To understand and address vaccine hesitancy and the roots of medical mistrust among Black Americans, look to the U.S. Public Health Service Study at Tuskegee—but not as an isolated event. Rather, it's one component of structural racism that requires structural solutions to overcome as the nation seeks to maximize COVID-19 vaccination to speed the pandemic's end.
"This was a structural, deliberate program and an institutional initiative—so any interventions at this point need to demonstrate that same intention and fidelity to structural change," said Giselle Corbie-Smith, MD, a professor of medicine and social medicine at the University of North Carolina (UNC) and director of the UNC Center for Health Equity Research.
Dr. Corbie-Smith made her remarks during "Trustworthiness & Vaccines," a recent episode in the AMA "Prioritizing Equity" video series, in which a panel of experts discussed vaccine hesitancy and what can be done about it.
While about 60% of Americans say they will definitely or probably get a COVID-19 vaccine, only about 42% of Blacks would do so—compared to 83% of Asian, 63% of Latinx and 61% of white adults, according to a Pew Research Center survey conducted Nov. 18-29.
In "Distrust, Race and Research," a landmark 2002 JAMA Internal Medicine study that has been referenced in more than 600 other studies, Dr. Corbie-Smith and colleagues found that, compared with white Americans, African Americans were more likely to believe that physicians would ask them to participate in harmful research, expose them to unnecessary risks, not fully explain the research, or treat them as part of an experiment without their consent.
Sign up now to delve deeper into the "Prioritizing Equity" YouTube series with "After the Show: Extending the Conversation," featuring exclusive content from the series with insights and explanations from health equity advocates and trailblazers. The after-show panel for this episode features conversation with Camara Jones, MD, PhD, MPH, of Harvard University's Radcliffe Institute for Advanced Study; and Uché Blackstock, MD, founder and CEO of Advancing Health Equity.
Tuskegee doesn't stand alone
The infamous Tuskegee study was conducted by the U.S. Public Health Service from 1932 to 1972, and involved Black men who thought they were receiving free health care but were instead involved in a study without their knowledge or consent on the effects of untreated syphilis.
While it's commonly believed that this is the source of Black mistrust that impedes their participation in clinical trials even now, Dr. Corbie-Smith and her co-authors wrote that "distrust in medicine and research may be rooted in experiences extending back to slavery and continuing to the present day."
The challenge in 2020 is how to overcome this distrust so that African Americans have confidence that getting a COVID-19 vaccine will benefit their health and not worsen it.
One thing that's needed to make this happen is trust—for predominantly white institutions to trust Black physicians and Black researchers to implement the cultural approaches they know will work with Black communities, said Kim Gallon, PhD, associate professor of history at Purdue University and founder and executive director of COVID Black, a collective and an early response taskforce on Black health that creates digital resources designed to raise awareness about health disparities.
"That's going to mean giving time and resources to those Black institutions, and doctors, and health care providers, so they can go into Black communities and engage in strategies that are going to be really effective," she said.
With indigeneous people, "invasion isn't an event, it's a structure" as were federal programs for "relocation, reservation, assimilation, termination," said Margaret P. Moss, PhD, JD, RN, Hidatsa/Dakhóta, director of the First Nations House of Learning and an associate professor at the University of British Columbia School of Nursing.
For American Indians and Alaskan Natives, trusted, culturally relevant communication comes from the voices of community elders. But, in a situation made worse by the COVID-19 pandemic, the social determinants of health have led to low life expectancy and fewer people to carry that message as only about 9% of the American Indian Native Alaskan population is 65 or older compared to about 16.5% of the general population, according to the U.S. Census.
"If they're the ones who are going to help make it OK, then we're really in trouble again," she said.
Strategic messaging needed
While noting that she is ready to take the vaccine, the panel's moderator, AMA Chief Health Equity Officer Aletha Maybank, MD, MPH, emphasized that strategic messaging was needed to overcome mistrust that has developed because "well-documented harms both in stories that have been passed down across generations and in the present lived experience."
Panelist Marcella Nunez-Smith, MD, MHS, chair of President-elect Joe Biden's COVID-19 Equity Task Force and co-chair of the incoming administration's COVID-19 advisory board, agreed.
"This is the most central conversation," said Dr. Nunez-Smith, a Yale School of Medicine associate professor of medicine and epidemiology and founding director of the Yale Equity Research and Innovation Center. "This is where so much of our work is on the advisory board now—it has to be."
She added that there is a need to "double down on the important role of health care providers as trusted messengers" in overcoming vaccine hesitancy.
Read why this Black doctor volunteered for a coronavirus vaccine trial.
Don't let money talk
Tying monetary distribution to getting access to the vaccine or getting access to money if you take the vaccine would be considered coercive practices and would underscore "why people would be distrustful of the federal government," Dr. Corbie-Smith said.
This point was echoed by panelist Lauren A. Smith, MD, MPH, the chief health equity and strategy officer at the CDC Foundation, an independent nonprofit organization that mobilizes philanthropic and private-sector resources to support the Centers for Disease Control and Prevention's health-protection work.
In addition to formulating the right message and choosing the most effective messengers, Dr. Smith added that functional barriers to COVID-19 testing and vaccination need to be eliminated. That includes cost and hours of operation of testing centers and vaccination facilities.
Reason for optimism
"What we're talking about today are not events—this is legacy," said Dr. Nunez-Smith, and she suggested that appropriate data collection "that makes the invisible visible" could be a structural remedy to the issues panelists discussed.
"Not counting for counting's sake, but for accountability's sake," she said, adding that the data collected would be used for responses and interventions to health challenges.
While the pandemic continues to stress the health care system and exacerbate existing inequities, Dr. Nunez-Smith said there is reason for optimism as health equity "is a prioritization in way that we haven't seen before."
"I worry so that people become numb to understanding the grief and the suffering and the loss behind each one of those lives we lose in our country," she said. "But I feel motivated as I hear in the voices of everyone else here that we have a lot of work to do—but we have the resolve to do it."
Throughout the COVID-19 pandemic, the AMA is curating critical health equity resources from across the web to examine the structural issues that contribute to and could exacerbate already existing inequities.
