Support for Outspoken Chronic Pain Advocate

Support for Outspoken Chronic Pain Advocate

By Ed Coghlan.

The readers of the National Pain Report have had varied reactions to the exhortation to the chronic pain community by Dr. Terri Lewis in an interview last week.

The long-time outspoken chronic pain patient advocate has been pushing for more action by the chronic pain community and wrote two essays for the National Pain Report instructing folks how to get involved at the state level (see below).

But when she stated in last week’s interview that the chronic pain community needs to get on the train or get out of the way, it set off a debate.

Some of the very people she has been advocating for, were offended.

A typical reaction was one posted by Jay Schankman who wrote: “How exactly are pain patients to advocate for ourselves? If we know what works and we ask for it we will never get it.”

But for Lewis and many others, her words about fighting state and federal bureaucracies and organizing efforts drew plenty of support.

One from another activist, Richard Lawhern, caught our attention.

Okay, folks, let’s take a deep breath, please?  I understand both the points that Terri Lewis is making, and the concerns expressed by largely disabled patients. I’ve been talking with people in pain for over 20 years about these concerns.  May I suggest a meeting place for the two points of view?

Many patients feel (and truly are) so disabled that they cannot do very much to advance the cause of sanity in the treatment of others like themselves.  However, if you can write a letter of complaint to National Pain Report,  then you can write a letter of complaint to your Congressional Representative.  Or you can look up a phone number of your local newspaper editor or television news anchor, and place a call.  Invite him or her to send a reporter to your home, to see “the human face of pain” and “the other side of opioids”, before writing a story about people like you.

Likewise, where are your more able-bodied caregivers? Have they read this article? If not, then why not?  Anybody who can walk, chew gum, and drive to your State Capitol can schedule a half-hour appointment with the healthcare legislative assistants of your Governor or State Assembly person.  I and others in the Alliance for the Treatment of Intractable Pain can back you up with briefing papers or a phone call to rehearse what you may wish to say. 

I know that chronic pain patients have it tough.  My wife and daughter are pain patients, so I face this issue every day.  But I also know that Terri is very largely correct in her insight:  if patients themselves and those who love them don’t require change from our legislators, then nothing will change.  And letter writing by itself isn’t enough to bring that change about.  Some of us must go in person to demand that our legislators grow a backbone and start refusing campaign contributions from Insurance companies and the owners of addiction recovery centers.”  

Editor’s Note: Dr. Lewis, as a daughter saw her father deal with chronic pain and as a mother she has a son who is a chronic pain patient.

Her recent recommendations on how to become active are here.

Step 1- Get Your House in Order

Step 2 – Understanding the System in Which Your Healthcare is Organized

By the way, don’t expect Terri Lewis to quiet down. She shared that groups are forming in every state to fight the CDC guidelines and the resulting patient care challenges.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Ed Coghlan

There are 17 comments for this article
  1. Alisa Malone at 5:42 pm

    In th late 1990s I was in a car wreak where a man hit me from behind going over 50 mph. After 3 months of physical therapy I returned to work at the Paper Mill. A 120lb woman back at the end of a shovel and driving heavy equipment it didn’t take long for the injuries to my spine to deteriorate. I became disabled in 2002. My neurologist put me on Celebrex which is where I stayed for 5 years. Only when it started damaging my liver (2007) did he put me on narcotics. 5 mg of hydrocodone. It was only after suffering for nearly 2 years and 2 operations that finally he sent me to pain management. We have done message therapy with limited and short term success. My insurance won’t help but for 3 months. I stretch, do chair yoga(best I can) and limit sugar which is called an inflammatory. Now after years of passing my drug tests, adhering to all the rules and doing my medication as prescribed, I along with thousands others are being cut back or withheld from medication that let’s us
    live without pain 24/7. They had finally stabilized my pain (at 55) now they are steadily decreasing my medication because as my Dr. Put it, “My licence is at stake”. Federal Guidelines have resulted in a panic among the very practitioners who spent 6plus years in school so that they could help patients such as us. We have to speak out and let our voice be heard. Just now am I starting to educate myself and hope others will join forces. The majority of overdoses are not coming from patients like myself.

  2. FormerPatriot at 9:50 am

    I know I am repeating comments like a troll, but this is too important to let anyone miss it!!

    https://www.federalregister.gov/documents/2017/12/13/2017-26785/opioid-policy-steering-committee-prescribing-intervention-exploring-a-strategy-for-implementation

    SUMMARY:

    The Food and Drug Administration (FDA, the Agency, or we) is announcing a public hearing entitled, “Opioid Policy Steering Committee: Prescribing Intervention—Exploring a Strategy for Implementation.” The purpose of the public hearing is to receive stakeholder input on how FDA might, under its Risk Evaluation and Mitigation Strategy (REMS) authority, improve the safe use of opioid analgesics by curbing overprescribing to decrease the occurrence of new addictions and limit misuse and abuse of opioid analgesics.
    DATES:

    The public hearing will be held on January 30, 2018, from 8:30 a.m. to 4:30 p.m. The public hearing may be extended or may end early depending on the level of public participation. Persons seeking to attend, or to present at, the public hearing must register by January 16, 2018. Electronic or written comments will be accepted after the public hearing until March 16, 2018.

  3. Nicolas Martin at 8:52 am

    Physicians, like most people, will not bite the hand that feeds them. From the day she enters medical school a prospective physician is beholden to the state. Recognize, though, that physicians demanded and profit handsomely from this relationship.

  4. Wanita1 at 12:48 am

    Dr.Ibsen,

    I am furious just reading some of the responses to this and the other articles. I don’t know how you even continue to advocate as you have lost so much. You have been treated so horribly and we really don’t even know a quarter or what you endured. I am angry and have to restrain myself from writing what I truly want to say and know to be the truth. Many pain patients who don’t have what they need are afraid to lose what little bit that they get, so they stay quiet except to vent online using a screen name. In the end they are shooting themselves in their own foot.

    The FDA proposal with less than 1000 responses is a disgrace! There should be hundreds of thousands, if not millions of comments. People need to file complaints with hospital, State Nursing, Pharmacy, and Drs’ Governing bodies. They need to write both Federal and Provincial/State representatives. They need to keep it short, to the point, and back up what they are saying using experts’ articles. Tell BRIEFLY how you are suffering. Do not ramble on as they will not read it. All of this can be done via email from a bed. These emails should be ongoing and not stop. If you have written once, then write again. Send articles written by reputable experts or links to articles. Send links to stories such as the those by George Knapp and Roy Green, email them to State/Provincial, Federal Reps and medical Governing bodies as often as you can. I try to send once a week or more and one letter can be forwarded.

    Dr Ibsen, I do hope you continue to advocate for us, we need you and I am truly sorry for the hell you endured.

    Laura Robertson, there are many people in Canada who are working hard to fight. Our country has 1/10 th the population than that of the USA so I can see why it doesn’t appear that people are fighting. We have Drs, nurses, pharmacists and others who are working on the problem.

    Everyone must be encouraged to email and tweet our Federal and Provincial Reps. People who have Drs who are unwilling to prescribe should present them with this document http://apps.who.int/iris/bitstream/10665/44519/1/9789241564175_eng.pdf They should carefully read over the Canadian Guidelines so that they understand every single part of it. The guidelines are written using GRADE approach and many of the guidelines state that they are made using “weak” evidence. All Drs do not realize this.

    If one needs, I have letters from McMaster stating that patients should not be abandoned and that pain should be treated. Patients needing over 90 MME per day do not need to see another doctor but rather the Primary Care Provider should consult with another Physician.

    Those who have been refused access to opioid therapy and would benefit from it or those who have been abandoned should file a complaint with The Human Rights Commission. If it is someone denied meds then instead of stating that they were denied meds they should claim they were denied the right to Informed Consent as they have the right to consider all relevant treatment options. Those who do not have OUD and are forced to sign a patient contract or mandatory urine screens are being discriminated against and should file with HSC.

    We all need to participate. Most people in the USA & using opioids for pain are already listed in the monitoring database and should not fear letter writing. Everyone need to comment on any FDA proposals that concerns opioid prescribing.

  5. Mark IbsenMD at 3:17 pm

    In2012 I began to see patients abandoned by other doctors
    By 2013 the state board of medicine was putting me on trial for overprescribing
    I won in s series of hearings before the Administrative Law Judge.
    The board chose to ignore those findings
    Bury the evidence and suspend me anyway

    I tried to get Support from my state society
    The Montana Medical Association.
    They remained silent.
    Many of my patients showed up at my hearings.
    But:
    No one is listening to my expertise.
    I have been unable to provide more leadership
    Because my case has gone on for years.
    Yes,
    Millions of pain patients are being betrayed and abandoned
    Physicians cannot lead pain patients or
    Regulators
    Or
    Legislators out of this mess.
    No one is listening.
    So
    Pain patients are the only ones who can advocate,
    I have lost everything in this battle
    I’m just as shocked and upset as my patients that are still alive ( many are dead now-including a suicide 2 weeks ago)
    So
    Please know that I could not save you
    I tried.
    It is now up to you:
    Every patient who is in pain
    Or
    Had pain
    Or will have pain
    Needs to know:
    They are going to abuse you until
    You show them you are a voting block that will impact their reelection
    Speak out
    March Or limp for the cause.

  6. Kathy C at 1:05 pm

    I am doubtful about any of this anymore. My previous attempts to contact Legislators, and officials in the past, led to me be labeled. In my state there has been ongoing denial over the Healthcare System in general and then about the “opiate epidemic. Since there was already a serious problem here with heroin, which they have re- branded as a prescription drug issue, our politicians are running on Alternate Facts. Our Local news has been deceiving the public as they go on and on about prescription drugs, which were never as prevalent as they were in other states.
    When I try to engage in public especially if is a long day, or difficult to get around , the pain creeps in. I have had surgery and an Implant in my neck, which makes it difficult to talk sometimes. I found that even explaining any of this is interpreted as something negative. I try to keep it clinical and simple, but these people are quick to judge. If I become fidgety from the pain, or limited movement in my spine, I am fairly certain they interpret it in the worst way possible. They are really quick to dismiss people as if they are a drug addict, or Mentally Ill. Explaining any of this sets off another track in their minds that we are pathetic or seeking attention. In Alternate Fact America, they already have their preconceived notions from popular Media or the so called “Experts.”

  7. Mary W. at 1:57 pm

    I feel that the Dr’s willingly knowing that the true patients that have chronic pain should be taking care of. I feel that a lot of people are taking this opioid situation to far. We as people no matter you race or back grown is we are still human. Back before pills the Indians had herbs and weed to rely on to heal them and for pain. No one was dying off of weed and herbs. I look at tv commercials of violence with black and white. Man are the ones that made this drug and a multitude of people was giving it to them for use of pain. But, NO one can say weed killed people. None of this wouldn’t have came into play if it wasn’t a big epidemic of deaths because people can’t correctly take their medication properly. Stop the blame gaming and find a real reasonable ideal to take away from the chronic pain people. If you all don’t realize addiction is not a drug that African Americans. Our generation picked cotton, used different roots to heal the sick. Mid wife’s to delivery black and white women’s. So, now on tv all you see is white American people on tv with intervention talking about opioid addiction. But, they have history behind what they do and why it’s done. People get it together have strength to live. I went without my pain meds for 3 months because my insurance wouldn’t pay. Medcaid and other government offices are giving people little at a time. Shame on you so people can’t walk, medication still to high for people to afford. Shame on y’all.

  8. Mikst_Granny at 12:10 pm

    Drew, may I first say: you may not feel physically strong but your writing is very strong and persuasive! Your comments moved me to make this response thus, your actions can and are capable of effecting positive change such as recruiting others into writing letters or visiting legislators. No matter what, you definitely ARE making a difference! Keep it up, please!

    Secondly, may I suggest you look into applying for free paratransit and/or free shuttle bus or city bus fare? Most communities have local Centers for Independent Living that assist PWDs with any issues they might have that effect their ability to live independently such as transportation, housing, healthcare, etc and are great places to find others fighting for their civil/human rights. You can locate the closest CIL here: http://www.ncil.org

  9. Tootie Welker at 11:38 am

    I’m totally with Terri Lewis on her comments! But as a long time organizer (over 30 years on various social & political issues) I also know that unfortunately a few always carry the many. I use the example of the labor movement. All workers have benefited from their organizing but many who work in union shops will complain about having to pay union dues – but of course never complain about the benefits they gain. Like Terri & Red have said, if you can take the time to write a letter of complaint over Terri’s comments, then you can write letters to your policy makers. I’ve also been castigated over comments when I’ve been frustrated with all of the chronic pain support groups on facebook, where many can spend all day writing about how much pain they’re in and how awful it is but then say they are in too much pain to write the letters or calls needed, or make the comments needed on the Federal Register. If you won’t take the time & effort to speak up for yourself, who exactly do you think is going to do it for you? We are all responsible and we all need to raise our voices.

    On a recent regulations.gov link on the Federal Register requesting comments on the FDA’s Opioid Policy Steering Committee, there were less than 1,000 comments! Seriously, when there are MILLIONS of people in pain being impacted by these regulations, less than 1,000 of us could take the time and effort to comment??? And many of us posted the link everywhere we could, although I heard some chronic pain support groups removed the request stating “we don’t do advocacy or calls to action”! That is the most head in the sand response ever. Unless the millions of us who are being negatively impacted by this insanity are willing to raise our voices as one, we can not expect it to get any better then and we’d have no one to blame but ourselves.

  10. Duane at 11:09 am

    Understandably, people will be offended but please also understand that this is a life and death situation, literally. People have posted that the suicide rate will skyrocket because of their pain meds being cut off, sometimes without proper tapering. So these poor people are going through terrible withdrawl and suicide will seem like an answer to that nightmare. So those who are willing and able should do everything we can and those who can’t should understand this as a call to arms for those who CAN act and are willing to do so. Those of us who can function somewhat normally should fight for ALL of us who are suffering. We understand there are some of you who can’t be active in this fight and we should accept this as a fact. I think the “get out of the way” part was more of a way of saying just how serious this situation is and how we need to act soon. I didn’t see it being in a literal sense.

    The situation we are in now was created in the ’90s by the medical community, declaring pain as the “5th vital sign.” Understandably, the drug manufacturers filled the need, saying these meds are not addicting. And if taken on schedule, without taking extra or other misuse, they are NOT addicting. I’m living proof. Yes, they will cause physical dependence which is nothing like full blown addiction. So we DO need to get moving before these misguided “experts” pass legislation from which there will be no going back. We have legislators and others who know nothing about this subject wanting to act, to get some type of win in the war on drugs and are now scaring off the very people who can help us. The authorities need to stop the people who intentionally misuse these meds to get high with and leave the rest of us alone. These opioids are all we have for leading somewhat of a productive life and they need to understand this. If you doubt how serious this situation is, then read this; it should open a few eyes: http://medicaleconomics.modernmedicine.com/medical-economics/news/pain-not-fifth-vital-sign

  11. Lisa Davis Budzinski at 10:07 am

    Thank you for listing the above steps! Those steps will be very beneficial for many who really do not know but definitely need a starting point ✨
    Thank you Terri, Ed & Red for all that you are doing!

  12. Laura Robertson at 9:52 am

    Oh how I wish I lived in the US. Well, actually, as a Person With Pain, I don’t. The states is about three years ahead of your Canadian neighbours, and our health care system is better. Or it was…

    Your cursed CDC Opioid Guidelines have slithered across our borders, confused our leaders and sadly, brainwashed our health care professionals. And with the chronic media slant demonizing opioids, and causing everyone to believe that anyone who takes opioids is an addict, well, we are in serious trouble here.

    The Canadian Opioid Summit was held five weeks before the delisting, was announced and held AFTER National Pain Week in November 2016, and was held with such secrecy that they didn’t even announce it publicly until 3pm the day before. The location was kept secret. Clearly, input from the public was not on the agenda, forget PWP’s.

    We had our higher strength opioids delisted as of January 1st, causing financial devastation for anyone on a fixed income. But it was almost a moot point anyway, because, by then, our doctors were too afraid to prescribe the higher strength opioids for fear of losing their license.

    The Canadian Opioid Guidelines were as bad as the CDC’s. So we now have a system that is actively engaging in patient abandonment, refusing opioid therapy even for those on stable doses for years, and shaming, stigmatising, misdiagnosing, disenfranchising, and dismissing with inhumane levels of cruelty, the huge vulnerable sector of the population (up to 30%), those with chronic pain who do not have the comorbidity of addiction, and basically, well, either driving those with untreated pain to bed, to street drugs, or to suicide. Can you say discrimination?

    This is a health care catastrophe. But until the bodies of Persons With Pain who died by suicide start piling up significantly higher than the tragic addiction overdoses, we will not even begin to be heard.

    Perhaps when that happens, then our loved ones will stop being ashamed of us, and start getting organized…

    One thing I do envy those of my southern neighbours. The National Pain Report, and all of the people who are publicly fighting. Want to come to Canada? We desperately need your help!

    And thank you, NPR for your great work.

    Laura Robertson
    Patient Advocate, Peer Counsellor
    chronicpain@bell.net

  13. JoDawn at 9:21 am

    Wise comments, Richard Lawhern.
    We ALL need to make calls & emails. Personally, it would be extremely difficult for me to drive back and forth to my state capital.

    But I need to get busy and do what I CAN DO.
    Maybe we all need to look at what IS possible for us, and quit fighting about what we can’t. Heck, if we are really lucky, maybe we can start getting BETTER care and all be able to do a bit more, or hurt a bit less, next year.
    Here’s to 2018!

  14. Janice Poole at 7:51 am

    I am a chronic pain patient of 19 years. Had a crush injury to both legs and feet resulting in complete nerve destruction and muscle loss. The pain is EXCRUCIATING AGONY comparable to Joan of Arc burning at the stake! I know intractable pain because I have CRPS!
    I won’t go into a lengthy email about my problems and experiences. I have read Pharmacist Steve’s website for years and have received an education about everything to do with what has happened to the Chronic Pain Community bar none! This man Steve Ariens is a God send to us! I respect Terry Lewis and Red Lawhern for what they are doing and just the fact that they are trying to help us. But I have to tell you that you can do all the things they are suggesting till infinity and IT WON’T AMOUNT TO A HILL OF BEANS BECAUSE: 1) THE PUBLIC DEMANDS THAT THE POLITICIANS DO SOMETHING ABOUT THE SO-CALLED OIPIOID EPIDEMIC AND OD DEATHS. IN ORDER TO WIN VOTES AND STAY IN OFFICE THEY WILL ONLY LISTEN TO THESE PEOPLE!! PLUS , UNLESS YOU REQUEST THE HEALTH STAFF ISSUES PERSON TO ADDRESS YOUR LETTER TO, AND STATE THAT IF THEY DON’T ADDRESS OUR ISSUES YOU WILL NOT VOTE FOR THEM, YOU WILL GET NOWHERE!! 2) UNLESS YOU INVOLVE AND EDUCATE THE PUBLIC BY MEANS OF WHISTLE BLOWING TO THE MAINSTREAM MEDIA, NOTHING WILL CHANGE!

    People like Steve Ariens (or someone like him who has read all his articles and knows them backwards and forwards) need to get on 60 MINUTES, GOOD MORNING AMERICA, THE TODAY SHOW AND CONTACT THE NY TIMES AND THE WASHINGTON POST TO BLOW THE WHISTLE ON THE CDC,DEA,FDA, DR. ANDREW KOLODNY AND JANE BALLANTYNE WHO ARE SPREADING LIES AND FASE STATS ABOUT OIPIOIDS!

    Until that happens and the public becomes aware that CPP’S can’t get their pain relievers and THAT EVERYONE,AT SOME POINT IN THEIR LIFE WILL NEED PAINKILLERS EITHER FOR CANCER OR END OF LIFE DISEASE AND THAT THIS IS THEIR PROBLEM TOO WE WILL LITIGATE THE PHARMACEUTICAL COMPANIES TO THE POINT WHERE THEY WILL STOP ALL OIPIOID PRODUCTION AND WE WILL BE BACK IN THE DARK AGES WITH A SHOT OF WHISKEY FOR ALL OUR AILMENTS!

  15. Terri Boettcher at 7:36 am

    I have spent 2 years writing to my Maryland state and local representatives; and also contacted all of my local news outlets (as well as national ones) asking them to do a story and nobody is willing to do it.
    Just saying that I’ve reached dead ends each time I’ve contacted someone who has the power to make changes.

  16. Nicolas Martin at 7:27 am

    No progress will be made until Americans demand a restoration of the traditional right to drugs. People have long taken intoxicants to relieve spiritual suffering, as well as physical, and the pain advocates still try to separate themselves from “addicts,” who they see as illegitimate users of drugs. This is folly. The only measure of pain is self-reporting, and so no physician can objectively validate the existence of pain or measure its intensity. So long as doctors, agents of government, control drugs, the suffering will continue. The scapegoating of “addicts” by pain advocates (#patientnotaddict) only makes things worse.

  17. Drew Pavil at 5:36 am

    I live in NC which just had a very restrictive law go into place for opioids. Dr’s in NC can only write scripts for 5 days worth of opioids. The new law is only supposed to be for post surgery and acute pain patients, but I worry that this is only the beginning and soon the new law will be expanded to include chronic pain patients. I can’t drive and must depend on the city’s wheelchair bus service. Trips to the pain clinic and pharmacy every five days will be an expensive nightmare. I already have to schedule all bus rides two weeks in advance due to limits on bus availability. All this for a fabricated opioid problem! I have zero doubt that this war on opioids is only to ensure the survival of DEA jobs now that people know that the “War on Drugs” was a total scam, and that marijuana is quickly becoming legal in the U.S.

    I wish I could fight, but just getting through each day is hard for me. I really dont have the strength. Plus its a difficult fight as most
    people already have been blinded by the media who were too lazy to fact check the govt. The claims. Dr’s are legitimately scared because the DEA is treating them like heroin dealers, and making seizures of Dr’s property and money before putting them in prison. Our forefathers would be disgusted by the tyneary that our own government has used on the American people.

Leave a Reply

Your email address will not be published. Required fields are marked *