By Akilah A. Jefferson Shah, M.D., MSc
This article originally appeared in Huff Post
I am Black. I am a woman. I am a physician.
My education took me from public schools in New Orleans, Louisiana, to the Ivy League halls of Brown University. I returned to post-Katrina New Orleans for my medical education, then went to the Washington, D.C., area for an internal medicine residency and allergy and immunology fellowship training at the National Institutes of Health (NIH).
I’ve practiced medicine on both coasts. I was one of only six Black students in my medical school class, one of a mere three Black residents in my residency class and the only Black allergy and immunology fellow in my class. I was the only Black physician in my group at my last hospital appointment. I am very aware of my Blackness, yet the impact of COVID-19’s racial disparities still surprised me. (I am aware of the impact of COVID-19 on all communities of color, but as a Black woman I have chosen to focus this essay on my personal experience and perspective.)
During a recent Zoom conference call with colleagues, I suddenly realized that, while I have had several family members, family friends and acquaintances who have fallen ill with and died of COVID-19, my colleagues have had none. The single obvious difference between my colleagues and me? I am Black, and New Orleans is my hometown.
In my family, five cousins tested positive for COVID-19. Two recovered quickly. One required ventilator support and recovered. Sadly, two died. Another cousin, a nurse, developed symptoms after caring for COVID-19 patients, but ultimately tested negative (I am convinced it was a false negative result). Each day there is another call, text or post about someone I know who has gotten sick or passed away from COVID-19. The grief and anxiety is profound, especially when compounded by recent news of police violence against and harassment of Black people.
I know I am not alone. A recent poll showed Black Americans are twice as likely to know someone who has tested positive or died from COVID-19. Why? It is complicated. Underlying health disparities and social determinants of health play a large role. But, Black Americans have also had less access to COVID-19 testing and medical care. We have been turned away from testing sites, and our symptoms have been minimized. For too many, this has proven fatal. For others it is yet another reminder that Black Americans are not afforded the same opportunities as other Americans, even during a pandemic.
Exclusion of Black Americans is not new. I have studied and researched racism, bias, ignorance and misconceptions in medicine and clinical research. I think about issues related to access to fair opportunities to good medical care and work to ensure access for my patients.
Each day there is another call, text or post about someone I know who has gotten sick or passed away from COVID-19. The grief and anxiety is profound, especially when compounded by recent news of police violence against and harassment of Black people.
During my allergy and immunology fellowship training, I started to think about how patients became research participants. At our institution, all of the patients are research subjects and had to be referred by a physician. What standards, benchmarks and criteria stood between the patient and access to our hospital? How did my patients get there? What barriers did they have to overcome to make it to my office?
I asked a patient once. He was a young Latinx boy from Florida. His parents were undocumented and Spanish-speaking. He told me that he told his doctor about our program and asked to be referred. The boy had to advocate for himself. His doctor obliged. How many Black Americans ask their doctors for assistance, advocate for their health, and are still denied? How many times have Black women been ignored after childbirth and died? How many times have Black people been told that they are not really in that much pain? How many times have Black people been blamed for their ailments?
Historically, Black Americans are underrepresented in research. Why? Implicit and explicit bias are known factors. Mistrust and a history of victimization too ― Tuskegee and Henrietta Lacks still loom large in communities of color. But studies show that Blacks are viewed by medical professionals as more challenging, less promising research participants, have more underlying co-morbid conditions, and most discouraging of all, they are often just not asked to participate. Simply put, we are excluded.
I have always understood the duality of America: Black and white. Male and female. Rich and poor. Healthy and sick. I have experienced it. I always think about it. In high school, when a white doctor thought I was lying about my pain, I ended up requiring surgery. In college, when my professor asked my opinion of slavery, I was the only Black person in the room. In medical school, when other students laughed at the private parts of our Black cadaver because they had “heard” about Black male anatomy, I was the only one offended. In residency, when a white male patient demanded a non-Black, non-female physician, I was embarrassed and angry. In fellowship, when my patient was happy and relieved to see that I, his doctor, was Black, I was one of the few who understood his relief. And, as an attending physician, when a white colleague said that our Black patient must not have a father in the home to help manage his medications because Black mothers “never” have Black fathers in the home, I confronted her ignorance.
All doctors are trained to listen to patients. Some listen more than others. The goal is to parse out the important information to find out what matters. When my Black patients speak, I listen a bit more closely. I know that those who are often ignored need more attention. I remember when I was 17 years old, in an emergency room, in pain, and ignored. I remember vowing never to treat my patients that way. I remember when my Black male patient who needed a lung transplant to survive knew that staff labeled him “difficult,” and that this was likely a death sentence for him. It was. I remember when my Black pediatric patient’s mother, also labeled “difficult,” told me about her own medical problems she was dealing with, in addition to her son’s severe asthma. When I sat and listened closely, we made a plan to ensure her son’s care would be less burdensome for their family.
To date, there are no FDA-approved COVID-19 treatments, and access to experimental treatments is through clinical research trials. When COVID-19 patients are admitted to hospitals, the sickest require experimental drugs to survive. They are not only sick patients, but now also research participants. Who is advocating for them? Who is listening to them? Who is ensuring their access to the best available treatments? Who is deciding who gets recruited into a clinical trial and who does not?
My colleagues and I have many common experiences. We all attended top-tier medical schools and training programs, and have worked at prestigious institutions. But my Blackness still sets me apart. I live in a different America. My grandparents lived in a different America. My parents, sisters, nieces and nephews live in a different America. Black people live in a different America. COVID-19 has shown this. Birdwatching in Central Park has shown this. Continued police brutality has shown this.
My colleagues and I have many common experiences. We all attended top-tier medical schools and training programs, and have worked at prestigious institutions. But my Blackness still sets me apart. I live in a different America.
Yes, I hope the research enterprise during this pandemic will not be biased. I hope that Black Americans will be included in COVID-19 research. But, historic precedent is not favorable. If I contract COVID-19 and become severely ill, how will I be treated? Will I be afforded a fair opportunity to experimental treatments? Will I be treated the same as my colleagues?
Despite federal legislation mandating inclusion of women and people of color in NIH-funded research, participation of minorities in research has remained stagnant. Underrepresenting racial/ethnic minorities limits generalizability of research study findings, perpetuates disparities in access to high-quality health care, and contributes to disparities in treatment outcomes and survival.
What can we do? New legislation should give the regulatory power needed to incentivize inclusion of minorities in non-NIH-funded research, which make up the majority of studies. Additionally, public-private partnerships are needed to operationalize effective responses to community and nation-wide needs in research infrastructures.
The NIH and FDA announced public-private partnership initiatives to streamline development of COVID-19 diagnostics, therapeutics, and vaccines, but there is no mention of a focus on equitable access in these plans. And even though it may seem like the equitable approach to take, color-blind, race-neutral approaches must be avoided. Such frameworks allow for silent complicity in maintaining the social structures that underly Black Americans’ baseline poorer health status.
While many American lives have been merely inconvenienced by COVID-19, my community has been devastated. As I watch what’s happening, I am devastated. Black Americans cannot be denied an opportunity to assist in finding solutions to COVID-19. Our inclusion is a matter of life and death.
Akilah A. Jefferson Shah is an NIH-trained allergist and immunologist. She is also an expert in health policy and bioethics. Her work focuses on the intersections of health care, clinical research, health disparities, health policy and ethics. She is from New Orleans, Louisiana. Follow her on Twitter, Facebook and Instagram.