Patient Advocate to U.S. Senate Panel About Chronic Pain

Patient Advocate to U.S. Senate Panel About Chronic Pain

Cindy Steinberg, National Director of Policy and Advocacy for U.S. Pain Foundation, has been selected as one of four expert witnesses to speak at a hearing of the U.S. Senate Committee on Health, Education, Labor, and Pensions this week.

The hearing, “Managing Pain During the Opioid Crisis,” will take place in Washington, D.C., Tuesday, February 12, at 10 am EST.

For more information on the hearing, click here.

“Cindy will be allotted five minutes to speak and will answer questions from committee members. One of her key messages: While we must ensure that Congress’ large investments to ameliorate harms from opioid use disorder are accomplishing that important goal, we also must correct unintentional harms suffered by Americans living with pain and ensure that policy reform going forward considers pain patients’ needs as well,” said Nicole Hemmmenway, interim CEO of the US Pain Foundation.

Steinberg told us that the following are just some of what she plans to tell the panel.

As you plan future legislative action, she hopes Congress will consider these key points:

  • Chronic pain affects 50 million Americans, including 20 million Americans who live with high-impact pain.
  • 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.
  • Chronic pain is a disease of the nervous system and brain that can and does last a lifetime. It is distinct from acute pain, which is time-limited.
  • There is no one-size-fits-all approach to treatment for pain. Individualized care is essential. Patients must work closely with their healthcare providers to weigh the benefits and risks of each option.
  • Chronic pain and opioid use disorder are distinct and separate diseases. Many patients use opioids legitimately and safely.

“We must restore access to care and medically necessary treatment for tens of thousands of pain patients who have been dropped from care by fearful and frustrated providers or who have been forcibly tapered off stable doses of opioids that have helped them for years and left to suffer with relentless pain. This is inhumane and morally reprehensible,” she said.

Steinberg, who also serves on the HHS Task Force for Best Practices in Pain Management, will be joined in testimony by three other professionals:

Halena Gazelka, M.D. is an Assistant Professor of Anesthesiology and Perioperative Medicine, Director, Mayo Clinic Inpatient Pain Service and is Chair, Mayo Clinic Opioid Stewardship Program in Rochester, Minnesota.

Andrew Coop, Ph.D. is Professor and Associate Dean for Academic Affairs for the University of Maryland School of Pharmacy in Baltimore, Maryland.

Anuradha Rao-Patel, M.D. is the Lead Medical Director for Blue Cross and Blue Shield of North Carolina in Durham, North Carolina.

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Authored by: Ed Coghlan

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Lindsey

I just watched the hearing.
Reality was almost non-existent.

The worst hearing ever, for a subject matter that touches tens of millions of human beings. It was short, poorly attended, sad turnout of Congress, and the speakers were not what was needed.

IMO

God bless you Cindy! What a superb job you did! I wish there would be more hearings, and next time, 100 pain patients need to be invited. This evil, sick situation we are all in will take years to fix, and meanwhile people die, take their lives, withdraw from life…all because of ignorance and greed. Such is the nature of this life on earth ….don’t get me started 😊😎😩…just wanted to say thank you Cindy. 💕💕

Mavis Johnson

I am watching the hearing right now. It is hard to believe some serious issues have been brought up. They should have done something like this 20 years ago. Of course none of the physicians or speakers related how ocyconin was different from other prescribed opaites
Cindy Steinbergs presentation was outstanding, she really articulated the problems people with chronic pain face. It is remarkbale that after all of these years of denial, they acually allowed a person to speak for the people with chronic pain.

If they had done this 20 years ago, they would have prevented a lot of deaths and ruined lives. Imagine helping people with pain actually keep their jobs, their homes, and their relationships. It is too late for people like me, and the ones who are dead, or so damged they will never function again. We have had 2 decades of lies and denial, perpetate dby the pharma, medical and healthcare industries. A lot of us no longer engage publicly after being labeled addcicts or misdiangosed with a mental illness, they did not have.

I wonder how long this inforamtion will take to trickle down, or if it will be dissemianted. Our media prefers to portray all pain patients as addicts. They used ths so called opiate epidemic to market a lot of lies and psuedo scince, it wil take years to reel that back, and in the case of the people making money, perhaps never.

R. Michael Maddox

Well, I just watched the Hearing in the Senate Committee. I really did not hear anyone standing up for the Pain Patient that needs Opioids to endure our pain. They all mentioned the fact that patients should have access to Opioids, but all talked MORE about the alternative treatments. I didn’t hear anyone say,” Leave doctors alone to treat their patients as they see fit”. All I heard was the same old BS Opioid Crisis. No one separating the illicit street drugs from Prescription pain meds. in their numbers. Just a bunch of BULL about all those thousands of good people that OD’d on opioids. What a crock!

Ellen Lenox Smith

Outstanding job representing the pain community, Cindy – We watched the entire hearing and were so impressed with you and all of the participants.

Take time to hear her words – she was amazing!
https://www.help.senate.gov/hearings/managing-pain-during-the-opioid-crisis

Whatever we do we cannot even slow the slaughter. Infact my doctor has sped up.The killing goes on, one by one reach the end. For Christians this would be the red horse with death on his back from revelation. Next, a third of humanity dies. I am just about bedbound. I guess that is why ot feels so hopless and of course no one will talk to a drug addict.

What a poor excuse for a hearing on pain. Pure propaganda. Even Cindy’s message had no suggestion or solution offered. It’s almost like they were given the agenda on what to say, and they complied. The truth is still available for those who want to learn on http://www.doctorsofcourage.org/videos.

Jody Hoffman

When will everyone realize that this all boils down to someone in government is out to make money from this. They have put millions of dollars aside for rehabilitation for addicts but nothing for people who are in genuine chronic pain and are not buying drugs on the street. Thousands of people were cut off from pain medication & then the amount of people buying street drugs and overdosing skyrocketed, am I the only one that thinks this isn’t a coincidence? I have a terminal lung disease and for years I was managing it with 2 different opiates to treat refractory shortness of breath and the pain along with supplemental oxygen & inhalers. Standard treatments don’t work for asbestos exposure diseases. I was at 55% lung function & weighed 140lbs & was semi active in August 2017. My primary care provider quit suddenly & my new provider automatically cut off one of my opiate medication completely & cut the other by half in September 2017 because my lung disease wasn’t that bad according to the pharmacist that evaluated every patient that my provider treated with opiates. Now my lung function is at 42% my weight is 116 lbs and I have been house bound all year. I finally got to see a pulmonary doctor in a different Medical Center & it’s amazing how fast I was given the correct dosage of medication when my provider read the report and diagnoses. The trouble is that I am not able to gain back my lung function & my prognosis went from 7 years or better to 18 -24 months. All because of a person who has no medical training for pulmonary disease and they were out to reduce the amount of prescriptions for opiates.

Marsha

I watched the Senate hearing this morning. Thank you, thank you Cindy Steinberg for testifying for chronic pain patients. It is becoming more apparent that the people in charge of our quality of life are uninformed and misguided. The testimony of Ms. Steinberg was a great step in the right direction.

She’s allowed five minutes. Shameful. Then again we had a veteran that went above and beyond the Call of Duty more times than he should have. Mr Robert Rose. The man continuously asked for 11 minutes of the 11 years he served his country and government. He was turned down over and over until the right person read a comment of his and finally he was granted his 11 minutes. I wonder how our president would feel if he was given five minutes to say something that could impact the world. God help us all!

John

What we are seeing is a made up crisis by politicians. The very idea that managed health care patients are lumped in with the statistics of street users should bottom line this for everyone. Pain management patients amount to just a couple percent of the problem but have been included with the abusers. There is no crisis in the pain management group. President Obama through voluntary guidelines reduced opiate prescriptions by 19.7%. Now, like everything else he accomplished, President Trump must outdo him.
My pain management clinic closed recently and after 32 years in the program without incident, at 65 years, I had to go through withdrawls unsupported. Criminal in my book to do this to law abiding citizens. A complete lack of understanding, sophistication and empathy. In addition to a spinal cord syrinx that spans five vertibre, I have three collapsed discs and two shattered vertibre, this after two extensive spine surgeries. I just hope the people that put this nut job in office are starting to realize just how inccompetent he is and we can get back to a more responsible Americaa.

Rita A Kimbel

I’ve been deeply affected by this opiate crisis. I am one of the many, my insurance company cut me off of medication I had been taking for about 12 years, and before the cut off I functioned well. I have a cervical cord injury and intractable pain for 16 years. I’ve had neurostim implant for 14 years. I was not force tapered, I was cut off completely and left to suffer. My doctor pleaded my case to the Insurance Co. and they wouldnt budge. My family life is a mess and I have been suffering since. I stopped living my life and now after 1000’s dollars of out of pocket expenses we are depleted. I gave up paying and fighting for proper dosing and now resort to my neurostim and medical marijuana.Its exhausting and also exspensive. I can only hope that some day this is recognized as being the worst time in history for intractable pain patients and we are compensated for the horrific mess caused by one agency, CDC. responsible for my suffering for the last 2 years. The big insurance company was just as faulty in not recognizing the danger of what they did to me because of a recommendation.

John

I have multiple injuries resulting from accidents while racing. Have been taking 600mg morphine per day for 30 years with no problems – it helped me enjoy a good life. I’ve tried TENs, epidural injection, acupuncture, trigger point injections, chiropractic, anti seizure meds, anti depressants and more. Morphine worked for me very well with no side effects. I enjoyed watching my 3 kids grow up, a good job and good relationship with my wife.
Now – I’m starting my second year of a forced taper. I’m now taking 1/3 of the dose that worked for me and I’m miserable. I don’t sleep, I feel sick most of the time from pain, and im exhausted from lack of sleep and the inability to relax.
It’s hard to believe this could happen.
Chronic pain patients are not the problem nor do they contribute to it.

How could a government take away something that gives us a chance to enjoy life? How could the media and the politicians be so blind to think taking opoids away from those with a real need for them….using them legitimately – is a reasonable solution to the problem of illegal drug use by heroin addicts and drug abusers?

dave

It is a tragic farce that Congress continues the escalation of failure in policy and practice by privileging the voices of experts over the will of Americans in pain care. It is clear Congress believes we should obey experts and government and ignore our own conscience, experiences, beliefs, values, etc. What can be their justification for such anti democratic and anti individual practices. Moral and mental blindness is evident in Congresses inept approach to pain care and addiction. They are morally blind to the just demands of individuals to have a voice and be cocreators of policy and practices in pain care. They are mentally blind to people in pains suffering- or else they would have called for legislation directed at making energetic effort to prevent and cure all pain conditions.
It is clear the failure of government and industry in pain care points to a much deeper troubles in society in addition to poor pain care. it is clear that government no longer believes in its people and the industry is not interested in meeting the real needs of people in pain. People in pain are forced to navigate between the Scylla of poor government and the Charybdis of poor industry. It is at once theater of absurd and theater of cruelty.
I am slightly hopeful now that a sleeping giant- people in pain are awaking to the tragic farce of pain care and hope they will realize that government and industry will only offer quick and dirty solutioneering at great cost to people in pain. We need to transform our government and industry and their respective Prussianism and market fundamentalism. We need to successfuly advocate for empowering people in pain with a bill of rights and have government recognize that they derive their just powers from the governed and that pain care should be more about the benefits to citizens then the advantages of profiteers in industry. Failing that, their will be a continuing escalation of failure in pain care in America.

Jan

If she doesn’t tell them to get government (DEA,CDC,etc.) out of Healthcare by removing the DEA’s authority to target and sue physicicians AND their authority to tell drug manufacturers how much they can produce, then NOTHING ELSE MATTERS!

If the government has to do something—- let them make a Pain Patients Bill Of Rights and Compassionate Care Law to make sure we are NOT DENIED ACCESS TO OUR MEDICATIONS AT THE DOSE WE NEED FOR THE LENGTH OF TIME WITH NEED!!!

THERE ARE 100 MILLION CHRONIC PAIN PATIENTS AND 26 MILLION INTRACTABLE PAIN PATIENTS.. THANKS CINDY!

My prayers are with u Cynthia Steinberg. I want to thank you for all that you’re doing . I also pray that the ears & hearts of the senate will be open & change for the better treatment for people in chronic pain. Thank you so much for fighting for all of us. May God bless you and your efforts.

I have been managing severe chronic pain since being hit by 2 texting drivers 7 years ago. I suffer from severe lower spinal blockages, osteoarthritis, nerve damage in both legs, prostate cancer, skin cancer, a hip replacement and 2 knees that need to be replaced. I fought through cancer treatments twice, got my hip replaced and began walking. I even took a part time custodial job. I lost 40 lbs in 6 months so now they want to take away the medications that, under strict management from my family doctor helped me come this far. Seeing what our Governor is doing to chronic pain sufferers, I did not take any pain meds last night. This morning I had to call off work because I couldn’t get out if bed. How is this helping me in any way????? Next I am calling my health insurance co. Because I will need a visiting nurse just to get to bathroom and eat?

Alan thurman

Say this! How dare you single out people in agonizing pain take their medication away, allow them to become fat and hopeless, loose their homes, make family members suffer and much more. The people most affected are on Medicaid. The people who should be writing in are scared to death they will suffer like people they know. Take heron out of your numbers, and u kniw longer have and epidemic. This is beyond ignorance ,it’s malicious. I have more information to share but I’m nit even sure if this goes anywhere, so that’s it for now!

F.S.T.

Physicians, Nurse Practitioners, Physician Assistants; ALL PRESCRIBERS’ HANDS MUST BE UNTIED AT ONCE!!
The governmental overreach into the exam room has caused — let’s call this out for what it is — death to chronic pain patients, either by suicide or stroke or other medical events directly or indirectly caused by uncontrolled intractable and/oror chronic pain.

I’m sick to death of it (unfunny pun not intended) and every chronic pain patient in this country is not going to stand for it. Our Congressional representatives have heard from us over and over, and nothing has happened.

At my pain clinic, I undergo humiliating treatment every time. We have a jailer/inmate relationship and if it weren’t for needing the pathetic pittance of my medicine, I would stand up and tell them where to go. It’s also totally unnecessary to go once a month. Insurance companies should have cried “foul” a long time ago, as my medical claims have more than doubled.

I am SO angry, I’ve SO had it with a system that threw me away long ago. I’m useless to my family, I’m a liability to everyone, and I am sick, sick, so sick of this farce, this manufactured crisis called the “opioid crisis” when there is none!! If there IS a crisis, it’s with the upper echelons of our society throwing us a bone a few times here and there to shut us up.

Time has run out for so many of us, and the clock is ticking for the rest of us. What’s so damn hard about someone up there saying “Ok, game over, stop the insanity” and let us have our appropriate medicine back at the dosages and frequencies OUR PRESCRIBERS and us decided what is APPROPRIATE for US, and WORKS for us?

More government red tape is not going to help. Just reverse the criminal behavior of the witch doctors in the government who tell OUR prescribers what they can do. I will not accept being the villain in this fiasco. I applaud the chronic pain patients who have found relief with and through illegal underground connections.

Researcher

5 min? No mention of suicide rate increasing, why more Americans are in pain than people from other countries, or the WHO, International Board of Drug Trafficking, or ANY other International group supports leaving people in chronic pain.
OR that the prescription rate has plummeted, yet the death toll rises, proving prescription drugs haven’t been the problem in over a decade.
I’m sure it will make a drastic difference.

Lynda Hillebrenner

This fantastic news! I’m sure Cindy will do her best to represent all of us. I like the bullet points she wants to cover. I’ll be interested to know what the other three speakers have to say. I’m praying & hoping someone will actually hear her, and effect a change.

Carolyn G Wooley

I think what the cbc has done is hurting chronic pain patients that take thier pain medication the right way just cause some ppl. Abuse it should not hurt ppl that dont. U don’t know what it feels like to live with pain everyday & not be able do ordinary things like bathing cooking washing ur clothes is hard when u can’t move because of pain

Duane Michaels

I live in pain daily and rarely sleep because of it. It took years after a terrible tractor trailer accident to find doctors to finally help me. It has been a problem that I’ve lived with for decades now.
My body is worn out from hard labor, cancer, a terrible accident and some undiagnosed movement disorder that is excruciatingly painful and debilitating !
As of now I’m stable and just get by day to day. If my doctors were required to stop treating me it would cause for me to suffer and frequent the emergency room !

Laurie

I sure hope they can get thru to these people.
I’m so tired of now also being in chronic stress from my pain mismanagement

Signe Topai

I want to know if she is saying what was in second paragraph! “We must restore across ect….! Because without this clear assertive message the rest is just beating around the bush!

Carol Hammond

 I got a call from my doctor who wanted me to see a Reumotologist, they were told he would not see me.  We all know why don’t we:  they don’t want a pain patient.   This isn’t my first story..  I’ll post my story below, I sent this letter to President Trump.

President Trump

Dear Mr. President, I see that you are not looking at both sides of opioids issue.  You are looking only at addicts and completely ignoring “Pain Patients”. 

I am a 74 yr old women that has done many good things in my life.  Adopted 3 children, I was a stay at home mom. In the early 80’s  I was in charge of a family  of 7 boat people (ethnic Chinese Vietnamese). 

I was a Sunday school teacher. Bluebird leader and cub scout mom. I had a hyperactive son and was helping write a resource book for “Hiddon Handicaps”..

 We took in a Japanese student for 3 years until she graduated from college. 

Was widowed in 1983.  Remarried in 1988 (lucky twice in a life time). 

I started and ended up with the largest yacht detailing company in the Pacific NW eventually developing a line of boat detailing cleaners.

I was a patient of Minor & James Clinic in Seattle for many years.  I think this is one of the most SHOCKING things that ever happened to me.   Minor & James clinic KICKED OUT ALL PAIN PATIENTS!   Think about the enormity of this.  

 Why am I telling you this, so you don’t think of us as lazy drug loving people!  I was in a camper explosion and had many surgeries, on top of that I have fibromyalgia, It runs in our family.  In 2015 I had a total knee replacement   it is a complete failure!  I am in pain 24/7 and the opioids help me, without them it would be impossible to live..  We are not addicted to them, we are dependent!

I don’t think you know about both sides of this opioid story, if you did I am sure you would be able to understand  both sides of this issue. 

I am glad you are our President but on this issue you have failed so many.  Please help pain pat

This strikes me as a very good summary of important points to make when testifying. I was, however, a little surprised to read; “Many patients use opioids legitimately and safely.” The word “many” seems to imply that there is a significant number of patients, perhaps even the majority, who do NOT use the opioid drugs in such a manner, but who use them illegitimately and unsafely instead. That is certainly not the case. The problem of opiod use leading to addiction or abuse when used under the supervision of a physician is very low, around 1 to 3% in most studies. So it should be stressed that, “Virtually all chronic pain patients use opioids legitimately and safely” less those on the committee, who have no doubt been subjected to much anti-opioid hysteria, and “opiophobia” from the media, run to the conclusion that proper, fully safe use of such drugs is the exception rather than the rule.

Chris

Finally!! Thanks for speaking up for those of us with legitimate chronic pain. It’s too bad it’s only 5 minutes, but we’ll take anything. Please do everything you can to get things changed for us chronic sufferers. For many, it’s already too late, and that is NOT right!

Mark Ibsen MD

The IOM found that chronic pain affects over 100 million Americans in 2011.
Have we improved by 100%?

Rae Warner

As a chronic pain sufferer it seems to me that 5 minutes is very little time to try and explain the difference between patients who need narcotics/ opiates to live semi normal lives and people who abuse medications. I have yet to see anyone write about those of us that for years have been “under contract” to be able to be prescribed certain medications.. and the contract being a way for them to monitor those who use correctly and those who abuse. I have been routinely given random urinalysis and blood tests .. bound by my contract.. to monitor that I am using and not abusing my medications and to monitor my health while being on such medications.. 9 years of my life I have continually been monitored this way. Why has this process never been discussed? Would it be worthy in telling the powers that be that this is a way that has worked successfully in helping assess need vs abuse?

Susan

Amazing how fast the government can work when it wants to…it seems opiates got pulled from the general market in the blink of an eye, but trying to reverse the damage feels like it’ll take an act of God.

Doctors, pharmacists, drug and insurance companies are somehow being held responsible for patients’ over- and mis-use, diversion of, and overdoses from (prescription) opiates; who’s going to be held liable for the damage withholding them has caused (and continues to cause)? The overburdened taxpayers? Oh, right…no one will.

Has anyone stopped to consider that this is an effect of the Affordable Health Care Act (“Obamacare”)? Trump’s doing his damnedest to move opiate restrictions forward, but this started under Obama. Please don’t blame just one party; they’re plenty of blame to go around. And they won’t stop with opiates; oh, no: benzos and stimulants are next (and probably SHOULD be; prescribing practices ought to be examined, anyway, though I’d prefer the government as far out of my business as possible).

I do think this will be more or less sorted out over the next few years; until then, at what cost and how many lost lives? I hope someone’s keeping track.

BXaFl

I wonder what business Blue Cross has to do with putting their nose into the doctor/patient relationship!? That is, other than their usual approach to the bottom line! “Systems” like the insurance companies loose their attachment to human beings. As a result, the doctors can blame the “system” for refusing to properly treat their patients. I am sure things will get much worse before they are better!

susan

Wow. She is only allowed 5 minutes? I will watch the video Tuesday at 10 am tomorrow.

susan

I hope to hear the comments on chronic pain. I have multiple sclerosis and other pain issues. I need my pain meds to live a semi normal life. I am a very responsible person who doesn’t abuse meds. My PCP knows that I need different meds prescribed for me. I look forward to hearing about the US pain hearing. I live in Florida. Thank-you. Susan Bowie