Opioid use stigma may underlie clinician biases towards patients with sickle cell disease
University of Chicago Medical Center
In season 1, episode 2 of the popular show The Pitt, a Black woman with sickle cell disease arrives at the emergency department in acute pain, only to be initially dismissed as drug-seeking.
“Unfortunately, this contemporary media portrayal is all too relevant,” said Austin Wesevich, MD, MPH, MS, a hematologist and health services researcher at the University of Chicago Medicine. “Nationwide, patients with sickle cell disease are not receiving the same quality of care that other patients experience.”
New research led by Wesevich and colleagues at UChicago Medicine unpacks the intersectional biases that may underlie this disparity in care quality. Published in JAMA Network Open, the study looked for associations between the presence of negative descriptors in clinician notes and the overlapping stigmatized factors of race, chronic pain, and opioid treatment among patients with sickle cell disease — most of whom are Black.
This study builds directly on important research published in 2022, which found that Black patients had more than 2.5 times the odds of having negative descriptors in clinician notes compared to white patients. Another study from 2024 explored the downstream effects clinician biases can have on the quality of care patients receive, finding that when clinicians hear a patient described with negatively biased language, they have less empathy for the patient and, in some cases, less accurately recall the patient’s critical health details.
“Part of the issue for Black patients — and many marginalized groups — is that many in this population have multiple social identities that may be stigmatized because of income, immigration status, gender, or other factors. So when patients experience discrimination in healthcare, it is challenging to pinpoint what identity may be triggering the behavior,” said senior author Monica Peek, MD, MPH, the Ellen H. Block Professor for Health Justice at UChicago Medicine. “With this paper, our goal was to try and isolate the effect of race, chronic illness, and opioid use in order to understand how clinicians respond to each one and what that means for the care they deliver to patients with sickle cell disease.”
The team used natural language processing and machine learning to search the electronic health records of over 18,000 adult patients, including almost 40,000 clinician notes, for sentences containing a negative patient descriptor such as “aggressive,” “noncooperative,” or “noncompliant.” Patients with sickle cell disease were compared to four groups of people without sickle cell disease: patients who racially identified as Black, patients diagnosed with chronic pain, patients diagnosed with opioid use disorder, and patients who had none of these identities or diagnoses. The researchers found that patients with sickle cell disease had higher odds of having negative descriptors in their electronic health record compared with Black patients and patients with chronic pain, but had similar odds of negative descriptors as patients with opioid use disorder, suggesting that bias toward patients with sickle cell disease may be most strongly tied to opioid use stigma. Non-Black patients without sickle cell disease, chronic pain or opioid use disorder had fewer negative descriptors than the other patient groups.
“Although patients with sickle cell disease routinely use opioid medications to manage their chronic pain, the vast majority do not have an opioid use disorder,” Peek pointed out. “It is a testament to the strength of their character that they do their best to live full lives while managing debilitating pain with the minimum amount of medication. And yet, within health professions and society as a whole, there is a persistent bias that stereotypes these patients primarily as ‘drug-seekers’ rather than regular people managing a chronic disease.”
Fortunately, this is not where the story ends: this newly published work is just part of the first phase of a three-part project. Wesevich, Peek, and other colleagues at UChicago Medicine have developed an educational intervention aimed at mitigating bias related to sickle cell care. Putting adult learning theory into practice, they designed an anti-bias curriculum that includes skills-based learning using roleplay alongside clear explanations of the ways negative biases tangibly reduce care quality.
“Clinicians cannot measure pain directly without asking the patient, so it’s a choice to believe patients when they share their pain levels,” Wesevich said. “Some of us have been medically trained to try to objectively measure pain through heart rate and physical exams, but the reality is that there must be some level of trust, especially because someone coming in with an acute flare on top of their chronic pain may not show the physical or behavioral signs we’re psychologically programmed to expect. Even if they behave very differently from someone experiencing appendicitis or childbirth, a patient with sickle cell disease who experiences daily pain and who happens to be Black and asking for opioid treatment deserves no less trust than any other patient.”
The curriculum has been delivered to almost 70 UChicago Medicine residents during the 2025-2026 academic year, and although data collection is still ongoing, there are early signs that the intervention is effective. Other academic institutions and community organizations are already interested in delivering the intervention at their centers.
“This work sheds light on issues patients have been experiencing for many years, and we’re not only paying attention to it — we’re doing something about it,” Wesevich said. “We need effective anti-bias interventions to improve care for patients with sickle cell disease, and this deeper understanding is a step in the right direction.”
This work is funded by the ABIM Foundation and by a Bucksbaum-Siegler Institute pilot grant.
“Negative Descriptors of Patients With Sickle Cell Disease in the Electronic Health Record” was published in JAMA Network Open in April 2026. Co-authors are Austin Wesevich, Alexandria Vangelatos, Michael Sun, Elizabeth Tung and Monica Peek.
Journal
JAMA Network Open
Method of Research
Data/statistical analysis
Subject of Research
People
Article Title
Negative Descriptors of Patients With Sickle Cell Disease in the Electronic Health Record
Article Publication Date
13-Apr-2026
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