cut down to half would never work no matter how much time u gave urself.not only would it be hell but it would also be extremely painful everynight

Dick fort

It’s about time real people have this talk and hopefully we’ll be treated like human being and not junkies and seen as normal people cause we can be completely normal good human beings that are extremely intelligent , artistic and to show and see were just like you , we just happen to suffer from certain painful pain conditions and everyone’s is different. Now that you have invovled the DEA and FDA they have literally terrified any and every md for writing a simple 5 mg Percocet for having four wisdom teeth pulled of even one tooth pulled getting ten pills for something like that should be a big deal but apparently it is and ull become a junkie from it and the doctor will be harressed and arressted… You guys put the pmp into effect and gave it no time to do its job and work, yes there were a few bad apples meaning doctors but there are many things that go into a chronic pain paitent medication. One would be the problem or injury, things he has tried and done, how big is the patient, is he male or female, weight,age,current shape health and condition, other medicines, how long has he be on the pain medication when was the last time of an increase or a decrease is his pain worse in the winter or summer how active is he I mean all these things need to be taken into account, just cause we think a dosage is high doesn’t mean it is for him expecially when it’s been five six seven plus years to someone that doesn’t take it yea it would knock another person on his butt, but not to someone that’s been taking it for years, then we have people come in that say they know soooo much and clearly.they didn’t care and didn’t honestly know Jack shit cause they came out with these guidelines and yea maybe there okay for someone that is a new cronic pain paitent and depending on the injuries and the case maybe it’s a good idea to try and stay near those guidelines but not for people that have been on for five to ten plus years that are already over the 120 equivalent,mdseenthatncute

Brenda Bennett

God bless u & thank u so much

Cindy

Thanks you Cindy!!!

Bruce

Thank you Cindy, and thank you, Red. I appreciate any effort you put forth for our community. I went to physical therapy for the first time in a long time, got in the pool, and went through a bunch of exercises that involved my neuropathy-wrecked feet. I did damage to them that has lasted a few weeks already, but the best part was when the PT assistants informed me that they would try to re-train my brain to convert pain signals into something tolerable. After listening to that crap for five minutes, I yelled at them to leave the pool area. The physical therapist came back in and just told me to do whatever it is I normally do in a pool. The moral is – if you’re not in pain, you don’t know what the hell you’re talking about. But alas, they keep talking about it. They cut my pain medication back, and then expect me to exercise more somehow. I hate these people. And our government of pure evil. Thanks Patty Murray you dummy-

Mosie

When will the “opioid crisis” proponents recognize the difference between a drug addict & a pain patient who takes a prescribed opioid as it was written, follows all requirements of the prescribing physician, and keeps in communication with the physician & staff. This issue is a red herring and I’m grateful to all those working on behalf of those of us in continuing, crippling pain.

Maureen M.

Bravo and Thank you Cindy! As well as all who are out there advocating hard to help us!

Barbara

I’m in so much pain every moment and don’t know how much more I can take and it’s not because I that I’m addicted

dave

I do not know if their has ever been a time when our Nation took pain seriously, but there is a long history of addressing substance abuse since colonial times. Frankly, I do not fully understand how Government and their friends in society can justify their great interest in substance misuse and their longstanding neglect toward the suffering from pain.
It is clear that Congress still doesn’t get it and still would rather say pain is important and hope that will silence incessant chatter or the vague noise of people in pain. But clearly they have made little funding or other resources available to lessen suffering from pain.
Though there are critical studies for disability there is no established critical pain studies to get to the heart of the failed politics, policies, regulations, practices, beliefs, values, programs, morals, etc of pain care. It is time to develop such studies to hopefully transform and empower people in pain – in the name of humanity and civility.
How we treat our must vulnerable reflects on our civility. We know prisoners are treated atrociously and now government wishes to add insult and injury to people in pain and develop false narratives about addiction and “balanced” approaches to care. Oh please- government should have the integrity to come out and say honestly we dont like people in pain- theyre problems and deserve our neglect and mistreatment. But we know they lack integrity, a hear to care and frankly some reason when it comes to addressing the needs of people in pain.
Pain care is a political problem and moral problem- and without a genuine change of heart and morals in government, in the insurance industry, in doctors and other providers- i dont think there will be real progress in pain care anytime soon.
Lets not waste more time and let us get to the heart of the failure in pain care and call for transformation in our autocratic and careless institutions-the sooner the better.

F.S.T.

As I’m from Tennessee. I have been in contact with Senator Alexander’s office, and other Representatives, more than once about the plight of us chronic pain patients. Along with others who have no doubt contacted him, maybe he will move in some smart way to help us.

Robert

Our government when properly motivated (greed, corruption and direct theft) to break what isn’t broken, create a crisis that doesn’t exist, all to tighten their grip over the American people.

Our country that was conceived in “Freedom” has now fallen victim to the single most addictive substance known to modern science…ABSOLUTE POWER!

This horrific drug that will corrupt 100% of those who fall prey to it’s addictive qualities. In my opinion we do in fact have an epidemic in this country that even surpasses the 1/2 Million people cigarettes takes from us each year, and interestingly enough it’s disease carriers are restricted to those in Congress. This inexcusable and very simply curable epidemic can be irradiated forever if we would only have the courage to take our desperately needed medication that will remove the infestation from our Capital……….Excise the cancerous bums in Washington by giving them their pink slip. Their crisis……Our Cure!

I am a responsible adult that does not require Big Brother to micro manage every single aspect of my life (what’s left of it). They should concentrate on preventing another 2008/2009 economic bailout and leave me and my body to me.

I applaud the efforts made by Cindy Steinberg! Although I have become jaded over the years by the inconceivable cloud of B.S. that the general public has consumed as truth, I still believe when we are going up against pure evil, regardless of the consequence, we must stand up and be counted on the side of “RIGHT & TRUTH”.

I was cut off of opioid analgesics almost 3 months ago. Yes 60mgs of Oxycodone to 0mgs in one second and my walking papers.
Out of my ridiculously already too low to handle my pain prescription of 348 pills,
I still have 187 left. Being a responsible user of opioid pain medication and not having a replacement doctor available, I did the responsible thing…I dropped them from 12 pills to 2 immediately.

If only I were an addict 🙁

Laurie

Please write to ALL your senators and Reps.
It’s past time they hear something that comes from actual human beings in unrelieved pain or under-prescribed pain. Even the World Health Organization says this opiate policy is “cruel and unusual”.

Nobody who hasn’t experienced living in 24/7 pain can possibly understand the toll it takes nor the stress of living now under, essentially, a war on the sick of America…AND the doctors!

It is far from “freedom” to put a person through all the hoops they want us to jump through now. I simply cannot be at doctor’s office all the time, or running here and there to justify my need for the drugs that have been under-prescribed to me for nearly half my life.
It’s past time for these costly, ginned up drug wars to END.
Good luck to us all

Signe Topai

Thank you! God Bless you! I know it was very hard dealing with your pain, preparing what you were going to say and handling the stress of such a commentment! You are our Wonder Women!

susan

Sorry for the misspelling. Thank-you

susan

I thank C. Steinberg for standing up for responsible people who need pain meds. We definitely not urinals looking to sell our meds. (I Hope) I answered the US pain question it took me an hour. I hope it was received. I have multiple sclerosis and other pain issues so unfortunately I need them to have some sort of life. I am also on SSDI and unable to continue my carrear. Miss it alot. Now I am finding other ways to be creative and useful for my mental health. I try! Thanks, Susan Bowie

Denise

It is great to see movement toward improvement of the pain management crisis. It is unfortunate that our collective voice is not louder, but this point should be illustrative in itself. While the big data numbers are large, the actual patient suffers in private quarters, crying out weakly, unable to muster the strength to manage our own lives, much less travel, meet, gather in the great roar that would be heard and perhaps heeded.

Chrys

Gail Honadle
Correction: Chronic pain is ongoing pain for months or years. ACUTE pain is pain that is horrible but will subside in a period of time: for example pain after surgery is acute.
Someone who suffers from the same pain for a very long period with no end in sight has CHRONIC pain.

I second the motion to put the NIH in charge of research. NIH is a multi-disciplinary group of laboratories, of which CDC is the Infectious Disease unit. It was irresponsible of CDC not to consult with the experts at other units of NIH when it allowed Dr Kolodny to write the CDC Opioid Prescribing Guidelines. One consequence of that misfeasance of duty, is that the Guidelines erroneously state there to be a lack of evidence that opioids remain effective for long term pain control. The pioneering research efforts on the body’s Opioid and Cannabinoid Receptor System, that was done at NIDA, clearly documents that these substances play a continuing role in the lives of normal healthy people.

I think hunk is reasonable rule for Congress to apply, is to require the CDC and all the other entities that are part of NIH, to consult one another before bringing in an outside group like Kolodny’s PROP and allowing it to mislead the agency.

Brett H

While the ball is rolling we must not give up the fight. Some are against treating pain at all based on reasons that are illogical and inhumane. If they want less opioids they need to treat Addiction and stop coddling those people with revolving doors. Dry then out and keep them close, like watching children.
Certain diseases need to genetically monitored and thoughts towards family planning needs to take place. Because bringing life in to face living hell should be avoided even though we are all lucky to be alive.
Physicians need freedom and education to know when to prescribe and when to hold back or tell patients are telling them a story.
Once medicated the 10 versions of the pain chart don’t really apply at all times. But the pain is still there in the background waiting for us. If this doesnt apply to the patient they shouldn’t be on long term opiates.
America is one of the most over worked countries all scrambling for money. Perhaps we should learn by other countries and take more time to relax and support employees while they live their lives instead of always supporting shareholders and ceo pay. Happy and healthy employees make for better workers. It has been a long time since things like this have happened. I would be curious to see the number of people in high stress positions who have to be on Pain management vs those with higher pay and better benefits.
The human body is a complex thing and not any one way of thought will ever be able to help someone in their entirety when they are in pain without more investment in complex computational sciences for life. They whine about the costs but before the stink they made there was virtually no investment or investigation into pain other than the go ahead to treat it.
Like I have said before I would like to see the money trail of Congress, the drug companies, the Rehab centers, the CDC, FDA, insurances, and those involved in the 9O MME charts. It has been ugly.

TOO LITTLE TOO LATE! EVERYONE IS DEAD OR DYING!

Gail Honadle

First off the correct term for untreatable by other means is INTRACTABLE PAIN and is a Medical Disease. Chronic is a temporary pain that can be treated by other means and will subside in a few weeks to months. It is Medical Malpractice not to treat an Intractable Pain Patient. Nor is it fair, just or right to deny RESPONSIBLE patients access to the necessary medications that lets them function, and work. Instead of being in a Wheelchair or bedridden unable to even get themselves to the bathroom. INTRACTABLE PAIN CAN KILL. It is not Just, Fair or Ethical to deny a Complex Patient with Intractable Pain medications that work. That Complex patient may need a Seizure, Muscle, Nerve med if they have Fibromyalgia, Gastropresis, but Osteoarthritis drugs destroy Gastro tracts. Thus the only treatment left is a low dose Opioid. It is Unethical to force Steroids, Cortisones, on Degenerative Disc or Osteoporosis patients before they can have Physio for an injury, these drugs are Bone Destruction drugs. Nor should they be given to Glaucoma patients, yet doctors don’t seem to know that small fact. Because they don’t read a Patient’s Medical History. Why is Medicare FORCING FULL KNEE REPLACEMENT on a patient who only needs a PARTIAL Knee? It does more damage, requires professional Rehab, and a stay in a nursing facility to learn to walk with the knee. That Partial Knee doesn’t require those things and is as GOOD as a Full Knee. My husband has 2 Partials. 1 is 8 yrs old, the other 2 yrs old. He was climbing stairs cautiously within 2 days and driving in 3. Physio done at home.

Sandy M.

Ed, I’m watching the last part of CSpan 3 right now of Cindy Steinberg’s presence yesterday testifying to our senators along with the physicians and Mr: Coop. I see Mr. Coop advocating for medical marijuana. Thank you Ms Steinberg for your participation in representing those of us that are unable to get out of bed. I was unaware she was going to be there, but I certainly thank her so much! I’m sure it was not easy for her either. I would love to tell my story, but can hardly get out to go to the Dr.
Sandy MillerS

Thank you so very much Ms. Steinberg and Dr. Lawhern. You’ve definitely gotten the word out on behalf of all of us. Now we can only pray that they have listened and shall act upon your endearing words of truth and wisdom! I’m shocked but pleasantly surprised that Senator Alexander replied in the way he did. I live in the state of Tennessee and have written to Phil Roe imploring him to help us, only to receive a response that he was going full force with the opioid crisis. I know this is far from over but I feel this is a start. I urge everyone to please write to Senator Alexander and tell him your own personal story. In the meantime may God bless you all and send us the miracle we so desperately need.

Gary Raymond

Thank you, Cindy Steinberg. Many people are afraid to come forward because of persecution. This is definitely a civil war of government against its citizens. For people who need opioids, nobody can be trusted. There are so many in power who are ignorant of chronic pain and its effective management. They did not want immigrants to be stereotyped, but this is exactly how everyone who uses opioids are being treated. Legal and illegal users are both considered hopeless criminal addicts – unless they participate in rehabilitation. Rehabilitation cannot stop pain.

Ellen Lenox Smith

Thank you, Cindy, for representing so many pain patients across the country – you were so articulate and passionate. It was an honor to listen to you and watch the impact your words had on the committee.