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Story Publication logo January 7, 2021

The Bumpy Road to Vaccine Trial Participation

Author:
Traci Evans Simmons, 50, has been waiting for a kidney transplant for several years. But as the COVID-19 pandemic has raged, many transplant programs have been put on hold and Simmons has sequestered herself in her Mecklenburg County home. Simmons has a kidney disease which tends to run in families which has left her dependent on doing home dialysis. Image by Melba Newsome. United States, 2020.
English

This project is a collaboration with the Charlotte Observer, the Charlotte Post, and NC Health News...

Tanara Gilbert, part of the Environmental Services team at UNC Rex Hospital receives the COVID vaccine during the initial rollout in December, 2020. Image courtesy of UNC Health. United States, 2020.
Tanara Gilbert, part of the Environmental Services team at UNC Rex Hospital receives the COVID vaccine during the initial rollout in December, 2020. Image courtesy of UNC Health. United States, 2020.

When I first became interested in taking part in a coronavirus vaccine trial, I assumed all I had to do was step forward. I believed that the same characteristics that raised my coronavirus risk — Black, over 60, type 2 diabetic — also made me highly sought-after as a volunteer. But it wasn’t nearly that easy.

North Carolina was one of the first states to release coronavirus data by race. The numbers from Charlotte/Mecklenburg County, where I live, showed the disparate impact of the virus on people of color and were soon confirmed by the skyrocketing COVID-19 rates in other cities with high Black populations.

Then the myth began circulating on social media that Black people were somehow immune to the disease and five people sent me a link to the Plandemic conspiracy-theory video in one day. I could see how the Black community’s well-justified skepticism about public health initiatives would exacerbate the health crisis we were facing.

In mid-summer, vaccine manufacturers Pfizer and Moderna announced they would recruit 60,000 participants — 18 and older, all genders and racial and ethnic groups — for their late-stage clinical trials. Volunteering was a way to ensure that Blacks were adequately represented in the research and demonstrate that the vaccine is safe for this community.

The ethical dilemma

While some people thanked me for being willing to risk my personal safety to advance medical science, others expressed surprise and even outrage. How could I offer myself up as a human guinea pig to the very medical establishment that alternates between ignoring and exploiting Black people?

Without guinea pigs, where would we be, I asked rhetorically in response.

A Washington Post poll conducted in the spring found that more than 30 percent of Blacks personally know someone who died from COVID-19. Yet, a December Pew study found that only 42 percent of Black adults said they would be willing to receive the vaccine, down two points from a survey taken in mid-June.

Why diversity matters

Black people have many reasons to distrust a public health system that has used our bodies for experimentation without care or consent. But given the coronavirus’s impact on the Black community, informed participation in clinical trials is essential to ensure the vaccine works, regardless of age, gender and ethnic background.

Little has changed since 1993, when Congress passed the NIH Revitalization Act, which requires federally funded research projects to include women and minorities in their trials. In fact, the numbers appear to be headed in the wrong direction.

People of color account for fewer than 10 percent of patients enrolled in clinical trials, according to the National Institute on Minority Health and Health Disparities. There has been a longstanding assumption that the problem lies in minorities’ distrust of the medical establishment because of historic mistreatments during the Tuskegee study and the eugenics movement. While lack of trust is a factor, a recent study published in the American Cancer Society Journals found bias among health care professionals as a contributing factor.

Some study recruiters perceived race as irrelevant when screening and recruiting potential minority participants. Others not only viewed racial and ethnic minorities as less promising participants, some reported withholding trial opportunities from minorities based on these perceptions.

Pfizer and Moderna touted diversity as a priority for their phase 3 coronavirus vaccine trials. I responded to several solicitations looking for volunteers in the Charlotte area, feeling confident I would be picked.

If selected, I would receive two shots, an initial vaccine (or placebo), then a booster shot (or placebo) about a month later. I would be required to document any side effects from the vaccination in an electronic diary.

Those side effects commonly include pain or soreness near the injection site, headaches, muscle aches, fatigue and fevers.

Who gets chosen?

My white friends Anita and Lucia were both selected for the Pfizer trial. Retired manufacturing executive Lucia was recruited because she was in their database after participating in a study for people with celiac disease a year earlier. Anita, a psychology professor, told me she wanted to put her “body on the line to help others.”

Anita believes she got the vaccine and not a placebo because she developed a mild fever (99.5 to 100.0) the day after her first injection. “I usually don’t run fevers and haven’t had once since,” she says. Lucia thinks she got the placebo because she had no side effects after her shot.

As I stood by for the call that never came, in early October, Moderna announced that it had failed to recruit enough Black, Latino and Native American participants in its study. To make up for the shortfall, the firm slowed enrollment and instructed research centers to increase participation among minority volunteers.

Frustrated, I applied again (clearly identifying myself as Black this time) and waited. Still nothing.

I wasn’t willing to give up but clearly, this was going to be much harder than I imagined.

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