‘There simply isn’t the trust’: The fight to overcome vaccine skepticism in the Black community

Now that the much-anticipated coronavirus vaccines are starting to be distributed across the United States, Cheryl Stokes is looking forward to eventually getting some of her pre-pandemic life back—as long as her doubts about vaccine safety can be resolved.

“I’m excited that there is a vaccine. Everybody’s like, ‘Oh, thank God! Maybe there’s a light at the end of the tunnel,’” says Stokes, a partner at executive-recruiting firm Heidrick & Struggles.

“But it’s really early days, and I’m looking for data,” adds Stokes, a longtime corporate executive and MIT-trained engineer, and a Black woman who says that “as a woman of color, nine out of ten people I know well are saying they will not get the vaccine. There simply isn’t the trust.”

She’s in good company with her skepticism—especially among Black adults and other people of color, who are all too aware of the medical establishment’s current racist inequities and horrific history of mistreating them in the name of research and scientific progress. The U.S. track record includes the government’s 40-year Tuskegee experiment, which deliberately failed to treat hundreds of Black men with syphilis, so that doctors could study the course of the disease; the painful experiments by J. Marion Sims, the 19th-century gynecologist who developed now-commonplace techniques by performing surgery without anesthesia on enslaved women; and the current stark disparities and widespread discrimination embedded in the health care available to many people of color, which have contributed to the pandemic’s disproportionately deadly impact on Black, Latinx, and Indigenous communities.

“Currently Black people do get unequal treatment, and less treatment. The evidence is very stark and shocking,” Dr. Laurie Zephyrin, vice president of health care delivery system reform at the Commonwealth Fund, said at a Fortune Most Powerful Women event last week. “There’s active distrust of government, and many Black people say they don’t trust the medical establishment. And it’s really important to understand that.”

These grim realities have all combined to make those who have been most devastated by the coronavirus also the most wary about the new vaccines against it. Only 28% of Black adults said they would be willing to get a vaccine for COVID-19 as soon as possible, according to a Fortune and SurveyMonkey poll earlier this month.

And it’s not just Black communities that remain skeptical of or outright opposed to vaccines; while overall willingness to get inoculated against COVID-19 is increasing, recent surveys also show pockets of reluctance among Republicans, millennials, rural residents, and even essential workers. Only 40% of U.S. adults say they’d want to get a COVID-19 vaccine as soon as possible, with another 39% saying they’d want to wait a while, according to Fortune and SurveyMonkey—and 19% say they never want to take it.

Public-health authorities and community organizations, well aware of this wide-ranging skepticism and its various causes, have spent the fall trying to answer questions and build confidence in an eventual coronavirus vaccine. But now, as Americans receive the first doses of the Pfizer-BioNTech vaccine and anticipate the regulatory approval of Moderna’s version this week, there’s a new urgency to the campaign to win over vaccine skeptics. Their reluctance, if sustained, will undermine the country’s ability to reach the threshold of 75% to 80% that public health experts say is necessary for the country to achieve “herd immunity” to the coronavirus—and finally end the pandemic.

“It’s our job to answer the really tough, legitimate questions that people have, because this science is really complicated,” says Amy Pisani, the executive director of vaccine advocacy organization Vaccinate Your Family.

But “our biggest hurdle is to try to help people understand that we’re all in this together,” she adds. If that fails, “we’re never going to go back to normal.”

Waiting on Congress

After several months of low national confidence in vaccines, there’s some reason to be increasingly optimistic: 71% of all people recently surveyed by the Kaiser Family Foundation said they will “definitely or probably” get a COVID-19 vaccine, according to a survey published Tuesday, up from 63% in September. Black adults are also more willing to get the vaccine than they were in September, according to Kaiser, but 35% still say they definitely or probably would not get vaccinated, citing worries about possible side effects, distrust of the government, or distrust about vaccines in general.

Public health experts, including leading Black doctors and scientists, have warned about this reluctance for months—and have already mobilized vaccination-education efforts, from national to grassroots levels. Groups including the Black Coalition Against COVID-19 are working with community organizations, historically Black colleges and universities, and community leaders to combat misinformation about vaccines; the National Institutes of Health is funding outreach and education among communities of color in 11 states that have been disproportionately affected by COVID-19; and President-elect Biden has appointed Marcella Nunez-Smith, a Yale professor who studies racial disparities in health care and co-chair of his transition team’s COVID-19 task force, to run a White House task force devoted to health equity.

Individual health care workers are also taking on the responsibility of vaccine advocacy. Sandra Lindsay, the Black nurse at a New York hospital who on Monday became the first American to receive the Pfizer vaccine outside of clinical trials, said she wanted “to inspire people who look like me, who are skeptical in general about taking vaccines.”

Zephyrin, a former director of reproductive health at the U.S. Department of Veterans Affairs, said last week that she’s “really excited by what I’m seeing” so far. “From a racial equity standpoint, building trust is central,” she says. “If we want people to trust systems and governments, that trust needs to be created.”

But as Pisani points out, all of these efforts take time, personnel, and especially money—funding that Congress has the power but apparently not the will to fully grant, even if it can finally agree on a stimulus bill this week. Public health departments have requested more than $8 billion in funding to support vaccine distribution, but the latest bipartisan proposal for a $748 billion stimulus bill would allocate only $6 billion to fund federal, state, and local efforts to vaccinate residents.

“It’s unbelievable that Congress has not passed a bill to support the delivery and education on COVID vaccinations,” Pisani says. “If we can’t get Congress to authorize the $8 billion that we’re requesting to help disseminate this vaccine, it will never be equitable, because we’ll just vaccinate that top tier of people who want to get vaccinated. And then all these communities that may be skeptical will still be skeptical, and they’ll still be at risk.”

And there are many types of skepticism to overcome. The country’s highly politicized response to the pandemic, in which wearing a mask became a partisan statement and President Trump exhorted pharmaceutical companies to develop a vaccine in time for the presidential election, has had the side effect of making various communities reluctant or outright opposed to getting inoculated. According to Kaiser’s poll, 42% of Republicans now say they probably or definitely would not get a vaccine, even if it were available for free and deemed safe by scientists.

And then there are the long-standing and disparate vaccine skeptics who make up the “anti-vaxxer” movement, ranging from parents worried about the potential side effects of vaccinating their young children to anti-government conspiracy theorists. All of these doubts have been fueled by the spread of misinformation on social media, a problem that’s only gotten worse during the pandemic. (“The spread of misinformation about the vaccine development process … certainly doesn’t help,” as Zephyrin puts it.)

Pisani’s group has long tried to overcome this skepticism by working with patient advocacy groups, government agencies, organizations that do outreach to communities of color, and the mothers who make most vaccination decisions for their families. She’s encouraged by the increasing confidence people are expressing in recent surveys–and she points out that, practically, the months-long wait that most Americans will face to get a vaccine will at least give them more data about how it affects the health care workers and others who are first in line to get their shots.

“We’re really looking forward to everyone doing their best to help their fellow neighbors by getting vaccinated,” Pisani says. “We’ve got to get that [herd immunity], or we’ll be stuck in this chamber forever.”

‘Trust, but verify’

Stokes, speaking the day after Sandra Lindsay’s groundbreaking vaccination photo made national news, said that she’s somewhat reassured by the promises of prominent Black leaders, including former President Barack Obama and incoming Vice President Kamala Harris, to get vaccinated. But she also wants to see government officials, pharmaceutical companies, and health care authorities do more to communicate about the vaccine’s effects on people who look like her.

“I think it’s really important for leaders and community leaders to be role models,” she says. “But at the same time, I believe in ‘trust, but verify.’ I’m an engineer by training, and I want the data.”

The data is often the problem in pharmaceutical clinical trials, which have long skewed very white and very male. This longstanding lack of diversity undermines efforts to develop vaccines and other treatments that will work on everyone, across race, sex, age, and preexisting conditions. Pfizer and Moderna have both done better than usual in this regard, although there’s still room for improvement: Both companies said that about 10% of the participants in their clinical trials were Black, a few percentage points short of the 13% share of the overall population accounted for by Black people; about 80% of trial participants were white.

“It’s not ideal, and one would have liked to have seen a more robust recruitment of people of color onto the trials. But I think from a science point-of-view, it is adequate,” Dr. Margaret “Peggy” Hamburg, former commissioner of the U.S. Food and Drug Administration during the Obama years, said at the Fortune event last week.

“While we’re seeing very marked racial disparities in burden of disease from Covid, there isn’t reason to really believe it’s because of genetic differences” between people of different racial or ethnic backgrounds, Hamburg added.

Instead, she attributes the pandemic’s disproportionate toll on people of color to “the underlying structural racism and the longstanding history of inadequate access to healthcare” for communities of color, as well as the greater exposure among essential workers who had to risk their health in order to keep their jobs. “We’re seeing that reflected in the burden of disease, but not because of genetic differences,” she says. “Getting the right diversity in clinical trials has been a longstanding challenge. … in this case, it’s adequate, but I hope we can do better going forward.”

Stokes says she was somewhat reassured by the representation of Black people in the Pfizer trials. With the initial vaccine rollout mostly restricted to nursing home residents and health care workers, she should have weeks or months to closely watch for reports of side effects among the early recipients—and says that, at least for now, she’s leaning towards getting inoculated when she can.

“It’s still early and I’m waiting to see more data,” she repeats. “But I feel reasonably comfortable in what I have seen so far.”

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