Covid lessons taught that health authorities must adopt software practices to ensure that race and other demographic data is entered into electronic records and then shared among counties, states, research institutions and the public.
The ferocity of the covid-19 pandemic did what Black Pittsburgh -- communities that make up a quarter of the city’s population -- thought impossible. It shook the norms.
Black researchers, medical professionals and allies knew that people of color, even before covid, experienced bias in public health policy. As the deadly virus emerged, data analysts from Carnegie Mellon and the University of Pittsburgh, foundation directors, epidemiologists and others pooled their talents to configure databases from unwieldy state data to chart covid cases.
Their work documented yet another life-threatening disparity between white and Black Pittsburgh: People of color were at higher risk of catching the deadly virus and at higher risk of severe disease and death from that infection.
More than 100 weeks after advocates began pinging and ringing one another to warn of the virus’ spread, these volunteers are the backbone of the Black Equity Coalition, a grassroots collaboration that scrapes government data and shares community health intel.
About a dozen members of its data team of 60 meet twice weekly to study hospitalization rates and employment statistics. Social media advisers turned health equity into a buzzy online effort, with videos and weekly Facebook town halls, to encourage vaccinations. Local ministries are consulted, and volunteers take surveys at pop-up clinics, sponsored by other groups, at barbershops and hair salons. Elected lawmakers seek its counsel.
“We came together because we were concerned about saving lives,” said Tiffany Gary-Webb, associate dean for diversity and inclusion at the University of Pittsburgh, who oversees the data effort. “It evolved, with us realizing we can do more than address covid.”
Covid ravaged communities across the United States -- more than 787,000 Americans have died, including Colin Powell, the first Black secretary of state and a decorated Army general -- and laid bare how marginalized populations lose out in the scrum for public health dollars and specific populations were left vulnerable.
Months before the pandemic began, the Rev. Ricky Burgess led the Pittsburgh City Council to declare racism a public health crisis.
“Institutional racism is for real,” the councilman said in a recent interview. “You are talking about generational disproportional investment and generational disproportional treatment. And it impacts all that you see.”
The covid pandemic proved how structural inequities have been missed or ignored, Burgess said.
“I’ve lost friends, family and a lot of church members. My son had covid. For me it’s personal,” he said. “I knew immediately it would have a disproportionate effect.”
In 2020, covid reduced overall U.S. life expectancy by 1.5 years, according to the National Center for Health Statistics. Black and Hispanic people fared the worst, losing more than three years in life expectancy. White people saw a 1.2-year drop.
Using county data, the Black Equity researchers found a sobering racial gap in the Pittsburgh area: Black residents of Allegheny County saw disproportionate hospitalization rates -- and were more likely to land in the ICU or on a ventilator -- in the pandemic. Weekly hospitalization rates were higher during surges of infection in April, July and December 2020 and again in March and October 2021. Deaths, too, were disproportionate but fluctuated after December 2020.
For much of the pandemic, death rates were higher for African Americans than for other racial groups, the coalition said.
‘It’s all a shade of bad’
Kellie Ware has long considered health inequity a deadly problem. She graduated from Pittsburgh public schools, left for law school in Boston, and months before covid began its global assault she was working in her hometown mayor’s office as an equity and diversity policy analyst.
Ware was at her desk in late 2019 when her phone started ringing. A damning report, compiled by university sociologists and the city’s gender commission, had yet again detailed glaring disparities.
The blandly titled report, “Pittsburgh’s Inequality Across Gender and Race,” jolted emotions in the city of 303,000 people -- and underscored how health disparities track with income.
Among the findings: Black people in Pittsburgh earned far less than their white neighbors and suffered far worse from disease. For every dollar white men earned, the report found, Black women earned 54 cents, making them five times as likely to live in poverty as white men.
With notably higher cardiovascular disease and cancer rates, Black residents’ life expectancy was about eight years less than white Pittsburghers’.
The report sparked a furor, which Ware met with perspective shaped over years away from the former steel town. “The report was factual,” Ware said, “but I know this: There’s not a ton of places where it’s great to be a Black woman. Those earnings? It’s 54 cents to a dollar for women in Pittsburgh. It’s 68 cents nationally. It’s all a shade of bad.”
The first signs of the pandemic supercharged Ware and others. As covid devastated New York in March 2020, Karen Abrams, a program officer at the Heinz Endowments, a foundation in Pittsburgh that spends $70 million a year on community programs, began connecting the dots in texts and calls with nonprofits, business owners and university researchers.
Covid spread quickly in dense multi-generational households and in Black neighborhoods in Chicago, Washington, New Orleans and Detroit. Abrams was among the advocates in Pennsylvania who watched county and state health systems race to prepare and who feared that Black residents would be underserved.
In Philadelphia, early on in the pandemic, volunteer doctors in mobile units began distributing protective equipment and covid tests in Black neighborhoods. In Pittsburgh, Abrams asked tech-minded allies to document the reality of covid infection in Pittsburgh. “We intuitively knew what was happening,” she said. “But without that data, we couldn’t target our attention and know who needed the help most.”
Within days, volunteers were on daylong rounds of video calls and appealing to county and state bureaucrats for more race-based statistics to bolster their research.
Fred Brown, president of the nonprofit Forbes Funds, and Mark Lewis, who heads the nonprofit Poise Foundation, were stalwarts of a “huddle,” a core of longtime advocates who eventually founded the coalition.
Brown emphasized pulling labor statistics to show that the essential workers keeping the city running -- among them nursing homes aides and home care staff -- were overwhelmingly Black or Latino.
Mapping covid testing centers and analyzing data proved sobering, he said. It turned out that the people most likely to be tested lived in Pittsburgh’s predominately white neighborhoods. Largely employed in tech, academia and finance, they could easily adapt to lockdowns. They had round-the-clock internet at home and could afford food deliveries to limit the chance of infection. Later, they could access vaccines quicker.
“The communities that had the most tests were the affluent ones,” Brown said. And those with the fewest “were the most resilient, the people who had to go out there and work.”
Lewis, a certified public accountant who spent years as a corporate auditor, focused on standards. County and state health professionals worked mightily to control the spread of covid but didn’t always gather data to ensure fairness in distribution, he said. “We realized that, as testing was done, it was not being recorded by race,” Lewis said. “Why? A lot of the issue was -- at the state and the local level -- there was no requirement to collect it.”
Gary-Webb said researchers had a sense of where the inequities would be found because they knew the neighborhoods. They first layered in percentages of Black families in poverty as well as data on the locations of federally qualified health centers to advise health authorities on where and when to increase testing.
University and nonprofit researchers found anomalies as they worked. For instance, race was noted on some testing data, with patients designated as Black, white or, inexplicably, unknown. The “unknowns” were a significant percentage. So researchers began layering additional census, labor and ZIP code data, to identify neighborhoods, even streets, at risk.
The ZIP code data took months to shake loose from state databases, largely because government software was slow in the fast-moving pandemic and government data was not updated regularly or formatted in ways that could be easily shared.
Their efforts paid off: The group was able to winnow down Allegheny County records that omit race to 12% of positive covid cases; 37% of statewide records are missing race details, the coalition reported.
Robert Gradeck, who manages the Western Pennsylvania Regional Data Center, a nonprofit data collaborative, said covid should play a lasting role in improving public health reporting. “We kept thinking: What can we learn from this?” Gradeck said. “It’s not that you can’t answer questions. But you can answer only part of them.”
Among the top recommendations to health authorities: adopt software practices to ensure that race and other demographic data must be entered into electronic records. And then refine how to share data among counties, states, research institutions and the public.
The coalition attracted support in monthly calls with state Health Secretary Rachel Levine, recently sworn in as a four-star admiral in charge of the U.S. Public Health Service Commissioned Corps, which responds to health crises on behalf of the federal government.
“I thought what they did was critically important,” Levine said, noting that officials recognized the coalition’s research as revelatory. With “a diverse group of professionals, they were able to use and collect data in a very effective way.”
Their early research found the covid rate among Black people in Allegheny County, which encompasses Pittsburgh, was three times the rate of white people. Hospitalizations among Black people have been as high as seven times the rate of whites, according to “Missing Our Shot,” the coalition’s 2021 report.
A vaccine clinic campaign stop
Ed Gainey, a state legislator from Pittsburgh, was among the first politicians to say African Americans in his hometown were missing out on covid protections. Last month, Gainey was elected the city’s first Black mayor, after winning a primary, within months of the murder of George Floyd, that pointed to inequities in health care and policing.
A Democrat who worked for two Pittsburgh mayors, Gainey admits he and other Black elected officials were somewhat ill-equipped in the first weeks of the pandemic.
"I fought hard to get the vaccine into the community last year, but I really didn't know the language -- the health language -- to be able to get it," Gainey said during an interview at a pop-up vaccine clinic in the city.
Vaccinations have risen because of community efforts, he said, but children are still a source of worry. Gainey, who grew up in a low-income housing complex, said he understands when some youngsters shrug when asked about covid risks. “But I will tell you I know this: If you can make a kid believe in Santa Claus, you can make them believe in the vaccine. And you know, I understand some of the young kids’ reluctance. I didn’t grow up going to the doctor regularly either,” he said. “I came from the same kind of environment.”
As the 2019 report made clear, many of the benefits of Pittsburgh’s tech-based economy -- a vaunted “ed-and-meds” renewal against the industrial decline of the 1980s -- still was largely bypassing African Americans.
The first year of covid was an iterative process of trying to stay ahead of the virus. Gary-Webb, who earned a doctorate from Johns Hopkins’ public health school, said it was also a time for Black residents to be heard about what they knew and saw in their neighborhoods.
The coalition, sustained by thousands of volunteer hours, attracted some funding earlier this year, notably for outreach and to pay for running datasets. Last month, the Poise Foundation was approved for a three-year, $6.99 million grant, federal money to be administered by the state health department to support an array of health partnerships in the region and, notably, to improve covid vaccine uptake in ZIP code areas the Black Equity Coalition identified as vulnerable. Among its goals: demographic messaging, data analysis on covid testing and education outreach in dozens of counties.
Gary-Webb counts herself among a group of “boomerang” Pittsburghers who have lived other places -- in her case, Baltimore, New York and Philadelphia -- and covid has helped them recalibrate how Black residents can participate in public health.
As she put it: “The health planners were saying, ‘Help us get out the message.’ We said, ‘No, we are not just getting out the message. We want to be talking about equity at the same time.’”
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