Rally Against Pain, Washington DC 10/22/2016

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patients-standing-togetherHOPE TO SEE YOU IN WASHINGTON DC!!!

Guest Post
By Dr. Terri Lewis

Health care is a moving target these days, no matter your age, sex, disability, health care, or economic status.   The best efforts to deliver better health care services to more people at a manageable cost in every state has proven to be a significant challenge in today’s politically charged environment.  Some populations have become expendable, in part because they lack an organized lobby to effectively advocate for and represent their needs.  People with unique health characteristics in every state report increasing difficulties in accessing health care on many levels – physician access, location, network composition, beaurocratic barriers, and access to necessary services.

Almost no group has experienced more difficulty than those who have complex health care needs.  Among these are those who live with conditions associated with chronic and intractable pain.  More than 200 conditions including cancer are associated with pain generation as a byproduct of the associated disease process.  A number of practices have emerged that negatively impact access to care for persons with chronic pain.  They include:

  • The emergence of narrow insurance networks that work actively to reduce health care costs by negotiating reduced prices to physicians and hospitals. The tradeoff here is that reduced cost results in reduced services to fewer patients as fewer providers and hospitals are contracted.
  • Capitation of providers on the plan results when narrow networks force all patients into contracted provider practices who are willing to accept reduced reimbursement levels. This may mean that providers choose who they will service and who they will not serve.  Lengthy wait times may develop for appointments. There is no requirement to maintain a stable of health care contractors that actually matches the needs of the consumers who pay monthly fees for access.  Plan coverage may be limited to geographic areas which limit access to necessary specialties, which in turn creates large out of pocket costs for consumers.
  • Failure to expand Medicaid in 19 states means that large numbers of individuals cannot access local service providers unless they can negotiate for cash. The young and working poor, many of whom are working while disabled or working part time because of their disability, will be victimized by reduced health care access.
  • Some states have passed pain legislation that prevents consumers for paying for pain care services with cash. Where this occurs in areas with unexpanded coverage, it may result in denial of care.
  • Red flags are increasingly being used to reduce access to care for persons with chronic pain. These red flags are being applied to clinicians, pharmacies, and patients alike without concern for the conditions that may surround access to care – characteristics of the service area, the distribution of physicians and physician specialties, and the availability of insurance coverage, etc.
  • In response to the spike in illicit and counterfeit drugs like heroin and fentanyl that have flooded local communities in some sections of the country, the Drug Enforcement Agency has mounted an aggressive campaign against pharmacy distributors, pharmacies and pharmacists, and prescribers who treat chronic pain. Together with changes to state pain laws, this has created conditions where some clinicians have ‘thrown in the towel.’  Clinics have closed, physicians have been arrested or retired, and the patients with complex needs are experiencing rationing. Pain care deserts are developing across some sections of the country.
  • In some cases, patients with chronic pain who have been released from care because of their needs for high dose or multiple schedule III opioids have found themselves unable to replace their pain management program. Once marked and stigmatized because of their needs and characteristics, or the arrest of their clinical provider, the gap in care has become pronounced, disruptive, and in some cases dangerous. Patients have reported that their need for care for their disease demands that they abandon their pain care routine so they can receive services within their local emergency room.  The substitution of opioids with other medications has reduced efficacy and increased abuse and polypharmacy.

In March 2016 the Centers for Disease Control issued guidelines for the management of Chronic Pain intended for use by primary care providers. As anticipated, these guidelines have been adopted by physicians across the board, and incorporated as requirements into state laws and federal agency programs. Insurers have acted unilaterally to reduce access to schedule III medications, by changing their cost tiers, requiring prior approval, or removing them entirely from medication schedules.  Focused on reduced dispensing, state agency contract managers negotiate insurance plans without regard for patient access or impact.

The abdication of scientific, evidence based principles to the care and treatment of persons with chronic conditions has created a crisis with profound implications for healthcare.  The loss of an effective physician-patient working alliance, and the substitution of a relationship framed in fear and suspicion is increasingly unacceptable.

Patients are connecting and organizing in digital space. Across the country they have voiced their concern about the unintended consequences of the War on Drugs and compared their experiences.  The increasing application of forensic procedures for the treatment of chronic pain leaves many feeling victimized by the actions of others.  The loss of effective healthcare strains families, economic resources, and community interactions.

Patients report that their health care costs have increased beyond their ability to manage the costs of care or conversely, their health care has dropped off entirely because physicians do not want to risk their practices. Practices are being evaluated against a design that requires physicians to defend their treatment and dispensing practices based on the characteristics of their patients – which raises all sorts of patient privacy issues.

Overdoses, drug poisonings and suicides are on the rise even as physicians have reduced the number of prescriptions written. In October, the DEA announced their plan to reduce the licensed manufacturing of schedule II medications by 25% based on the reduction of prescriptions issued.  Increasingly, stigma and labeling are becoming the filter by which health care is being delivered to the community level.

Federal agencies have been particularly nonresponsive to the expressed concerns of patients and their families. The comingling of complex problems of addiction, community policing, access to appropriate health care for complex conditions, and policy making has patients and clinical providers alike alarmed.  The US health care system has long abided by the standard that access to treatment for pain is a right, and that each person shall have access to the treatment which “allows them to attain or maintain the highest level of functioning possible.” Many report that reduced access to care has reduced independence and functionality.

Pain management contracts are increasingly used as a weapon for discharge and removal of choice because of the need for pain care. There is no right of recourse for the patient has lost their due process rights when errors are made.  Many other civil and Constitutional rights are being violated causing many patients to remark that receiving pain management services is akin to being placed on probation for a crime they have not committed without due process.

On October 22, 2016, at 10:00 am EST, those who can find their way to the ellipse across from the White House in Washington DC will gather together to give a face to the need for a resolution of this growing problem of care access.  Bring lawn chairs and snacks from 10 am to 5 pm.  Meet with fellow pain patients from across the United States and listen to a range of dynamic speakers from the patient, family, and clinical communities along with advocacy leaders.

PLEASE RSVP ASAP to reserve your spot! All are welcome. Bring family members, caregivers, friends, or others who are interesting in addressing the twin problems of access to adequate pain control and the re-establishment of effective evidence based models of care.

For more information, contact the event coordinator, Lana Kirby at (317) 441-2888.

terri-lewisTerri Lewis, PhD is a rehabilitation and mental health practitioner who has worked in the area of community systems of care for more than 30 years. The daughter and parent of persons with chronic pain care needs, she has developed an active voice that addresses barriers to care, public policy, program evaluation, patient advocacy, and evidence based practices. She teaches rehabilitation practice at the university level for clinical training programs at Southern Illinois University-Carbondale and in Taiwan.

44 thoughts on “Rally Against Pain, Washington DC 10/22/2016

  1. Am desperate for guidance. Seeking a knowledgeable professional to listen to my situatiin and hopefully offer options and prooer channels for me to find treatment. My quality of life is severely diminished and I am at the point of giving up. A person can only endure this for so long!! My name is Nicole. I am located in Ohio. Am pleading for someone to contact me by telephone (typing is quite painful) 330-647-3381. Please. Someone. Help!!!!!!!!

  2. Republicans DEA can kiss their ass good by come next election. Us republicans will vote democrat making chronic pain people suffer.this will not curb the street drug problem.

  3. Oh my God, I’m crying! I’d given up trying to find a place where people, and a doctor, are willing to listen, and not call me a, “drug seeker”. Yes, I bought a gun before my husband retired early to take care of me. His last out of town trip I picked it up. It’s loaded and hidden in my bedroom. I’ve had it in my hand more than once All that stops me is the pain I’d inflict on what’s left of my family. But that’s only good for so much, ya know?.

    I’ll begin at the beginning, as they say.

    At 21 I was having terrible left side pain and pain with intercourse. My Gynecologist was the head of Gynecology at a Cincinnati hospital. He diagnosed me with Endometriosis and said I’d never be able to get pregnant. I’d been on BC pills for 3 years and bad info was coming out about them, so I went off of them. I was the bread winner, my husband had served 4 years in the Navy during VN and was now in college. I immediately became pregnant! Strike one for doctors.

    In my third month I awoke in excruciating pain with vomiting and diarrhea. We drove to a suburban hospital where I was diagnosed with a tubal pregnancy. They told me to drive on into one of the city hospitals where my doc worked. As it turned out, he was at the hospital at 4:00 am making rounds with some residents. He examined me, said it wasn’t a tubal pregnancy, but he admitted to stay for 1 week with bedrest.

    Six months later I delivered a son via NCB. Amazing because neither my Gyn, or any of the staff on duty had even seen a NCB at the “baby hospital”.

    When I was 32 my left side pain increased and I was having low back aches. I was seeing a different Gyn. He did a laparoscopy, said I had massive Endometriosis encasing my left Ovary, some on my right Ovary, my tubes were all scarred and it had bridged from my pelvic bone to my tailbone causing the low back aches. Well, that all made sense to me. I hadn’t used any BC for years and hadn’t been able to get pregnant again. So we decided to end the pain and have a complete hysterectomy at age 32.

    I woke up in ALOT of left side pain. One thing I learned, if you have a procedure done and the doc comes in and says, “I bet you have a lot less pain now?” And you’re response is, “Actually, I’m in more pain.” (Not including the normal post procedure pain you’d expect) At least twice I’ve been in that situation and each time when I say, “No, I’m in more pain”, for a nanno second you can see it flash across their face, then they recover and smile and say something comforting.
    For a year all I could do was lie flat on my back. I’m 5′ 10″ and weighed 135 lbs.at the time. In the year that passed, I was down to 119 lbs.

    I went back to my old GYN who was the head of Gynecology and he said without saying it because he’s a doctor, “Sometimes with a bikini cut there’s a lot of (and he made a two hand motion of back and forth. Lifting layers of tissue back and forth.) And he said sometimes if you’re not very careful the fascia layer can tear. The only thing to do is go back in and make sure everything is correctly placed, I said, “OK.. I need to get straightened up and get back to work.” So I had a hysterectomy redo sort of. Woke up in hell. I couldn’t believe it. I went home, tried to stay up. Then I lost control of my bowel, was just a mess. Went to the ER, on a Friday. An Internist ordered tests. Some hospital staff came in and said their was a spot on my liver and I had liver cancer and walked out. From Friday till Monday evening when I actually met the Internist everybody thought I had liver cancer. It turned out to be a shadow! I was in the hospital for a week with some other tests. Came home was in bed, but the Internist had put me on Bentyl which is for spastic colon. It also relaxes your muscles. At least, it relaxed mine. I drug around for months until a nurse at the Internist’s office mentioned a new thing called a, Pain Clinic. I went there and had to sign a contract to do the exercises they gave me every single day. So I did. They were floor exercises so I could do them.

    During this time my brother was in a private plane crash. In a coma for a week. When the brain swelling goes down that’s usually when you die.. My other brother flew out to see him. My 2 sisters went out to OKC to his funeral. The last time he’d been home, I wasn’t able to go 1 1/2 hours to my mama’s to see him. So it was hard to force myself to do the stupid exercises, but I did them because I’ve always been a hard head.

    I found a book called, “Fibromyalgia” and thought, “Eureka!”. This was around 1990 and was a brand new thing. At least I think it was, but it sounded exactly like me. So I thought that was my problem.

    I got my weight back to normal and was not OK, but was functioning by sheer force of will and Bentyl.

    My backaches had returned and my family doc was an Orthopaedic doc.. He said I can send you to a Neurologist or a Chiropractor. I took the Neurologist. He checked me out said, ” You’re young, you’re thin and I can’t find anything wrong with your spine” Well that felt mentally better.

    I was back to work at a new job. My boss went to a Chiropractor that worked on the Bengals. So he induced me to give the guy a try. I did and he helped me. Said my spine was out of align. Personally, I now tell people to run from Chiropractors unless they know for sure what’s going on in their spine.

    One Friday morning my back was killing me. I figured I could make it through Friday and rest over the weekend. My spine was out of align. WRONG! I made it to work. Made it to my desk and that was it. I had to leave thinking, I’ll be OK by Monday. WRONG! Our corporation was in the middle of being purchased by Europe’s version of P&G, called Beiersdof AG. I couldn’t miss work. I missed work. I never made it back to work. My husband brought my stuff home to me in a box.

    Saw a Neurologist, did an MRI said I had 2 herniated discs. He failed to mention how badly herniated they were. Instead, he did 3 steroid injections and referred me to a PT facility that was 40 minutes from home. I grit my teeth and got myself there 3 X a week. On my last visit I saw my Neurologist walk into the facility. I said, “There’s Dr. ____ I forget his name. The therapist said, “Oh yeah, he owns this place.” Never a good thing!

    I went to a Neurosurgeon. He looked at my MRI and said, “What do they say is wrong with you?” I said, “I have 2 herniated discs.” He said, “You most certainly do have 2 herniated discs! You have the worst herniated disc I’ve ever seen,” My L5/S1 had made a lovely V shape dent half way through my Sciatic nerve. I’m tough, but tough only goes so far. So he scheduled immediate surgery.

    Unfortunately, I was his first surgery of the morning. So the OR, Anesthesiologist everything/one was setup for him to be in that OR at 8:00 am. I was waiting outside the OR door. He was 1 1/2 hours late. I woke up in recovery thinking I’d died and gone to hell. But I’m a Christian so I knew I wasn’t in hell. I had to be someplace worse like RECOVERY! You know how groggy you are after surgery, so I asked the nurse, “Did I have surgery>” She laughed and said, “Oh yeah honey, you had surgery!” My heart just about melted! Both my brothers had spine surgery and didn’t wake up in worse pain.

    The next morning a nice lady doc came in with a big smile and said, “I bet you’re pain feels so much better!” I said, “Actually, my pain is much worse.” I saw it flash across her face. She made a nice recovery and smiled.

    I couldn’t walk. I was having horrific spasms, a weird wave motion would go up my spine. My legs were both just on fire. My left leg starting jerking and flying into space. Then my left shoulder began jerking. I was jerking all over. I went back to him for my normal follow-up visits. Kept telling him something was seriously wrong. His reply was, keep walking. He was apparently deaf and blind because I kept telling him, “I CAN:T WALK” That is just one problem! I kept trying to walk.. I kept asking for an MRI, but he thought it was too soon. Hoping to run out the clock I guess. Finally, eleven months into it he did an MRI. Said everything was fine. I said, “No it isn’t” He referred me to pain mgt. within the hospital group. Mistake! Never stay with the group that doesn’t listen.

    50 minutes from my house to pain mgt. in the city. The PMD was a retired Neurosurgeon. I walked in and his exact words were, “What do you want?” I said, “I don’t know! I’ve never used pain medication other than a few days post surgery. You tell me.” He put me on a Morphine patch with (I think)Hydrocodone for breakthrough pain. And I actually needed the Hydrocodone for breakthrough pain.

    I drugged and drug myself to every Neurologist, Neurosurgeon, Orthopedic Surgeon, you name it I went. Trying to get help and some answers. No answers. ” Sometimes there just isn’t a good outcome” To me that was doctor code for, somebody screwed up, but we’re not saying it!

    I heard about a 6 week extremely expensive pain clinic. I was still employed, though my company had moved to CT, and still insured, so my insurance paid for the clinic. I took drugs and holding my butt off of my car seat I drove the expressway in rush hour traffic and jerked myself there. In short, it was a farce. Everyone was to lay on the floor and relax to relaxing music. I was on the floor jerking, my left leg flying into space disturbing the people actually relaxing. So I got on my stomach, tucked my arms and legs under my chest so I wouldn’t jerk, except my shoulder. The instructor considered this as “relaxed”. We had table time. Everyone sat around a long table with a dr. and talked or listened to him talk. I was jerking. So I sat on my legs and put my head and shoulders on the table. This was considered “able to participate”. We had exercises to do. I couldn’t sit and do them, I couldn’t stand and do them. I did sit on the very front of the stationary bike seat, lean forward as far as I could and peddle. This was considered, “accomplished”.

    There was a tall woman about my age in the class. She had short blond hair, I had long dark hair. Our names were nothing alike, yet they kept mixing up our names and some of her info was mixed in with my chart. So things she could “accomplish” were in my chart. She told me she traveled around to follow auto racing. I asked how she could travel and sit on bleachers for hours. Well, she was just in this thing to get her SS. She even faked an attempted suicide. ER and all. She said she wanted to make sure she got it. You know, you just want to slap some people in the face. In the end the clinic said I could go back to work! They had one more new class and went out of business. Besides all I typed, I had hopes they were really there to help people. But my new employer in CT who had no idea who the heck I was, denied my disability pay. However, I went to my SS hearing and it was awarded on my first attempt. I know some people have to try several times to win it. So, thank God for that!

    At home I was still on the floor, jerking and in pain. There were so many nights I’d start vomiting and spend 24 hours face down on the floor with a pillow under my chest and a bucket puking until I just dry heaved. My husband would come in the next morning and look so pitiful. I felt worse for him.

    One night the pain in my low back seemed to just start growing. I was face down to de-weight my spine and iced it. Nothing helped. I toughed it out till 4:00 am and my husband called the Squad. I hate doting that! I couldn’t move. Went to the nearest hospital and all they could do was give me a pain shot and a muscle relaxer shot. Every time I go to my PMD they ask, “Did you go to the ERl this month?” I tell them, “You know what happens when you go to the ERl? Nothing! They can’t even do an XRay, mush less an MRI. So why does Gov Kasich insist people in dire pain drag themselves to a hospital?” They did say I should call my PMD in the morning. duh!

    I called my PMD at 8:15 am. Left a message. I called him in the afternoon. Left another message. I called him twice a day for 3 days before the receptionist returned my call. On the 4th day I was in to see him. My husband slung my arm around his neck and drug me into the building, laid me on a bench just inside the doors. He went down to sign me in. I stayed on the bench with people coming and going past me. Charming! By then I had drop foot and was numb from my waist down. I was in NO pain. My husband retrieved me when they had called my name. We repeated our dragging process into the elevator and down to his office. I was sitting in the exam room when he walked in. He saw my foot and I guess he thought an MRI was a good idea. duh. “Come back this evening and I’ll do an MRI” Sure, it’s only 50 minutes each way twice today and the MRI machine is right there behind you. Honey drug me out and home. Honey drug back down that evening for an MRI. My son had to drag me back down the next morning to get the results.

    I was sitting in the exam room when my doctor came running down the hall with his hair on fire holding my MRI. “HAZEL” he yells. “Lie down! You’re having surgery today!” Fine, I only needed it 4 days ago. He tells the receptionist to start dialing for a surgeon, any surgeon. OMG, I was holding on by my fingernails! He said he’d found a surgeon. Told my son where to take me. (More travel time. Gotta love it) He drags me to his car and to the unknown surgeon.

    Drags me into a strange office to see a strange surgeon who’s going to work on my spine. Where’s the vomit bucket? He was very nice in a very firm kind of way. He was also totally disgusted to find someone in such a state as I was in. Said I’d be having emergency surgery at 7:00 am. This was just to try to save my leg. No promises my foot would ever recover after so many days of drop foot. And, he’d be doing a second surgery as soon as he could get a 2 level fusion setup.
    Well, can I go home now and get my bucket? My son drug out to the car, drove me home. Gingerly placed me on the floor with a pillow, a towel, a damp washcloth and a bucket.

    Had surgery. Woke up in hell…again. But this doctor was so caring, so compassionate. And his assistant was just the greatest. When I woke up Doug, the assistant, was leaning over me in recovery. He leaned in and whispered in my ear, “You are one lucky lady” Lucky the disc didn’t rupture all over the place. This surgeon said he had found a large piece of calcified disc matter. It had sharp edges and extended sharp points. He’d never seen anything like it. Why was I not surprised? I asked if that could have been causing my “mystery” pain the past 3 long years post my original surgery. He looked very sympathetic and shook his head YES!

    I went home to a hospital bed where the disc promptly re-herniated. I was in bed 3 months waiting to get the fusion scheduled. No promises, but I loved and trusted my new surgeon. His office was nothing like my old guy. Speaking of my old guy. I sent for the MRI I’d forced him to do. Oh, the MRI Tech reported seeing a chunk of disc matter in my spine. My surgeon, naturally, disagreed. The PMD he’d referred me to who was in the same system. He could read all of my surgeon’s notes, he could read the MRI report. Both doctors knew a chunk of disc was floating around in my spine. Never stay within the same group. My personal opinion.

    Had the fusion, but was still in pain and pretty much reconciled myself that the nerve was shot and this was it. A year later I had the hardware removed hoping it might alleviate some pain, but it didn’t. I did feel about a pound lighter. When I woke up in recovery this time Doug was leaning over me again. He leaned in and whispered, “I have a something for you” He handed me a plastic sample jar full of nuts, bolts, rods, huge screws and other bits of fusion titanium.

    Good news is my foot came back enough for me since I can’t walk that much anyway. My pain is uncontrollable.

    What’s life without more bad news? I spent the entire summer of 2012 in my bedroom or on the family room floor at night with my husband. Labor Day weekend and so frustrated and fed up. It was Saturday night around midnight. My husband got up and went to the back of the house getting ready for bed. Another summer gone, vanished, disappeared and I hadn’t even seen it. There was a big, beautiful full moon. I thought, “I’m at least going outside and looking up at that beautiful moon!” I got up off the floor, walked out my front door. I always step out on my right foot since the left leg is weak. So, I stuck my right foot out to step on the first step and my bad left leg just disappeared from beneath me. It propelled me head first off of the porch where my head was going to splatter all over a stone sidewalk. You know how you see an accident coming your way and your brain, in a split second says, you have 3 seconds to fix this? It was my brains or whatever I could maneuver into given 1 second, 2 seconds, on 3 you’re going to land one way or another. I righted myself so I saved my brains, but landed square on my right foot which immediately made loud cracking and crunching sounds as it collapsed. Rapidly followed by my left foot landing square on the stone making the same sounds to a lesser degree and collapsing sending my face forward with my right arm stuck out to take the brunt of the rest of my plummet to the stone.

    I couldn’t get up. I couldn’t move because my good foot was flopping back and forth like a dead fish. I called to my husband. He was in the back of the house going to bed. Every time I shouted, the pain was excruciating. I tried going up the steps on my elbows and knees. Hey, never say die. Nothing doing. I’d broken my right wrist as a kid so it was arthritic and I landed on it stoving it up. I had one good hand, a big mouth and not a foot to stand on. I tried calling to my husband a couple more times. Nothing. If he closed the bedroom door, I’d be outside all night. I had one good shout left and I knew it had be a good one. It was. He came to the door, walked out, looked down at me and through his arms in the air, then behind his head and just walked around looking up at the sky saying “I can’t believe it!”. Over and over mixed in with a few “Oh Haze” and “Oh God”. I felt just terrible for him. He called the Squad.

    So I was trying to hold my right foot with my right stoved up hand, and not move my left foot. The Squad came, loaded me on the gurney, rolled it across my bumpy stone sidewalk with me sucking air. I couldn’t talk enough to tell them nothing was holding my right foot on except soft tissue. It was a brutal ride to the Squad. They put a brace on inside the Squad and that helped…a little.

    The XRAY Tech didn’t understand that a foot will not stand in place without any bones. Every bone in my right ankle was shattered, my left ankle was broke and some bones in my right foot. It’s Labor Day weekend. Start calling around for A surgeon. It’s a sinking feeling when your future depends on A surgeon Again.

    At 4:00 am, my usual emergency surgery time, I rolled into the ER. Woke up with casts from my ankles halfway up my femur. Happy Labor Day! I didn’t even see the stupid full moon!

    I was blessed to get a wonderful surgeon. I was the only patient in the recovery room. There was one nurse. I was in so much pain I couldn’t breathe. I honestly thought I was going to have a heart attack I was heaving so hard to breathe. I told the nurse I was supposed to have more pain control. She was very hateful and just said no. It became harder and harder for me to breathe. Far off in the distance I saw a person. I think it was a man and he was watching me. I thought maybe he was my Anesthesiologist. He must have been because he finally told the nurse to give me something. I thought, “I don’t know who you are, but God bless you!” I think she’d have let me die.

    When I was settled in my room my upper legs were hurting worse than my ankles. My right ankle had an incision from below the ankle bone up the inside and outside of my leg about halfway up. It was reconstructed with what else, titanium. Left ankle was just set with a cast just slightly shorter than my right.

    It’s like, Oh God! Here I am with casts on both legs and all I’m worried about is my spine. I knew I’d done something because both my upper thighs were just in balls of spasms. They hurt worse than my ankles, or wrist. My sister kept saying, “Don’t you think you should have an MRI while you’re here?” I just couldn’t even face it. Now, 2016, even though I’ve been in bed, L3/4 is down both legs. I knew I did it when I hit the stone. Just couldn’t face one more thing. I’ll stand all I can stand before ever going through surgery again, and no doctor would probably touch me anyway. I’ll just opt out if necessary.

    OH State law, if you are “non-weight bearing” you automatically lose your rights and are treated like cattle being shipped off to the yards. You go to a nursing home! No ifs, ands or buts!. So my husband went in search of a nursing home. I said I’m not going. He said it’s nice. I don’t care! I’m not going to a nursing home! I used to go visit seniors in nursing homes and it was horrible. But, at this point, the State controls your life. So I was bundled up into the Squad and taken to the nursing home.

    They don’t tell you all of the goals you must meet before THEY will set you free. Oh no, they see Medicare DOLLAR SIGNS. They said, “You’ll be here 6 weeks.” I said, “No I won’t” “Oh yes, it take that long for you to meet all your goals”

    They won’t tell your ALL your goals at once so you can work on them. They say you need to learn to transfer from bed to wheelchair and back. OK, that’s done. Now I’m going home. NO You have to learn to transfer from wheelchair to shower stool without touching the ground and without getting your casts wet. OK, that’s done. Why not incorporate that with my first “learning to transfer” in the first place? NO, you have to go down to PT in a day or two!. How much PT can there be? Turns out very little. Just burning up days in a nursing home billing Medicare out the wazoo.

    Had to do this and that. I did it all I’m going home! NO, we didn’t mention State law requires a handicap ramp! That’s info that would have been useful from day ONE! My husband’s running around with his hair on fire again, trying to figure out the best way/place at our home for a handicap ramp. He comes back and says, “I can build one faster and cheaper than we can get one to the house” So he did. Now I’m going home! NO the State or somebody has to inspect it.

    While all this is going on the nursing home, not known for much compassion, is in control of my pain meds. It’s the nightmare we all should know about and fear! They bring your meds, so you assume they’ll bring them on time the next time they’re due. NO, they bring them one time, 4 hours later they don’t bring them. You’re in hell fire and brimstone! They bring them 3 hours late. Go on down the floor which takes about an hour. Technically, your meds are now due. Never mind you got them 3 hours late. The nurse comes in and wants me to take my entire round of meds 1 hour after she just gave them to me. By law they’re required to give you your meds. I said, “I’m not taking a round of meds an hour after you just gave me a round of meds just so you don’t have to make a trip back to my room in 3 hours!” I will shoot myself in the head before EVER going to a nursing home.

    I was supposed to be in 6 weeks, I was out in 2. Soon as my ramp was up, I was gone.
    When I got home, 2 young women showed up. They’re there to inspect my house! You have zero rights, zero privacy. The State owns you! They were nice, of course, but snooped through my house, out my back door to my deck, checked my ramp AGAIN. If my house should catch fire I could fling the sliding door open, roll onto the deck which is 1 foot off of the ground and roll right off the deck. Beats burning to death.

    They decided my home was clean, I could freely wheel my wheelchair throughout as I have wide open doorways. I could reach my kitchen sink. Wheel into and out of my bathroom. My third hospital bed was in the family room with easy access and my ears were clean!

    No wonder our Federal Gov. is bankrupt!

    The very worst is having them in control of your meds. The State allows them to deliver your meds 3 hours late, then tell you to take them again in 1 hour. Incredible!

    Since 2012 I’ve been completely in bed. I made it to ankle therapy about 6 times. I couldn’t do most of the exercises because of my back and left leg. Between my right ankle and left leg, I guess I don’t have a leg to stand on.

    I’ve voted for Governor Kasich since whatever he first ran for in the State. I can’t remember. I even had my husband help get to the polls in November of 2012 to vote for him from my wheelchair. But, my God, he has robbed me of what tiny, miniscule crumb of life I had.

    My mother was a severe diabetic and she had sky high BP. Sky high and uncontrollable. She’s gone now, my brother’s death caused her to have a heart attack. I didn’t get to say goodbye to her either. But I’ve often wondered, what would the State do if suddenly the illegal drug industry found a way to incorporate Insulin or any of the BP medications into a street drug. Or combine Insulin or BP meds with some other drugs to create a potent, high end, in demand street drug. Would Governor Kasich take control of Insulin? Would he take control of all the blood pressure meds? Who knows? I’m supposed to be taking blood pressure medication and cholesterol medication. I can’t get to my family doctor. She’s been my doc for over 25 years, but if you don’t go in, at some point they have to drop you. Last time I saw her I was pre-diabetic. I made it in for blood work, back to see her, back to the lab for blood work, back to my PMD, back to see her. I missed my annual dental cleaning the end of 2011. I got in after my casts were off. Dentist said I needed to see a Periodontist. Made it in for that. Paid $450 for a CT Scan and deposit on pin hole surgery. Couldn’t make it back. Blew $450. and my pain and suffering to get in there for nothing. Now I’ll lose my teeth. You know, your teeth are ok, but your gums gotta go. It’s impossible to do what you need to do. It becomes the snowball affect.

    I haven’t seen my grandsons in over 2 years. The youngest I saw when he was a few days old at my house. He’s 2 1/2 and I haven’t seen him since. Our dearest friend’s of over 30 years. He lost a 4 year battle with colon cancer. They’ve come to see me in hospitals multiple times, the nursing home, brought food to my home. He sat with me when he thought he was coming down with the flu. My husband was having major surgery to remove a tumor near his heart. Except for our friend, I would have been alone all day. He wouldn’t leave until my husband was out of recovery and in a room. Our friend was looking worse as the day went on, but wouldn’t leave. It was Christmastime. He was diagnosed with cancer. I couldn’t even go to his funeral. He was buried 7 minutes from my house. I couldn’t even make it 7 minutes to the cemetery for his internment.

    Three weeks after his death, his wife, my dearest friend, was diagnosed with 2 cancerous lumps in one breast. Now she’s going through chemo, lost all her hair. All the things she did for me multiple times. I can’t do one thing for her.

    I saw my useless PMD last week. Well, I didn’t see mine. I was surprised to have the dr. I didn’t choose waylay me into an exam room where he once again wasted my time pushing a spinal stimulator. Then he made me walk around the building to see a new addition they’ve put on specifically for spinal stimulator trials, steroid injections and fusion pumps. I can barely walk, could care less about his addition, but all he can think of is $$. These guys I see are absolute money grubbers. When my doc left the practice, I tried to change to a different practice. No doctors here will accept you if you’ve been on, are on opiates. So why are they in pain management? If I let a dog suffer the way they let people suffer, I’d be arrested! They’re terrified of the Stalinistic State.

    Guess I said more than necessary. Probably have a hundred typos. I can’t see squat with my current old reading glasses. So apologies for the length, rambling and typos. Normally, I’d go back and edit and correct, can’t manage it.

    I’m so thankful I found at least one website, one doctor who’s trying to help us. Where are all the pain patients? They can’t go to Columbus and shed tears. They shed their tears in private and all alone.

    God bless you!

    PS: I saved all the cervical crap for another time. What good are friends if you can’t us them?
    7:13 am. Goodnight!

  4. https://www.statnews.com/2016/10/19/insurers-patients-preexisting-conditions/?s_campaign=fb&utm_content=buffer04457&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer

    DISCRIMINATION IN HEALTHCARE BASED ON DISABILITY IS A CIVIL RIGHTS VIOLATION UNDER SECTION 1557 OF ACA, CAPTURING BOTH REHABILITATION ACT PROVISIONS UNDER SECTION 504, AND ADA TITLE II ACCESS TO PROGRAMS AND SERVICES. USDOJ HAS INTERPRETED COVERAGE UNDER PROGRAMS AND SERVICES TO ADDRESS ANY PARTY TO PUBLIC MONIES.

  5. My letter to CDC

    “Dear Members;

    As a physician I treat people experiencing chronic intractable pain each and every day. The War on Drugs has failed dismally. It’s now become a war on people – vulnerable people. Patients have come to be viewed as criminals.

    There are 100 million Americans in chronic pain – one third of the US population (33%). Chronic pain impacts more Americans than cancer, diabetes and heart disease collectively. Financially speaking, estimates state pain cost our nation between $560 and $635 Billion dollars annually; not just in healthcare costs, but in lost wages, decreased productivity when at work, and in disability pay. Think about what our country could do with that amount of money if we addressed this monster of pain.

    Pain is either here, or its coming for you. It proves best that we all get real curious about this issue, so we may find relief when our time comes. Pain is a bully. We don’t need more bullying. We need boundaries. We must realize that invasive procedures, injections, and the use of high-risk non-opioid therapies have their consequences also. Every action has a reaction.

    It’s like this: It’s nice when we can manage diabetes without insulin. The sickest diabetics however require as much insulin as they require; starting an insulin-free endocrinology clinic would be absurd, so would interrupting car sales because automobile crashes have gone through the roof since 1905. With one-hundred-million people in pain and six million addicted to pain pills, that is a low six percent addiction rate. We treat diabetes against worse odds, hypertension too. We all have 100% chance of dying. I still choose to invest my time and my care to improve the quality of life for those experiencing chronic pain. I am interested in progress, not perfection. We ‘practice’ medicine. It’s trial and error. We continually learn from practicing.

    The decade of treating chronic pain has passed and a complication of treating chronic pain adequately has resulted. Approximately 16,000 patients per year die due to prescription drug overdose; .0001% of our population. These are not pain patients. These are people who obtained these medications illegally. Many of these pills are in fact counterfeit and imported into our country having nothing to do with doctors legitimate and legal prescribing habits.

    I understand your mission is to raise awareness of the issue of prescription drug abuse, partner with legislators to craft achievable solutions, and serve as a resource for policymakers and the media. My idea would certainly curtail prescription drug abuse. It would require a marker which can be detected in toxicology studies be placed on all manufactured pain pills and use that identifier to trace prescriptions. We have the technology to do this, we just don’t have the political will. We track everything: Ebola, Zika virus, tuberculosis and HIV. Our country uses fingerprints, VIN numbers, bullet rifling patterns, and even lot numbers on food and other items. We can certainly trace our prescriptions from sources. Let’s track pain pills. Why not? This is now a murder investigation, is it not? We trace bullets and other fingerprints. Let’s give a fingerprint to every pharmaceutical, and let’s declare the War on Drugs over. It. Has. Failed. It has failed every party it was intended to aide.

    I am wakened from sleep with recurrent conversations in my head: Agencies, regulators, bureaucrats, “What’s your oath”? Don’t they know about “do no harm”? The ethical code to never discriminate against my patients? Is there some idea that patients are criminals and, even if they are, that I, as a physician, should not do my best to treat them? Or by doing so that I am some kind of criminal for treating whomever comes to me with a need for compassionate care? I work for a higher power. Love ’em all and let God sort ’em out.

    The answer is not more regulations making the relationship between doctor and patient one of a police state with me testing bodily fluids to see if they’re telling me the truth. My relationship with my patients is to be one built upon trust. Requiring pharmaceutical manufacturers to place a code or marker on pills so we can then trace where illegal users of opioid medications puts the onus on law enforcement where it belongs, not on doctors or even pharmacists who are to be health care professionals, not health police.

    I look forward to working with you to address this matter together.

    Warm Regards,

    Mark Ibsen, M.D.”

  6. The CDC Guideline for the Use of Opioids in the Treatment of Chronic Pain states, that in the case of a sickle cell anemia patient in a pain crises, NIH (National Institute of Health) treatment guidelines must be followed.

    The NIH guidelines specifically require the use of narcotic pain medications, oxygen and hydration.

    Most sickle cell anemia patients are African American and are considered drug seekers because of racism and chronic pain patient bigotry.

    So, physicians, because of their own prejudices, will not give narcotics in adequate doses to sickle cell anemia patients in a pain crises.

    Since the CDC guidelines are being used to deny patients proper treatment, it continues to lead to an increased morbidity and mortality rate amongst African American sickle cell anemia patients.

    Sickle cell anemia patients are dying way too early.

  7. Terri Lewis,

    Thank you for helping explain what so many of us have to deal with as chronic pain patients. I don’t know what happened in1998 and 2005, per a previous commenter, but I do know that every time there is a death involving a drug, it becomes more difficult for chronic pain patients to get adequate pain relief.

    It doesn’t seem to make any difference whether the drugs killing people are prescribed by medical providers or manufactured in China, there’s still a reaction against opioid pain medications. The nonsensical responses to these issues speak of illegitimate representation in the CDC where conflict of interest rules the day. The Surgeon General has his own personal agenda for which he promotes the bogus “opioid epidemic”.

    The end result is always the same. Chronic pain patients pay for the actions of others. Until the right to adequate pain relief is restored to those of us who require it, discrimination of chronic pain patients is all you can call what’s taking place in this country.

  8. I would add a couple of points to this discussion, if I may.

    I personally do not regard the American Pain Society as a particularly visible of effective lobby on behalf of pain patients, despite their self-proclaimed status as the largest US organization by membership, concerned with pain issues. A few months ago I distributed an inquiry in 20-odd Facebook groups with an aggregate membership of over 14,000 people, asking if anyone had heard of APS or its work. I heard back from a couple of APS “Ambassadors”. But other than those two, the response from pain patients themselves was remarkably quiet. Few had heard of APS. Given that the organization claims representing pain patients as its reason for existence, this might signal that perhaps APS doesn’t seem to be making themselves well known to the people they want to serve.

    I also suggest that a large part of the difficulties which pain patients now experience — and will continue to experience absent a major change of approach within our government — is that the political appointees of the previous two Administrations have been a uniform disaster for us. The Surgeon General is only one of several prominent examples. He has no professional training in pain management and little or no record of actual medical practice with patients. But he has seen fit to circulate an extremely damaging and scientifically ill founded letter to every MD in America, advocating for the unilateral denial of opioid medications to people who desperately need them in order to have any quality of life at all. He thus adds insult to the injury done by the recent restrictive CDC Guidelines on prescription of opioids to adult non-cancer chronic pain patients.

    There are an estimated 115 million chronic pain patients in America. In any given year, approximately 20 million Americans will be prescribed an opiod medication — the large majority for a few days following surgery or injury. Approximately 2.8 to 3.4 million are prescribed opiate medications for longer than 90 days as one element of their on-going care plan for otherwise intractable pain when all other therapies have abjectly failed.

    The Surgeon General’s letter and the CDC practice standards comprise a de facto war against these people, even if undeclared. Both need to be immediately repealed.

    1. The government and numerous professional organizations like the APS- acted as if they had a property right to do with our pain as they pleased-and of course that diminished the rights and capacity of people in pain and here we are today protesting their presumptuousness and their carelessness towards our natural right to pain relief. They do not recognize that we have such a natural right to pain relief- for they continue to underdiagnose, misdiagnose, and undertreat pain. They are far removed from the voice and needs of people in pain
      Their efforts, instead of creating a more perfect union have siloed people in pain and added greatly to a sense of hopelessness and helplessness.. They did not wish people in pain to be in control of pain care- for they wanted to be in control of their care. And negligent entrustment has resulted and with it a continuing escalation of failure in pain care- with more costly care, much more burdensome care and no real progress in pain care effectiveness- so the symptom burden of pain has remained too high. Quite frankly, I do not see evidence they believe in humanistic values and their values cannot be squared with necessitarianism, prioritarianism or capabilities model of health justice. I don’t believe they give sufficient consideration to the moral aspects of care as they are so focused on the economics and technical aspects of care.
      So we have a self-referential, involutional pain care system that has become too inhumane and too ineffective to tolerate. No doubt the powers that be in pain care will deny, deny, and deny our claims But the foundation for their practices and beliefs is little more then a house of cards- and I for one like to see health care and pain care built on a much more solid and humane foundation.
      Lets end the “reign of witches” as Jefferson wrote and restore right reason, and civility to pain care in America.

      1. “Lets end the “reign of witches” as Jefferson wrote and restore right reason, and civility to pain care in America.”
        Here , here, I second the motion!
        Thank you for a great comment dave!

    2. Great comment Richard, add FDA and AG and there you are…it IS a war against pain patients and their doctors. Enough already. They are stone deaf in regards to pain and pain patients, even though we know there are hundreds of know painful conditions that plague humanity.

    3. It is unfair to portray the American Pain Society in this manner. APS is not an organization that claims to represent patients — it is in an organization of medical professionals focused on research, which is plainly stated on their website:

      “The American Pain Society is a multidisciplinary community that brings together a diverse group of scientists, clinicians, and other professionals to increase the knowledge of pain and transform public policy and clinical practice to reduce pain-related suffering.”

      I think you’ve confused APS with another organization.

  9. Dear Terri , Thank you for writing such an honest appraisal of the “state of Pain -Care in America-2016.
    Thank you Dr. Fudin for posting this timely and accurate article! We have all grown tired of jacked up, erroneous statistics, old Soviet State style media reporting campaigns (last time I checked we aren’t the Soviet Union?) This war on decent doctors and patients has got to stop. We are tired of being guilty until proven innocent because we have pain. We are tired of the disdainful looks and whispers every time we go to the pharmacy.
    Let those with addiction issues get meaningful treatment, and let those with painful conditions get equally meaningful treatment. Why is this so difficult to understand? It doesn’t have to be either/ or.

    I guess I’m a little extra annoyed by all this because my son was just diagnosed with Arachnoiditis from a badly placed Epidural Steroidal injection, while trying to avoid using medications for his pain, caused by a tumor removal from his ribs that left him with Intercostal Neuralgia. I guess looking back he’d probably choose THAT over ARACHNOIDITIS….but who knew??????
    Now there’s a budding epidemic worth looking into!
    There is a place for skilled medical/medicine pain management.
    AND yes we tried everything under the sun alternatively, but with ARACHNOIDITIS the pain is 24/7, and they quickly go downhill from cardio-endocrine stress.
    Did you hear that APS- cardio-endocrine signs that show pain. There are ways to measure it’s intensity and reality.
    So THANK YOU, Dr. Terri Lewis and Dr. Fudin for caring! We need you! !

  10. How timely, Please meet Joan who is a two time survivor of the fungal meningitis outbreak. Why this woman didn’t die is beyond me. She’s tough as nails and battling the chronic pain that she was awarded for her survivorship. Are we really so full of ourselves that we would tell this woman that she is NOT an expert in her own pain experience? She’s working hard for wellness in a system with a deck that is stacked against recovery.
    —–
    Medical treatment has become so inadequate and frustrating. I have been having a lot of neurological problems, especially since March of this year. I went to my previous neurologist at St. Thomas (used to really like him). His office takes 1-2 days to call me back and does not always have an answer I need. He did a nerve test Aug 25 and I did not receive the results. I got the $40 bill for it, but did not pay it because he had not given me results. (My insurance had already paid their part.) Got an automatic call in August from St. Thomas saying my bill was past due. I called Dr. Fallis’ office and (as always) had to leave a voice message. Received a call back (more than 24 hours later). I asked her to mail me the results or I would not pay the bill. I finally received the test results a few days later.

    By then I had gone to another neurologist at Skyline. (I had made the appointment much earlier as a backup plan. I had to wait 6 weeks for the appointment.) I arrived for my appointment on time and there were only three other people in the waiting room. However I had to wait 55 minutes before the doctor came in the room to see me! Needless to say, I was upset. She/the (nice) doctor talked with me, then did a simple nerve test (with something that looked like a tooth pick) and felt I had neuropathy, so sent a prescription to my drug store. The medicine made me sick and gave me explosive diarrhea. So, she then called in a different prescription. After I took one of the pills, I read everything in the printout sheet and discovered it is for depression. I was so upset because I had never once indicated that I am depressed. I even Googled it and nowhere did either say it is also for neuropathy. The next morning I had stomach cramps and diarrhea, so that one wouldn’t work anyhow. When I called the office, an employee said she would talk to the doctor. (The doctor does not have a lot of office hours because she is used by the hospital some days every week to make calls on hospital patients.) Anyhow, when I was called back, she said the doctor wanted me to come in again. I told her I had already spent over $80 ($40 office visit + $40 for first prescription and almost $10 for the second) without any success. She then went on and on and I finally said, “Let me put it this way, I am not interested, thank you, goodbye”. (I figured the doctor would say I should give the medicine some time to get used to it. It affected me so much that I could not do that.)

    So, I went online and Googled “neurologists/Nashville, TN” and then looked at their ratings. It seems that a lot of Oriental people have become neurologists here. Since I have a lot of trouble understanding people who do not have English as the first language, someone with an accent would not work for me (no prejudice otherwise). I don’t really want to go to Vanderbilt (because of the parking issue), but one of their doctors (Thomas Davis) had a great rating of 4.5 and another (Anne Duffy) had a very good rating of 4. I called the number. Dr. Thomas Davis is not taking any new patients (although his online picture looks like he is not very old). So, I asked to make one for Dr. Anne Duffy. Well, their clinic only makes appointment when they get a referral from a primary care doctor. So, I went to my primary care doctor on Oct 10 and he said he would send in a referral. (I took a printed sheet of all my pain areas and problems—see below list.) Today (8 days later) I called the neurologists office. She said there is a 7-14 day wait period for them to review what is submitted and decide if they will take a person as a client. Can you believe that?!

    I have shooting pain at different parts of my body, usually sharp and do not last long. Also:

    · For over seven (7) months, the area behind/above my first two toes on my right foot has been and still is numb. For several months (since Feb.) my right ankle and foot were swollen. Now it is only occasionally swollen a little, but the numbness is very annoying.

    · My left foot and ankle were swollen for a few months. In September my left knee, lower leg and foot were numb. They are almost better now, but I still have a lot of pain in the knee.

    · I have random, short shots of pain in different parts of my body each day

    · I have random itchy places in different parts of my body each day

    · For a few years it sometimes felt like the outside of my left foot was burned, but there was never a sign of anything. Same thing with the outside of my right hand.

    · Also for a few years the inside of my right foot was sometimes very itchy, but no rash.

    · The crown of my head has been itchy since Oct 2013 (and still is), but that was due to spinal meningitis/swelling of my brain.

    I actually have PAIN from my neck (right side) down to my right toes, especially:

    1. The back of my neck on the right side since 2013 (maybe arachnoiditis)

    2. My back between my shoulder blades. I had serious back surgery last Oct 7, 2015 (7 hours) where bone was replaced by metal rods by Dr. Babat at Skyline. It REALLY messed up my balance and life. I have fallen numerous times because of balance issues, hurting both knees. It feels like there is something heavy between my shoulder blades, but the x-ray shows nothing, according to Dr. Babat. It is NOT ok! Something is wrong.

    3. Both hips hurt pretty bad when I walk.

    4. Right sciatic nerve has been killing me for over 4 months!

    5. Right and now left hip (bursitis)–especially hurts when I walk.

    6. Left knee (hurt really badly the end of February when I fell with bottom of leg under me) I sometimes have sharp pains now that shoot through the inside of it. It is also still weak. My doctor says it is bursitis, but a steroid shot did not help (except to help me gain weight).

    7. My tail bone hurts a lot. It especially hurts when I am sitting. I broke it over 30 years ago, then the pain became worse after spinal meningitis.

    8. My right thumb is very painful. Surgery many years ago did not fix it.

    I understand why people get upset and very frustrated.

    1. Joan’s story is a prime example of what is wrong with our system of pain care. Her medical history prior to receiving contaminated compounded injections indicated that she was a candidate for rehabilitative practices to improve her ADLs and reduce her pain. Instead, she was forwarded to the quick fix – an ESI reimbursed at rates far higher than physical or occupational therapy. The quick fix subjected this 70 year old woman to a dishonest system broker who had cut every corner in health care delivery because cost savings to the institution were more important than patient safety. Hundreds of thousands of dollars later, after two life challenging rounds of fungal meningitis, Joan is left to deal with the aftermath of her care in a broken system that cannot and will not deliver to her the support she needs now. Why? BECAUSE SHE HAS CHRONIC PAIN.

      Joan is an expert on what happened to her. She has educated herself about her illness and her injuries. It is outrageous that we as experts would presume to dismiss her experience, her knowledge, because we as the experts ‘know better than she does’ – clearly our expertise has failed Joan exactly like it is failing patients every day. Every day our boarded and licensed ‘expertise in pain care’ adds to the body count of injury and harm. Rather than operating from an evidence based system of care, we are operating from a reimbursement based system of intervention – patients get what we are reimbursed for, not what scientific evidence tells us will benefit them.

      Time to change the paradigm.

  11. Lee Kral,
    You are correct – we need every method available to deal with the problems of chronic pain. But the bottom line is this – We have major systemic issues to address for existing patients who rely on opiates because there are no systems of care – like palliation, prevention, etc. Our entire care system needs a major overhaul. How long is it going to take us to address this?
    Throwing the babies out with the bathwater is causing great harm to people who are not represented in the conversation at large. Favoring one sector of the health care economy over another has caused the entire system harm.
    Personally? I am not pro-opiate. I am pro-continuum of care. I am pro open discussion without the burden of political agendas. I am pro developing the evidence to have an intelligent meaningful conversation that has a chance of making a difference. If we cannot speak openly about the problems before us, we cannot get to solutions.
    More importantly, patients have voices – their voice have something to teach us. Their voice has been drowned out by professionals, insurance companies, and politicians. Possibly we might learn something if we listened.
    I agree that the liberal application of opioids in the last 2 decades has not reduced the incidence of chronic pain, but has been a key player in the role of overdose and death. I observe over and over again that our ability to understand this issue is confounded by additional factors – professionals who don’t know how to prescribe, polypharmacy, and a profound lack of understanding of the various types of chronic and intractable pain visited upon the population.
    You are correct that is is important to move injured people to achievable action – but we haven’t figured out what that is yet. And personally, I’ve never seen a single case of adhesive arachnoiditis respond to meditation. Somebody tell those glial cells to take a hike.
    How long should we deny the use of palliative tools? How long are they to wait while we stand n the sidelines and tell them to stop complaining about how nobody understands their pain? Is this a better life defined by our standards or theirs?
    I invite you to participate actively – just as we would suggest that patients have to get involved in their own outcomes, we as professionals need to get involved in listening to affected persons.
    It’s not my rally. This rally belongs to persons who are living with pain that has seriously undermined their daily lives. I feel certain they will be speaking together about a long laundry list of issues.
    But they will be speaking.
    I’m glad this is generating a response. Good for you folks who are concerned.

    1. I can sense an undertone here by some commentators that represents the naturalistic fallacy and status quo bias that organized interests and professionals in pain care often use to dismiss those that are discontented with the pain care they receive. After all, people in pain are not seen as qualified to have an opinion about their care and studies show us that our education system is poor when it comes to critical thinking skills and no professional is required to engage in reflective practices. And this orientation has been a great disservice to people in pain and our Nation, as well. As Jefferson wrote, dependence breeds subservience and makes men ripe for the designs of others.So it is unfortunate that we’ve come to this point today where too many organizations and professionals don’t seem to appreciate why people in pain are discontented. They dissociate themselves from any responsibility for our pain care system outside of what the law and regulations require of them and those have a “low theory” of the good- far too inadequate to meet the needs of people in pain. But I must be mistaken, for I am not a regulator or have training in pain care- so I don’t stand in the light of nature-I must be stuck in Plato’s cave like people in pain. So much for hubris syndrome of pain care in America. Its unfortunate that professionals and organizations believe a good pain care system revolves around their beliefs and practices that people in pain just need to show up at their offices and follow their programs.
      It is a challenge for some organizations to imagine that things might be much different or much better for people in pain- for that would raise issues with psychological dissonance- and that would raise anxiety about fundamental values and cherished assumptions about how organizations and professionals conduct themselves. And they don’t want to go there- even if going there meant opening up the possibility for a better vision and better care for people in pain.

    2. Thank you Dr Lewis.
      I am pro- physician/patient relationship.
      I have distinguished the term: “opiate refugee”
      To shed light on the discriminatory nature of patient abandonment
      In violation of the Hippocratic Oath and all things compassionate.
      This is a Human rights violation happening right under our noses.

  12. Dr. Coleman,
    Let me respond to your observations. I thank you for comments.
    First I acknowledge that there are many organizations of all kinds that represent physicians, pharmacists, allied health professionals, and patients with all kinds of approaches. They are doing valuable and necessary work. I readily acknowledge that they make every effort to address the needs of a wide variety of issues.
    But many persons with chronic and intractable pain of all types – experienced by the majority of men and women on the street – are neither organized nor in any position to access many of these groups. And they are the majority of pain patients, not the minority.
    Many are newly injured by illness, accidents and medical harm. They congregate in social media platforms by the thousands searching for information and hungry for education about their injuries, direction to services, and health care supports. These folks are not organized, they are not represented by funded entities, and in many cases they are just hanging on by their fingernails. They don’t know or care about big pharma and support to organizations supported by drug funding. The reality is that there are hundreds of unfunded volunteers who themselves are injured working hard to find these folks, provide education, and direct them to experienced local resources. These are the people that big pharma refuses to acknowledge, the voices that FDA and CDC have ignored, and that larger organizations cannot reach due to in part, enormous layers of beaurocacy and conflicts of interest.
    While the medical industry may rightfully herald the decade of pain control and research, we haven’t made as much progress as we need to. Pain patients are still injured and more are entering the stream of medically needy on a daily basis. Pain research has not yielded the results we need or expect, and for a variety of systemic reasons, the barriers to research are firmly entrenched.
    According to data published recently, between 1999 and 2014, more than 165,000 people died from overdoses involving prescription opioids (Ref: Centers for Disease Control and Prevention. Injury Prevention & Control: Opioid Overdose: Prescription Opioid Overdose Data. 2016.) I share your concern – Are we to forget about these people like they never existed? I wonder too, “How many, do you suppose, were chronic pain patients?” When we understand the composition of these numbers through better and more effective data collection we will have a better understanding as to why these folks were and remain so vulnerable to deaths associated with prescription opiates. Keep in mind however, that this is a very small fraction of the 42,500,000 persons who died in this country of all causes during the same period of time. Because every death is important the task before us is to develop a better understanding of this data so we can get to root cause analysis and meaningful action.
    DEA has stepped up its response to the dispensing industry and takes credit for its role in helping to reduce both prescribing and drug related deaths by overdose and poisoning. And while you may believe that their activities are limited, stepped up scrutiny and enforcement in local communities has resulted in many pharmacies, physicians and clinics that have reduced or removed themselves from prescribing. During the summer of 2016 I personally spoke with 11 physicians who are in various stages of litigation as the result of stepped up scrutiny in their home communities. The flight of primary care physicians from treating patients is increasing, not declining, particularly in states that failed to expand Medicaid, while at the same time imposing costly controls while reducing reimbursement rates. In many states insurers have narrowed their physician stables. The problem of pain care in America has become a complex problem, not a simple one, and it is becoming even more so.
    It’s really too bad that members of Congress are not speaking directly to patients with chronic pain. If they did, they would be surprised at the decline in accessible, affordable service providers who articulate clearly to their patients that their fear of the DEA and CDC is greater than their fear of under treating or refusing to treat patients who are, by and large, invisible to the system.
    In the meantime, I applaud the efforts to separate bad actors from their actions, and I particularly enjoyed watching shipments of illicit and counterfeit drugs labeled as ‘sea cucumbers’ removed from the street and marketplace in New York state and Florida. I am well aware that criminal enterprises have flooded some sectors of the health care marketplace. Good riddance. DEA is to be commended.
    Whether we like it or not, illicit and counterfeit drugs are widely available. It appears many of them are manufactured in the USA from imported chemicals. But with current payment systems, it may be impossible to distinguish some these from the stream of regulated and manufactured medications distributed by FDA registered manufacturers. There is a good deal of evidence for this – it is beginning to receive its’ just due of attention. AARP addressed the recently (http://www.aarp.org/health/drugs-supplements/info-2016/counterfeit-prescription-drugs-rx.html). I have personally observed this problem in the work that I do with chronic pain patients.
    I have no reason to challenge your explanation of the explanation for reducing the allocation of medications into the marketplace for 2017. However, on October 04, 2016, the DEA’s Public Affairs Division announced that “The United States Drug Enforcement Administration (DEA) has reduced the amount of almost every Schedule II opiate and opioid medication that may be manufactured in the United States in 2017 by 25 percent or more, according to a Final Order being published in the Federal Register tomorrow and available for public inspection today. A handful of medicines were reduced by more, such as hydrocodone, which will be 66 percent of last year’s level. Demand for these opioid medicines, represented by prescriptions written by DEA-registered practitioners, has decreased according to sales data obtained by DEA from IMS Health, a company that provides insurance companies with data on prescriptions written and prescription medications sold in America.” Further, “the Aggregate Production Quota (APQ) established by the Final Order is the total amount of a controlled substance necessary to meet the estimated medical, scientific, research, industrial, and export needs for the year and for the maintenance of reserve stocks. The 2017 APQ has been reduced for oxycodone, hydrocodone, fentanyl, hydromorphone, morphine, and other such medications. (So by DEA’s own announcement, certainly this action does have ‘something to do’ with Schedule III controlled substances.) As you have indicated, “Much of this reduction is attributed to the elimination of a 25 percent buffer that was added to the APQ annually in 2013 through 2016 to guard against shortages.” More discussion is found at this link https://www.dea.gov/divisions/hq/2016/hq100416.shtml. A more elaborate discussion is found in DEA’s annual Drug Threat Assessment Summary report found at this link: https://www.dea.gov/docs/2015%20NDTA%20Report.pdf.
    The ‘invisible patient’ has a different concern – in the last 24 months, their experience is not over prescribing but under prescribing and under treatment, or no prescribing and no access to health care at all – not even in the local emergency room. Conflating prescription reductions as a reason to reduce the buffer designed to protect against drug shortages might be the result of a false equivalency. Better data overall might provide us with better evidence as it comes to understanding the impact on persons who are under served – who are not transitioned to effective alternatives. The looming crisis is a health care access crisis that magnifies the faulty assumptions and inappropriate pain management.
    While we can all debate the weaknesses in our systems of care, and argue about who is responsible or who shot John, the bottom line is that we don’t know what we need to know about the impact of these actions on invisible patients – those who are not represented in the data sets you speak of. And there is a lot of missing data.
    In any case, those who can, who are overlooked by the current systems of advocacy and policy, assisted by families and friends, plan to meet in Washington DC on October 22 between the hours of 10 am and 5 pm. If you are in the Washington DC area, I encourage you to join these fine folks and their families.
    Thank you for taking the time to comment.

    1. The federal government -just like my state of New York doesn’t accept responsibility for their failure to create a real vision for pain and for the externalities caused by their policies and practices for people in pain. Instead they use criminological theory- the neutralization effect to deny there are externalites to their efforts, deny they are responsible for such externalities, deny the validity of those who suffer from such externalities and finally- as we well know claim that the good of people in pain must be sacrificed to prevent addiction. Needless to say instead of being circumspect, the government has been circumscribed with their efforts toward people in pain.
      As Johnson wrote, when considering a policy one should look not to the good it may do bu the potential harms. Our federal has failed to heed Johnsons advice when it comes to opioids, Kratom, and marijuana. With tunnel vision, unelected officials have imposed policies on people in pain with no real consideration of their voice or their situation. Their efforts defy the wisdom of Jefferson when he wrote that governments aim is the happiness and needs of the people. Who can deny now that government has made people in pain more miserable and more worse off then 5 years ago? Government hasn’t sought consociationalism for people in pain, but rather factionalism and isolationism. It was only too easy to predict that people in pain would suffer so greatly that they felt compelled to organize and defend their natural rightsd against the many wrongs perpetrated by a morally disengaged, disempathic and visionless government and marketplace for people in pain.

      1. Thes policies are also imposed, directly or indirectly on physicians themselves, the ones with the training to deal with complex medical issues, beyond the training of your local prosecutor, DEA agent, pharmacist or grieving parent of a heroin OD who looks for a scapegoat.

        Mothers Against Drunk Driving are against Drunk Drivers. Not
        Ford, GM, not
        Seagrams or Budweiser or 7/11

        The current backlash/whiplash about pain meds in specious. There are frequent claims that “Johnny was a star quarterback until his fractured clavicle led to an Rx, 7 years later, he is dead of a heroin OD”
        This narrative missed quite a few steps.,
        The war on Drugs( people) has cost 1.8 trillion dollars
        With zero impact on addiction rates.
        This need for a scapegoat has led to ME:
        Scapegoated in spite of 80% success rate in weaning opiates through alternative therapies, then being accused by my state medical board of failing to recommend alternatives and “overprescribing” narcotics. My patients have lost access to me and to the relief they had been receiving for DECADES. 4 have died, at least three from OD, one from alcohol, another toxice option for those who have NO CHOICE.
        Betraying and abandoning patients Adds to the problem, does not fix anything.
        What is the consequence of dropping pain patients?
        Suicide
        Lost functionality
        Increase in customers for El Chapo…

  13. Thank you Dr. Coleman. Couldn’t have stated it better myself. For sure don’t forget about the pharmaceutical lobby that is all about getting even more medication in patients’ hands in the name of pain management and profit. They spend more money on lobbying than the NRA.

    Dr. Lewis, I admit to being surprised and disappointed by the direction of your blog. Being in the mental health and rehab fields, why did your blog focus so much on medications, which are the least helpful of all therapies (I would know, I am a practicing pain management pharmacist)? What we really need is for payors to cover mental health, psychology and counseling services, as well as physical modalities such as massage, acupuncture, healing touch, etc. Not just for pain management but for all chronic diseases, as well as hospice and palliative care. These are the things that change patients’ lives and provide comfort to those who suffer, not medication. And they don’t have side effects and they don’t cause death or overdose. (but alas not much corporate profit to be made) Analgesics do not alter the progression of or improve chronic pain disease states. And maybe more importantly, they are poor tools to help patients cope with chronic disease and pain.
    Liberal application of opioids in the last 2 decades has not reduced the incidence of chronic pain, but has been a key player in the role of overdose and death. It is time to move past the “nobody understands my pain” to “let’s work on getting past the pain to a better life”. I hope your rally will highlight the need for services that are desperately needed.

    1. Lee- I agree we should work together as a society to improve pain care- and that requires a much greater voice for people in pain. Professionals and their organizations have not worked together to jump over the shadows in pain care to create the symbols of a new day. Our pain care system suffers from functional silo syndrome and frankly organized interests have done much more to compete with each other then cooperate for the sake of people in pain. It is time to go beyond the multidisciplinary talk to a post disciplinary era.
      I don’t share your certaintistic beliefs about opioids. Moreover, as it is the person in pains pain-they should have the right to decide what treatment is best for them. To do otherwise is to strip them of their natural right and natural law. Furthermore, deciding for instead of with people in pain-whether it is opioids or Ito acupuncture leads to invertebration and is degrading and demoralizing. And as a result of the widespread technicism in the professions they have become more and more disempathic and moral disengagement is the rule rather then the exception in pain care.. As Dewey wrote professionalism leads to a false sense of familiarity, independence and completion. Collectively professionals have not called for lowering the prevalence of all painful conditions and have sought to impose their will and organized interest onto people with pain with little if any input from them. I do not know what your vision is for people in pain but mine is to first rid ourselves of the dystopia and theatre of cruelty that pain care has become.

    2. Dear Lee Karl:
      Laudable goals, but no excuse to cut off folks who have been on opiates for decades. It takes time, a compassionate and subtle approach.
      Alternatives are .
      We need to measure functionality.
      We people are driven to their beds by the pain, we must not abandon them.
      Yes
      Pull out all the stops
      Empower patients.
      Do all
      The alternatives.
      And
      Treat those in agony.
      We treat animals better than the abandoned pain patient.
      Time for a national conversation about pain.

    3. Lee Kral, I’m not sure where you’re getting your information, but statistics and reports can be shaped to whatever purpose the writer is supporting at the time. The proof is in the pudding. Since the enactment of the guidelines, as a patient advocate, I have personally witnessed people with brilliant minds, who were actively participating in the battle (chronic pain patients versus the forces of groups like PROP and FEDUP) who have gone from functional to bedbound or near complete bedbound. I have many people discharged by their treating physicians for no apparent reason, other than the fact that the doctors are fearing the DEA and electing to “play it safe” and prescribe no opioids for any reason. I have seen people die from being discharged without tapering. I have seen people die from suicide due to uncontrolled pain. In fact, due solely to media hysteria, I saw a 55 year old black lady who presented to the ER as “unable to breathe” being escorted out of the hospital in handcuffs because she was not “believed” in triage. The police officer who handcuffed her had a badge cam showing the woman fall to her death in the parking lot while nurses continue to yell at her “Get up, we know you can hear us”. They continued to yell at her after her death. I have seen people flying to the west coast from the midwest for treatment. As to the “statistics”, I find it interesting that all overdose deaths (including heroin overdoses) are always in the statistics to drive up the numbers and deliberately mislead America so that the majority of Americans stand firm in their convictions that everyone who takes opioids for any reason surely must be inflicted with the new diagnosis appearing on innocent people’s medical records “Opioid Use Disorder”. The cards are stacked against us and it is being done deliberately. Your statement that Analgesics do not alter the progression or improve chronic pain diseases, is weak in that your intentionally forget to leave out the part that for MOST chronic pain patients, THERE IS NOTHING … NOTHING THAT WE HAVE OR WILL EVER HAVE, that will “improve” or “alter the progression” of chronic disease processes. You offer your opinion that no one should take opiates, so my question to you is this … IF THERE IS NO MEDICINE TO CURE OR TAKE AWAY PAIN, why in the world would you insist that everyone, including those who have never abused and have used their medicine responsibly, give up that one thing that can transform their day from bedbound to functional. WAKE UP AND LOOK AT THIS THROUGH NEUTRAL EYES. The truth is, no one wants to consider, on a case by case basis, those whose lives are miserable now that the opioid component of their treatment has been removed. OUR RALLY WILL HIGHLIGHT THE FLAGRANT DISREGARD this Nation as a whole has for chronic pain patients. NEED FOR EXTRA SERVICES … YES!!!!! But focus on the reduction of pain for people who have no other hopes for a functional life. But you don’t want to focus on that. All you want to focus on is eliminating opioids from those who truly need them. Your letter is a prime example of the nonsense that is being thrown in the faces of chronic pain patients. You know what? When you can offer SOLUTIONS… then you should chime in. But while all you have to offer is the negative sides of it, why don’t you keep your ill-informed decisions to yourself. You say the opioids are the “least helpful of all therapies”, I would LOVE to hear what you have in mind for the PAIN aspect of all this. Focus your addiction rhetoric on the ABUSERS, and leave the rest of us alone. We’ve already lost our pain meds. Just let us suffer in peace.

      1. Thank you so much for what you are doing for the chronic pain sufferers! I pray the protest on WDC brings to light just how much needless suffering is being caused to the chronic pain patient! Pain medication helps those in horrible pain have some kind of quality of life. It is no different than insulin for diabetics or high blood pressure meds for those with high blood pressure…all need meds for their conditions but chronic pain patients are being denied opioids to treat their chronic pain! NO opioids will NEVER cure chronic pain but does give us a little reprieve from our pain to do things people take for granted on a daily basis. Society has been so brain washed to believe all the CDC statistics concerning overdose deaths. The CDC even admits in their own website that they double count overdose deaths which creates hysteria and fearmongering!
        I pray that your protest will bring to light a lot of the issues we face. A small group of us had a protest in Montgomery, Alabama on Oct 19th. We were protesting for our rights for good pain management and specifically protesting for one of the good pain management doctors that lost her license because she was treating her patients with opioid pain medications! We did have a few small victories though….the Alabama Medical Board was NOT happy to see people protesting outside their kangaroo court showing just how ignorant and uninformed these people truly are about chronic pain! The Alabama Medical Board stated it was their responsibility to get all of us off opioids to keep us from overdosing! We had to just learn to live our lives in pain! It was outrageous and the poor good doctor had the cards stacked against her! We watch her attorney will in 6 huge boxes of our medical records for them to use in court! My medical records were part of them. How wrong is this and how wrong is this as a society! We treat our animals better than we treat people in chronic pain! The Alabama Medical Board also stated that they intend to close every pain management doctor/clinic in the state of Alabama! They actually feel it is their responsibility to stop people from taking pain medications to stop overdoses…in fact, it is backfiring because it is driving honest upstanding citizens with chronic pain to go to the streets for their pain control! We had an investigative reporter show up that plans to do an in-depth series of stories showing the other side…the pain patients side of the coin. I pray it will help educate the public as to what is going on.
        Lana, I wish we could have made the protest in WDC but our pain was too much. We look forward to seeing the results of your hard work and hopefully will be able to see it on-line! PLEASE EVERYONE, STAND UP AS MUCH AS YOU CAN! OUR VOICES MUST BE HEARD! Thank you again for what you are doing for pain patients across the USA and thank you Dr. Fudin!

      2. One more comment from the Alabama Medical Board. They told the investigative reporter that we were all junkies and addicts! How short sided is that? Everyone there except the baby was a chronic pain sufferer and none of us misuse or abuse our pain medications! We all need them to have some kind of quality of life! That will end shortly for my husband and I because it appears that our latest pain doctors medical license to prescribe is not going to be renewed at the end of the year. So we both have to do the doctor walk again and try to find another pain management doctor! Currently, he is my 4th pain management doctor in 2 years and my 3rd in a year. He is the 3rd for my husband. So…I am expecting the next pain doctor/clinic we try to get into, even though we both have extensive medical records to prove our pain, will accuse us of doctor shopping! We only want a good pain management doctor that will work with us and treat our chronic pain!

  14. Mr. Coleman- you claim your an effective lobby and that you represent people in pain. I have no doubt you may represent some people in pain but frankly I don’t think you can claim you represent all. I’m at a loss to what you mean by “effective”. Look around- do you believe we have “effective” pain care for most people in pain. I don’t think so. The evidence is piling up that people in pain are increasingly unhappy with their care and the prevalence of pain from arthritis, and diabetes has been rapidly on the rise. The costs of care are not being lowered but the burden of care- from the treatment burden, financial burden, symptom burden has risen in recent years. The fact that there have been rallies from edsinfo and the kratom rally- and now rallyagainstpain- within less then 6 months- is proof positive of very marked regulatory and market failure for people in pain.
    Frankly, pain care has become dissolute and has lead to the moral outrage that social movements are made of. Unless people in pain unite their will be a continuous escalation of failure in pain care. You are free to believe as you wish but your belief about effective pain care cannot be squared with the facts.

    1. Dave: I don’t understand what you are saying. I am NOT an effective lobby and I’m not even sure I know what such a thing is. I used the word :effective” only once in my comment and that was when I cited a quote from the original article (Take, for example, the notion that pain patients “lack an organized lobby to effectively advocate for and represent their needs.”). The issue of effective pain treatment that you raise is perhaps one for another day but that was not what I was addressing.

      1. Mr. Coleman- You started off your comment by countering Ms. Lewis claim about the lack of an effective lobby for pain patients. You made the claim that the APS effectively represents pain patients needs- as if their could be a substitute for direct democracy. For as Rousseau claimed once people are represented , they essentially no longer exist. This is why we are seeing more and more of what our betters may refer to as “vague noise” and democratic excesses as more and more people in pain are feeling the moral outrage that leads to social movements.
        I recognize that the APS has some important accomplishments for people in pain including promoting pain as a 5th vital sign and raising consciousness about the plight of people in pain.
        Dr.. Brennan has reviewed the history of the Decade of Pain Research and Control-https://www.researchgate.net/publication/282816026_The_US_Congressional_Decade_on_Pain_Control_and_Research_2001-2011_A_Review. I think it is fair to say, at best, it was of modest benefit. And I’m sure you know the Conquering Pain Act was introduced in 1999 and after going nowhere for 5 years was replaced by the National Pain Care Policy Act-which would have failed if it were not championed by Senator Hatch. The disastrous National Pain Strategy which received 5 serious criticism from the IASP alone, is dead in the water.
        It is only too clear, the efforts and motivational intensity of organizations and individuals concerned about pain have not been enough to trouble the sleep of our marketplace and our government when it comes to the needs of pain care. People in pain remain, as the famous Dr. Wall said: “the lonely abandoned folk”.
        As Dr. Biro said in his book-Listening to Pain(http://www.davidbiro.com/) As long as the conversation lasts, people in pain are not alone. We people at rallyagainst pain are protesting the lack of conversation- the lack of deliberative and agonistic democracy that the DEA, FDA, CDC, CMS have shown toward people in pain. We refuse to remain relegated to moral and civil vagabondage. In the pound of our laws there is not an ounce of love for people in pain- and not much sinceritas or humilitas, either. And at the rally I will repeat the words of Truman when he said we must create a new world – a world of eternal dignity- for people in pain. And as JFK said-Let every nation know, whether it wishes us well or ill, that we shall pay any price, bear any burden, meet any hardship, support any friend, oppose any foe to assure the survival and the success of liberty. Welcome to the peacefui revolution and the Brave New World where the needs of people in pain are heard and respected with caritas.

        1. Dave:
          Dr Coleman and Dr Lewis
          Are Doctors.
          They worked just as hard for their degrees as I did for mine.
          Please address them as such.
          Thank you for having a civil discourse about these issues which raise such passion.

      2. Effective pain treatment is always something “for another day”. You opioid-phobic tunnel vision people are all the same. Just stop opioids all together and we’ll all be just fine. Wait until your wife is discharged from the hospital from a shattered ankle with a note, not a prescription, telling her to take Tylenol for pain. Then come back and see us.

  15. Terri- well written and well done. You describe in considerable detail, and in ways bureaucrats can understand, the Kafkaesque theatre of absurd nightmare that people in pain have been forced to endure. It is clear current treatment for pain has violated the prohibition against cruel and degrading treatment. I couldn’t imagine a system to be developed that is more burdensome for people in pain then the current one. And it is remarkable how anyone now can claim that pain care is “patient-centered”. It has become the opposite of minimally disruptive medicine and stripped people in pain of autonomy, dignity, hope, and the vestiges of compassionate care. Animals receive better treatment for pain.
    Like I have been saying since I wrote the American Pain Rights Act Petition in 2010. Its up to people in pain to change the system. Market and regulatory failure will continue, until social movement organizations have the political capital to oppose and humanize pain care and call for structural changes in the market and government that will ensure health justice and moral decency in our pain care system.

  16. I don’t want to sound negative or argumentative but, frankly, there are a few things in this piece that are simply untrue. Take, for example, the notion that pain patients “lack an organized lobby to effectively advocate for and represent their needs.” Really? The American Pain Society’s thousands of members represent their needs. Likewise, the American Pain Foundation represented those needs until a Senate inquiry in 2012 abruptly resulted in its overnight demise. Senators had asked APF about reports that 90 percent of its funding came from drug companies. (See: Washington Post, May 8, 2012, “Senate panel investigates drug companies’ ties to pain groups.”)

    At the end of this month, on the 31st to be exact, we will celebrate the 16th anniversary of the enactment into law of the “Decade of Pain Control and Research,” an important piece of legislation that no doubt showed the power of lobbyists and paid advocates. Here’s how the Journal of Pain Medicine heralded the occasion at the time:

    “The ultimate success of this venture depended on the strong support of the American Academy of Pain Medicine and the Washington-based Pain Care Coalition formed in 1998 by the AAPM, the American Headache Society, and the American Pain Society. Particular recognition is due to: Philipp M. Lippe, MD for the initial proposal; the Board of Directors of the AAPM for their steadfast support; Joel Saper, MD, then Chairman of the Pain Care Coalition; Robert Saner, JD of the Washington law firm affiliated with the Pain Care Coalition; Michael Ashburn, MD, President of the American Pain Society, and a friend of Senator Orrin Hatch; and last but not least, Senator Orrin Hatch, who introduced and shepherded this legislation through Congress.” (Ref: Lippe PM. The decade of pain control and research. Pain medicine. 2000;1(4):286.)

    If, as the author suggests, pain patients today “lack an organized lobby,” what happened between 2000 and now? Could it have anything to do with the fact that between 1999 and 2014, according to the CDC, more than 165,000 people died from overdoses involving prescription opioids? (Ref: Centers for Disease Control and Prevention. Injury Prevention & Control: Opioid Overdose: Prescription Opioid Overdose Data. 2016.) Are we to forget about these people like they never existed? And, how many, do you suppose, were chronic pain patients? Who lobbies for them?

    The second misstatement is this: “In response to the spike in illicit and counterfeit drugs like heroin and fentanyl that have flooded local communities in some sections of the country, the Drug Enforcement Agency [sic] has mounted an aggressive campaign against pharmacy distributors, pharmacies and pharmacists, and prescribers who treat chronic pain.”

    Nothing could be farther from the truth. According to published DEA congressional testimony, investigations of pill mills in Florida and other states, and investigations of rogue Internet pharmacy sites identified a number of wholesale distributors, including the “big three” (AmerisourceBergen, McKesson, and Cardinal Health), that were in violation of federal law by distributing drugs to these criminal enterprises. Each of these companies signed stipulated agreements of behavior and settlements admitting the offences. Cardinal Health and McKesson, both repeat offenders, were fined millions of dollars and had some of their DEA registrations suspended.

    Court documents show that these companies and a half-dozen smaller distributors diverted tens of millions of dosage units of hydrocodone and oxycodone products to pill mills, pharmacies, and rogue Internet pharmacies. CVS and Walgreens also were charged for involvement in this activity and settled cases with DEA, paying fines of $11 million and $80 million, respectively.

    The “Distributor Initiative,” as it was called by the Drug Enforcement Administration (DEA), began in 2005 and had nothing whatsoever to do with a “spike in illicit and counterfeit drugs like heroin and fentanyl.”

    Lastly, I need to comment on this statement: “In October, the DEA announced their plan to reduce the licensed manufacturing of schedule III medications by 25% based on the reduction of prescriptions issued.”

    This is not so. Federal law requires the Administrator of DEA “to establish aggregate production quotas for each basic class of controlled substance listed in schedules I and II and for the list I chemicals ephedrine, pseudoephedrine, and phenylpropanolamine.” (See: 81 FR 69079 “Final Order”)

    During calendar years 2013-2016, partly in response to complaints of drug shortages, the DEA arbitrarily added 25 percent to its annual estimated medical, scientific, and research needs in setting aggregate drug quotas. A subsequent audit by GAO (GAO-15-494T) found weaknesses in some of the quota-setting procedures used by the DEA but the actual drug shortages, according to DEA, involved discretionary decisions by manufacturers to use their assigned quotas to favor certain products over others.

    After making several internal changes, the DEA proposed and later issued a Final Order removing the 25 percent it had added previously to ensure that there would be no drug shortages. This reduction was coordinated with FDA and simply returns the quota setting process to where it should have been – and would have been – all along. Contrary to what this blog piece stated, the action had nothing to do with Schedule III controlled substances. Indeed, the law in question only pertains to quotas for Schedule I and Schedule II drugs and certain listed chemical substances. In addition, while prescription data may be considered in the analytic process that determines annual drug quotas, they are just one of several datasets used for this purpose.

  17. Great article, Terri Lewis. Just one comment relating to “Red Flags”. As I recall, the idea of flags began with an article by Steve Passick. The article attmpted to show what behaviors were indicative of medication misuse. That was in the early days of the push to weed out the misusers and abusers. The article published a list of behaviors and some were labeled as “Yellow Flags” and a few were labeled as “Red Flags”. The yellow flags were considered to be behaviours where there is MODERATE risk that the person is misusing prescriptions (e.g. a single lost prescription.). Then there were the true RED FLAGS (e.g. urine showing absent prescribed medication or metabolites, and/or the presence of illicit drugs that included marijuana and cocaine…..This was in the days before states began legalizing medical marijuana and it should be remembered that Marijuana is still illegal under federal law.)

    Over the years there has been dramatic “COLOR CREEP” in which all yellow flags are now considered “RED FLAGS”. Too many doctors have been persecuted and/or prosecuted for failing to treat a yellow flag as a red flag.

    1. Yes sir Dr Dobson.
      Red flag is a nautical term. A warning.
      Not
      A prohibited area, An area of caution

      The Dea now has a video in red flags
      Sent to all pharmacists
      That has terrified them.
      The prescription drug registries in 49 states have mitigated much of that hysteria, yet
      The warnings are considered by some as facts
      This has us managing patients out of fear
      Not compassion.
      A hostile regulatory environment functions as any other harassing environment:
      Defensive behaviors
      Avoidance behaviors
      Witch hunts
      Gossip
      Ensue.

      Think Germany 1933.
      Think
      Schindler list
      Think
      Underground Railroad run
      By the abotlitionists
      The French Resistance
      Etc.

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