By Marya Shegog, PhD, MPH, CHES: Health Equity and Diversity Coordinator, Lazarex Cancer Foundation
There is so much talk about “minorities” resistance or refusal to the COVID vaccination and, for that matter, clinical trials. The reason is often linked to Syphilis in the Negro Male (Centers for Disease Control and Prevention, 2020). The trauma from that experiment is real but I think it is being given too much power in the context of today. Black folks do not need to reach back almost 50 years to the Tuskegee experiment to develop a healthy distrust of the medical system. Most people of color have had at least one bad experience with a doctor, nurse, physician’s assistant. The fact is the practice of medicine has been taught from a white male perspective. How diseases are identified to how they are treated, inclusive of the medications designed to treat conditions, have been developed from a white male perspective. For example, HIV symptoms are usually described as flu like symptoms however that is in men; often in women HIV appears as a recurring /incurable yeast infection and that is how we ended up with hundreds of women dead in the Baltimore morgue (Gladwell, 2000). There is no shortage of conditions that are established among a select few which lead to situation after situation where people, many minorities, are dismissed or misdiagnosed.
When a person of color goes to a health care provider with a physical challenge and is told that their very real problem is a figment of their imagination or a manifestation of a mental disorder, they go home to question themselves. In some cases, they have the time, resources, and tenacity to go seek another opinion but far too often they go home to die. This is where the distrust of the medical system is born today. Almost every person of color has experienced this exact situation or knows of or has lost someone to this very real scenario.
This is a systematic bias that contributes to the health disparities. It is what makes people of color scared to trust a doctor much less a vaccine or a trial of a novel drug. It is the system that is ignorant not the people.
This is the same system that continues to allow new drugs to market that target a disease most prevalent among people of color, but most of the participants in the trial were white. How is this possible you a may ask? Quite simply because the systems in place require a drug to be established as effective but not effective within the communities where the condition occurs most. It is the system that sent Dr. Susan Moore home multiple times and opted out of providing her medical attention resulting in her untimely death from COVID-19 (Eligon, 2020; Murphy, 2020), all the while blaming her as a Black woman for being “too intimidating,” to receive care. It was the system that blamed Dr. Shalon Irving for being a single, Black mother instead of diagnosing and treating her very real condition that resulted in her daughter being a motherless child (Nina & Renee, 2017). It is this system that people of color do not trust. It is this system that makes people resistant to participate in trials and take a newly fast tracked vaccine.
It is this system that we must disrupt, dismantle, and destroy. It must be attacked by all angles. We must encourage our medical schools to teach disease states and treatments from more than the white male perspective and, actively participate in creating more physicians of color. We must hold pharmaceutical companies accountable in their creation of new drugs so that they must establish not only that they work but they work in multiple populations and, especially within the population that is most impacted by the condition. We must hold the FDA accountable and demand they require statistics that reflect effectiveness in a diverse population. We must as patients reject physicians and healthcare workers who disregard our symptoms but most of all we must be willing to participate. We must take the vaccination and participate in the trials where applicable. We must be willing to challenge the medical professionals and navigate a broken healthcare system for our best health outcomes. We Must.
Dr. Marya Shegog’s bio can be found here.
Centers for Disease Control and Prevention. (2020, March 2). The Tuskeegee Timeline. Atlanta, Georgia, USA. Retrieved from https://www.cdc.gov/tuskegee/timeline.htm
Eligon, J. (2020, December 23). Black Doctor Dies of Covid-19 After Complaining of Racist Treatment . New York Times, pp. Section A, Page 4.
Gladwell, M. (2000). The Tipping Point. New York : Little, Brown and Company.
Murphy, D. (2020, December 24). Directly addressing the issue of racial equity in our facilities. Indiana University Health Media/Press Release . Indianapolis, Indianna , USA . Retrieved from https://iuhealth.org/for-media/press-releases/directly-addressing-the-issue-of-racial-equity-in-our-facilities
Nina , M., & Renee , M. (2017, December 7). Black Mothers Keep Dying After Giving Birth. Shalon Irving’s Story Explains Why. Retrieved from NPR.ORG: https://www.npr.org/2017/12/07/568948782/black-mothers-keep-dying-after-giving-birth-shalon-irvings-story-explains-why