States and the federal government also don’t reliably collect data so we won’t have a good idea of whether the vaccine is reaching these critical populations.
Though African Americans are being hospitalized for COVID-19 at more than triple the rate of white Americans, wariness of the new vaccine is higher in the Black population than in most communities. The U.S. Centers for Disease Control and Prevention highlighted communities of color as a “critical population” to vaccinate. But ProPublica found little in the way of concrete action to make sure that happens.
It will be up to states to make sure residents get the vaccine, but ProPublica reviewed the distribution plans of the nine states with the most Black residents and found that many have barely invested in overcoming historic mistrust of the medical establishment and high levels of vaccine hesitancy in the Black community. Few states could articulate specific measures they are taking to address the vaccine skepticism.
And it could be hard to track which populations are getting the vaccine. While the CDC has asked states to report the race and ethnicity of every recipient, along with other demographic information like age and sex, the agency doesn’t appear ready to apply any downward pressure to ensure that such information will be collected.
In state vaccination registries, race and ethnicity fields are simply considered “nice to have,” explained Mitchel Rothholz, chief of governance and state affiliates for the American Pharmacists Association. While other fields are mandatory, such as the patient’s contact information and date of birth, leaving race and ethnicity blank “won’t keep a provider from submitting the data if they don’t have it.”
In the initial stages, vaccines will go to people who are easy to find, like health care workers and nursing home residents. But barriers will increase when distribution moves to the next tier — which includes essential workers, a far larger and more amorphous group. Instead of bringing the vaccine to them, it’s more likely that workers will have to seek out the vaccine, so hesitancy and lack of access will become important factors in who gets the shots and who misses out.
“There are individuals who are required to be on the front line to serve in their jobs but perhaps don’t have equitable access to health care services or have insurance but it’s a challenge to access care,” said Dr. Grace Lee, a professor of pediatrics at Stanford University School of Medicine and member of the CDC’s Advisory Committee on Immunization Practices, which is tasked with issuing guidance on the prioritization of COVID-19 vaccine distribution. “We can build equity into our recommendations, but implementation is where the rubber meets the road.”
Hesitancy is rooted in medical exploitation and mistreatment.
About a quarter of the public feels hesitant about a COVID-19 vaccine, meaning they probably or definitely would not get it, according to a December poll by the Kaiser Family Foundation. Hesitancy was higher than average among Black adults in the survey, with 35% saying that they definitely or probably would not get vaccinated.
Mistrust of the medical community among people of color is well-founded, stemming from a history of unscrupulous medical experimentation. The infamous Tuskegee study, conducted from 1932 to 1972 by the U.S. Public Health Service, still looms large in the memories of many Black Americans, who remember how researchers knowingly withheld treatment from African American sharecroppers with syphilis in order to study the disease’s progression.
But the injustices aren’t confined to the past. The National Academies’ Institute of Medicine has found that minorities tend to receive lower-quality health care than white counterparts, even when adjusting for age, income, insurance and severity of condition. Black Americans are also more likely to be uninsured and utilize primary care services less often than white Americans.
“It’s not just about history. It’s about the here and now,” said Dr. Bisola Ojikutu, an infectious disease physician at Massachusetts General Hospital. “People point to racial injustice across the system. It’s not just hospitals; people don’t trust the government, or they ask about the pharmaceutical industry’s profit motive. From the very beginning, Black and brown people are marginalized from the enterprise of research. They think: ‘So few people look like us in research, industry and academia, why should we trust that someone at that table is thinking of our interest?’”
When it comes to vaccinations, the consequences can be grave. Black and Hispanic people are less likely to get the flu shot than white people, according to the CDC. At the same time, Black Americans have the highest rate of flu-associated hospitalizations, at 68 people per 100,000 population, compared to 38 people per 100,000 in the non-Hispanic white population.
Health officials have tried to assuage vaccine concerns in the traditional way, by publicizing specific individuals receiving the shot. The U.S. began its mass immunization effort by injecting a dose of the Pfizer-BioNTech vaccine into the left upper-arm of Sandra Lindsay, a Black woman and critical care nurse in New York.
Meanwhile, an onslaught of memes and conspiracy theories characterizing the vaccine as harmful are making the rounds on social media. One reads, “Just had the covid-19 vaccine. Feeling great,” along with the picture of the character from the 1980 movie “The Elephant Man.” Another image circulating on Twitter features the photos of three Black people and claims they are suffering from Bell’s palsy due to the vaccine. The Twitter user who shared the image asked followers, “still want those Tuskegee 2.0 genocide vaccines?”
It may only take one or two negative headlines to further sow fear, said Komal Patel, who has 16 years of experience as a pharmacist in California. After two health care workers in the United Kingdom experienced allergic reactions to Pfizer’s vaccine, Patel said she saw anxiety spike on social media, even though regulators have said that only people with a history of anaphylaxis — a severe or life threatening immune reaction — to ingredients in the vaccine need to avoid taking the shot. “Just two patients, and here we go, there’s all this chatter.”
Key states lack concrete plans to promote vaccines in Black communities.
It falls to states to make sure their residents of color are vaccinated. But the speed at which the vaccine needs to be disseminated means that states haven’t had much time to plan communications efforts, said Lee, from CDC’s advisory group. “How do we make sure messaging is appropriate? You may want to emphasize different messages for different communities. We don’t have the time for that.”
ProPublica found that few states can articulate specifically what they are doing to address vaccine skepticism in the Black community.
Texas, Georgia and Illinois’ state plans make no mention of how they plan to reach and reassure their Black residents. Black communities make up between 13% and 33% of the population in the three states, according to data from the U.S. Census Bureau. None of the three states’ health departments responded to requests for comment.
California’s state plan includes “a public information campaign … to support vaccine confidence,” but does not provide details apart from the state’s intention to use social media, broadcast outlets and word of mouth. In an email, the California Department of Public Health did not provide additional information about outreach to Black residents, only saying, “this is an important issue we continue to work on.”
New York also broadly suggests it would use public education events and media campaigns to reach vulnerable, underserved and vaccine-hesitant groups, but gives no details. A spokesperson said he would supply more information, but hadn’t responded by Thursday.
“Media outreach is not enough,” said Dr. Georges Benjamin, executive director of the American Public Health Association. “TV ads are one thing, but usually public service announcements are at midnight when nobody is listening, because that’s when they’re free.” Normally, public health officials go to barber shops, beauty salons, bowling alleys and other popular locales to hand out flyers and answer questions, but due to the pandemic and limits on congregating, that’s not an option, Benjamin said, so officials need to plan a serious social media strategy. That could involve partnering with “influencers” like sports figures and music stars by having them interview public health figures, Benjamin suggested.
Dr. Mark Kittleson, chair of the Department of Public Health at New York Medical College, said he’s not surprised to hear how vague some of the state health plans are, because states often focus on providing high-level guidance while county or regional level health departments are left to execute the plan. But he said specific efforts need to be undertaken to reach residents of color. “Spokespeople for the vaccination need to be a diverse group,” Kittleson said. “Dr. Tony Fauci is fantastic, but every state needs to find the leading health care experts that represent the diversity in their own state, whether it’s Native American, African American or Latino.” Kittleson also suggested partnering with churches.“Especially in the African American community, when the minister stands up and says, ‘Folks, you need to take your blood pressure medication and take care of yourself,’ people listen to that,” he said. “The church needs to be brought into the fold.”
Maryland’s state plan acknowledges the distrust among Black and Latino communities as well as rural residents, and says it will aim to tailor communication to each group by working with trusted community partners and representatives of vulnerable groups. A Department of Health spokesperson said in an email that “as vaccination distribution continues to ramp up, we urge all individuals to get the vaccine.”
Florida’s written plan includes a messaging strategy for everyone in the state, but does not specifically address the Black community. A “thorough vaccination communication plan continues to be developed in order to combat vaccine hesitancy,” a spokesperson for the Florida Department of Health said in response to ProPublica’s queries.
In North Carolina and Virginia, however, health officials started preparing months ago to reassure residents about potential vaccines. North Carolina formed a committee in May with leaders from marginalized communities to guide the state’s overall response to the pandemic. Vaccine concerns were a priority, said Benjamin Money, deputy secretary of health services for North Carolina’s Department of Health and Human Services.
The politicization of the pandemic has mobilized the Black and brown medical scientific community to dig into the research and how the vaccines work, Money said, “so that they can feel assured that the vaccine’s safe and it’s effective and they can convey the message to their patients and to their community constituents.”
The committee is advising North Carolina officials on their vaccine messaging and hosting a webinar for Black religious leaders. Similarly, the Virginia Department of Health has staff devoted to health equity across racial and ethnic groups and is putting on a series of town hall-style meetings speaking to specific communities of color.
Black residents in Virginia have expressed concerns about how rapidly the early vaccines were developed, said Dr. Norman Oliver, Virginia’s state health commissioner.
“It all boils down to telling people the truth,” Oliver said. “The first thing to let folks know is that one of the reasons why these vaccines were developed so quickly is because of the advances in technology since the last time we did vaccines; we’re not trying to grow live virus and keep it under control or do attenuated virus and develop a vaccine this way.”
In addition to promoting reliable information, Virginia health officials hired a company to monitor the spread of vaccine misinformation in the state and to locate where falsehoods appear to be taking hold, Oliver said. The state hopes to target its communications in places where distrust is most intense.
The CDC has set aside $6.5 million to support 10 national organizations, according to spokesperson Kristen Nordlund. The funds are “to be disbursed by each organization to their affiliates and chapters across the country so they may do immunization-focused community engagement in the local communities they serve,” Nordlund said in an email. She didn’t respond to questions on whether the funds had already been disbursed and to which organizations.
Data collection on the race of vaccine recipients is likely to be incomplete.
Every state has a vaccination registry, where data on administered shots is routinely reported, from childhood vaccinations to the flu shot. What’s new in this pandemic is that the CDC has requested all the data be funneled up to the federal level, so it can track vaccination progress across the nation.
“Race and ethnicity data should be recorded in states’ immunization data, but we do not know how reliably it is collected,” said Mary Beth Kurilo, senior director of health informatics at the American Immunization Registry Association. “We really don’t have good data on how well it’s captured out there across the country.”
Many immunization records are fed into the state’s registry directly from a doctor’s electronic health record system, Kurilo said, which can present technological stumbling blocks: “Is [the data] routinely captured as part of the registration process? Can they capture multiple races, which I think is something that’s become increasingly important going forward?”
When asked about historic rates of compliance and how they planned to gather information on race and ethnicity of vaccine recipients this time, health departments from Georgia, Texas, Illinois, New York, Florida and California didn’t respond.
Maryland’s state plans indicate it intends to use information gathered through its vaccine appointment scheduling system, including demographic data gathered from recipients, to direct its communication outreach efforts. The Maryland Department of Health, which didn’t provide more detailed information, said it is “currently exploring all options as far as vaccine data reporting.”
North Carolina’s immunization records system routinely collects race and ethnicity information, and a spokesperson told ProPublica it has that type of demographic data for 71% of people in the system. Stephanie Wheawill, director of pharmacy services at the Virginia Department of Health, said that providers will be “asked to record that information” but didn’t elaborate on how the department planned to encourage or enforce compliance.
“You’ve got to have the data to compare,” said Martha Dawson, president of the National Black Nurses Association and an associate professor at the University of Alabama at Birmingham’s nursing school. “Because if you don’t have the data, then we’re just guessing. There’s no way to know who received it if you don’t take the data.”
There is tension between gathering enough data to understand the extent of the rollout and the possibility that asking for too much information will scare away people who are already leery of the vaccine.
“The biggest concern people have is how will this information be used?” said Lee, from the CDC’s advisory group. “People need to trust that the data will be used with a good intent. “
Rothholz, with the American Pharmacists Association, said there could be ways apart from state registries to estimate vaccine uptake among minorities. “If I’m a community pharmacy in a predominantly African American community, if I’m giving away 900 or 1000 vaccines, you can track penetration that way,” he said. Geographic-based analysis, however, would depend on the shots being distributed via community pharmacies rather than by mass vaccination sites — a less likely scenario for the Pfizer vaccine, the first to be administered, which requires ultracold storage that will be difficult for many small pharmacies to manage.
It will be up to doctors and community leaders to encourage trust.
The best way to help a worried individual, whether scared about data collection or the vaccine itself, is a conversation with a trusted caregiver, according to Dr. Susan Bailey, president of the American Medical Association.
“Time and again it’s been shown that one of the most valuable things to encourage a patient to undertake a change, whether it’s stopping smoking or losing weight, is a one-on-one conversation with a trusted caregiver — having your physician saying, ‘I took it and I really want you to take it too,” she said. “But patients have to have the opportunity to ask questions, and not to be blown off or belittled or feel troublesome for asking all their questions.”
“If someone says that they’re afraid of being a guinea pig, maybe drill a bit deeper,” Bailey suggested. “Ask, ‘What are you concerned about? Are you concerned about side effects? Are you concerned that not enough people have taken it?’”
The American Academy of Family Physicians uses the mnemonic “ACT” to guide their members in conversations with patients of color, president Dr. Ada Stewart said in an email: “Be Accountable and Acknowledge both historical and contemporary transgressions against Black, brown and Indigenous communities. … Communicate safety, efficacy and harms such that individuals can weigh their own personal risk to potential benefits, and exercise Transparency with regard to the development of vaccines and the distribution process.”
David Hodge, associate director of education at Tuskegee University’s National Center for Bioethics in Research and Health Care, urges Black and brown leaders such as pastors and community organizers to take control of the messaging right now and not wait for their local governments to tackle the issue.
“We’re not in a position right now to be patient. We’re not in a position to sit on the sidelines, we have to make it happen.”
ProPublica is a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.