Another Statistic: Protecting our Sickle Cell Disease Patients from the Pain of Prejudiced Care

He stumbled into our room, his little legs collapsing just before reaching my side of the bed. 

Somewhere between a whisper and a groan, he murmured, “Mommy, it hurts.”  Then he curled his six-year old body into ball and collapsed onto the floor.  

It was Christmas Day, 2018.  And for the first time in six years, we were not able to manage Jackson’s sickle cell disease (SCD) pain crisis at home with oral medication.  

Sickle Cell Disease and the Black and Brown Communities 

Sickle Cell Disease (SCD) is a group of inherited blood disorders that disproportionately affects Black and brown communities.  It occurs when the SCD patient has an atypical blood molecule called, Hemoglobin S—making the red blood cell crescent-shaped, or sickled.  

When sickled, the blood does not carry oxygen well, making the patient anemic.  The sickled blood cell is also painful as it moves through the blood vessels, depriving the organs of oxygen-rich blood.  During these times of crises, the patient is at risk for organ damage to the lungs, kidney, spleen, and brain.  There is currently no universal cure. 

In between my son’s moans, he had protested he would miss Santa. We promptly prepared him for the ED by getting him dressed—while I mentally, spiritually, and physically prepared to debunk a stereotype that I have encountered countless times personally and professionally:  

Young African-American male, underinsured, with sickle cell history presents in pain possibly seeking pain meds, accompanied by single, undereducated African-American using the ED as primary care.  

I performed a familiar routine that morning to make sure nothing about my appearance would give the hospital any reason to make snap judgments. Make-up? Check. Ivy league medical school sweatshirt? Check. Wedding ring? Check. Insurance card? Check.

My husband had remained behind with our other two children as Jackson and I headed to the ED. We hoped our ED encounter would consist of Jackson receiving needed pain meds and prompt relief so that we would be home in time for Christmas dinner.  However, that was not the case.

Seeing the Other Side: Viewing Encounters Through a Patient’s Eyes

Jackson received intravenous (IV) pain medication, and within half an hour, he was quiet, which signaled relief.  When his nurse asked if he was ready to go home, he mustered a weak “Yes” and the nurse alerted our doctor as I wondered was that it? 

There had been no pain assessment, no exam. In addition, a significant amount of time also had not passed to ascertain if we could convert back to oral medication for control.

Jackson was formally discharged until I, as a doctor myself, lobbied our doctor to rescind the discharge and return to my son’s bedside. She tried to convince me he was fine to go home and, once there, “just give him oxy.”  It was not until I picked Jackson up off the gurney, had him stand and let her watch him fall to the floor, that she rescinded the discharge. She added further, “You know we’re going to have to stick him again, right?”  

I felt my intelligence insulted on every level.  As a physician, and mother of a sickle cell warrior, I knew that “sticks” are simply a means to an end.

How a doctor treats the patient’s parent is a strong indicator of the care the patient will also receive. As grateful as I was for my own medical training—I also knew that many other patients were likely facing these same biases without a medical degree. I could advocate for my son, relying on my credentials, but I knew that other parents of patients of color would not have that same luxury.  

The Role and Impact of Bias in Patient Care

Several studies have been conducted showing that, generally, white doctors implicitly prefer to care for white patients, which can affect medical decision-making. If this seems extreme, consider that the implicit biases individuals hold will not necessarily align with their conscious or declared beliefs. With unidentified and unaddressed biases, even well-meaning physicians can hold subconscious biases which ultimately lower the levels of patient care given.  

The impact of this bias is significant. Even when controlling for socioeconomic status, education, gender, and insurance, poorer outcomes have been reported for African-American patients with respect to heart disease, HIV, and total knee replacements based on beliefs rooted in stereotypes. COVID-19 has further highlighted the disparities in healthcare, with Blacks dying at a rate of 92.3 per 100,000, while whites die at a rate of 45.2 per 100,000.  And don’t even get me started on maternal morbidity and mortality rates.

Bias also impacts patient care more subtly in the very training doctors receive in medical school. For example, in a recent Medscape article, the tendency of medical textbooks to include primarily photos of white patients is addressed. This lack of diversity poses problems when patients with black or brown skin enter with conditions that the doctor is unable to recognize due to the fact that he or she has not been taught how to identify these conditions on people of color. This initial oversight in training due to implicit biases perpetuated in schools can lead to misdiagnoses, undiagnosed conditions, and other negative outcomes in the long run for both the patients—and the providers that are unable to help them.  

Pain Management (and the Lack Thereof)

After advocating for Jackson, he was readmitted to the ED where he failed two more rounds of IV pain medications.  The doctor conceded that Jackson needed to be admitted to the inpatient Hematology/Oncology service.  I walked away from the desk, just as the nurse asked if pain medication should be included in the transfer orders.  It was finally time to breathe.  

Jackson’s pain returned while we awaited the transfer to the inpatient floor.  When we requested pain medicine, we were informed no pain medicine had been ordered for him. 

Let me repeat that. 

There were no pain medications ordered for a sickle cell patient who had been admitted to the hospital for a vaso-occlusive pain crisis.  

I spoke to a patient advocate, a nurse, the unit clerk, and finally Dr. Smith, again.  It would be an additional one and a half hours before Jackson received pain medication.

Unfortunately, Jackson’s story is not unique—countless studies show that Blacks and other people of color are under-prescribed when it comes to getting appropriate pain management. One study of 350 US EDs showed that nonwhite patients were 17-30 percent less likely to receive analgesic or narcotic medications than white patients. And current trends show that Black patients are less likely to be prescribed opioids, due to erroneous beliefs that either Blacks are at higher risk for addiction, or that they have higher tolerances for pain.

What Can be Done? Three Places to Start

The first step is admitting we have a problem.  All of us.  We all have implicit biases of which we need to be aware.  Numerous studies show unconscious bias affects our behavior towards others.  And there is evidence that as physicians, our hidden bias can negatively affect the treatment of patients—no matter how good or well-meaning our intentions are. 

Once we accept and acknowledge our biases, we can start to change them. Given my connection with the African-American community, and my experience with Jackson, I’d like to suggest three ways to start.   

1. Take an Implicit Association Test

Researchers at Harvard University, University of Virginia and University of Washington developed the Implicit Association Tests in an effort to allow individuals to discover their hidden beliefs based on race, ethnicity, gender, religion, culture, and other behaviors.  With the help of the IAT tool, the hope is that once biases are conscious, individuals will make positive behavioral changes.   

2. Form/Join committees that support diversity

Include individuals that represent the racial, ethnic, religious, etc. backgrounds of the community you are serving.  Diversity of thought tends to breed innovation.  New ideas often form as members from diverse backgrounds work towards a common goal.  Improved communication and better outcomes also result, because stakeholders are now actively engaged. 

3. Support Sickle Cell Disease Research

An estimated 100,000 people are living with SCD in the US, but because SCD is considered a “black and brown disease,” it has not traditionally received funding equal to other chronic, inherited diseases.  

For example, while SCD affects 1 in 365 Blacks in the US, cystic fibrosis (CF) affects 1 in 2500 Whites in the US.  Yet in a study published in March 30, 2020, CF studies were funded by NIH at rate 3 times the amount as SCD studies ($2807 [$175] per person vs $812 [$147] per person; P <.001).  The same study found that private industries were likely to grant funding to CF studies over SCD.  

The Sum Total of Our Experiences

I now remember Christmas Day 2018 as the day I was unable to shield my son from becoming a statistic.  

I was well aware of the evidence that minority patients often receive a lower quality of healthcare and a delay in services, producing poorer outcomes as a direct effect of implicit bias.  Now I was also aware that no amount of education and socioeconomic status could combat whatever hidden bias I faced. 

BJ Neblett wrote, “We are the sum total of our experiences. Those experiences – be they positive or negative – make us the person we are, at any given point in our lives.”   

With my experience, I decided to move forward with a solution-oriented mindset.  I now complete previously-avoided patient surveys, and I joined the hospital’s Sickle Cell Patient Advisory Board with the hopes that my input will make the experience better for all SCD patients.  

Right now, it is estimated that 80 percent of cost of healthcare of SCD is spent on hospitalization.  If we identify and work past our biases to ameliorate the funding disparities, encourage private industry to overcome the stigma and invest in research, those practices will lead to more effective treatment, better patient experiences, and a cure. 

Related Reading: A Physician, Not a Stereotype: The Role of Gender and Racial Implicit Bias in the Workplace

Terralon C. Knight, MD is Medical Director at United Healthcare and CEO of Knight Coaching, LLC. She is a native of Mississippi. She received her undergraduate degree in Biology from Tougaloo College. She obtained her medical degree from the Warren Alpert Medical School of Brown University and completed her family medicine residency at University of Texas at Houston. Dr. Knight has a passion for the underserved, with much of her career spent serving communities in the District of Columbia, Maryland and Virginia. She has been a Medical Director with United Healthcare for eight years.  She enjoys traveling, photography, and family game nights with her husband and three children. 

“Another Statistic: Protecting our Sickle Cell Disease Patients from the Pain of Prejudiced Care“ is part two of a two-part series by Dr. Knight on racial disparities in healthcare offered in collaboration with Collective Medical.  To read part one, “A Physician, Not a Stereotype: The Role of Gender and Racial Implicit Bias in the Workplace,” please check out the link here

The views, thoughts, and opinions expressed in the text belong solely to the author, and not necessarily to the author's employer, organization, committee or other group or individual.

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