To the Editor—Sickle Cell disease (SCD) affects approximately 100,000 Americans, occurring in about 1 out of every 365 African American births and 1 out of every 16,300 Hispanic American births.1 About 1 in 13 African American babies is born with sickle cell trait (SCT), meaning they carry the gene for SCD but may not experience any symptoms.1 In the United States, the exact number of people who have SCD is unknown.
There is bias in emergency rooms (ER) when it comes to treating patients with SCD. I have witnessed this bias firsthand working in health care as a licensed practical nurse and have experienced bias from ER physicians throughout Eastern North Carolina as a patient and family member. I live with SCD genotype Hgb SS, and I founded The Robinson’s Sickle Cell Foundation with my mother Julia Robinson in 2016 after the loss of my sibling at age 14 of complications from SCD. This nonprofit community-based organization aims to bring awareness, advocacy, education, and support to those living with SCD in Eastern North Carolina.
In my experience with the treatment for SCD, we are not recognized as experts of our own disease experience. This becomes an equity issue since most people affected by SCD are of African American descent. Both adults and adolescents with SCD have reported feeling stigmatized, waiting longer than other patients to see a physician, or having their pain discredited as “drug-seeking” in health care settings.2–4 Bias can cause delays in medical treatment that can increase organ damage and other detrimental conditions related to SCD, such as stroke. It can result in less preventive care, poorer disease management, and poor compliance with treatment that can led to premature death.3 Bias makes patients feel belittled, incompetent, and frightened. Physicians should take all complaints of pain from patients with SCD seriously and treat them promptly with appropriate fluids and pain medication.
I’ve experienced physicians denying pain medication when in a vaso-occlusive crisis. I’ve known others with SCD to state that they have been talked to degradingly and felt ignored. To stop this bias, physicians should listen by slowing down, making eye contact with patients, and most of all not being afraid to treat SCD. I encourage physicians to obtain continuing education units (CEUs) and the state NC Sickle Cell Syndrome program to implement racial implicit bias training annually for all clinicians in emergency care.5 SCD patients should consult with their physician SCD team at their hospital or clinic to develop an individualized plan of care.6 This could help with delay of care, stigma, and bias. When possible, physicians should make these plans available in the electronic medical record and patients should have a physical copy on hand to help in the case of denial of proper treatment.6
The emergency room may be a patient’s only option for health care when symptoms, such as pain crises, cannot be managed at home or when a patient does not have access to a health care provider who specializes in treating SCD. Physicians should treat all patients with dignity and respect to help decrease the impact of implicit bias for those who are affected by SCD.
Acknowledgments
The author is the Founder and CEO of The Robinson’s Sickle Cell Foundation, Inc.