One Page Testimony for Senate HELP Committee Hearing on “Managing Pain During the Opioid Crisis” – February, 12, 2019

One Page Testimony for Senate HELP Committee Hearing on “Managing Pain During the Opioid Crisis” – February, 12, 2019

My life changed in an instant two decades ago when I was crushed in a serious accident that left me with severe back pain that has never gone away. I was suddenly plunged into a search for relief from an unrelenting, gnawing, burning, searing band of scorching hot coals across my mid-back and the crushing pressure of clenched, spasm muscles tightened like cords running up and down my spine that worsened whenever I was not lying flat.
I have learned that my multi-year search for help is a common story for everyone with chronic pain in America. For nearly two decades, I have led a chronic pain support group, and in recent years I have become involved in a number of efforts to address the dual crises of opioid use disorder and chronic pain in America. My years of experience have taught me that the most vital thing Congress can do is invest in research and improvements in clinical care, commensurate to the economic burden, physical pain, and loss of quality of life and even life itself they can cause.
I call on Congress to consider these key points:
  • Chronic pain affects 50 million Americans, including 20 million Americans who live with high-impact chronic 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 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.
  • 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.
  • Investing in public, provider, patient, and policymaker education about acute and especially chronic pain is fundamental to progress in the care, well-being, and productivity of millions of Americans.
  • Expanding research at the NIH into our fundamental understanding of the mechanisms of pain in the human body is essential to discovering safer, more effective treatments—and someday a cure—for chronic pain, and for reducing reliance on opioid analgesics.
  • The National Pain Strategy and the HHS Pain Management Best Practices Task Force Report are excellent public policy blueprints for jumpstarting a national commitment to pain care improvements. These initiatives must be funded and implemented.

The American crisis of inadequate treatment of chronic pain demands Congressional attention. We have done the work to determine effective next steps; it now the work of Congress to fund these necessary recommendations. I call on you to commit to an investment commensurate with the scale of this crisis to once and for all solve the enormous problem of pain in America.

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Authored by: Cindy Steinberg

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debra

It isn’t right, but if you are a chronic pain patients, you will have to write each senator and congressmen or woman in your state and tell them to quit making chronic pain patients and their doctors pay for crimes of others. Tell them to quit using people who died with illegal drugs in the stats on opioid. If you print off and sign a letter to each representative in your state, make copies and mail one every day or 1x a week eventually they will address the issue. We have got to be nagging to get their attention. Or contact a civil rights attorney and sue for violating of your civil rights.

ray luchi

dont feel bad ever they are trying awfully hard to make us feel like were doing something wrong and were criminal addicts and its just sickening in my case no surgeries will repair had three already no physical therapy no acupuncture nothing works and the orginal surgeons even verified this and whos got the time raising three kids and supporting em in ultra high calif and trying to be successful as a small calif contractor ????esp when ya gotta sit in traffic 5 hrs its bad enough i gotta go 250 miles every month and two separate pharmacies to fill what makes me functional , also the law allows a 90 day do not fill till such and such a date, 2/3 scripts is allowed i asked em plus I did it for yrs untill my dr got spooked by casper the dea delusional ghost. Any ways why would they want people polluting the air wasting all that time and gas to stay functional its just so friggin inhumane i dont feel im in the yr 2019 am i ?????sitting in traffic all friggin day hurting miserable as hell wasting time gas and polluting the air almost wreaking three times when i had a bad cold once and had to get my barely enough meds for the month now times this by 20 million people , its nutz they even push this opiate bs on humans we need drs who are in line with us to come out and start prescribing and fighting with us i know theirs a lot of good drs but Drs gotta get educated on what the cdc implies ????50 under naive ,200 under tolerant as long as at this level before and their doing good and end life ??????really depends keep pushing people i know for fact it works for me im at a such a tapered amount now i almost cant even get out of bed and im moody as hell 80% of the time my kids and women notice it daily

ray luchi

we alll need to march on Washington ill show up make sure its warm so im not in pain tho. Just like all the rest i have never ever abused my meds and its does help me function really well to support my three kids (180 to 210 MM eq). BUT now thanks to my drs back stabbing involuntary lying forced fraudulently tapers when i voiced i did not want or agree ,its always a threat of you wont get anything feeling , i don’t even have enough for this month. Its pathetic ill join any group or sign what we need to, we really need to fight for our rights to be treated for pain with out harassment,fear and with out fraud and our rights to be pain free and enjoy life with out chronic pain , their the ones who gave us the meds then now their back stepping because of a bunch of irresponsible morons mixing booze,heroin,downers or speed with their pills .If you really study all the ods they lie its mostly illegal fentanyl,heroin which they class it together with our meds or its some uneducated naive kid popping em with booze and dying why should the irresponsible always trump the good people who use responsibly and accordingly we need to fight now . Its just another american bs fraud their is no law their is no mandatory requirement, their just cowards of loosing their licenses when really their uneducated about it all, its funny drs with 12 yrs college who cant even read the damn suggestions, not law not mandatory merely suggestions to prescribe . I have talked to em all the dea the calif med board and the CDC ect so on and they all say the damn same thing its not law its not a rule its not regulations nor mandatory its only a suggestion in simple form for people who cant read with yrs of education in its simplest form :50 mm under for naive short term patients or long term too who are naive, 200 mm under for non end life chronic tolerant patients and above 200 mm for end life people to make em comfortable before exiting to the other side we need to fight

Deb

Amen Cindy!! Thank you for your concise to the point article on behalf of chronic pain sufferers

Why do people care more about a few addicts who refuse treatment than people with serious chronic pain syndromes who need serious medication help? Why has “opiods” been demonized. YOU get hurt really bad and see how it feels Mr. Congressman.

Why do people care more about saving “the addicts” than helping people is chronic pain who do very well on oxycodone in medication management programs that are doctor/patient supervised. THe old system of one visit a month worked fine.

After 10 days of Levaquin both achilles tendons ruptured. No surgery possible. Oxycodone only pain med in moderate doses worked. I was always responsible, I am not an addict. Now that’s what doctors think of me. Where has the sanity gone? Some political idiot who wants to “save” people from an overdose? Who’s going to save people from suicide when they do not have pain relief?

I have a rare disease called Floroquinolone Toxicity Syndrome. Terrible pain come in waves 24/7. I used to get oxycodone 10 mg 2/day. Now none. My pain is out of control due to Gov. Health Uncare, NoCare, DisCare, Discard the humans who need help. Who wants to start a mass suicide from chronic pain event?

Michele Conrad

My brother has RSD. His insurance company just decided that he should try another medication and did not approve his regular prescription, thereby sending him into even deeper pain accompanied by withdrawls. He’s been with the same insurance company for 10 years, and has taken his medications responsibly for years. Now, some pencil pusher behind a desk decides that they can save a few bucks by withdrawing approval for his meds ?? It’s sickening. I wrote a scathing rant on the insurance company’s FB page and luckily they responded however this is NOT the answer. Peoples lives are literally at stake when it comes to chronic pain. How can we truly make a difference for this set of individuals who have issues that are not well known (such as RSD)? Count me in fight for whatever reform is necessary.

Kay

I have lived with chronic pain for 30 years. Just when we had it at a level that I could enjoy a few decent days a month here comes the government with the opioid crisis. The ones dying from a overdose were the ones who got it illegally, laced it with heroin but we suffer the consequences. Most did not start out with legal prescriptions, they started out searching for a bigger high. We should not be grouped with them. My need is well documented with all went through trying to get pain relief without pain meds. I went through all of the nerve blocks 4 different spinal cord simulators all the meds they wanted to try first. I have 2 sets of wires in my back that are needless since the spinal cord stimulator does not work. Don’t group me in with the addicts my need is legitament and I use my meds responsibly.

Pain management should not be force on it. Make it a choice right now it illegal. Uncondutuutional and a money making program. Gov, should stay out of medical. Give the doctors there jobs bad. 5 of my neighbor died cause of this program. I was Miss diagnose after waiting 3 months to get in, had to wait another 3 months to get in to another doc. I’m now lost in the system.

The government wants this genocide so they dont have doctor bills through medicare or pay our social insecurity. Why are we just seen as garbage to be thrown away like yesterdays fish? Why is no one documenting suicode as a result of paon and not mental problems?

Barbara Snow

On top all of that, they must make sure that State’s are not allowed to make their own law’s. ie Oregon. And the pharmacy’s, should not tell what they will fill and what they won’t. And lastly, more clinics. So important all of these. The government has no place in our health.

Marilyn Pittman

Very well said Cindy! It is appalling to me the carelessness this “Opioid Crisis” has been put into effect hurting so very many legitimate people following all rules of their pain doctors and still are not getting effective control of their pain. I am friends of 2 such people with chronic pain that have been brushed aside with instructions to go do biofeedback or massage. You are right when you say “The American crisis of inadequate treatment of chronic pain demands Congressional attention”. Is anybody listening? I wonder every day when my friend talks about suicide. Very sad situation!

F.S.T.

We want our opioids back at the dosages we were on that were working, hello!

Before the powers-that-be got involved and made our lives a MESS.

Thanks very much, but I was on a regimen detailed just for me and saw my pain doc about quarterly, unless changes were made. They weren’t.

Tell me, does anyone really, truly, honestly, think anyone is going to suddenly OD after years on this regimen? “Oops! Gosh, honey, better go get my stomach pumped. I accidentally took 47 pills!” Or “I’m going to stop taking this tiny pill that I know works well for me and gives me a life, and start driving 100 miles round-trip 3 times a week for physical therapy (that doesn’t work) and an Acupuncture session (insurance won’t cover) and, oh, let’s add in going to the closest YMCA 50 miles away twice a week to swim in their pool (can’t get in because they have swimming classes on the only day I’m not going somewhere else for therapies that don’t work).

And think of my expenses incurred. Fuel. Therapies. All this when I could have just taken a little pill that costs me $7.00 a month.

Go figure.

Kris Aaron

I was astonished that the opinions of non-medical people were directing our medical care, especially when our MDs disagreed with their uninformed conclusions. Then I learned who they were and why they decided WE — chronic pain patients with documented physical disorders — were responsible for opioid overdoses.
The answer is political. No politician has ever won an election by being soft on drugs. Sobbing “next of kin” are a powerful argument for taking those evil opioids away from everyone, especially when their deceased friends and relatives overdosed on illegal narcotics!
Another reason is that cannabis has been legalized in an increasing number of states and there is a serious discussion concerning federal legalization, DEA agents are terrified of being seen as irrelevant and having their bureau disbanded.
So we’re suffering and some of us are dying by suicide because idiots won’t listen to our doctors cite scientific facts about opioids. “Opioid” is an all-encompassing word, and many people confuse legal prescriptions with illegal drugs of unknown potency that when combined with alcohol are killing Americans in record numbers.
And let’s not forget Chinese-made illegal fentanal — it’s very affordable, 50 to 100 times stronger than morphine and directly responsible for the majority of overdoses deaths.
Not ONE politician, drug agent or drug rehab specialist can explain why prescription opioids should be taken away from pain patients. Of course, some of the rehab experts are happy to insist that “pain acceptance” should be sufficient to put us back into the workforce and make us functional again.
And it’s so much easier to blame pain patients’ opioids for the deaths of beloved friends and family than recreational drug use and addiction.

1oldbroad

Thank you for pointing those things out on this report Kelly & Ralph Maddox. And to Johnny Truelove, I am sorry you were duped along with thousands others.

Rebecca Hollingsworth

Oh come on. If you watched her testimony it was [edit].

Katie Olmstead

I am starting a personal crusade. Not sure how, but I’ll be contacting my local elected officials and working from there. I am sick and tired of the so-called “opioid crisis.” As the writer here says, nearly all pain patients take opioids appropriately. Calling anything an opioid crisis is an insult to all of us and causing terrible harm (tapering, denial of coverage, etc). I’d like to change the name of this issue to “Addiction Crisis.” That leaves all of us out of the equation. We are not addicts. It actually opens the conversation more broadly to include addiction to alcohol and cigarettes along with illicit drugs. I saw a PBS show on the addiction in Japan of kids to video games, a really serious issue. Try it out. What to you think of this new name?

Pat

This is not a one size fits all!
We are trying to find a way to to live as normal a life as possible.
Please stop punishing us because of the actions of others! We take opioids to maintain our lives not to get high!

Rebecca Hollingsworth

I agree. Wish washy testimony. I’m sure she still gets her pain meds. The one that impressed me was Dr. COOP from Baltimore

J.D.

I am always amazed but never shocked anymore at how quickly the govt will jump ahead on something without giving thought to what the consequences could be. They then take too much time having meetings and discussions, conducting studies and asking opinions while making sure that the public is able to see how much they want people to believe that they really care and in the mean time the damage they have created goes on around them stating that this is something that requires thought because we wouldn’t want to cause any harm. They care more about their image then any of us. If this were an individual or a company, they would have been sued out of existence long ago.

nana

Along the same lines: Pain contracts are nothing but doctor protecting contracts and are generally required by any pain doctor. The goal of pain contracts should be to be assured a patient does not live in unending horrific pain.

Instead they are torture:
*No refilling until THE DAY you need the refill. (even if you have to arrange for someone to pick them up)
*Counting your pain pills randomly. (you cannot have too many or too little) (what? prn, the code for “as necessary” is not countable.)
*When the count comes in off number you are often dropped by that doctor. (even if someone in his office has stolen them)
Random urine tests. (often wrong. Foods can give false positives and the patient is yelled at and often kicked out)

How about the confrontation at the pharmacy.

How do they think a surgical patient or a chronic pain patient can get to the doctor every 30 days? Do they have any idea how exhausting the pain is? (and the constant stress of being kicked out or “tapered” or just cut off is very exhaustive too.)

Thank you for this article.

SuzyQ

Amen!!! They need to separate the “opioid crisis” too 2 categories. 1. For the legitimate prescription pain meds 2. Illegal drug use. I.e. heroin, crack, cocaine. They both are categorized in the same context which it shouldn’t be. I’ve been a serious acute chronic pain sufferer for almost 30 years. I took prescription pain meds for the last years 20 until last year when my pcp stopped prescribing it for fear of going to jail cause if the “new” law. I’ve got mri’s…everything is well documented that I need it.

My quantity of life consist of me being bed ridden now as my pain has gotten so severe I can no longer move. Being in pain not only affects your life but weakens your heart and immune system.

It’s a shame that people in pain have to suffer cause others o.d. and die cause of illegal and legal drugs along with a cocktail of other things…mixing it with alcohol, other drugs or wanting that “high” feeling.

Terry

I agree 100% of what you said. Unfortunately congress isn’t going to do a thing! The public opinion is that prescription opiates are the main problem in the so called opiate epidemic. And I might add that chronic pain patients are all drug addicts. If you know anything about our government then you know that politicians DON’T go against public opinion, and never will. We have to change public opinion and that takes money and exposure, I don’t know how to do that. Our little National Pain Report doesn’t have the fire power that we need. I love the report and read them all, but like I’ve been saying, we need a voice to take on our cause, like a prominent senator, congressman or even a high profile, popular movie personality. We have to change public perception and if we don’t we’re all doomed to a life of intractable pain, poor social life, no work and basically not much of a life. As always I am open to suggestions, I’m on board and available to help any way that I can. God bless all my chronic pain brothers and sisters. Stay strong.

Deborah

amen. Help us please.

I AM A 49 YEAR OLD MAN. THE MEDIA SCARED ME ENOUGH TO THINK THAT I WAS GOING TO DIE BECAUSE OF WHAT MY PAIN DOCTOR HAD ME ON? SO I ASKED HIM TO TAKE ME OFF OF MY PAIN MEDICATIONS. JUST SO HAPPENS TO BE A SUBOXON DOCTOR TOO? THAT WAS MARCH OF LAST YEAR. HE ADVISED ME NOT TO JUST DROP MY MEDICINE BUT I INSISTED THAT HE HAD TO BECAUSE I WAS GONNA DIE!
I FEEL 65 FOOT FROM A CRANE ACCIDENT IN 2004. IT WAS SERIOUS ENOUGH THAT I COULD NOT GET A SECOND OPINION. AS SOON AS THEY GOT ME TO ATLANTA GA I WAS RUSHED INTO SURGERY. MY LIFE CHANGED FOREVER IN LESS THAN 48 HOURS.
I LIVE IN A RURAL AREA WITH NOT MANY DOCTORS. RIGHT TO THE POINT BECAUSE WRITING THIS IS HARD!
THEY CUT ME OPEN IN DIFFERENT AREAS. AND TOOK OUT BONE AND PUT IN PLATES,SCREWS AND WIRED ME BACK TOGETHER. I CAN’T GO BACK IN TIME BUT I CAN TELL ANYONE WHAT PAIN REALLY FEELS LIKE. MY JUDGMENT FROM BELIEVING THE MEDIA WAS WRONG! I WANT THIS TO GET OUT SO PEOPLE CAN READ IT. SINCERELY JOHNNY TRUELOVE. FEBRUARY OF 2019.

kelly

Great piece, but still, frankly, too way mush-mouthed on the actual facts. The author states: “Many patients use opioids legitimately and safely.”

WRONG. Nearly ALL patients use opioids legitimately & safely. To even hint that a large percentage of patients DON’T use use opioids legitimately & safely, which is how I guarantee the zealots will translate that damning word “many,” is to perpetuate the criminal myths that are driving this societally-sanctioned torture of innocent pain patients.

Why do so many people who are in the middle of this criminal denial of medical care continue to tiptoe around & basically pay lip service to the abominable lies & propaganda that has started this insanity? Giving the evangelistic zealots even that much credence will only continue to ruin our already slim chances to have a prayer of turning this homicidal train around.

Gary Raymond

Thanks again, Cindy. I cannot foresee positive change while the CDC and NIH are controlled by the HHS. Similarly, with the DEA under the DOJ, there is a conflict of philosophy, mission, and resources. To whom shall the child cry? Mother or Father? When the child succumbs, observe.

Lisa

Thank you, Cindy!

Ralph Maddox

I didn’t hear her say anything that would help us get politicians OUT of our exam room. Or how the DEA has intimidated doctors right out of our care. She sounded more like she agrees with all those touting “Alternatives” to Opioids. I, along with Doctors for Courage, feel that she wasted an opportunity to explain how current interference by NON Medical Personnel, have harmed, tortured and KILLED so many Americans.