Dr. Kim Rhoads is an epidemiologist and biostatistician at UCSF. She helped start a group called Umoja with a mission to get more African Americans to get tested for the coronavirus as well as to present a more accurate picture of positivity rates in the Black population. Rhoads is pictured wearing an Umoja T-shirt at the COVID-19 pop-up testing sites hosted by Acts Full Gospel Church in East Oakland on Oct. 31, 2020. (Beth LaBerge/KQED)
When UCSF wanted to look into COVID-19 disparities in the Black community, they tapped Dr. Kim Rhoads. Rhoads is an epidemiologist and biostatistician at UCSF who has done extensive outreach in the Bay Area’s Black community.
Most current research points to higher COVID-19 infection rates among Black people in the U.S.
The Centers for Disease Control and Prevention says Black Americans are 1.4 times more likely to catch the virus compared to their white counterparts. (That rate was at 2.6 times more likely when KQED checked on Nov. 21.) And according to the state public health department, Black people make up approximately 4% of positive cases in California but only 6% of the total population in the state.
But according to Rhoads, those statistics don't tell the full story.
Looking into infection rates among Black Americans in Oakland, Rhoads discovered that virus positivity may be lower than is being reported by public health departments and the media because a large portion of the Black population is being missed.
A sizable number of people in the community, she said, are untested, unreached and uncounted.
She discovered that trend after her team tested 1,000 people across Oakland at eight separate pop-up testing events, and only two Black participants came back positive, leading to a positivity rate of less than 1%.
To begin examining disparities in Oakland, Rhoads knew she needed to put together a diverse team of stakeholders — so she brought in community groups, public health departments, and, of course, UCSF.
The team is called Umoja Health. Umoja in Swahili means “unity,” and it’s the first principle of Kwanzaa.
When they started in September, Umoja aimed to get more Black and African American folks tested for the coronavirus and to use that data to present a more accurate picture of positivity rates in the community.
To do that, they set up eight pop-up testing sites throughout Oakland over two months in census tracts with greater than 40% African American population represented.
But the pop-ups were unlike other testing sites.
There was a live DJ playing music, volunteers wore T-shirts that said Umoja, and they handed out goody bags with resource sheets and masks. The overall mood was festive.
"What we're trying to shift is the idea that if you're going for testing, you're not going into a clinical or medical environment where people don't know you and maybe they don't care," said Rhoads on a Saturday in September at the Center of Hope Community Church parking lot, one of their pop-up sites where folks could walk or drive up to get swab and antibody tests for free.
Rhoads said their approach was to create testing sites with familiar faces.
“Instead of asking people to come to the clinic, we want to bring the clinic to the people. And when we bring the clinic to the people, we want it to look like the community is bringing it to the community," she said.
They got rid of the UCSF logos, the Department of Public Health signs — making the site look more like a health fair.
Rhoads said Black people in San Francisco weren't getting tested despite having testing available to them. Over the summer, she helped organize COVID-19 testing sites in the city's neighborhoods with the largest African American population, San Francisco's Bayview-Hunters Point and Sunnydale.
She said at one clinic they were only serving a fifth of their capacity and swabs were just sitting there unused, largely due to the relationship between the community and the public health department.
Rhoads said the same thing was happening in Alameda County where testing sites located in predominantly Black neighborhoods weren’t being used by Black people. She says roughly four out five people getting tested were non-Black, like at Roots Community Health Center, an East Oakland clinic that serves mostly African Americans.
Jamaica Sowell, director of programs and policy with Roots Community Health Center, said 20% of people getting tested at their clinic are Black or of African descent, but added that the percentage doesn’t include those of mixed race, which often include African Americans.
Becoming Credible Messengers
Organizers said an initiative where Black people and allies work together to serve the Black community is significant because it can help fight misinformation that has been spreading within the community since the start of the pandemic.
Daryle Allums Sr., executive director of local anti-gun-violence group Adamika Village, said there’s not enough COVID-19 education in East Oakland.
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“We need credible messengers that our community can trust to give this information. If that's from a Black doctor, if that's from a community leader, a pastor — however that look. We need to right education,” Allums said.
Umoja popped up at churches, the West Oakland BART station, an outdoor market featuring Black small-business owners called Akoma Market, and more.
At their first pop-up in Akoma Market, Rhoads said they had zero positives out of 75 people tested. "But with the rate of infection that was being reported, we should have had at least one or two,” she said.
In the end, Umoja tested exactly 1,000 people (not including volunteers), over half of whom were Black. And only a total of two Black people tested positive.
A positivity rate of less than 1% contrasts starkly with other reports. So how could the results be so different?
Rhoads said the answer lies in their testing group.
“We found that we were really reaching a high percentage of folks who had never been tested before,” she said. Over half of the Black people they tested said they were first-time testers.
According to Rhoads, that means they were capturing a larger pool of the Black American population. These are people who may be living “on the edge,” as she put it, but are generally housed. They have jobs but might not have health care or just don’t trust the health care system due to a history of systemic racism.
“So we're seeing the people who are not in the system. They're not in the congregate living setting system, and they're not in the prison system. They’re just not in the system,” Rhoads said.
She said these testers are the “regular folks” who public health officials and the media don’t always pay attention to.
And misreporting the percentages as higher than they actually are can create a narrative that all Black people are disproportionately getting infected by the coronavirus. She said the mortality rate is higher, but when public health officials and the media portray the community as a monolith, they risk feeding some ugly assumptions.
Rhoads said what’s missed is the fact that Black folks are being responsible — they’re wearing masks, social distancing and following public health guidelines.
While Rhoads is confident in her data, this is one study, and researchers need to continue probing.
Pivoting to Vaccines
When talks of vaccines emerged, Rhoads knew they'd have to leverage the credibility and trust they've developed in the community in order to get the word out about vaccines, but in the tried-and-true Umoja way.
“We would be providing information and resources and opportunity to question the vaccine,” Rhoads said.
“To dictate to people what they should do is very not Umoja," she said. "In fact, it's the old way, which is the paternalistic health care system, telling people, particularly people of color in underserved communities, why the problems that they're having are their own fault.”
While that "paternalistic" approach might be comforting to folks who haven’t been historically marginalized by the health care system — especially from an esteemed institution like UCSF — that’s not the case with many Black Americans.
Henrietta Lacks was an African American woman whose cancer cells were taken without her consent in the 1950s, and companies made money using them.
“So, of course, people are like, 'I'm not going to go get tested. I'm not going to go do this. I'm not going to go get a vaccine,' ” Burns said.
Based on survey data collected at their pop-ups, Rhoads knew they had their work cut out for them. At an Umoja meeting in November, Rhoads said of the thousand participants, when asked about whether or not they'd be willing to get the COVID-19 vaccine, survey results showed people were equally split across getting the vaccine and not.
And a willingness to get the vaccine among African Americans suffered a slight drop after their last pop-up, going from 43% down to 40%.
“As I talk to folks, mainly Black folks, they say I’d like other ethnicities to try it first because we don't trust that it's going to be good for us. I've heard that comment over and over,” Shaw said.
Looking for practical solutions, Rhoads said it’s important for trusted community members to get vaccinated and speak about their experience, telling folks whether they had side effects or not, and so forth.
Umoja, she said, empowers people with information so they can make their own decisions.
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