Six hundred poor Black men were recruited into a syphilis experiment with the promise of free medical care. They did not, however, get the simple antibiotic treatment that could have cured them; instead, the government’s true intent was to track the venereal disease’s full, uninterrupted progression, even as the men went blind, or mad, or died.
Native Americans who worked with researchers investigating type 2 diabetes were stunned to learn that their DNA was used in several other genetic studies without their consent.
And in some Latino communities, a distrust of government intensified by rising deportations, political demonization and a dearth of accurate Spanish-language information fuels skepticism about official efforts to keep people healthy.
The communities hardest hit by the coronavirus pandemic have historic reasons to be wary of governmental largess, especially as it pertains to health care. This poses a formidable dilemma to public health officials eager to reach people and gain their trust as the pandemic peaks and the largest mass vaccination campaign in history unfolds
‘Reasons to be suspicious’
“There are a lot of groups that have reasons to be suspicious,” said David Lo, director of the Center for Health Disparities Research at UC Riverside. “We’re trying to understand how people gather information, develop attitudes and understand the disease, and testing, and willingness to be tested, and vaccines. Where do they get their information? Who do they trust? What strategies can we use to get accurate information to them and change acceptance and uptake?”
Investigators at 11 California campuses have received $4.1 million from the National Institutes of Health to tease out how to best engage hard-hit populations — which may well be different in each individual community.
UCLA will lead the effort — called the COVID-19 California Alliance, or STOP COVID-19 CA — which includes researchers at UC Davis, UC Irvine, UC Merced, UC Riverside, UC San Diego, UC San Francisco, USC, Stanford University, Scripps Research and San Diego State University.
“We must earn the trust of communities whose lived experiences may predispose them to skepticism,” said Carrie L. Byington, an infectious disease expert and executive vice president of University of California Health, in a prepared statement. “We must listen actively and address concerns respectfully through understanding, transparency and sustained action. The STOP COVID-19 initiative combines interdisciplinary collaboration with community engagement to build the connections that will be vital to ending the pandemic for everyone.”
Focus groups identify barriers
Investigators are organizing “in-depth virtual focus groups” with multiethnic communities to identify barriers and challenges. Another project would assess racial and ethnic attitudes among high-risk veterans who might be skeptical of vaccines. The lessons learned could be used across the state and nationwide.
In parallel, community-based surveys are coming together, said UCR’s Lo. Where do you get health information? Doctors? Faith leaders? School officials? Neighbors? The internet? Is the Spanish-language newspaper considered an authority? What’s the best way to reach people — radio? pamphlets? virtual neighborhood meetings? And what precisely are the concerns about inoculation? Is it safety? Effectiveness? Erroneous rumors that vaccination will “change” their DNA?
“The answers to these questions mean it will vary from community to community in terms of who you recruit for help,” Lo said. “We need to know all this to be able to engage and address their concerns directly, rather than saying, ‘Here’s a list of answers.’ “
Initial findings will emerge in the coming months, but the efforts will yield long-term usefulness, increasing the cultural competency of medical school students and doctors.
Black distrust of vaccines
A recent survey by the Kaiser Family Foundation found that while the willingness to get COVID-19 vaccines has increased, it’s still markedly lower in Black communities. Thirty-five percent of Black respondents said they were definitely or probably not going to get a vaccine, compared to 26% of Hispanic and White respondents.
Among all those who are hesitant, the main reasons were worries about possible side effects (59%), lack of trust in the government to ensure safety and effectiveness (55%), concerns that the vaccine is too new (53%) and concerns over the role of politics in the development process (51%).
About half of Black adults who said they probably or definitely won’t get vaccinated say it’s because they don’t trust vaccines in general (47%) or that they are worried they may get COVID-19 from the vaccine (50%).
Latinos make up 39% of California’s population, but more than 56% of COVID cases and nearly 48% of deaths. Black people make up 6% of California’s population, 4% of cases and 7% of deaths, according to the state Department of Public Health.