The ferocity of the COVID-19 pandemic did what Black Pittsburgh communities, which 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 experienced bias in public health policy, even before the pandemic. 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-19 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's spread, these volunteers have become 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 at barbershops and hair salons. Elected lawmakers seek its counsel.

"We came together because we were concerned about saving lives," says 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-19 ravaged communities across the United States — as of the first week of December, 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.

Months before the pandemic even began, the Rev. Ricky Burgess led the Pittsburgh City Council to declare racism a public health crisis.

"Institutional racism is for real," the councilman says. "You are talking about generational disproportional investment and generational disproportional treatment. And it impacts all that you see."

The coronavirus pandemic proved how structural inequities have been missed or ignored, Burgess says.

"I've lost friends, family and a lot of church members. My son had COVID. For me, it's personal," he says. "I knew immediately it would have a disproportionate effect."

In 2020, COVID-19 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 in this regard, losing more than three years in life expectancy. White people saw a 1.2-year drop.

Using Allegheny County data in the Pittsburgh area, the Black Equity researchers have found a sobering racial gap during the pandemic: Black residents of the county have seen disproportionate hospitalization rates — and have been more likely to land in the ICU or on a ventilator. 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 have been higher for African Americans than for other racial groups, the coalition says.

'It's all a shade of bad'

Kellie Ware has long considered health inequity a deadly problem. She graduated from Pittsburgh public schools and left for law school in Boston. In the months before the coronavirus 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 about 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 had notably higher rates of cardiovascular disease and cancer. 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. Black residents' life expectancy was about eight years less than that of white residents.

The report sparked a furor. "The report was factual," Ware says, noting that Pittsburgh's not unique. "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 to protect their community. As COVID-19 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-19 spread quickly in dense multigenerational 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 in the pandemic, volunteer doctors in mobile units began distributing protective equipment and coronavirus tests in Black neighborhoods. In Pittsburgh, Abrams asked tech-minded allies to document the breadth of the spread of infection in Pittsburgh. "We intuitively knew what was happening," she says. "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 who were keeping the city running — among them nursing homes aides and home care staff — were overwhelmingly Black or Latino.

Mapping the locations of COVID-19 testing centers and analyzing that data has proved sobering, he says. People most likely to be tested lived in Pittsburgh's predominately white neighborhoods. Largely employed in tech, academia and finance, those residents 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, when coronavirus vaccines were developed and distributed, they could get those shots more quickly, too.

"The communities that had the most tests were the affluent ones," Brown says. And those with the fewest were "the people who had to go out there and work."

Lewis, a certified public accountant who spent years as a corporate auditor, focused on improving the standards of the data collected. County and state health professionals worked mightily to control the spread of the coronavirus but didn't always gather data that could be used to ensure fairness in distribution of testing sites, he says.

"We realized that, as testing was done, it was not being recorded by race," Lewis says. "Why? A lot of the issue was at the state and the local level — there was no requirement to collect it."

Gary-Webb says 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, the data analysts 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 because government data was not updated regularly or formatted in ways that would allow it to be easily shared.

Their efforts paid off: The group was able to winnow down Allegheny County records that omit race to only 12% of positive cases of COVID-19; 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 managed by the University of Pittsburgh, says the experience garnered in this pandemic should play a lasting role in improving the gathering and reporting of public health data. "We kept thinking: What can we learn from this?" Gradeck says. "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 has attracted support in monthly calls with state Health Secretary Rachel Levine, recently sworn in as a four-star admiral in 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 says, calling the coalition's research 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 rate of COVID-19 among Black people in Allegheny County to be three times the rate among white people. Hospitalizations among Black people have been as high as seven times the rate among whites, according to "Missing Our Shot," the coalition's 2021 report.

Ongoing worries about children and COVID-19

Ed Gainey, a state legislator from Pittsburgh, was among the first politicians to say African Americans in his hometown were missing out on protections against COVID-19. Last month, Gainey was elected the city's first Black mayor, after winning a primary 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 says.

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, says he understands when some youngsters shrug when asked about COVID-19 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 says. "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 that has reversed the industrial decline of the 1980s —is largely bypassing African Americans.

The first year of the pandemic was an iterative process of trying to stay ahead of the virus. Gary-Webb, who earned a doctorate from Johns Hopkins' public health school, says it was also a time for Black residents to be heard about what they knew and were seeing in their neighborhoods.

The coalition, sustained by thousands of volunteer hours, attracted some private foundation funding earlier this year, notably for outreach and to pay for running datasets. Last month, Poise Foundation was approved for a three-year, $6.99 million federal grant that will help expand the work of the coalition. Poise will use the money, administered by the Pennsylvania state health department, to support health partnerships in the region. Notably, the funds will be used to improve the uptake of COVID-19 vaccine in ZIP codes that the Black Equity Coalition has identified as especially vulnerable. Among the grant's goals are better demographic messaging and data analysis on COVID-19 testing and education outreach in dozens of counties.

Gary-Webb counts herself among a group of "boomerang" Pittsburghers who, after living in other places — in her case, Baltimore, New York and Philadelphia — have come home to recalibrate how Black residents of their city can participate in public health. The pandemic just accelerated their efforts, she says.

As she put it: "The health planners were saying, 'Help us get out the message' " about COVID-19. "We said, 'No, we are not just getting out the message. We want to be talking about equity at the same time.' "

Kaiser Health News is an editorially independent newsroom and program of the Kaiser Family Foundation. KHN is not affiliated with Kaiser Permanente.

Copyright 2021 Kaiser Health News. To see more, visit Kaiser Health News.

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