Fight Is In My DNA: Why I Volunteered For A COVID-19 Clinical Trial
Research that fails to include a diverse and representative population cannot be generalized or considered effective in all relevant groups.
October 16, 2020 at 2:16 pm
I grew up in a home where my father shouted, “Black power,” and demanded Black excellence. A man who marched on Washington, Timothy L. Pernell Sr. was one of the 250,000 plus Americans who packed the National Mall in bold display of their struggle for civil rights and in solidarity for their humanity. His father, Bishop John W. Pernell, who prayed for death-row inmates condemned to die in an unrighteous system, raised his children to be cognizant of the warped racist order that relegated Blacks to second-class citizens. You could say fight was in my father’s DNA.
My dad would spend 78 years staring down herculean odds whether in his professional life as a research scientist — though he had no college or advanced degree — or in his personal life when he overcame death sentences of his own through the support of medical miracles. Big Tim, as we called him, was winning on his own terms, and even in the homestretch of his life, he never stopped being the captain of his destiny. COPD tried. HIV/AIDs tried. Cancer tried. Even Jim Crow tried.
Then, six months ago, a pandemic capsized our world and the rhythm skipped a beat and flatlined. On April 13, somewhere between noon and 1 p.m., my father faded away and became one of the 215,000 and counting Americans who lost their lives to COVID-19. In April, New Jersey was a hot zone, and Essex County experienced the brunt of it. While I was working in a safety-net hospital in Newark, New Jersey, overwhelmed with hundreds of coronavirus patients, my father struggled to breathe in a different hospital four miles away.
My dad, who could bookmark so many historic occasions from his own eyewitness accounts, became a sobering statistic in a crisis that caught this nation off guard and woefully unprepared. This is the backdrop that fueled my personal decision to enroll in a COVID-19 vaccine trial and to embody every ounce of being a public health physician. I could hear my father in my ear, forever the scientist and forever the student of history, compelling me to operate in my self-efficacy and to fight misinformation with fact and vigilance.
The pandemic peaked in New Jersey in April with well over 4,000 new cases a day. But like New York and others in the region, public health science and data led the way. Public health measures like testing, contact tracing and physical distancing, and infection prevention guidelines (such as mask wearing, frequent hand washing and staying away from crowds) have been our most powerful tools in this war as frontline healthcare workers have held the line.
While New Jersey once had less than 150 new cases per day during the summer, the state now hovers around 1,000 new cases daily. In addition to the resurgence in the Northeast, across the country over 36 states are showing rising numbers. The United States is tracking above 50,000 new cases a day. And, the CDC estimates the nation could cross the threshold of 230,000 deaths by the end of October.
Given the surge in infections, the flu season looming and pandemic fatigue setting in, with political bad actors manipulating science and tweeting dangerous distortions, the scientific community has been hunkered down in finding a vaccine that can prevent the illness and therapeutic options to save lives. But has irrevocable damage been done to public trust in our medical and public health systems? Amidst this maelstrom, the public’s skepticism around a potential vaccine is on the rise. In a poll released in September, only about half of U.S. adults would definitely or probably get a vaccine to prevent COVID-19 if one were available today. This represents a startling drop from 72%in the same poll in May. This number is even lower among Blacks, from a high of 54%in May to only 32% in September. The dilemma thickens when we consider who should get priority access to the vaccine when it becomes available to ensure equity in the course of any ethical allotment and distribution.
Still, the process to investigate vaccines continues among this web of complexities.
The staggering toll on our nation cannot be ignored in the loved ones that bear the burdens of grief or the social and economic losses that have been collectively suffered. Coronavirus is listed as the third leading cause of death in the United States in 2020, only behind heart disease and cancer. Even more alarming are the devastating national trends that have revealed higher infection, hospitalization and mortality rates for Black, Indigenous and Latino communities. Black people are dying at twice the rate as whites, are hospitalized nearly five times more than whites and experience over two and half times the cases.
The weight of this truth is compounded by the racist trauma Black people and other persons of color have experienced in centuries of medical exploitation and the stubborn health disparities that stain the American healthcare system to this day. Our souls can’t erase the stories of enslaved Black women subjected to gynecological surgeries without anesthesia, Black bodies robbed from their sacred graves, or the Black mothers dying at three times the rate of white mothers, and Black babies that face worse outcomes when cared for by non-Black physicians.
Like we say the names of George Floyd, Trayvon Martin, Breonna Taylor and Sandra Bland, we speak the unknown names of those Black men abused in the Tuskegee Syphilis study and the name of Henrietta Lacks, who was a scientific pioneer without her knowledge or consent. Because of the sins of the past, there are now ethical guidelines in place, such as informed consent and study oversight, to ensure safety for all participants.
Even so, these injustices etched in our collective psyche coupled with inaction and insensitivity on the medical establishment’s part to squarely address the issue, along with barriers associated with access and under-recruitment, contribute to the meager participation of Black people in clinical research. But there is a cost to bear for this inequity.
Research that fails to include a diverse and representative population cannot be generalized or considered effective in all relevant groups. This gap in participation only worsens unequal health outcomes. It would be unethical for this disparity not to be combated in the face of a deadly pandemic that has particularly devastated Black lives.
At a minimum, COVID-19 vaccine trials should include demographics that match the U.S. population, but the National Institutes of Health has argued Black people and communities of color should participate at rates that are twice their percentage of the U.S. population (i.e. roughly 13%, especially since they have experienced disproportionate outcomes).
We are living in unprecedented times which require plain truths, moral clarity and consequential resolve. Each person walking in their agency, must demand accountability from institutions of power. Volunteering in a COVID-19 vaccine trial is an act of accountability for me. I understand that everyone may not make the same choice, but it is imperative that we all understand what is at stake and demand inclusion and equity in all pursuits of science.
And in the pursuit of an effective and just solution, we must persist — we always do. So, this is my fight. You could say the same fighting spirit in my father courses through my DNA.