The patients who stream into her clinic in a low-income and predominantly Black section of Chicago's South Side have been terrified by the coronavirus pandemic, said Dr. Brittani James, stressed out by its harmful effects on the community and frustrated by mixed messages from government officials.
But now, just as possible solution to the virus's spread is on the horizon, she is particularly worried about what she is hearing from her patients. Many of them fear that the vaccines aimed at stopping the spread of Covid-19 will be harmful to Black Americans.
Concerns about vaccines have left some Black people entirely unwilling to take a vaccine, while others have said that they want to wait and see how the first wave of vaccine distribution is handled.
When those concerns come up, “I look my patients in the eye and I say that I understand, I’ve read the studies myself, and my job is to protect you and I will not do you wrong,” said James, a family physician who is also an assistant professor at the University of Illinois College of Medicine. “I don’t respond with writing them off as irrational and ignorant.”
As a result of her conversations with patients and her own medical experience, “I’m already seeing the writing on the wall that we are not prepared to roll this vaccine out to vulnerable communities,” said James, who co-founded the Institute for Antiracism in Medicine earlier this year. “I feel like I’m screaming into a void in trying to get people to understand that I can see that this will fail if we continue to do what we normally do with distribution.”
Over the past several months, as infections, hospitalizations and deaths from Covid-19 continue to rise across the country, it is having the harshest effects on Black communities like the one James serves. By almost every metric, be it increased unemployment, diminished academic performance or exposure to pre-existing conditions that put a person at a greater risk of getting sick, the virus and its economic fallout have often affected Black Americans more severely than other groups.
“It’s been very overwhelming,” James said.
The pandemic’s disparate impact has fueled concerns that Black communities — who along with Latinos and Native Americans are among the groups most affected by Covid-19 — are being left behind as America responds to the virus. And with several vaccines likely on the path to federal approval in the near future, ensuring that Black communities and other marginalized groups have access to treatment is something that medical professionals say is crucial to defeating the pandemic.
But right now, the one thing that may be more important than getting vaccines in the hands of Black Americans is increasing their trust in the process that created it, and in a medical system that has mistreated them in both the past and the present.
Generations of experimentation on Black Americans and dismissal at the hands of medical professionals have left many skeptical of the medical field and wary of taking a vaccine, something that just half of Black poll respondents have said they are willing to do.
It’s all part of a cycle of a distrust in medicine that some Black medical providers say is both completely warranted and deeply concerning.
“It is not paranoia, it is not that Black people don’t ‘get it’ or are simply uneducated and unintelligent about their health,” James says. “The reality is that their worries have been earned and will not be corrected until medicine and public health and the government reckon with the past and what has been done to Black and brown people.”
Now, as the country deals with another deadly wave of the coronavirus, Black doctors and medical providers are taking key roles in doing something they say should have been done decades ago: working to build trust in medicine in Black communities and acknowledge past harms. But, increasing confidence in vaccines is just one part of a process they say must continue for years.
Black medical providers aren’t shocked
Polling of Black Americans reveals that months into the pandemic, there continues to be a deep distrust of potential vaccine efforts.
A September survey of Black and Latino respondents published by the COVID Collaborative, the NAACP and UnidosUS found that while 55 percent of Black respondents knew someone who had been diagnosed with Covid-19, just 14 percent said that they believed that a future vaccine would be safe, and only 18 percent believed that the vaccine would be effective.
A December poll from the Pew Research Center found that while 71 percent of Black respondents knew someone who had been hospitalized or died from Covid-19, fewer than half of Black Americans polled would get the vaccine.
For Black medical providers, these numbers are stark, but not surprising.
“We saw early on that vaccine acceptance and willingness to enroll in vaccine clinical trials was going to be a major challenge,” said Dr. Reed Tuckson, a former public health commissioner in Washington, D.C., and the leader of the Black Coalition Against COVID-19, a D.C.-based effort to spread information about the virus and potential vaccines to Black Americans.
Over the past several months, the coalition has worked with a number of Washington community organizations, historically Black colleges and universities, and community leaders to share information both locally and nationally about Covid-19 prevention, and drafted a public “Love Letter to Black America” that calls for people to be open to vaccines when they are available.
Much of the organization’s national work has revolved around combating misinformation about potential vaccines, and the coalition has used radio campaigns to further its reach. The coalition has also worked to make experts available to the general public through remote national town halls and forums, including a recent event that allowed people to hear directly from Dr. Anthony Fauci, the nation’s top infectious disease expert and the director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health.
Tuckson said that the events have largely been a success, adding that the coalition’s first two town hall events reached some 240,000 people. Among Black Americans, “there is a hunger and willingness for information and to engage in these issues when they are presented with the community’s issues in mind,” he said.
Other members of the coalition include the presidents of the National Medical Association, and the National Black Nurses Association, and the leadership of the nation’s four historically-Black medical schools: the Morehouse School of Medicine in Atlanta, the Howard University College of Medicine in Washington, D.C., the Meharry Medical College in Nashville, Tennessee, and the Charles Drew University of Medicine and Science in Los Angeles.
The individual groups within the coalition have also worked to spread information about the vaccine to the communities they serve, and the four medical schools have been involved in the clinical trials process. But these efforts have at times drawn a backlash from alumni and other Black Americans worried that the process would somehow be unsafe.
The doctors argue that their actions will ultimately help Black communities. “We’ve been developing linguistically and culturally appropriate materials to help people to get access to testing and educational material about Covid-19,” Dr. Valerie Montgomery Rice, president of the Morehouse School of Medicine, recently told the Undefeated.
Martha Dawson, president of the National Black Nurses Association, said that efforts to increase openness to the vaccine in Black communities must stem from a direct acknowledgement of the ways that Black people have faced discrimination in the medical field, and from an honest and open dialogue that does not dismiss concerns or fears about a vaccine, but instead addresses them clearly and with information.
“Historically, there is a saying that when white people catch a cold, African Americans catch pneumonia,” Dawson said. She explains that any effort to address the pandemic in Black communities must also address what are known as the “social determinants of health” the external factors -- living conditions and economic outcomes that directly affect a person’s health and have played a role in wide health disparities between Black people and white people well before the pandemic began.
“This pandemic should serve as a wake-up call for how fragile our health care system is and that there is room for improvement,” she adds.
The scars of Tuskegee
That improvement isn’t just limited to closing the disparities exacerbated by the coronavirus, experts say. Rather, they also want there to be increased acknowledgement and awareness of a history that is widely known in Black communities and not always shared elsewhere: the history of how racism in medicine has left profound cultural and social scars on Black people and their communities.
This history begins with enslaved men and women being subjected to surgeries without anesthesia in the name of medical advancement. Men like James Marion Sims, who has been celebrated as the “Father of Modern Gynecology,” operated on Black women unable to oppose the treatment. Other stories include cases like that of Henrietta Lacks, a Black woman who went to a segregated Johns Hopkins Hospital for cancer treatment in 1951 only to have her cells taken and used in medical research without her consent for decades after her death.
Perhaps the largest shadow has been cast by the U.S. Public Health Service Syphilis Study at Tuskegee, which began in the 1930s and continued until its public revelation in 1972. The study, which was conducted in Alabama with approval of the U.S. government, tracked 600 Black men -- 399 living with syphilis and 201 without the disease — but did not offer any treatment, instead observing the men for decades as they struggled with health complications related to the disease, infected others, and died. The study did irreparable damage to the men and their loved ones, and according to research published in 2016, scarred a generation, with life expectancy among Black men over 45 falling in the years immediately following the revelation of the experiment.
The scars of Tuskegee and other historical traumas continue to resonate today, several Black medical providers said, and help explain part of the distrust Black communities have toward the medical field. But another factor that is also significant is how people have been treated in the present, an issue that has been exacerbated by the ongoing pandemic.
“Black people can’t even get adequate health care and access to insurance,” Dawson said, noting that even when Black patients can access doctors, they report having negative interactions with them and are not always taken seriously when raising concerns about their health.
“When there isn’t a pandemic, if you don’t allow me to fully participate in the health care system, then why in a pandemic are you expecting me to participate in the health care system?” she added. “We can’t keep having it both ways.”
The medical providers all acknowledged that the mistrust and misinformation that they are seeing are issues that can’t be resolved overnight and won’t be fixed in the weeks before vaccines begin to be made available to front-line public health workers, a key group exposed to the virus. But they also acknowledge that the costs of doing nothing are significant and could lead to the further devastation of Black communities.
Dr. Leon McDougle, a Black physician in Columbus, Ohio, and the current president of the National Medical Association, notes that one piece of misinformation he wants to correct is that Covid-19 is only threatening to older patients. During a recent interview, he recalled the story of a 35-year-old patient, a former Division I football player, who needed weeks of treatment for Covid-19 followed by months of dialysis for kidney failure.
“Prior to his illness, he looked like the Incredible Hulk,” McDougle said. He points to the case as an example of the ways that Covid-19 symptoms can linger for months after the treatment. McDougle, who leads a task force of Black physicians that plans to independently vet potential vaccines, also cites the case as an example of why vaccination will be important, noting that avoiding the vaccine could make racial health disparities worse.
Because of this, McDougle said, it is crucial for him to “lead by example,” so he said he has signed up to participate in clinical trials for a vaccine and that he would take a vaccination when it is available. He said he hopes that this pledge, coupled with similar pledges made by other Black doctors, nurses, researchers and pharmacists, can help ease suspicion of Covid-19 vaccines.
Tuckson of the Black Coalition Against COVID-19 is more direct.
“The African American community needs to understand that 2020 is not 1930 or 1940,” he said. “There were no African American physicians or scientists or health policy leaders in the past, today is a different situation,” he added, noting that a series of ethical guidelines in medicine known as the Belmont Report stem directly from the Tuskegee experiment. He also said that numerous Black scientists “will have direct involvement in the creation of a vaccine,” including Black women like Dr. Kizzmekia Corbett, a lead coronavirus vaccine researcher at the NIH.
For James, the Chicago doctor, the only way that vaccine conversations will change in Black communities is if Black people not only play a role in creating a vaccine, but they are also given lead roles on sharing vaccine information with the public.
“We need to listen to Black and brown leadership, places like Black churches, nonprofits that understand the communities,” she said. “We need to empower them with resources to execute and follow their lead.”