Call to Action Step 1 – Get Your House in Order

Call to Action Step 1 – Get Your House in Order

By Terri Lewis, PhD.

On Sunday, Dr. Terri Lewis issued a call to arms to the chronic pain community in the wake of the DEA search of Dr. Forrest Tennant’s office in West Covina. It inspired dozens of comments from our readers. We asked her to expand on those thoughts and share what the chronic pain community can do to organize. Here’s what she said:

Terri Lewis, PhD

Nothing fuels moral panic and the spread of contagion like emotion and an uninformed public. Let’s change this by TAKING BACK CONTROL OF OUR HEALTHCARE DECISIONS. It’s going to take time and hard work and we can do this TOGETHER.

To begin this journey, you must begin by embracing your responsibility to become INFORMED about the conditions under which your state is regulating your health care and the dispensing of important medications. Today, here are five actions you can take to become better INFORMED and begin to take control over this aspect of your health care:

(1) Who’s on your team? Take stock of your care partner relationships. Whether you are a care partner or the consumer who requires support, make a pledge to become informed.  Develop a buddy system among your friends, family and social media groups. Decide to do this as a team.

(2) Form a study group. Plot your progress and study these issues together.

(3) Review the information on these links- http://www.healthinfolaw.org/…/who-owns-medical-records… https://www.hhs.gov/…/for…/medical-records/index.html

  • Study your medical records together. Investigate them for correctness, gaps in information, and order them by date. Make notes of errors, missing data, other things you are concerned about.  Ask your physicians for an extended appointment to go over your medical records with you and address deficiencies, your plan of care and current policies for treatment.
  • Gather your EOBs for insurance and compare them to your medical records. What was billed for how much? What services are reflected? If you see discrepancies, contact your insurance company and ask for clarification.
  • Gather your pharmacy history. Ask your pharmacy to provide you with a comprehensive print out of the medications you have been prescribed, costs, timeframes. Make an appointment with your pharmacy manager and ask them to explain to you exactly how you will be affected by their policies for dispensing pharmaceuticals and reporting them into your state PDMP system.

(4) Find out what YOUR state’s regulations say about the management of pain and who administers the program by review the information on these links – http://blog.aapainmanage.org/state-state-laws…/ http://www.namsdl.org/

How does your medical history square with the current laws on the books in your state. How do the laws compare the CDC Guidelines published on March 16, 2006?

(5) Go to the internet and search your state legislative health care committees and its membership. Determine who your representatives are in your state house and your senate.

  • Make an appointment with your local representative. Go over your records with them and tell them how you are affected. What’s working and what’s not.
  • You don’t need to go to their office. Invite them into your home. Show them how you are affected by their decisions.

I will set up a forum for anyone who commits to stepping through this process. So stay tuned.

Dr. Terri Lewis is a rehabilitation educator, clinician and researcher who specializes in chronic pain and is a frequent contributor to the National Pain Report. 

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Authored by: Terri A Lewis, PhD.

There are 17 comments for this article
  1. Jamey Breerwood at 11:33 am

    I am very interested in doing anything to change this awful situation. They are taking away any quality of life they we have. My email address is menax4@yahoo.com.
    Thank you so much for your insight in this matter.

  2. bin at 7:29 am

    I agree with what you are saying Mr. Schubring but, my provider HAD to attend a meeting, by DEA “officials”. in late 2016 as an opioid prescribing specialist and he along with several dozen other providers in the area and were TOLD with no minced words tro not prescribe over 90 mme daily and to reduce all patients to a maximum of 90 mme daily regardless of patient documentation and history of use. Not “asked” to prescribe as he personally evaluated, examined, and prescribed to each individual patient. My provider is the ONLY doctor in his business that has a DEA number, he IS being watched, audited by the DEA and like all other prescribing physicians fear for his license “forfeiture”. Regardless of whether or not the CDC “guideline” is law or a true guideline, the DEA is running the show. From who’s orders? The inability to provide for ones family and ones self is as powerful a “persuader” to get results as intractable pain,.I don’t believe the DEA has gone rogue, there is an agenda behind the persecution of the patient with lifetime pain as misguided as it is. It is very difficult for we patients to rally our representatives when it is almost all we can mange to survive.

  3. ELIZABETH CHAMBERS at 6:09 am

    I agree all of us have rights we need to get together and defend our doctor that are willing to help, it’s so sad been in excruciating pain and we need to let our voice heard Don’t give up And thank for all the information

  4. Robert Dean Rose Jr. at 9:20 pm

    Everything you mentioned is a waste of time! They are the reason Dr. Tennant and so many others have been targeted by the DEA and other pressures behind the falsified opioid epidemic. If we really want to turn the tide in his AND our favor, we need to file civil lawsuits against them for violations against our civil rights. THEN and only then will we get the media’s attention and stem the flow of horrendous policies creating such pain and suffering. If you doubt my words, then ask yourself; How are the politicians with no medical training and the DEA among others allowed to stomp all over FEDERAL LAW without consequence?

    U.S. Code › Title 42 U.S. Code § 1395 – Prohibition against any Federal interference – Nothing in this subchapter shall be construed to authorize any Federal officer or employee to exercise any supervision or control over the practice of medicine or the manner in which medical services are provided, or over the selection, tenure, or compensation of any officer or employee of any institution, agency, or person providing health services; or to exercise any supervision or control over the administration or operation of any such institution, agency, or person.
    (Aug. 14, 1935, ch. 531, title XVIII, § 1801, as added Pub. L. 89–97, title I, § 102(a), July 30, 1965, 79 Stat. 291.)

    Please read the article in the Greeneville Sun, TN dated November 9, 2017 “Marine Veteran Files Lawsuit Against VA, Roe” for more info about my $350 million lawsuit against Congressman Phil Roe (R-TN) and the Mountain Home VA Medical Center. Case #2:17-cv-204 Robert D. Rose Jr. v Congressman Phil Roe (R-TN). Then if interested in filing your own complaint, contact me and I will provide you with the civil tort paperwork I filed to get you started. Robert D. Rose Jr., BSW, MEd., USMC – Semper Fidelis

  5. Ruth O at 6:45 pm

    I can understand how some people end up moving into the world of heroin when their doctors cut them off. Then they are uneducated on the use of heroin and end up overdosing on that. I think the doctor and the government should be charged criminally for that persons death.

  6. Alexis at 4:36 pm

    I live in the so-called “city of medicine”, and let me tell you, I would be laughed out the door if I fired THEM. There is such a doctor shortage here that if you walk away from the crummy one you have, you’ll have none at all, literally.

    The ONLY reason I still go to MY crummy doctor, is to get my prescriptions renewed every month. That’s it, because my doctor sure couldn’t care less if I fired her.. as a matter of fact, she would jump for joy at the prospect because I am on opiods and she hates giving them to me, always trying to reduce. She would love for me to fire her, because two years ago she rocked my world one day when she said “I really don’t think there’s anything else that we can do for you here and I think you need to find a clinic that meshes with you better “.

    I cannot tell you what that did to me when she said that. I immediately clammed up. Could not speak, could not get a word out it hit me so hard. As soon as she realized how seriously her statement hit me, she started to try to soften it by saying things like “well, it just seems like we’re not doing you any good”.

    You see, there is no other place for me to go because they have their own pharmacy and my medicine is free. I’m stuck there because I don’t have over $4000 a month for my medicine.

    This patients hands are tied a 100%.
    I lost my ability to walk 4 days ago when something happened in the back of my knee and left me in pain worse than kidney stone pain, one day after that lost my bowels, developed numb patches on face, started having trouble swallowing, went from walking to unable to walk without a walker and a scooter, and live alone with no family or friends, can you JUST IMAGINE what I’m dealing with right now that they don’t give a darn about.

    I can’t even get myself something to eat out of my own kitchen. All my strength is reserved for the bathroom. All This and NO DOCTOR HAS CARED about all these changes!

    Me fire them? Sorry. I guess I’m venting a bit. I’m tired of falling through the cracks

  7. Bob Schubring at 11:04 am

    Of major concern is Terri’s Point (4). Only those with actual authority to make rules, are able to make rules. What other groups say or think, are opinions, not rules.

    US Attorney General Jeff Sessions issued a three-page memorandum on this very subject, Thursday, to his staff at the Justice Department. Sessions maintains that DOJ cannot operate, if people confuse the opinions and ideas expressed in Guidance Letters, with actual regulations that have the force of law. Sessions also says that a federal agency can only issue rules, if Congress gave it authority to issue those rules. You can read the memo here: https://www.justice.gov/opa/press-release/file/1012271/download

    Exactly the same problem arose, when PROP, a self-appointed group led by Andrew Kolodny, induced the CDC to issue Opioid Prescribing Guidelines. The CDC is a federal agency charged by Congress with the job of collecting data about diseases. The FDA is a federal agency charged by Congress with the job of writing regulations on how medicines are to be made and used. PROP asked the FDA to change the rules on how pain drugs are made and used. The FDA refused many of PROP’s requests. So PROP went to the CDC and asked the CDC to issue the Guidelines. The CDC had no idea what to do about the request, so it set up a committee that Kolodny ran, which wrote the Guidelines in secret, with no input from any actual experts on the use of opioid medicines for pain relief, which is their actual use.

    PROP has no legal authority to tell the Government how to make rules. CDC should never have allowed PROP to take over it’s offices and create these Guidelines. And PROP should stop pretending that states ought to adopt these CDC Guidelines. They’re not factually from the CDC and have no legal authority from CDC. They come from PROP members who entered an office at the CDC and told the people there, what to write. They are the PROP Guidelines, made up by people with financial ties to the malpractice insurance industry. That industry benefits from making malpractice-induced pain seem less of a problem than it truly is, because malpractice insurers want Congress to pass a law, limiting their liability.

  8. Cathy at 10:20 am

    Dr.Lewis,thank you for your wonderful efforts to help. I am caught in a loop I think. My PM Md has refused to allow me out of her practice.How? I asked her this year when she began to forcefully lower my medication to one fourth the dose to please send my reports to 2 other PM doctors. Well,she did alright and they both refused me because of something she wrote in there probably stating that I am “psychologically addicted to my meds” or am going from doctor to doctor “drug seeking”. I have been with her 13 yrs only once leaving with her good will to see a PM doctor who I thouhgth could do back surgery-which he could not on me. This doctor was very happy to give me (2 yrs ago the meds (and more for breathru) but he is one who refused me this year on her records of me -saying that He wouldnt give me my meds and “why dont I go to a Rehab? My husband said to him-what is she supposed to do for pain-he said”I dont know.Shots maybe? Back to the regular PM MD who told me that she would”Dismiss me if I keep asking questions about why she is lowering my meds! So,what now do I do? Im in pain greatly,I live in my bedroom and these doctors are being Mafia Style told to do this to people in chronic pain? What the H is going on? All my best to everyone.

  9. Debra McDonald at 8:42 am

    I went to my pain doctor yesterday. He renewed my meds which I appreciate. He never once askedd.about my arthritis or my back. His nurse took my blood pressure and weighed me. She always asked what pain level i was currerntly I said a 5 but that I have never been below a 4 on my current level of oral meds. My pain doctor never once asked how I was doing.

  10. Terri lewis at 8:28 am

    Pick one place. Start there. It’s a journey until you decide to take control of your choices and make them a desirable destination. It doesn’t really matter how long it takes.

  11. Donna at 8:25 am

    This again is getting patients to keep doing most of the work while in pain or in withdraw. They have been ignored. They’ve already been labeled as opioid use disorder patients for the most part. Sad but true at this point.
    Patients have been on many local news channels, had newspapers tell their stories, they’ve done videos of being denied medicine at pharmacies. They’ve contacted legislators. A Investigative journalist has been to tell everything to the DEA, Governor and Attorney General in Florida.
    Prior to that, I personally organized a state capitol rally and that did nothing. Nothing has worked up to this point and patients are not making any progress. Its been 8 long years and Sadly patients have died advocating.
    It’s too late for more lengthy process.
    Don’t we feel it’s time for the Healthcare Professionals to unite and speak out together to the President and the politicians. They get more respect than citizens.
    Patients have been working on this for the past 8 years.
    Why is it that so- called Dr Andrew Kolondy can get to the President and the politicians but not the Dr Pain Specialists or psychiatrists who see pain patients?
    I think it’s overdue for providers and those are Experts to unite and Go speak to the President and the politicians publicly.
    Otherwise it’s too late.

  12. Jamey Breerwood at 8:23 am

    In 1993 I took a terrible fall helping a Veteran with cancer. I had surgery on my neck and lower back with a hemi lamenectomy. Both surgeries failed as the screws fell out at every level. I saw two neurosurgeons who refused to do surgery with good reason. I also have Crohns, Ankylosing Spondilitis and Fibromyalgia. I have had physical therapy, injections and any conventional treatment. I also suffer from chronic depression and a panic disorder. When Davocet was taken off the market many years ago my Dr. used loritab. I can’t walk, sleep or enjoy a normal life. My Psychiatrist also prescribed Wellbuterrin and Klonopin. I have seen two Pain Management Drs.. Both decided that I needed Percocet. The First one couldn’t give them to me due to the new law and my new one said I need a Spinal Stimulator if I can qualify after my MRI. This would help the excruciating lower back pain but not my neck and upper back pain. He has written to the government and is very proactive for patients like me. I have also written to my Congressman and sent all my medical records to him. He sent them on to the ways and means committee. He said he would get in touch with a reply as soon as he heard something. My doctors have declared me disabled as far back as 1995.. The pharmacy records show that I have never abused the medication. Of course, there are ways they can double check my usage. I don’t know what I will do. I can choose my mental health or physical health. Without either I don’t have quality of life. Patients need to be proactive with the government. I was a very active woman who volunteered and fought local government officials to start Social and Athletic programs for mentally and physically challenged youths. I won! I was a a childbirth educator using my skills to teach and assist teenage pregnant girls. I also ran a youth organization for teens. Many who had problems at home or with drugs and alchohol. Many didn’t. I served as a volunteer for the DARE program. My biggest accomplishment was raising two compassionate, successful children. One is President of a college and the other is a Dental Hygenist. Both are giving loving parents. Each one has successful marriages and good kids. I can’t take my grandchildren anywhere. They must come and see me. It is heartbreaking. I was the cool grandmother but taught them compassion and respect. I desperately need help. I will be out of my pain meds. in 10 days. What else can I do? Someone in this blog please give me advice. Even with pain medication I can’t function but it helps to lessen the pain. Thanks for listening.

  13. William Dorn at 8:19 am

    Why dont the advocates start a class action lawsuit that can be signed online.People in pain are to scattered out to be effective.There must be a lawyer out there affected by pain that would take our case.This should be a human rights violation.Legal action would get the truth out because the media loves stories like that.Our goverment flat does not care.Look at all the scandels are congressmen are in and you think we will get any help from them.They all have their hands in the cookie jar.Dr Tennant needs to use this arrest to get truth out.Turn his case into a movement.This is like the civil rights movement letters to congressmen wont get it done.Dr Tennant millions of us are behind you make your 35 years of helping people start our road to freedom from goverment oppression.GOD BLESS all out there fighting for our rights to live a life without pain.

  14. scott michaels at 7:23 am

    REALLY.. HOW MANY PEOPLE LIVE IN SO. CAL. AND WORK WITH ME TOPICK A DAY TO PROTEST AT KAISER RICERSIDE. I SUGGEST PEOPLE IN ATLANTA GATHER AT THE CDC. FIND OUT WJERE YOUR LOCAL DEA OFFICES ARE AND PICKET THEM. YOU CONT NEED A LOT OF PEOPLE IT WILL GROW. THE WORD MUST.GET.OUT. WE MUST GO AFTER.THE DEA.THEY ARE THE GESTAPO WAR.CRIMINALS HERE NOT.OUR DOCTORS. HOW MANY.LAWS CAN THEY BREAK WITHOUT REPRISAL

  15. Edward Hirsch at 6:53 am

    It is beyond me why the people who suffer from chronic pain are denied access to the medications they need because of the people who abuse these drugs. I have bilateral knee replacements , bilateral hip replacement and my upper torso was crushed by an sub falling on me. I live in horrible pain and the Drs treat us like criminals when we ask for help with the horrible pain we live with. Go after the people bringing the illegal drugs into our country and take care of the people who suffer so .

  16. Terri McFarland at 5:12 am

    Although I believe this is a great idea, it is to many steps and a lot of work for people who are suffering and can’t concentrate. Most are suffering in silence and feel there is no hope. I read story after story of people that are giving up. What we need is our own commission put together with us in mind that will carry our voices to the powers that be. I think a well written informed paper by our people, doctors, and patients is what’s called for and a flood of the media with said paper. Also, doctors must start coming to our aid and stand up to the threat of loss of license as a whole. We also need to rally and get everyone to one site. They are to many and spread out to be effective. Thank you for caring and this article.

  17. Jessica S. at 5:05 am

    What a wonderful article! Thank you so much for writing this and sharing it with the community! This encouragement, support and information is exactly what patients need in these times!

    I personally have already performed most of the steps, currently working on the three I have not. It has been one of the most empowering experiences of my life time, as well as the most saddening due to the ultimate understanding that every trusted physician will not deserve to be trusted! The ones deserving such as Tennant and Christenson, publicly executed without any crime truly committed like in the infamous Salem Witch Trials!

    Like many others, I had a primary care physician who would rather diagnose me with a general chronic back pain condition than actually locate the source to keep his production numbers up and board members happily off his back. The five minutes he would always spend with me, quickly racing out the door, was obviously never spent asking investigative questions to determine underlying illness but the common cold. Denied pain medications on and off again through the years for reasons such as not being able to afford physical therapy or flat out refusing to believe a 5mg Hydrocodone wasn’t adequately treating my pain. The pain eventually became so intense and widespread that being off of pain medications was no longer an option. I fired my doctor, located a new one to boldly explain the fact I was interviewing HIS ability to diagnosis my untreated, unknown illness AND if he could not, his ability to connect me with the proper physician who had the capability to do so! My new physician was shocked but was willing to do his best. However, due to the falsely accused opioid epidemic’s roots, the healthcare provider he worked for would not allow him to prescribe any pain medication whatsoever to chronic pain patients. I would receive a referral to a pain specialist who would give me 30 injections a month just like the last one did, which STILL was not effective.

    This was my turning point. I fired my doctor! I hired a new one! I was fully transparent in my objectives, willing to do any treatment that would possibly help me AND finally find out what was wrong. This was the moment that I knew my healthcare system had failed me, not in the least interested about my quality of life or the one I was providing for my children.

    Becoming angry, I decided to arm myself with knowledge and found Dr. Tennants website with valuable patient resources he had listed for free. While I knew I could not see him because he was literally across the country, I didn’t know that I can learn from him and followed every single step in his guide to what to do when looking for a pain doctor. By following the guide and blessings from God no doubt, I finally found a empathetic specialist who had a true desire to find the cause of my pain. I was diagnosed with Ehlers-Danlos Syndrome literally only months ago. In addition, without my primary care providers help I finally had the test I needed to prove I also had cervical lordosis,two herniated disc, one slipped disc, spinal enthesopathy, borderline cord abutment with central the cal sac effacement, neuropathy, degenerative disc disease, plantar fasciitis, bursitis and even more I cannot list.

    I only listed the mountain of diagnosing madness I received simply for those who are reading this now who are being told that it is all in their head and we can’t find anything wrong. I made a personal decision to push for myself but not only my family because our family members are the ones who suffer with us. Our friends, many lost during our journey, Will be replaced with those who do understand what you are going through by following this list. I cannot tell you the difference in understanding I have received from my peers from a group on Twitter called United Pain Coalition, which I was also blessed enough to see grow from the start. We really do write our congressmen together, discuss our conditions, list treatment that works and does not but most importantly we also work with physicians who are actually for the adequate treatment of the pain we experience and believe in the Hippocratic oath they took. These positions recognize this crisis for exactly what it is. Dr. Tennant for example was used by the DEA and backed from those such as PROP, to only serve as their personal threat to physicians everywhere – who continue to treat palliative care patients like myself, those with intractable pain and chronic pain – their threat saying loud and clear we WILL take life as you know it away from you. Your license and your quality of life, years spent preparing to live their dream will be gone if they choose the side of the patients. It’s not right and if we all follow The advice of Lewis, we as patients can not only help ourselves but help those physicians who need us as well. We all need this and I cannot express my confidence in the outcome if we listen.

    Thank you so much again for this article.

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