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.  

• Bev's story about being denied opioids due to having been sexually abused
• What is the ORT (Opioid Risk Tool)?
• Dr. Webster's statement about the ORT being weaponized
• Study validating ORT/Updated version eliminating the sexual abuse question
• Dr. Webster says the original ORT should no longer be used
• What can you do to help?
• Letter to give to your doctor with this information

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.

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

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.

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.

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.