To Chronic Pain Community: “Get On The Train or Get Out of the Way”

To Chronic Pain Community: “Get On The Train or Get Out of the Way”

By Terri Lewis, PhD. 

The National Pain Report has been asking some leaders for their views on the state of chronic pain treatment at the end of 2017 and what to expect in 2018. No review would be complete without the thoughts of Terri Lewis, PhD – the mother and daughter of chronic pain sufferers who has been extremely critical of the public health response to chronic pain treatment. Here’s an interview we did this week.

National Pain Report: “Terri, this has been a chaotic year for many chronic pain patients–due to the “crackdown” on opioid prescribing.  Realistically, what can the chronic pain community expect in 2018?”

Terri Lewis, PhD

Dr. Lewis: “This pendulum swings widely and slowly.  As a result, it targets everything in its path without consideration of causation.  We have the additional burden imposed by rhetoric being fostered by policy makers who are simply uninterested in scientific practice or causative associations that lead us to more effective solutions.  It’s bad enough that we have to slice through a poorly performing healthcare system, now we have to strip away the cobwebs of disingenuous fear mongering in addition.  Everyone is looking for the simple and quick solution.  There isn’t one.”

“That said, consumers are beginning to organize and speak out, collaborate and act on the power that they have as consumers in this poorly performing system of care.  I expect this to continue.  And the same thing is occurring for practitioners who are concerned about the integrity of the care they provide to consumers.  I expect to see practitioners and consumers come together in the same space to build on the demand for a system of care that is accessible, helps, and reduces harms.”

“I also expect to see various sectors of the health care industry begin to attack the siloed healthcare system that is imposing unnecessary barriers to access.  Pushback is coming as is conversation across the communities – addiction treatment, pain care, mental health, preventive medicine, allied health.”

National Pain Report: “We at the National Pain Report have been struck at how little attention is paid by the opioid critics to alternatives for chronic pain sufferers who use opioids responsibly. Why aren’t more talking about ‘if not opioid then this’?”

Dr. Lewis: “Quite frankly, our national attention is diverted away from effective care by a conversation focused on the CDC’s disastrous rollout of prescribing guidelines. While our attention has been consumed by the negative impact of these guidelines on the local practice of medicine, it has also taken all of the air out of the room when it comes to focusing on determining effective interventions, processes and measures of effectiveness. We’ve allowed ourselves to become focused on attacking others rather than attacking the problems before us.”

“This is not a unidimensional problem – it includes patient education, prevention, communication between patients and their physicians, informed consent, treatment, and outcome management.  All of these issues are influenced by decisions made by others who have no direct stake in the patient outcomes – insurers, policy makers, and sales forces for drugs and interventions.  All results are not equal, but the only results that should matter at any level are those that lead to effective outcomes for consumers.  Everything else is secondary to this.  When outcomes are right then the indicators that feed this are also lined up appropriately. And so is the money and public policy.”

“While it appears that this system has changed dramatically in a short period of time, in fact this has been a long time coming.  Most consumers are not educated on these changes and how they are impacted by them.  They know things aren’t working, but they don’t know why.  Fighting city hall is a big job and none of us, including physicians, expect to have to go to a city council meeting in order to obtain permission to make a health care decision about our preference for services.  Our failure to account for problems in the system over time has allowed this entire system to become designed for failure of health care delivery and protection of health care institutions – and that is intentional.  We have applied band aids and gum to the rising design problems rather than addressing root cause and policies that are not working.  Multiple gates and barriers have been installed to slow down health care utilization and the outflow of cash with little concern for quality or effectiveness.

Rather than spending the right money for the right pain care delivered to persons with complex needs, we are focused on managing dose, counting pills, rationing appointments, and measuring conformance to indicators that have almost nothing to do with health outcomes.  The amount of waste, rework, and secondary harms is phenomenal, observable, measurable.

We need to comprehend and own this.  We need to wage the battle for right care delivered equitably and in a manner, that reduces fraud, waste and abuse.  That begins with educated consumers.”

National Pain Report: “You are a leader who has been urging people to organize at the state level.  I’m struck by the comments of the readers – how many of them seem to have almost given up. What do you tell those folks?”

Dr. Lewis: “My statement is this.  This is hard work.  Get on the train or get out of the way.  Get involved or accept the results without complaint.  I am perfectly willing to tell folks exactly what none of us want to hear.  The world is changing and we have to change with it.

We have the tools to do this.  Engaged patients can make a difference.  Those who think it is too hard or who refuse to get involved will get left behind the door in their communities – and their communities will function more poorly for it.  It is as simple as that.

We must not allow ourselves to be invisible and we must exercise every political tool that is available to us.  But first we have to understand that our participation in the fight for our future will shape local results so long as states regulate the practice of medicine.  Because our care providers are regulated by state Boards of Medicine and licensure, we have to build effective working alliances at the local level and in our doctor’s offices.  Doing so means changing our behavior under the most difficult of circumstances.  We have to become involved in reshaping a healthcare future that is adaptive and responsive.  And care providers and consumers have to do this together because at some point, we are all consumers in this system.  Nobody ever said that living on this planet was easy or that life would be fair.  But we can make our healthcare system more equitable – and that is worth working for.”

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Authored by: Terri A Lewis, PhD.

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61 Comments on "To Chronic Pain Community: “Get On The Train or Get Out of the Way”"

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Pain is no respecter of person either by race, creed or social standing. When Obama care came along and instituted stated that a person cannot be denied medical help due to pre existing conditions the AMA met in the spring of 2016 and concurred that it was NOT unethical to deny a patient treatment if the physician was not going to receive fair revenue for his or her services. You can look it up. “Cherry Pick and Lemon Drop” by AMA.
Sick people seeking treatment for pain often have other health issues that require lengthily hospital stays, are prone to infections, etc. If you are using a doctor “In-network” he or she is already operating on a discount. I was told it was better to go out of network and out of town to seek treatment and choose a University Hospital setting.
Unfortunately the Health Care Industry in a “For Profit” Capitalistic Machine.
I am white but I put off a needed spinal fusion for 7 years. When I finally went to an orthopedic surgeon he said “you need to much done” I don’t think your insurance will pay for what you need”
I finally found a neurosurgeon at the City Hospital that did two surgeries back to back. I was in ICU for 3 days and another week in the hospital. I was a low risk case-no diabetes, heart or vascular trouble. Five years out, I know have an extruded disc above the fusion, arachnoiditis from the numerous epidural steroid injections and discograms using depomedrol.
Getting old can be a nightmare. I take it just one day at a time.

I am so sorry for your struggle. I know you speak the truth and you are an inspiration to us all.

I’ve been reading some of the comments and I am appalled. Chronic pain patients are being subject to unwarranted and unconstitutional discrimination, but you say you can’t fight. Because of my race I’ve had to fight for and demand equal treatment in every venue of society. Even now, Black patients are half as likely to receive pain medication as white patients. I have been denied not only pain treatment, but also the treatment for several other illnesses. In spite of my disability, I have been physically abused by whites medical professionals. I would be dead had I not continued to fight, research, write letters and complain to get proper diagnosis and treatment. I had to fight to finish college. Right now I am fighting for replacement of my powerchair, medical treatment and just settled a dispute with housing. I am representing myself against a collection agency’s illegal lawsuit. I had to write the pleadings laying in bed. Arthritis has frozen my spine and joints. Black slaves formed the underground railroad, created and maintained the Rosa Park’s bus boycott, the Selma Alabama freedom march, created civil rights to end school segregation, 800,000 black men marched on Washington and 300,000 to 1 million two years later. In the 60’s, I marched for civil rights. During this time Black cities were burned to the ground. Blacks were pulled out of their homes and lynched. Medgar Evers and Martin Luther King were assassinated. Now young people in the Black lives matter movement have picked up the torch. An old black man once said, “A closed mouth don’t get fed”. Silence denotes acceptance. My heart is failing, but I will not remain silent in the face of oppression. I refuse to participate in my own oppression. Yes you can. “Pain is inevitable, suffering is optional”.

I am writing this while lying on my side in bed. It can be done and it helps me concentrate on something positive.I am bedbound and sometimes unable to eat or make it to the bathroom. Because I am a Black Chronic pain patient taking opioids I have been physically and mentally abused, slandered and denied treatment for comorbid illnesses.

In Ohio, White paramedics physically and verbally abused me on the way to the hospital and lied to an ER doctor saying I overdosed. The ER Doctor believed them, ignored abnormal medical test results and failed to diagnose a blood clot in my arm, chest, and neck. I had just had a defibrillator implanted due to a genetic heart condition. I almost died after flying home without treatment. Then another doctor refused to prescribe my coumadin therapy because another Ohio hospital wrote in my chart that I was drug dependent after they stopped my pain medication without tapering. She was going to let me die.I had to beg her for INR treatment. Those veins are now chronically blocked and have no blood flow.

My only outlet is writing letters and comments whenever I see people like kolodny lying about opioid drugs and CP patients. These are the doctors allowed to lead committees and control the creation of biased and unethical opioid prescribing guidelines. A doctor on the board responsible for rewriting Oregon’s guidelines left me screaming in pain and refused to prescribe a muscle relaxer which is the treatment for limb dystonia. The pain, which is the same as labor contractions, brought me to the brink of suicide.

My US Senator responded to my letter about the racial discrimination I experience regarding my pain treatment. I have never abused my medication, never lost it or filled early. I do not have a history of or predisposition to drug addiction. Until two months ago, I was subjected to drug screens every two months, limited to 28-day prescriptions instead of 30 and required to see my pain specialist every 28-days. The white patients were not required to adhere to this regimen. After I wrote to my Senator my doctor changed my visits to every two months and was aware of the contents of the letter to my Senator. I am assuming my Senator contacted him.
We need solidarity and our own committees and guidelines. There are accommodations that will allow you to participate. For example, I dictate the letters and comments I write. Acting against prejudice and telling your story will help us and you more than you realize.

Thanks to all

While I do enjoy reading your articles Terrie this one does seek to go a bit to far telling Pain patients like I who sometimes can’t even get out of bed to do more.I can’t even type somedays or pick up a phone the pain I have affects me that much somedays. I assure you I do write, and I request meetings with legislators, but geuss what? They don’t respond to my requests at all or they send me a “form letter”about the opioid crisis and how they are fighting to keep alternatives like marijuana illegal in NC and on the Federal Level. If they even agreed to a meeting their home district office it is still over 1/2 drive which anymore of a drive than That puts me me bed for days afterwards. They refuse to travel to the city I live in. We can’t force legislators to accept a meeting with us let alone be 100% sure they even read our letters. Many patients that reach out just feel like it’s pointless and won’t change anything, but possibly get us seen more as whiners,and drug addicts.

To HELL with all this! I have evidence to bring the whole “opioid crisis” down on Kolodny & Frieden…enough evidence to bring the whole thing crashing down on their heads. I’m going to the international community…newspapers in the U.K., France, Germany. Belgium, & India. This whole thing was PLANNED, from 2000 till the Guidelines were written.
I’m going to a Federal Judge, & dumping all the evidence I have…but first, I’m going overseas with the evidence, to UTTERLY DESTROY this lie.

I also know who started it…and why.

The world will know…and I don’t die easily. At this point, I am utterly fearless of the consequences. If you haven’t researched the how, why, & when, you don’t know anything useful.

I have battled with chronic, intractable pain since 1979. I am a total physical wreck, and fight each & every day to find the associated laws in the US Code that were broken. Then there’s this:
“Executive Order 12371 of October 17, 1991”

Read what it says. It”s never been rescinded…and is the foundation on which I will build my case. This is why I’m going overseas:
“Google is pulling addiction treatment center ads worldwide
….The move comes after reports that Google profited enormously from ads in the UK….”

Have been cut down 25% at one visit. I cannot live if cut down more. Just saying.
Many chronic pain patients are getting plans in place, Updating wills,giving away sentimental jewelry etc. Writing letters to our children to help with survivors guilt and so on. It is becoming a reality.
No, I am not a danger to myself or others today.

Mike. - Combat Injured Marine, Intractable Pain Patient

We’re not gonna take it,
We’re not gonna take it !
We’re not gonna take it, any more!

To be clear, my last comment was in response to Terri’s post on the new technique using our private pharmacy records to entrap physicians. Why am I the only one who responded to it? I suspect most did not read it or absorb the meaning behind such a draconian move by the DOJ. This action deserves it’s own article.

By keeping up with the same rhetoric the anti opioid zealots use–buying into the model where some use is “good” and others are “abuse” and makinf executive decisions for adult humans about what they put in ther own bodies–YOU ARE IN YOUR OWN WAY. Your train needs an overhaul and you’re over here putting in a stereo and underglow. Until professionals themselves stand up to this idea even though it may mean some loss of business because people won’t be forced as often to see them, this thing is going to have the torque of a lawnmower. Get it a new gearbox and get your fingers out your ears. We see the double standard where you get loud that marijuana, kratom, and other more socially acceptable plants should be plentiful and legal but you won’t give up control over opioids. When people, pain patients and drug users bring this up and how prohibition is what’s causing the problems? Crickets.

The message Dr. Lewis wants to send to the chronic pain community is valid. As I stated in a previous post, everyone who has the means to follow her lead should do so, including myself. But the presentation of her message was unecessasarily harsh and judgemental. There are assertive people who believe beating someone when they are down will spur them into action. Probably works with some. Dr. Lewis’s response to April Dawn with a softer tone is more effective, in my opinion.
But. It’s my belief that the only way to change this will be media driven. I have a fear of losing my pain meds. My physician has a fear of losing practice. It’s true that Drs won’t lose their license easily. But all it takes is one news article with his name in it to affect his life negatively. Rarely a day goes by that the words opioids or fentanyl are not in the headlines of my paper, the Cleveland Plain Dealer. We need an investigative reporter to see the way to fame by writing about our situation. How sad, and unfair and unnecessary it was to take away our means to be functional human beings. That said I would be the first to admit I don’t have a clue how to achieve it. But if anyone in Ohio has a documented case of harm caused by the CDC guidelines, I would do my best to help expose it.

Jesus Terri…..once again we have crossed the Nazi line. How long until all people are affected, not just the disabled? Cannot others see?? How blind is this herd of sheep? Blind enough to leap, not walk, over the cliff of no return.

I put my first and last name on the line almost daily. I have written to newspapers, wrote letters and called Georgia Legislators.
Until we are recognized as a legitimate group of people with intractable pain and go out with pitchforks and torches and dollars as a Group no one is going to listen.
This situation will pass once the truth is told and it is coming.
One day we my have our version of Arthritis Today, or Neurology Now or Parkinson’s type bimonthly magazine.
Previously, Grant money has been given to evil doers of our cause doing great harm in social media and on Tabloid Talk Shows where people are paid to fuel the flames of bad statistics.
These legislators simply have not lived what we are living. YET.
Carry on!

Tim Mason-I personally phoned Chronic Pain Patients-I brought 3 to meet with our local rep but one would not join the complaint-I shared posts on FB and a Pain Advocate out of Alberta sent out numerous emails-A couple of people contacted me but felt too intimidated to join the fight-I spoke with a person who had a group of 4 who considered filing with us but one person who clerked in the army took issue with my using the word “torture” in the complaint. I agreed to remove it but the group used it as an excuse not to join the fight.They never did file their own complaint. People who are online here can get on that train and do what they can. Anyone who has done their best should not be offended. If one is offended I believe it is because they could do more but chose not to. I think Dr Lewis is right when she said that if one cannot get to their local rep then invite them to your home. If they refuse to come at least one has tried.

Just like every pain patient is different so is their ability to fight for their rights.
I may have just given up myself except I was a part of stopping the DEA from making kratom illegal last year. I think we can make a difference. My pain, for the time being, is under control. I can do things some of my brothers and sisters cannot. And I will.
We are all ill, and I daresay depressed, angry, we have a lot of baggage. May I suggest patience and understanding?
Those of us who can, will write letters, make phone calls, and generally raise Cain.
Because you have subscribed to the National Pain Report, you can stay informed of progress, and when you are able, you can also pitch in.
I realize this is not a support group, but I think its important to we stay united.

U.S. officials use early warning system in opioid fight
Associated Press (1/02/2018)

“Armed with new access to a broader array of prescription drug databases, Medicaid and Medicare figures, coroners’ records, and other numbers compiled by the Department of Justice (DOJ), federal law enforcement officials are working to stop doctors who prescribe opioids to patients who do not need them. DOJ is providing the data to the Opioid Fraud and Abuse Detection Unit, which draws together officials in 12 regions. It shows which doctors are prescribing the most, how far patients travel to see them, and whether any have died within 60 days of getting a prescription. “This data shines a light we’ve never had before,” says federal prosecutor Robert Cessar. “We don’t need to have confidential informants on the street to start a case. Now, we have someone behind a computer screen who is helping us. That has to put [doctors] on notice that we have new tools.” Rod Rosenstein, deputy U.S. attorney general, says DOJ will consider going after any lawbreaker as it seeks to bring more cases and reduce the number of unwarranted prescriptions.”

Happy New Year. The world has changed. Will we change with it?

Tragedy is truth discovered too late..
Too many Americans are just beginning to grasp the tragic truth of the neglect of pain by government and the marketplace and the uncaring orientation of govt and of too many in the healthcare industry. As Terri stated this didnt happen overnight and in fact began centuries ago with the modernization of medicine.
Terri is right to call on people in pain to fight. Government and the healthcare industry will not change their ways unless they are compelled to by the rest of society. They have been buffered for too long from direct costs for their neglectful prejudice of pain. When there are costs imposed by people in pain to their time reputation and finances then they will change.
Alternatively people in pain and those who care about them should ban together share resources and require govt and industry to provide access to resources of their chosing.
The crises in pain care is an opportunity for people in pain and those who care about them to develop new ways and a new culture of caring for pain.
Let us build a new culture of caring and a new foundation based on humanity and a bundle of rights that government and industry are required to obey.
We have obeyed government and industrys prejudice toward pain for too long and with tragic consequence. Let us make this year a new beginning of humanity and sanity for all in pain.

Every e-mail or letter I have received back….from my state representatives in Wash,. my state capitol, the HHS, CDC, FDA, and any other dot/gov agency I thought I could contact have ALL wrote back exactly as one of the comments stated which is that “their” concern, the perceived “opioid crisis” and “policy” that has been put into place is the reply I get concerning my pain management issues… NEVER any reference to my question of how, are the patients supposed to manage incurable, lifetime pain generation within the body without, physician guidance and their ability to prescribe, if neccessary sufficient medication. The only “opioid crisis” many patients have experienced this past year is the lack of medication which indeed has created a a crisis. A monetary crisis, a self sufficiency crsis, many other crisis’ caused becuase of the inability to manage our pain effectively enough to simply complete our daily activivties and many patients have had to give up working, supporting ourselves, and may be currently in total limbo as to how to simply survive this “opioid crisis”. I agree that each patietnt should do what they can in this fight for manageable pain care therapy but, as a 35 year businrss owner, a patient that has been successful with prescribed medication in an effective dosage for 24 years, thie 2016 guideline “policy” for opioid prescribing physicians has cost me my business, nearly my life savings, all without ANY direction for my monetary issues caused by the “opioid crisis” and my well managed pain issues are now out of control. I, with the strength that I have will NOT stop punching the keys on my computer and either e-mail or if I feel like it is more appropriate., I will mail a letter to the agency, people, or person that I think may make a differnece for all patients with lifetime, imcurable pain management issues that have been all but, abandoned. It is so irresponsible to me, for dot/gov, any agency or agencies in “cahoots” to place a limitation of medication on patients that has been treated with much success for years or decades without ANY “other” resource for our pain management. TOTALLY irresponsible or maybe more sisnister, money behind the decisions to limit effective, documented success with a dosage or type of medication. The respective agencies realize that pain at an un manageable level without a resource to help manage exists and by now these agencies realize that much harm by enforced compliance of the “guidelines” maximum recommendation of dosage whether it reduced patients medication by 50, 60 or evn 80 percent was a dumb a$$ decision. Damming up the stream of opioids in a prescribed medical form is NOT the answer to the harm being done by abuse of any opioid. Fight if you are a patient……if you can. If you are like many and barely able to manage your daily lives, do what you are able. Someone mentioned that there are those “pain warriors” that may never… Read more »

I too, was shocked and dismayed by the callousness of your statements. You have stood up for us all and fought where many of us cannot. Notice I said cannot, not will not. Perhaps you mispoke? The sentiment is my own philosophy, you can’t bitch if you don’t fight, vote or what ever. But, major BUT, you cannot shame a class of people who are unable to do more than write a letter, or make a phone call. You have placed yourself in the same uncaring, thoughtless group we are supposedly fighting!

It actually hurt my heart to read.

Our government, the incompetent host of acronyms; CDC,DEA,FDA,HHS, etc., are the enemy of logic and reason. I expect our corrupt legislators to lie, cheat, and steal from us. If I saw an altruistic Jimmy Stewart standing on the floor of Congress fighting for truth and justice, I would drop dead on the spot.

Physicians on the other hand chose their profession by sacrifice and years of education to one day have acronyms both before and after their names. On the day they were awarded the distinction of being called “Doctor”, their successful calling was to heal the sick, cure illness, relieve pain which commonly is associated with illness. But first and foremost they swore an oath to never, ever, deliberately, do willful harm to their patients. A Doctor is supposed to be a healer, not a discriminator of which patients will afford them the Highest success scores, patients that will return the highest R.O.I., or fold like a house of cards when a non legislative governmental entity dictates to them how to do their job.

A congressman chose to be a untouchable thief. A Doctor chose to be a healer, but a patient DID NOT choose to be hit by a semi, or contract a horrible illness. In my humble opinion, the moment the winds of change blew the lies of the now infamous CDC guidelines, the collective association of Physicians should have expressed their no damn way stance. Instead of expressing revulsion and telling the CDC to take a hike, the majority took the easy way out. Yes, there are the HEROS of the medical community, many of them willing to put their reputations on the line and fight for us. As far as I’m concerned, the Medal of Honor should be given to each and everyone of them. The problem is they are the minority.

Asking a completely disabled person to March on Washington when taking a shower is like climbing Mt. Everest is like asking a Jewish inmate of Auschitz to scream at the SS guards to change their minds about walking them to the gas chamber.

Doctors of America, You are our advocates. You have the power. You have the professional credibility. You have more acronyms than the government. Stand up to the Washington thugs that believe they know more than you. They have a political agenda. You have decades of education and on the job experience.

I thought this was a serious article until Terri suggested to one responder calling their representative and asking to have coffee. Get real. I think she must have been making a funny because that never happens. Most people after 4 years of torture are too tired or too sick to eat much less have coffee with a representative.

Where is this call you put out?

I concur with Jill,
I know where she is coming from. “Genetics loads the gun and lifestyle pulls the trigger”
Working 30 and 40 years like myself has taken it’s toll on someone genetically predisposed to OA. We were weekend warriors too. (if we were not working on the weekends).
Jill’s key word is: Sick. Some of us are so worn out from joint and nerve pain we can barely make it to the mail box and back.
When I complain out double-billing (which occurs quite often), I lodge a formal complaint not only for myself, but I always mention the 100″s or 1000″s of people that do not have the energy or know how or even the patients to pick up the phone as ask for the supervisor.
Many doctors offices and ancillary facilities use third party companies to bill a patient. They automatically turn them over to a collection agency. I always say “I am speaking for the 100’s of people that you do this way that have already paid and have not the energy to speak up,
In many ways, Jill is the person that worked herself down, has little left to give of herself.
Many of the victims of the intractable pain community are those that fought in wars, laid block and brick for a living, built roads.

If there is a literal train bound for D.C or Atlanta to communicate the needs of the people, you will not have to look far to fill the cars.
These days a cancelled check or receipt is like Gold.

What exactly does “Get on the train” mean? How exactly are pain patients to advocate for ourselves? If we know what works and we ask for it we will never get it. If we remain compliant and settle for a partial remedial solution for chronic pain, we are still in pain. And now we get less and are in more pain. We try a natural remedy (Kratom, Cannabis) and we are treated like addicts and criminals. Seriously, how are we to help our own plight? I want to know so that I can buy my ticket and wait at the depot. I must have missed the specific instructions that surely someone with a PhD. in this field must have to share with us. Can you please expand upon this and help us? I feel like I had just been lectured to and I failed the test. I wasn’t even given any instruction here. Thanks.

The most helpful thing would be to list HOW we can go about helping this out of control fallacy of an epidemic/crisis. I know that when I emailed all of my state reps I received the “thank you for contacting me” email which in turn shows us our email is not read and more probable went into a trash account.
When I’ve called to meet or set up an appointment, there’s a runaround spiel on how busy they and their boy Friday are.
I think that it will be more beneficial for the many to actually list some actions that many may not know they can do. And like you stated, please come up with out of the box ideas you were speaking of. For example, you replied to a commenter, try asking a representative/legislator to come meet at our home.
So let’s put that action list together to help the masses ✨

Donna Corley Director of ASAP Arachnoiditis society for awareness and prevention

As I do agree with Dr.Terri Lewis on many of her views, and I along with many other advocates truly appreciate everything you are doing, but I do take exception to the “get on the train or get out of the way”. Being a non-pain patient yourself, I’m sure it is hard for you to truly understand what this means to us who suffer multiple disorders. There are MANY pain patients who work in the back ground, reaching out to other cpp to help advocate, recruiting family member’s, ect t who aren’t seen or heard. MANY are doing their part, but there are also MANY who have lost their medications, or have been weaned down so badly that they can not get out of bed. Being a chronic pain advocate for many years now, and suffering with multiple disorders/incurable diseases have left me 100% disabled. As an advocate for all who suffer, I believe it is up to us to show them by example, and to encourage them, teach them what needs to be done for those who are able, not berate them for what you think they are not doing because you believe they do not want to. I and many others have been in contact with state reps, and state medical board. It IS hard fighting this battle, and for those of us who are able to do it, we are trying. I believe we must remember that just because a person is didabled does NOT mean they are capable of being an advocate. We must not place this stigma on them.. I talk with chronic pain patients on a daily basis so I know their stories and can feel their pain.
Please try to look past your frustration of this situation and see what we are going through as well. We are ALL in this together and those who can fight are trying to the best of their ability.
I truly admire what you are doing Dr. Terri and we appreciate it more than you know.

As advocates, I believe we fight for those can are unable to fight for themselves, and those numbers are growing due to lack of proper pain care. We must NOT give up and we must NOT blame those who are unable to fight.

I have recently learned from a head state official that when an OD occurs, the coroner doesn’t specify what type of medication was used, only it was opioid induced even though the majority of over dose are caused by illicit drugs like heroin and fentanyl. By the coroner NOT stating in his/her report exactly what caused it, this makes opioids look like the main cause. This is a major problem that we also need to address with our state representatives! We WILL overcome this. We have to much to loose. Our lives are at stake and CPP know this because they are living it day by day and minute by minute.

I agree that things will only get worse unless the pain community and their advocates change the propaganda that is currently being offered up as news.

Part of the problem is the stigma that we have come under as “opiod addicts” in an “opiod crisis.” I remember another crisis about 40 years ago that also stigmatized many of its victims. It was called AIDS. Many of us remember the vicious stereotyping that was prevalent then. If you developed the disease it was because you were a moral degenerate. Two names finally brought the truth to light: Ryan White and Rock Hudson. These two dynamically different individuals were able to finally bring that disease to the forefront of the nation and make those who were affected no longer societal pariahs.

Although I would never want to wish my suffering on someone else, how I wish that the chronic pain community had a Ryan White or Rock Hudson to show others that our pain is not our choice.

I have seen first hand how many Chronic Pain patients have refused to fight. I put forth a call for patients who have been negatively effected to join in a group Human Rights complaint and only 2 additional people answered that call. Everyone else kept quiet hoping that we would be successful. Some people were afraid to lose the medication they were getting even after I told them that it was illegal to retaliate against a person who filed a complaint. In the end, the Federal Commission told me that it was a Provincial issue and that we needed to be denied a service to file. Since I was not denied a service at the time, I was not able to file. Because I was not filing everyone else dropped out.

I have repeatedly put forth information about how one can file in the USA but we have yet to hear of anyone filing.

Dr Lewis is absolutely right. Any person who can use a computer can email their local representatives. It is even better if one can meet their Federal &State/Provincial reps in person. Make phone calls. Send information written by experts to back your emails.

I understand that many are l struggling financially but making a very small donation to those who are trying to fight is also helpful.

…and, she’s supposed to b on OUR side,WOW! How disrespectful of u to challenge the ‘desire’ of INTRACTABLE pain patients 24/7!!!

Terri is a true advocate for CPP but afraid she has ‘0’ clue what some of us goes thru on an HOURLY basis. SHAMEFUL:(

April Dawn, I am sorry that you feel like I shamed you.
That is not my intention.
However let me say, that in the time it took you to respond so eloquently, you could have also sent emails to your elected representatives to ask for them to send a representative to your home to share a cup of coffee with you so that you can speak together about your needs.
This is hard, I know it’s hard.
But it’s time for us to think outside the box. And it is my intention to challenge your thinking about what you are capable of.
We are invisible to the people who make decisions about your healthcare choices.
But nobody is coming to rescue us from this island. We are our own rescue squad.

That was an eye-catching report with expected valuable remarks from many. Some people have known me as a hard charging Licensed Clinical Social Worker who was too smart and dedicated for my own good and kicked a lot of cans down the street for hurting people in a couple of states for a number of decades. I went through the demise of the for-profits mental and substance abuse healthcare Then the not-for profits same. From the top looking down And bottom looking up. I’ve had the opportunity to lose almost everything waiting Three Long Years on an ssdi claim that I Never Dreamed would occur in my life, as I was the healer, not the patient. I was the advocate that could knock down doors Not the one in bed. I’ve fallen (not literally) numerous times attempting not to take the horrendous prescription cocktail which degrades my mind but keep the primal screams at bay. It is a no-win battle. Especially in backward non medical marijuana states where one can feel the neurological pain relief knowing you will lose your pain management care, a no-win. Where you despise opiates, opiates don’t help, people/docs/pharm treat you as a pariah, you don’t even understand the opiate epidemic nor why anyone would want one, yet they keep throwing opiates at you for your treatment and your job is to be quiet and grateful and leave. Most of us have read this report from where we stand or where we sit or where we lay. I Know all of us would prefer to be that strong advocate. We would like to have a family member advocate. We would like to be who we were in the past when , maybe, we at least thought we had a voice or thought our voice mattered. My hope for us all in 2018 is that in those moments or possible days that we have…. that we can take strength, not offense, from this article. That each of us, especially me, who thinks my voice nor my life matter any more, can get on the train, cheer for the train, pray for the train, call for the train, or whatever little bit each of us can do when and as we can do it. I think that’s all she meant.

I am a chronic pain patient and am lucky to go to a pain clinic who treats my pain effectively. I am afraid this could change…such as reducing my dose, trying to use a less effective med, pushing ineffective treatments…P.T., massage, chiropractor, accupuncture…..etc. I have tried most of them…they may help a little but not as effective as my current regime. I can truly understand many may find suicide as the most effective treatment.

Unless anyone including family has chronic pain for years day and night they will never understand what we endure every day.

Lisa, I would suggest if you are on social media, join support groups for subjects you are interested in. I have found the moral support and info I get from these groups are far better than seeing a shrink. There, you will get your ideas.

I appreciate (beyond words) all that Dr. Lewis has done and will do for people in severe chronic pain that have much better quality of life due to Opioids. However, I strongly agree with Jill. I am deeply disappointed that Dr. Lewis would say this.

“My statement is this. This is hard work. Get on the train or get out of the way. Get involved or accept the results without complaint.” “Engaged patients can make a difference. Those who think it is too hard or who refuse to get involved will get left behind the door in their communities – and their communities will function more poorly for it. It is as simple as that.”

If I am not even able to get out of bed, or barely able to eat and go to the bathroom. It is completely unrealistic to expect someone like me to get out there and fight for anything. It was a strangely unfeeling statement that showed an extreme lack of awareness of the reality of my everyday life – and those like me. Just writing this will take all my strength for today. It hurts horribly to be on the computer at all. It takes everything I have to try to put words together. Typing, and sitting at the computer is something I can only do on very “good” days WITH pain medication – which I am choosing to use for this rather than endless other important quality of life things I need and/or want to do. Often I don’t have the pain medications and none of this is possible. PERIOD IT IS AS SIMPLE AS THAT. The thing is, none of this is simple. And I morn that someone who is supposedly actively attempting to help us could say something that lacks basic empathy and understanding of our every day reality. I hope she reads this and things/feels about it. We don’t need her shaming/blaming us along with the doctors, nurses, and everyone else. And that is exactly what she did.

Terri, You are fabulous! What a well-written, important letter to us all. We have spent way too much time dealing with people both within our own population and from outside, and we’ve been playing defense the whole time. It’s time for us to take a those who beleaguer us from outside. We all need to take bigger role in ibtainung and maintaining legitimate treatment options. You have our support, both individually and through ATIP, and I hope we can work together more closely as the new year begins. You have an important platform and you are using it tirelessly. I hope we can support you more and find more outlets for your very important voice. Thank you for all you do.

Our number one concern should be that all human beings within our sphere of influence have access to the quality of life denied to them by debillatating and deadly pain.

We deserve to rise from our beds and live as normal a life as possible. Getting us out of bed and back into everyday life requires opioids which have been used for thousands of years and when used under medical supervision with quality assured medication it is more safe than staying in our beds and dying from rapid physical decline.

We are at a disadvantage in our struggle because we prefer to be truthful and not manipulate and distort the facts to support a false conclusion.

Our opponents are politicians, bureaucrats, and a variety of people including some doctors who are fortunate enough not to be living our lives of pain so they use this issue which is life or death to us but merely an opportunity to be used to their advantage for them whether that be fame, fortune, or some other form of personal gain.

We can’t afford to lose because we have so little quality of life left. I hope we can apeal to the more noble side of human nature which recoils from intentionally causing any creature agony and pain.

This year has got to be better, I’m ready to go into 2018 with a new attitude. I plan on changing who and how I tell my story to this year. My local choice is Tom Wolf PA. State health department and if I’m correct, Christine Houlihan , our democratic party might want to get involved with me. My Republican representative is too busy to answer me or doesn’t want to talk about how unfair I’ve been treated due to this years opiate epidemic. I told my PM doctor to put on the boxing gloves with me cause this year, 2018, some one is going to listen to my story and tell me what to do with my pain condition so I can go on with my life as I was in 2016. I was losing confidence but reading this has brought me back, if I don’t do something to get the word out about how unfair I’ve been treated then I can’t be complaining that no one is hearing us, I am suffering both medically and financially and no one knows unless I get out there again and make the calls to meet the people that need to hear my problem with my pain medication reduction. Thank you Dr.Terri Lewis



How can we go about organizing on a local /state level. Want to see change. Can’t believe how wrong this has gone.

There are state groups set up on Facebook in order to help consumers/patients organize and learn who to contact in their state. These state groups were set up with the intent to work with ALL organizations, groups, and people – and there are many. Without connecting with others in our own states, and with the appropriate policy makers, we will continue to not be heard. Without large numbers banding together, we will not be heard. Please step up, join your state advocacy group, and start to be heard. My state is Washington Pain Advocacy Group, yours will be the same with your state.

No one with intractable pain who’s entire focus is on getting out of bed in the morning can be expected to take on the reshaping of the future of healthcare. I applaud Dr. Lewis for taking on this battle in the name of her family members who are suffering and the rest of CPP needing help so badly. But perhaps she doesn’t realize how disrespectful it is to berate the very sick who have not the strength to climb up on the train nor to crawl off the tracks. We already know that living on this planet isn’t easy and that life isn’t fair. I worked in medicine for thirty years.I have worked closely with over two hundred doctors. I am an educated consumer. I can contact state groups. But I represent only a fraction of patients. Most cannot take on the healthcare industry. They are too sick.
It is as simple as that.
I do not own the deplorable state of healthcare. The spending of money in the wrong way. The multiple Gates and barriers that stand in the way of quality care. Physicians who took an oath to do no harm should be taking on this battle. Paitents can do what they can do. No more.

Dr.Lewis I so look forward to all you have to say, and I have review the data from your post on Pain Community can fight back, and I went through all the steps. I have looked at Nevada’s scorecard, and also the links that are related to my state. I read the other day that Nevada is planning to put together there own plan and not wait for the CDC. As of Jan.1st 2018 it seem to be a a good one. I”m still researching what has been put together but to give the highlights on Nevada’s plan is this, As a patient you will be asked to sign a consent form indicating you know the benefits and risks of using a controlled substance. This hopefully replaces the Pain Contract that was you sign or you don’t get medication. For first time prescriptions,physicians must show a bona fide relationship with the patient, a diagnosis, and a treatment plan.Sound responsible to me. Next the opioid prescription is written for no more than 14 days for acute pain. No more than 90 days of pills will be prescribed to the first-time opioid patient. After the 90 days the physician must provide an evidence-based diagnosis, cause of pain, and a complete risk-of-abuse assessment What that all entails I”m not sure.I do think its fair, and last but not least is the guidelines for what appears to be the Chronic Pain patients which is “Prescribe 365 Initiative” this is patients that have been on opioids for 365 days. They do have safeguards for again those that abuse. I really think that Nevada has stepped up to the plate on this Issues and I for one am proud of this state.

Ok, so a little tough love here. I agree that each of us that face negative impact from the ham-handed changes being instituted on opioid policy should personally advocate for their own interests at both the local and national level. However, I read the comments section to the National Pain Report articles with mixed feelings. The responses are truly heartbreaking, but I fear that taken together they present a frightened, helpless community with rambling, subjective, overly detailed biographies, desperate for “someone” to please “help me.” And that’s ok, even therapeutic, for a comments section. But if it is reflective of what we might write to our representatives, it may even be counter productive.

Perhaps the National Pain Report might better serve it’s community by creating a well thought out, concise letter… a position letter, if you will… that describes our dilemma and what we would like to see happen. This letter could be forwarded to our representatives, the local press, etc., indicating that it expresses our concerns. The template needs to be a short (half page?), accurate (with references), description of the problem and what we see as the solution. It must not be overreaching. It must not be hysterical, and it must acknowledge the benefits and potential dangers that come with opioid use.

The intent is to bring perspective to the hysteria, and ensure that policy makers get an accurate and consistent message regarding our position, and that they get this from many people. I know that I personally could not cite the real statistics associated with the pros and cons of opioid use, and I would guess that this is the case for many of us.

The letter writer could simply attach a very short cover letter briefly telling the target of the letter who they are, and that the letter represents their thoughts and concerns.

Additionally, the National Pain Report might provide a link to a list of potential targets (federal , state and local representatives, major media outlets, government committees, etc.).

Basically, you want to remove the barriers to participation by chronic pain patients in their own advocacy.

Dr. Lewis is correct. “Get on the Train or get out of the way” patients and Doctors need to act. We have the numbers. Unfortunately it might take a catastrophic personal event such as loosing ones Meds to get them to act. We must monitor and educate 2018 local, State and Congressional Candidates on the false narrative being pushed by PROP and other anti-opiate Zealots. Here in FL Governor and State legislature is going to push Horrific Nevada Style opiate limits starting in Jan 2018. We have to act NOW in Florida before it happens. Look up and call, tweet, Email or write your state Senators and House Reps. Use this link in Florida to find out who they are. Most are not aware of who their state Reps are!

Doctor Terri.
Are you really expecting people who live in pain everyday who struggle to do the most basic things in life like getting dressed, keeping clean, and cooking a meal to be able to fight the behemoth that is our For Profit health care system? Congress has wrangled with it for years and they can’t seem to get anywhere near providing quality, affordable health care for the citizens of this country.

The basic problem is we have a For Profit system that has a fiduciary responsibility to their shareholders to provide the highest possible profits. True for Big Pharma, Big Insurance and Big Hospital Systems. All of which are traded on Wall St. This system that profits off of illness and misery is directly at odds with providing quality, affordable health care. No other nation on earth attempts to provide health care in this fashion. We are finding out year after year that costs go up, care goes down and the outcome is worse, leading to our world ranking (WHO) of 37th, tied with Cuba.

I hate to be called a consumer. I am a patient, a person. Being thought of as a “consumer” takes the humanity out of the equation. I have written Congress and the President and if they deem to respond it is some boilerplate answer that they will consider my interests when making their decisions. Please. They have done nothing for the chronic pain patients who are losing their health care and medication. Richard A. “Red” Lawhern, Ph.D. with the Alliance for the Treatment of Intractable Pain is trying his darnedest to reach the Commission on Combating Drug Addiction and the Opioid Crisis, chaired by New Jersey Gov. Chris Christie. I have yet to hear that this commission has responded to him.

It seems to me the only way we will be heard is to file a class-action lawsuit on behalf of chronic pain patients in this country who are losing their quality of life and in some cases their lives. Doesn’t anyone know of a law firm that will stand up for us because as you said we must use every avenue open to us to fight for our rights. This system will only change when it is confronted financially, unfortunately that’s all it cares about.


Folks, it’s going to be more difficult get ANYONE to help us with chronic pain treatment.As I have experienced, Dr appt are inconvenience, keep going up with no end in sight.But,where do you go for relief? I tried pot, it’s ok,but don’t like to be stoned all the time. I get my relief from pharmacies outside of the U.S.— Canada,etc It’s cheaper,safe,and you are not helping to pay for the doctor’s summer home at the beach. It works for me anyway