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Step-by-step instructions on how to advocate for a loved one who is in the hospital (pdf)
Sample letter to Congress or legislators regarding the CDC Guidelines and the conflicts of interest of the co-author, Roger Chou.
How to start the process of getting legislation passed in your state
A list of important studies, articles, interviews, podcasts, etc.
Table of recent studies, research, and statistics showing overdoses, rate of addiction, PDMP use, etc. (useful when speaking to legislators, media, doctors, etc.)
How do I file a complaint for a civil rights violation (according to the ADA-American With Disabilities Act)
Steps to request copies of your Electronic Health Records (EHR) and steps to correct errors in them
(pdf) or (Word)
NH CPP advocate, Bill Murphy, walks you through the steps to get legislation in your state:
Here are links to important helpful studies, articles, podcasts, interviews to help you when talking to legislators, media, doctors, etc. These are about the false narrative, the litigation narrative, PDMP, NarxCare, CDC Guidelines, PROP, Conflicts Of Interest, etc.
We will add new links as they come out.
Overdose, opioid treatment admissions and prescription opioid pain reliever relationships: United States, 2010-2019
New Data on Opioid Dose Reduction - Implications for Patient Safety - Jama -Dr. Stefan Kertesz
The Opioid Crackdown Leaves Chronic Pain Patients In Limbo - The Hill
Greg Gutfeld: We Should Legalize Drugs And Here's Why - Fox News
Pain Med Prescriptions Did Not Cause The Opioid Epidemic, Courts Rule - Las Vegas news, George Knapp interviews Dr. Dan Laird
Against The Pain: The Opioid Crisis and Medication Access - NPR, radio show
PROP's Disproportionate Influence On U.S. Opioid Policy: The Harms Of Intended Consequences - Pallimed
Roger Chou's Undisclosed Conflicts Of Interest: How The CDC's 2016 Guideline For Prescribing Opioids Lost It's Clinical And Professional Integrity - Pallimed
The Pain Was Unbearable So Why Did Doctors Turn Her Away? - Wired
Prescription Drug Monitoring Programs: Effects On Opioid Prescribing And Drug overdose Mortality - Reason
Dosing Discrimination: Regulating PDMP Risk Scores - Law Journal
How Fear, Misinformation, Stigma Have Devastated US Pain Patients - Filter
Physician Convicted Of Illegally Prescribing Opioids Says The DEA Has Turned Doctoring Into 'Another Aspect Of The War On Drugs.' - Chicago Tribune
How Drug Warriors Made The 'Opioid Epidemic' Deadlier- Reason
If Lawmakers Really Want To "Follow The Science" They Will Repeal Codified Opioid Guidelines - Cato Institute
A New Study Finds No Relationship Between Opioid Prescriptions And Unintentional Injury Deaths - Reason
ASA Urges Changes To Draft Updated CDC Guideline For Prescribing Opioids - ASA
Time To Revamp CDC's Problematic 2016 Opioid Rx Guideline - AMA
A New Study Finds That Reducing Pain Medication is Associated With An Increased Risk Of Overdose And Suicide - Reason
CDC's Crackdown on Opioid Pain Medications is Abysmal Failure - Didn't Fix the Crisis and Americans are Suffering with Severe Pain - Gateway Pundit from Fox News story
Evaluating the Stability of Opioid Efficacy over 12 months in patients with chronic noncancer pain (shows opioids work)
Document in Word
Document in PDF
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.
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 Health, Yale Journal of Health Policy, Law, and Ethics, American Journal of Law & Medicine, Journal 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 Review, Duke Law Journal, Northwestern University Law Review, UCLA Law Review, North 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
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.
Reason bio page: https://reason.org/author/jacob-rich/
Links to topics mentioned:
Links to podcasts or presentations in their entirety that were shared in this podcast -
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.
Link to episode
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
"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.