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  • Advocacy pays off! The Opioid Risk Tool (ORT) and Dr. Webster's statment


    Bev's story about being denied opioids due to having been sexually abused

    In November 2017, I (Bev) did something I had done many times before; I went to the emergency room due to kidney stone pain. I had frequent kidney stones due to having Crohn's Disease. Although I had pain medication at home, I was unable to keep it down, and the pain was unbearable. My doctors had always told me if I couldn't take the pain or couldn't stop vomiting, to go to the emergency room. Recent scans showed multiple kidney stones in the ureters. The ER doctor was kind; she treated my pain and decided to admit me for pain control. That's when things took a turn. Upon entering the room, the hospitalist said "I saw in your prescription history that you have gotten Ativan, What was that for?" I told him it had nothing to do with why I was there, that it was for PTSD. The rest of the conversation went like this: Dr.: "What is your PTSD from?"  Me: "Childhood trauma." Dr.: "What kind of childhood trauma?" Me: "I don't understand why this matters." Dr. "Was it from sexual abuse?" Me: "Yes." Dr. "Due to that, I can't give you any IV opioids. I can give you what you take at home, and I'll give you a bit of a higher dose, but you're too high risk of addiction because you were sexually abused as a child." I was shocked and mortified. He then said "IV opioids change your brain chemistry and so does sexual abuse. You have a high risk of addiction and I won't take part in causing that." He then hit me on the arm and said:

    "You'll thank me someday for this." 

    I was then treated horribly for the next 24 hours until I went home. It was from that hospital bed that I first contacted Claudia, and why I started researching and advocating. I had never had childhood abuse used against me in health care. Nobody had ever asked me this question before, and never in my wildest dreams (or worse nightmare) did I think this doctor would use this information to deny pain medication. While researching North Carolina's pain guidance from the medical board, I came across the information about the Opioid Risk Tool (ORT). Their information told doctors to give all patients the ORT before giving opioids.

    This was in 2017 and it still affects me. It traumatized me. I'm terrified to ever go to the hospital again. I'm afraid of doctors. I can't express strongly enough how much this one incident changed my life. It damaged me. I'm fighting back and hoping to be a voice to others who this has happened to.

    Maia Szalavitz discussed my story in the Wired article "The Pain Was Unbearable So Why Did Doctors Turn Her Away."


    What is the ORT?

    The ORT is a risk mitigation tool, meant to see who may be high risk for addiction so the doctor can keep a close watch on those patients. It was created in 2005 from Dr. Lynn Webster.

    Screenshot 142

    The first thing I noticed was that when a woman answers yes to the sexual abuse question, she's given 3 points against her. Yet, a man gets 0 points. This was done because the study used as evidence for this question was one that only researched the connection of women sexual abuse survivors and addiction. Little did I know that I wasn't the only person this happened to. For the past few years, I've gotten quite a few stories from women who had been sexually abused, assaulted, or even physically abused that had a doctor use that information as a reason to deny opioids


    Dr. Webster's statement about the ORT being weaponized

    In 2019 Claudia interviewed Dr. Lynn Webster and I called in to talk to him. I told him what happened and he said that was a weaponization of the tool, and it shouldn't be used that way. He then wrote about the weaponization of the ORT in an article in Pain News Network "The Opioid Risk Tool Has Been Weaponized Against Pain Patients."

    It is a cruel misapplication of the ORT to use a background of sexual abuse as the only criterion to assess whether a patient should receive opioid therapy. The ORT is an important tool in mitigating harm that prescribing opioids could cause. It should not be weaponized to justify denying people in pain appropriate therapy.  

    Unfortunately, this didn't help the situation. We've continued to hear from women who were denied opioids due to being a survivor of sexual abuse/assault. Has the ORT been worked into risk score algorithms like NarxCare? Nobody knows for sure since their algorithm is proprietary, but I would say probably. We do know it's been embedded in EHR (Electronic Health Record) CDS (Clinical Decision Support Tools). I was left with the question of how do we fix this.


    Study validating ORT/Updated version eliminating the sexual abuse question

    Carrie Judy, our other researcher, while researching ORT came across a relatively new study from 2019 by Dr. Martin Cheatle. This study's purpose was to validate the ORT. The results showed that the sexual abuse question wasn't relevant, and that the ORT was actually more reliable when removing that question. He created an updated version of the ORT leaving the sexual abuse question off.

    Listen to Dr. Cheatle discuss why the sexual abuse question should be removed:

    We got a lot of feedback that female patients didn't want to answer that question; it caused too much trauma

    Screenshot 145

    Unfortunately, there hasn’t appeared to be any formal effort to make sure the original ORT would be replaced by the updated version. As we stated, we are aware the ORT has been embedded in some Electronic Health Record platforms and also worked into some risk scores. It’s given by doctors and treatment centers, Since some risk scores such as NarxCare are proprietary, there is no way to know if the ORT is used in their algorithm, and if so which version. 


    ORT_letter_Final_version_for_website.docx

    Dr. Webster says the original ORT should no longer be used

    Periodically over the years we've asked Dr. Webster to release a statement for agencies and doctors to use the updated version instead of the original. On June 29, 2022 he listened and wrote “Another Look at the Opioid Risk Tool.”  

    It distresses me to know that, while the original ORT served to help assess the risk opioids posed for individuals, it has also caused harm. Since the question about a woman's sexual abuse history does not provide any additional benefit, there is no reason to retain it. The revised ORT should be used instead of the original ORT.


    What Can You Do to Help?

    We have noticed that most government agencies, individual doctors, and treatment centers still use the original version of the ORT. We plan to create an open letter (and will post it here) to formally request places that use the original to replace it with the updated version.

    If you're given the ORT, please check to see which version it is. If the sexual abuse question is included, please show your doctor this information and explain that evidence shows the updated version is superior, and that the creator of the ORT released a statement to not use the original version. 


    Here is a letter (pdf) (Word) you can show your doctor that includes all of this information.

    If you've been denied opioids due to being a survivor of abuse, please contact me at bevschecht@icloud.com.

  • Against the Pain: The Opioid Crisis and Medication Access (NPR show 1A)

    NPR's show, 1A, had our VP, Bev Schechtman on a panel on November 11, 2021. The name of the segment is "Against The Pain: The Opioid Crisis and Medication Access." NPR became interested in the show after reading Maia Szalavitz's article about NarxCare in Wired.  Listen to the recording of the show.  You don't want to miss this!  

    "We have these people who have been on these meds for 20-30 years and doctors are under extraordinary pressure to get their numbers down" ~Maia

    "In a criminalized environment where doctors are not only afraid of losing their license, but of going to prison, and where patients are being squeezed because they're being told 'you can only have x amount because otherwise my numbers are too high,' you end up with a lot of untreated pain." ~Maia

    "I'd like to see context added (to these algorithms), if someone moves 3 times in 2 years, it needs to not look like they're 'doctor shopping,' I'd like to see a return to individualized care and stop these arbitrary guidelines where people are having a hard stop on what they can and can't have and they're not looking at what's actually going on with the patient." ~Bev

    "I was treated like a criminal; I was mocked, laughed at, scolded, I was embarrassed...I felt revictimized." ~Bev

    "There are tremendous gender and racial bias in these algorithms and in this false narrative." ~Bev

    "No one should ever be denied care, that's just cruel and unusual punishment." ~Dr. Dombrowski

    "Electronic Health Records are just a billing system, not to make patient care better...if you hit something by accident like malingering, next thing you know it's in the chart permanently. It's dangerous." ~Dr. Dombrowski

    Dr. Mark Ibsen, who is a fierce advocate for the CPP community, recorded the show with running commentary.  

  • Did Appriss (now Bamboo Health) actually externally validate NarxCare???

    Read our FAQ's on NarxCare and our NarxCare article, If you need a little refresher on what it is. 

    As you know, one of our issues with NarxCare is that it has never been externally validated. Bamboo Health/Appriss held a webinar on October 27, 2021. The webinar was named "External Validation of NarxCare as Useful Clinical Decision Support Tool." Here is a recording in case you're interested in watching the 30-minute webinar. They state the aim of the paper the webinar was based on is to "validate the NS metric compared to WHO ASSIST and identify high, moderate and low opioid risk thresholds and to provide actionable data."

    Before I go into detail about this webinar, I want to tell you a story about a hypothetical patient named Rachel. 

    Rachel has had the same prescriber for years, but is moving across the country and has to find a new doctor.  According to Rachel's Narcotic Score (NS), Rachel now has two prescribers. This new doctor has a PA in his office that sometimes writes Rachel's prescriptions. Rachel now has 3 prescribers within the last two years. Six months after Rachel started seeing this new doctor, he is raided by the DEA and can no longer prescribe. Rachel finds a new doctor. She now has had 4 prescribers. Rachel's new doctor gives her the first two prescriptions and then transfers her to his NP. This would be Rachel's 5th prescriber. Sadly,18 months after Rachel moved, she is in a terrible car accident and is admitted to the hospital for 4 weeks. Upon discharge, the nurse has Rachel's prescriptions filled at the hospital pharmacy for Rachel so she doesn't have to stop on the way home. This would now be a 6th prescriber. According to the PDMP and NarxCare, she will be flagged as a doctor shopper.

    Let's talk about Rachel's pharmacies. Once Rachel moves, she obviously has to get a new pharmacy. Rachel now has 2 pharmacies showing in the PDMP. Rachel's new pharmacy is CVS. CVS starts to give Rachel a hard time about getting her prescriptions filled and her doctor suggests she start going to a small mom and pop pharmacy. Rachel now has 3 pharmacies listed in her PDMP NarxCare score. After a few months, her current pharmacy tells Rachel that due to DEA quota cuts, they can't keep filling her meds consistently and suggests she go to a different, larger pharmacy. Rachel does, and now has 4 pharmacies listed in her PDMP. Remember Rachel's terrible car accident she was in? The pharmacy at the hospital would be Rachel's 5th pharmacy in the past two years. According to her Narcotic Score, she will be flagged as a pharmacy hopper.

    After Rachel's nearly fatal car accident, she is given a prescription for sleeping pills because she has a really hard time sleeping. She also is given 10 Ativan because she has PTSD from her accident and gets panic attacks every time she gets in the car to drive to PT. Both of these medications increase her NarxCare Narcotic Score even though they aren't opioids.

    Rachel sees her doctor after being discharged from the hospital and he tells her that her Narcotic Score is too high and he can no longer prescribe. Her NS skyrocketed bc she had 6 prescribers, 5 pharmacies, a prescription for sleeping pills and a prescription for Ativan. The only medication her doctor is now willing to prescribe is Suboxone, which means she would now have a diagnosis of Opioid Use Disorder in her EHR. Rachel declines and thankfully, she is able to find a new pain doctor. Her NS now shows she has had a total of 7 prescribers in the last 2 years. Her new doctor receives a warning letter because he is prescribing controlled substances to someone with a very high NS. Rachel's new doctor dismisses her from his office saying he's not willing to risk his license for her. Not only is Rachel unable to find a new pain doctor, she can't even find a regular doctor.

    So, was this Narcotic Score helpful?  In black and white it looks like Rachel is playing games and has definite signs of OUD. The reality is, she doesn't struggle with addiction, but is now medically abandoned and her only option for pain relief is to go to the streets and hope to get pills that aren't laced with illicit fentanyl. Since Rachel is too afraid to do that, she has to quit her job and file for SSDI since she is no longer able to work due to uncontrolled pain and anxiety.

    Now let's discuss this webinar.

  • NPR show 1A with Bev Schechtman and Maia Szalavitz discussing NarxCare and how it affects pain treatment

    NPR's show, 1A, had our VP, Bev Schechtman on a panel on November 11, 2021. The name of the segment is "Against The Pain: The Opioid Crisis and Medication Access." NPR became interested in the show after reading Maia Szalavitz's article about NarxCare in Wired.  Listen to the recording of the show.  You don't want to miss this!  

    "We have these people who have been on these meds for 20-30 years and doctors are under extraordinary pressure to get their numbers down" ~Maia

    "In a criminalized environment where doctors are not only afraid of losing their license, but of going to prison, and where patients are being squeezed because they're being told 'you can only have x amount because otherwise my numbers are too high,' you end up with a lot of untreated pain." ~Maia

    "I'd like to see context added (to these algorithms), if someone moves 3 times in 2 years, it needs to not look like they're 'doctor shopping,' I'd like to see a return to individualized care and stop these arbitrary guidelines where people are having a hard stop on what they can and can't have and they're not looking at what's actually going on with the patient." ~Bev

    "I was treated like a criminal; I was mocked, laughed at, scolded, I was embarrassed...I felt revictimized." ~Bev

    "There are tremendous gender and racial bias in these algorithms and in this false narrative." ~Bev

    "No one should ever be denied care, that's just cruel and unusual punishment." ~Dr. Dombrowski

    "Electronic Health Records are just a billing system, not to make patient care better...if you hit something by accident like malingering, next thing you know it's in the chart permanently. It's dangerous." ~Dr. Dombrowski

    Dr. Mark Ibsen, who is a fierce advocate for the CPP community, recorded the show with running commentary.  

  • Podcast S1 E12 - PDMP with Atty. Jennifer D. Oliva - part 3 PDMP/NarxCare

    Season 1 Episode 12 - 10/24/22

    Link to Episode

    Claudia and Bev discuss PDMP's (Prescription Drug Monitoring Programs) and NarxCare with Atty. Jennifer Oliva. 

    "Professor Oliva’s research and teaching interests include health law and policy, privacy law, evidence, torts, and complex litigation. She has served as an invited peer reviewer for the American Journal of Public HealthYale Journal of Health Policy, Law, and EthicsAmerican Journal of Law & MedicineJournal of Law and the Biosciences, and Big Data & Society and her scholarship has been published by or is forthcoming in, among other publications, the California Law ReviewDuke Law JournalNorthwestern University Law ReviewUCLA Law ReviewNorth Carolina Law Review, Ohio State Law Journal, George Mason Law Review, and online companions to the University of Chicago Law Review and New York University Law Review."

    Jenn is on the Science and Policy Advisory Council for NPAC (National Pain Advocacy Center)

    Excerpts were played on this podcast that can be found in their entirety in the following links:

    NPR show 1A - "Against the Pain: The Opioid Crisis and Medication Access"

    "Patients, Privacy, and PDMP's" - Cato with Dr. Jeffrey Singer and Kate Nicholson

    Duke Margolis - "Strategies for Promoting the Safe Use of Prescription Opioids"

    NPR - "To End Addiction Epidemic" - Kolodny quote

    Cover 2 Resources - Gary Mendell

    Jennifer Oliva can be contacted on Twitter @jenndoliva

    Learn more about Jennifer on her website at uchastings

    Jennifer D. Oliva's paper:  "Dosing Discrimination: Regulating PDMP Risk Scores"

    Disclaimer: The information provided to you in this podcast is not to be considered medical or legal advice

  • Podcast S1 E13 - Part 4 - PDMP/NarxCare and Law Enforcement

    Season 1 Episode 13 - 10/31/22

    Link to Episode

    This is part 4 in our NarxCare/PDMP series. We interview Jacob James Rich. This episode focuses on PDMP harms, law enforcement's access to the PDMP, and whether HIPAA protects patients from PDMP data being shared.

    Jacob James Rich is a researcher at the Cleveland Clinic Center for Evidence-Based Care Research, studying epidemiology and biostatistics at the Case Western Reserve University School of Medicine. Jacob also works as an analyst for Reason Foundation, focusing on healthcare policy. He has written extensively on drug policy topics, such as the consequences of prescription drug monitoring programs (PDMPs) on patient access and overdose mortality. Jacob is currently researching racial disparities in drug enforcement with CWRU Graduate Student Council's DEI Award.

    Brief: https://reason.org/policy-study/prescription-drug-monitoring-programs-effects-on-opioid-prescribing-and-drug-overdose-mortality/

    Reason bio page: https://reason.org/author/jacob-rich/

    Twitter: @jacobjamesrich

    Attorney Jennifer Oliva's article on PDMP and law enforcement in Duke Law Review - Prescription Drug Policing: The Right to Health Information privacy Pre- and post-Carpenter 

    Links to topics mentioned:

    1. Opioid Rapid Response Program content on The Doctor Patient Forum Website
    2. OIG Toolkit

    Links to podcasts or presentations in their entirety that were shared in this podcast - 

    1. NASCA - "State PDMP vs National PDMP"
    2. Cover 2 Resources - "Strike Force Stops Flow of Illicit Opioids"
    3. Cato Institute - "Patients, Privacy, and PDMP's"
    4. NPR show 1A - "Against the Pain - The Opioid Crisis and Medication Access"

    Kate Nicholson's bio - "Kate Nicholson, JD, is a civil rights attorney and a nationally-recognized expert on the Americans with Disabilities Act (ADA). She served in the U.S. Department of Justice for 18 years, where she litigated and managed cases, coordinated federal disability policy, and drafted the current ADA regulations." - Executive Director at NPAC

    Kate developed intractable pain after a surgical mishap left her unable to sit or stand and severely limited in walking for many years. She gave the TEDx talk, What We Lose When We Undertreat Pain, and speaks widely at universities and conferences and to medical groups."

    Disclaimer: The information provided to you in this podcast is not to be considered medical or legal advice.

  • Podcast S1 E8 - NarxCare Part 1 - What's my NarxCare score and what does it mean?

    Season 1 Episode 8 - 9/26/22

    Link to episode

  • Podcast S1 E9 - NarxCare Part 2 - NarxCare Used To Deny Medical Care

    Season 1 Episode 8 - 10/3/22

    Link to episode

    This is part 2 of our NarxCare podcast series. 
  • The Pain Was Unbearable. So Why Did Doctors Turn Her Away?

    This article was published in Wired on August 11, 2021, written by Maia Szalavitz.

    Topic: NarxCare, Opioid Risk Tool, and discrimination against women sexual abuse/assault survivors

    Mentions our organization and quotes our VP, Bev Schechtman

    The Pain Was Unbearable. So Why Did Doctors Turn Her Away?

    "ONE EVENING IN July of 2020, a woman named Kathryn went to the hospital in excruciating pain.

    A 32-year-old psychology grad student in Michigan, Kathryn lived with endometriosis, an agonizing condition that causes uterine-like cells to abnormally develop in the wrong places. Menstruation prompts these growths to shed—and, often, painfully cramp and scar, sometimes leading internal organs to adhere to one another—before the whole cycle starts again.

    For years, Kathryn had been managing her condition in part by taking oral opioids like Percocet when she needed them for pain. But endometriosis is progressive: Having once been rushed into emergency surgery to remove a life-threatening growth on her ovary, Kathryn now feared something just as dangerous was happening, given how badly she hurt.

    In the hospital, doctors performed an ultrasound to rule out some worst-case scenarios, then admitted Kathryn for observation to monitor whether her ovary was starting to develop another cyst. In the meantime, they said, they would provide her with intravenous opioid medication until the crisis passed.

    n her fourth day in the hospital, however, something changed. A staffer brusquely informed Kathryn that she would no longer be receiving any kind of opioid. “I don’t think you are aware of how high some scores are in your chart,” the woman said. “Considering the prescriptions you’re on, it’s quite obvious that you need help that is not pain-related.”

    Kathryn, who spoke to WIRED on condition that we use only her middle name to protect her privacy, was bewildered. What kind of help was the woman referring to? Which prescriptions, exactly? Before she could grasp what was happening, she was summarily discharged from the hospital, still very much in pain.

    Back at home, about two weeks later, Kathryn received a letter from her gynecologist’s office stating that her doctor was “terminating” their relationship. Once again, she was mystified. But this message at least offered some explanation: It said she was being cut off because of “a report from the NarxCare database.”

    Like most people, Kathryn had never heard of NarxCare, so she looked it up—and discovered a set of databases and algorithms that have come to play an increasingly central role in the United States’ response to its overdose crisis.

  • The Pain Was Unbearable. So Why Did Doctors Turn Her Away? NarxCare is the reason.

    When our VP, Bev Schechtman, was denied adequate pain medication when hospitalized for kidney stones due to having been a victim of sexual abuse, she became obsessed with researching how this could happen. She learned about NarxCare and the Opioid Risk Tool. We, at The Doctor Patient Forum/Don't Punish Pain, have been researching these topics for the past four years. We've reached out to countless investigative journalists only to be shot down. Thankfully, Maia Szalavitz, an author and leader in harm reduction, was interested in telling the story of NarxCare and other risk tools. This was our first piece of national media, and we are so excited to share it with you. We suggest holding on to this article and sharing it with your local legislators.  About half of the states use NarxCare, and this article can help you fight against it. Read about how our country has tried to help the "opioid crisis" by using a risk score algorithm, yet it seems they're only making matters worse.

     

The Doctor Patient Forum

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