Persons like me in long term recovery can face horrible treatment if it becomes known we have had a substance use disorder. This is particularly true when we may need controlled substances as part of our legitimate medical care. There are now algorithms being used to scan our personal and medical data to see if we may be drug seekers. If you get identified as a drug addict, you are likely to get treated poorly, kicked out, and not helped. If we want to get more Americans into sustained recovery, we need to start treating people more fairly in our medical care systems. This must include fixing how we identify and provide care to persons with suspected addiction in our hospitals and doctors’ offices.
A number of years back, I had a dental emergency. I have had a few of those in my life, unfortunately. I had a procedure and the antibiotics the dentist gave me were not strong enough. The infection came roaring back with a vengeance. The side of my face looked like I had a golf ball in my cheek. It is the most pain I have ever experienced. A 10 on the pain scale. This occurred while I was visiting family in Western Pennsylvania. It got really bad in the middle of the night. I went into a rural hospital and asked for help. The staff took turns coming into the room to look at me. I was a sight, and I am sure everyone wanted to see the patient who looked like a squirrel with an acorn in his mouth.
They wrote out scripts for a more powerful antibiotic and gave me a strong opioid to provide some relief. I recall them mentioning it was addictive and if I knew that there were risks. I told them I was a clinician who worked in addictions, and I did know that the meds I needed that night were addictive. I did not tell them I was in recovery. I was afraid that they would leave me in excruciating pain. I have experienced horrible treatment at the hands of medical staff who became aware I had a history of substance use issues. It does not even matter that I am in recovery. I have had hundreds of patients I have worked with who recounted similar tales of unprofessional care at the hands of doctors and nurses. I could not tell them I was in recovery; I did not want the same to happen to me on this night with that agonizing pain.
I got the meds and went to stay with my family. I took the meds and switched over to an NSAID as soon as the antibiotics began to work. I let my family know I was taking an opioid. That is my standard protocol for the handful of times in 36 years of recovery I have needed to take medicine with an addictive potential. It was what I needed. I got through it fine with zero impact on my recovery. Society has a stigmatized view of people like me, that any use of a medication results in a relapse. It is simply not reality. It just means we need to be a little more cautious and practice good self-care. We are just as capable of doing so as a diabetic is capable of navigating a day with dietary risks.
I have been thinking after reading this journal article from the annals of Emergency Medicine, In a World of Stigma and Bias, Can a Computer Algorithm Really Predict Overdose Risk? Bamboo Health has developed software that gathers peoples data to determine an overdose risk score called NarxCare. It uses an algorithm and there are reports emerging that far too often patients with legitimate medical problems end up being scored as potential drug addicts. They are then treated like pariahs by medical professionals, not offered help but kicked to the curb and treated like criminals.
As this article notes, NarxCare gathers information like criminal records, sexual abuse history, distance traveled to fill a prescriptions and even pet prescriptions to assign risk scores to each person. Minorities score higher as our criminal justice system has historically targeted Black, Indigenous, and people of color for drug crimes and arrested them at higher rates than whites. Women who have more documented sexual trauma than men get scored higher. How does addiction treatment or self-identified recovery score on the algorithm? That is proprietary.
A recent and quite comprehensive legal review, published in the California Law Review, Dosing Discrimination: Regulating PDMP Risk Scores, by Jennifer D. Oliva, Esq, Associate Dean for Faculty Research and Development, Professor of Law, and Director, Center for Health & Pharmaceutical Law, Seton Hall University School of Law notes that:
“NarxCare risk scoring likely exacerbates existing disparities in chronic pain treatment for Black patients, women, individuals who are socioeconomically marginalized, rural individuals, and patients with complex, co-morbid disabilities and OUD.”
Professor Oliva has found that the software flags people who are rural and travel far for medical care or pay cash and use multiple payment methods. Such payment methods are often used by people who uninsured or underinsured. They scramble to try and find ways to pay for their medication.
If your sexual trauma history gets in your medical record, you may end up not being able to obtain the same medical care as others as you could get flagged as a potential drug addict at risk for overdose. As I noted, the software is proprietary. Not open for validation and not regulated. Oliva notes in her detailed legal review of the software that:
“there are no other examples of automated predictive risk scoring models created primarily for law enforcement surveillance that are used in clinical practice. This is likely because such cross-over use of risk assessment tools is ill advised. That stated, to the extent that clinicians do use PDMP risk scores to inform or determine patient treatment, PDMP software platforms ought to be subject to the same regulatory oversight as other health care predictive analytic tools used for similar purposes. The significant questions raised about PDMP risk score accuracy and such risk scores’ potential to disparately impact the health and well-being of marginalized patients demand immediate regulatory attention.”
This article at Wired.com writes about a woman who was kicked out of receiving services from her primary care provider. Her dogs were prescribed opioids and benzodiazepines. That gave her a high score for potential addiction. She became a person to be gotten rid of, not helped. She became a medial care pariah. She got the drug addict treatment, she was shown the door and terminated from care. This proprietary software influences medical care for millions of Americans. I found that Rite Aid uses it in Pennsylvania and 11 other states as does Walmart and CVS.
As noted above, it appears that instead of being used to help get persons who are at risk for addiction help, the software is often used to remove persons from care. I ran across countless stories where that was the outcome. This may stem from fear that doctors and pharmacist have of DEA sanctions. As persons on such medications face withdrawal as they are sent to the streets, it may actually result in increasing the overdose risks of patients it identifies as being at high risk.
When it is in error, there is little recourse for the patient. It is highly unlikely it will be corrected. Once you get flagged by this unvalidated proprietary software as a drug addict, good luck clearing it from your electronic health record. Persons in recovery have every reason to fear how the flow of such information will influence their treatment. We have a system of care designed to find and fail us. You have the right to request that something be removed from your electronic health record. Your medical provider is required to respond, but they can just say no. This study, done in 2014, found that if you requested a change to your medical record in regard to drug seeking behavior, your request had less than a 10% chance of being approved. Marked for life. The letter A for drug addict written into your EHR for eternity.
As addiction is a medical disorder, we should be providing medical care to a person with a substance use disorder as we would say a diabetic. Without judgement and with the same care and concern as any other patient. We do not do so in America. Being treated like a drug addict in America means being treated like an outcast. A member of an unclean caste. This says a lot about how far we have to go in respect to proper care for addiction in America.
What other medical condition would the use of unvalidated, proprietary software be used to guide medical care? Hundreds of thousands of persons like me across America are forced to think about medical care bias against us every time we seek help. We must change how we treat people with substance misuse issues and those of us in recovery. We need to be cared for respectfully and with compassion, just like what we expect for any other medical condition.
Last year, I wrote this piece, “Take the Drug Addicts Out to the Hospital Parking Lot and Shoot Them.” I suggested then we need stronger privacy laws and that we must hold medical professionals accountable for discrimination in the treatment of persons having or suspected as having a substance use disorder. We need to have zero-tolerance policies on discriminatory treatment of persons with a substance use disorder written into every hospital policy. They should include strong administrative sanctions for all staff who discriminate against us and everyone who witnesses it and fails to report it. Put such policies in place in every medical institution in the country.
How can we get more people into recovery in a system of care that acts so punitively towards us? If we want to increase the number of Americans in recovery, we must improve the care provided to persons with substance use disorders. We need to ask hard questions about how such algorithms impact a person who has or is suspected of having a substance use disorder. We must receive the same standard of care as everyone else. We must stop medical care bias against us.
We will know when we have a healthcare system that works for persons like me with substance use disorders when people like me do not have to be afraid of being identified as having a history of substance use disorders in our medical care systems. When we experience no shame, no negative judgment, and no disparate care we will have arrived at where we need to be. A day when we no longer live in fear of these algorithms of discrimination. We have a long way to go to meet that standard, but we must work towards it if we are to actually help the millions of Americans who need help with a substance use disorder.
9 thoughts on “The Algorithm of Medical Care Discrimination”
For me, this line is the most salient, “it appears that instead of being used to help get persons who are at risk for addiction help, the software is often used to remove persons from care.”
I’ve known a lot of patients to relapse and, in some cases, die following the prescription of an opioid, benzo, or stimulant.
From the perspective of that experience, I welcome an algorithm that prompts providers to assess risk, consider other options, and work with the patient to select the best plan and mitigate any risks.
Used to enhance care, this could be a very good thing. Used to profile and discriminate against minorities and at-risk patients, it sounds like a tool for stigma.
I hope there’s an iterative process to improve both the tool and its implementation.
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I see this topic a touching on a trend. And it’s one less easy to recognize than the one we are all familiar with by now: the overt mismanagement of the topic of pain. As we all know by now, pain became the fifth vital sign and the rest is history.
During those same decades, the idea of “safety” in medical settings became more and more formalized. One emblem of the mismanagement of the topic of safety is held inside the literal moniker “safety committee.” Many organizations have one. Across the decades of my career I have studied what a committee is and how a committee functions. There are some very good examples of how to design one, how it goes about being helpful, and so forth. And there are distasterous examples – full of personality, personal goals, group-think, self-assigned authority, and so forth.
But I digress. My main point is that I’ve also spent that same time studying “effectiveness” vs “safety” as it pertains to organizational leadership and committees going off the rails. In my opinion your topic touches on this sometimes hard-to-spot phenomenon. I’ll say it clearly: healthcare in many ways has for some time now been leaning ever more toward the putting safety first, and putting effectiveness second. Safety for the organization’s sake can be disguised as safety for the patient.
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Excellent point. The focus becomes reducing risk for the agency above ethical care for the patients
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I agree. This is part of what happens when these processes are run without inclusion of people in recovery
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And it’s unfortunately what occurs when treatment is not individually tailored. I’ve been posting my experience with a local community outpatient clinic on WordPress. Hopefully one of the many experts who treat addicts might one day read it and benefit. Accept this gift free of charge!👍 Thank you
If you test positive for covid, the hospital will try to sedate and intubate you and give you the kidney-destroying remdesivir. Why?
There are 100,000 reasons.
A while back, a few of us at a treatment agency developed the document below to support a conversation with clients about communicating with their medical providers about their status as persons in recovery. Having read your article “The Algorithm of Medical Care Discrimination,” I’m wondering how this might be amended to support effective conversations with providers AND avoid the concerns you raise.
Things Persons in Recovery Need to Consider When Anticipating Surgery or Other Medical Procedures
1. Up front, explain to your doctor and other medical providers that you are an alcoholic and/or addict and have concerns about the use of any mood altering or addictive medications. Keeping this a secret from your medication prescribers is dangerous to your recovery. If they don’t seem to understand addiction, and your concerns related to these medications, ask others to help you explain. If you are not confident your medical providers understand your concerns, consider finding another medical provider.
2. Before the procedure/surgery, take someone that knows about addiction with you to your doctor’s appointments. This might be your sponsor or a sober support. They can ask questions you might not think of or that you forget to ask. Later, they can help you remember the things that the doctor said.
3. Build your network of sober supports and a “Sobriety Safety Net” before the surgery or procedure. This can include increasing your list of support phone numbers, having your sponsor and supports schedule times when they can call or stop by to visit and hold meetings at your home while you are recovering. Do what you can to boost your recovery ahead of time. Go to extra meetings, read the Big Book and Basic Text more often – don’t just do the normal, do more and build up your “Spiritual Fitness”!
4. If you will need any sobriety challenging medications after the procedure, arrange for someone else hold on to and manage the medications for you. Let them watch the clock and count the pills. Remember the 1st Step – If you’re powerless over mood altering substances, don’t try to be powerful enough to dose yourself safely.
5. At times you may feel distressed/guilty/triggered/etc. while you are taking some medications – this is a normal response for people in recovery. You are not crazy, and being transparent by talking about your thoughts and feelings, will help a lot.
6. When you stop some medications, particularly pain medication, you may experience some symptoms of detox/withdrawal – this is also normal, you are not crazy.
7. It might be helpful to seek out a pain management/addiction specialist to help you plan for an effective surgery or procedure and follow-up afterwards.
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It looks like a good plan to me, I would tell clients very similar things. Personally, I have always made sure that my primary care physician is totally aware.
The question becomes what happens when you get placed on some list and treated poorly. There need to be ways to address medical care mistreatment.
Ok but even with these provisions in place. Discrimination can occur. Eliminating stigma would be the best bet I’d imagine
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