The coronavirus disproportionately impacts people of color in dramatic ways, according to the Centers for Disease Control and Prevention’s data on deaths by race/ethnicity. But data is also showing that people of color are under represented in current vaccine trials.
Doctors said that presents a risk for minority groups when it comes to a potential vaccine.
“If Black and brown persons don’t participate in clinical research, it perpetuates the inequity,” said Dr. Chris Pernell, the chief strategic integration and health equity officer at University Hospital in Newark New Jersey.
She recently signed up to join Moderna’s phase 3 vaccine trial. It’s the same trial and vaccine that Kaiser Permanente is administering to volunteers in the Seattle area.
“It was my way of being a part of the solution,” Pernell said.
Part of the problem is researchers need to focus on recruiting people of color. But one major issue — minority groups are much more reluctant to participate in clinical trials. Historically, Black Americans participate in clinical research at about a rate of 5%.
“That’s just not adequate for the percentage of the population that we represent,” Pernell said.
Dr. Anna Wald has run clinical trials at UW Medicine for 30 years and is the head of the division of infectious diseases.
“Historically, people who participate are mostly young, white and pretty well educated,” Wald said.
She said a lack of diversity in clinical trials poses a potential for severe consequences, particularly for the minority groups most impacted by the virus. Black Americans die from COVID-19 at more than twice the rate of white Americans. Latinos are hospitalized at nearly three times the rate of whites.
“If we don’t people of color into these clinical trials, then it will be very difficult both to know what the product will be like in that population and also to be able to convince them to actually take the vaccine,” Wald said.
Essentially, if only white people participate in a clinical trial, then scientists can only ensure the vaccine works well for white people.
For Pernell, the decision to talk about this is personal.
“I lost my dad during this pandemic. He was 78 years old,” Pernell said.
She said her dad was a research scientist. He died April 13.
“That was the peak of the pandemic here in New Jersey. As I was working in one hospital — mere miles away, my father was fighting for his life in another hospital. It was a surreal experience. I wasn’t able to be physically with him,” Pernell said.
“We were hopeful that he could pull through, but it just became too much to bear,” she said.
The week after their family’s virtual funeral services, Pernell said her sister — a breast cancer survivor — also tested positive for the coronavirus.
“This pandemic has disproportionately impacted my family. So when we say that it has devastated Black and brown lives, I use my family’s example to just show what we mean by that,” Pernell said.
Her sister is still dealing with symptoms and is what’s called a “long hauler.”
“It has been arduous. She is still struggling with shortness of breath at times, but she’s putting one foot in front of the other. She’s fighting. She’s a survivor,” Pernell said.
Doctors agree that there are many good reasons for BIPOC (Black, Indigenous and people of color) communities to mistrust new medicine.
“Many people have concerns about being treated as guinea pigs and test subjects,” said Dr. Stephaun Wallace, a scientist with the Vaccine and Infectious Disease Division at Fred Hutch. He works for the COVID-19 Prevention Network (CoVPN).
Much of that concern is rooted in medical experimentation that ranged from unethical to horrific.
“There is a sordid history of racist abuse that Blacks have endured at the hands of medical experimentation and exploitation,” Pernell said.
Perhaps, the most well-known example is the Tuskegee experiments that lasted 40 years.
“Black males were withheld treatment for syphilis just to study the quote-unquote ‘natural progression’ of the disease,” Pernell said.
There is also the case of Henrietta Lacks, a Black woman with aggressive cervical cancer. Doctors took cells for experimentation from her body in the 1930s without her consent or knowledge. Her cells have been repeatedly used in modern medical research to the present day.
“Dr. Marion Sims, who did gynecological surgeries on enslaved Black women without their consent and without any anesthesia,” Pernell said. “I could go on and on. ‘Mississippi appendectomies’ that forced sterilizations of Black and brown women. That history bears an awesome weight, right? A serious and heavy weight on the shoulders of Blacks,” Pernell said.
And it’s not just the history.
“It’s how racism continues to be perpetuated. In American health care, we see health care disparities across multiple conditions where Blacks are even faring worse around mortality,” Pernell said.
“The distrust and mistrust that people are experiencing — to me, this is a huge issue that needs to be addressed,” Wallace said.
The first step?
“To validate the skepticism. To validate the concern,” Pernell said.
Work is happening now to build trust.
Fred Hutch is running the CoVPN, creating a registry of volunteers nationwide in all COVID-19 vaccine trials and working on a variety of strategies to boost communication and build trust.
The extensive work involves bringing Black and brown people into the decision-making processes, outreach and engagement at clinics that primarily serve people of color and just having conversations.
“Really, begin to address the root causes and systemic racism and oppression are definitely a part of the root cause. We talk about implicit bias in the medical industry and in the health care establishment, and that’s another component to this — unchecked implicit bias,” Wallace said.
The hope is that the pandemic has amplified the racial inequities of today to a point where action to change the status quo is unavoidable.
“As a nation, we can no longer ignore that as a field, and I believe we’re at a tipping point,” Pernell said. “We are at a time in history that I describe as a reckoning — a time that is ripe with opportunity for transformative change,” she said.
Soon, UW Medicine plans to start recruiting volunteers for another COVID-19 vaccine clinical trial created by AstraZeneca and is aiming for 50% of its volunteers to be people of color.