The Black Equity Coalition, a grassroots team of researchers and advocates, meet regularly to discuss how they can use data to uncover life-threatening disparity between white and Black Pittsburgh. Left to right are Mark Lewis, Tiffany Gary-Webb, Fred Brown, and Kellie Ware.
Martha Rial is a person.
Black Pittsburgh, communities that make up a quarter of the city's population, thought impossible when the COVID-19 pandemic hit. The norms were shook by it.
Black researchers, medical professionals and allies knew that people of color 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 create databases from unwieldy state data to chart COVID-19 cases.
The work documented that people of color in Pittsburgh were at higher risk of catching the deadly virus and dying from it.
We came together because we wanted to save lives.
Tiffany Gary-Webb is the associate dean for diversity and inclusion.
More than 100 weeks after advocates began pinging and ringing one another to warn of the virus' spread, these volunteers are the bedrock of the Black Equity Coalition, a grassroots collaboration that scrapes government data and shares community health intel.
The data team of 60 meet twice a week to study the statistics. Social media advisers turned health equity into a buzzy online effort, with videos and weekly Facebook town halls to encourage vaccinations. Volunteers take surveys at pop-up clinics and local ministries are consulted. Legislators seek its counsel.
Tiffany Gary-Webb, associate dean for diversity and inclusion at the University of Pittsburgh, says they came together because they were concerned about saving lives. It evolved because we realized we can do more than address COVID.
Colin Powell, the first Black secretary of state and a decorated Army general, was one of the 787,000 Americans who died from carbon-19.
The Pittsburgh City Council declared a public health crisis because of racism.
The councilman says institutional racism is real. You are talking about disproportional investment and disproportional treatment. All that you see is impacted by it.
The coronaviruses showed how structural inequalities have been missed.
I've lost a lot of people. My son had a substance in his system. He says it's personal for him. I knew it would have a big effect.
The National Center for Health Statistics says that COVID-19 reduced life expectancy in the U.S. Black and Hispanic people lost more than three years in life expectancy. White people saw a decline.
Black residents of the county have seen disproportionate hospitalization rates, and have been more likely to land in the intensive care unit or on a ventilator. Surges of infection in April, July and December 2020 and again in March and October 2021, resulted in higher weekly hospitalization rates. Deaths fluctuated after December 2020.
The coalition says that death rates for African Americans have been higher than for other groups.
It's all a shade of bad.
Health inequity is a problem that has been considered by Ware. She attended public schools in Pittsburgh and then went to law school in Boston. She was an equity and diversity policy analyst in the mayor's office when the coronaviruses began.
Ware was at her desk when her phone rang. The city's gender commission and university sociologists compiled a report detailing glaring differences.
The blandly titled report, "Pittsburgh's Inequality Across Gender and Race," shocked the city of 303,000 people and underscored how health disparity is related to income.
Black people in Pittsburgh earned less than their white neighbors and had higher rates of cardiovascular disease and cancer. Black women earned 54 cents for every dollar white men earned, making them five times as likely to live in poverty as white men. White residents have a life expectancy of about eight years more than that of black residents.
The report caused a furor. Ware says that the report was factual. I know that there are not many places where Black women can be proud. Those earnings? 54 cents to a dollar is what it costs for women in Pittsburgh. It's not cheap, but it's worth it. It's all bad.
Ware and others were strengthened by the first signs of the Pandemic. Karen Abrams, a program officer at the Heinz Endowments in Pittsburgh, began connecting dots in texts and calls after the disaster in New York.
In dense multi-generational households and in Black neighborhoods in Chicago, Washington, New Orleans and Detroit, COVID-19 spread quickly. In Pennsylvania, she was one of the advocates who watched county and state health systems race to prepare and feared that Black residents would be underserved.
Volunteer doctors in mobile units began giving out protective equipment and coronaviruses in Black neighborhoods in Philadelphia early in the Pandemic. In Pittsburgh, Abrams asked tech-minded allies to document the spread of infections. She says that they knew what was happening. Without that data, we couldn't target our attention to those who needed it the 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.
The president of the Forbes Funds and the head of the Poise Foundation were stalwarts of theuddle.
The essential workers who were keeping the city running were mostly black or Latino.
He says that mapping the locations of the testing centers proved to be sobering. People who lived in predominantly white neighborhoods were most likely to be tested. They are employed in tech, academia and finance. They had round-the-clock internet at home and could afford food deliveries. They could get the coronaviruses shots more quickly when they were distributed.
The affluent ones had the most tests. The people who had to go out and work were the ones with the lowest.
Lewis spent years as a corporate auditor and focused on improving the standards of the data collected. He says that county and state health professionals worked to control the spread of the coronaviruses but didn't always gather data that could be used to ensure fairness in distribution of testing sites.
"We realized that it wasn't being recorded by race," Lewis says. Why? There was no requirement to collect it at the state and local level.
Gary-Webb says that researchers had a sense of where the inequalities would be found. They put together percentages of Black families in poverty as well as data on the locations of health centers to advise health authorities on where and when to increase testing.
As they worked, researchers found anomalies. Race was noted on some testing data, with some patients designated as Black, white or unknown. The "unknowns" made up a significant percentage. The data analysts began to layer additional census, labor and ZIP code data to identify neighborhoods that were at risk.
Government software was slow during the swine flue and government data was not updated regularly or formatted in a way that would allow it to be easily shared, which caused the ZIP code data to stay in state databases for months.
The group was able to get Allegheny County records to include race in 12% of positive cases of COVID-19, and 37% of statewide records are missing race details.
Robert Gradeck, who manages the Western Pennsylvania Regional Data Center, says that the experience of the Pandemic will help improve the gathering and reporting of public health data. We kept wondering what we could learn from this. Gradeck says so. It's not that you can't answer questions. You can only answer part of them.
Software practices should be used to ensure that demographic data is entered into electronic records. And refine how to share data with other people.
State Health Secretary Rachel Levine, recently sworn in as a four-star admiral in charge of the U.S. Public Health Service Commissioned Corps, has supported the coalition in monthly calls.
Levine thinks the coalition's research is important. They were able to use and collect data with a diverse group of professionals.
The rate of COVID-19 among black people in Allegheny County was three times that of white people. According to the coalition's report, hospitalizations have been seven times higher for Black people than for whites.
There are ongoing worries about children.
Ed Gainey, a state legislator from Pittsburgh, was one of the first politicians to say African Americans in his hometown were missing out on protections. Gainey was elected the city's first black mayor last month after winning a primary that pointed to inequalities in health care and policing.
Gainey, a Democrat who worked for two Pittsburgh mayors, admits that he and other Black elected officials were not prepared for the swine flu.
Gainey says that he didn't know the language of the health language to be able to get the vaccine.
He said that children are still a source of worry despite the rise in vaccinations. Gainey, who grew up in a low-income housing complex, understands when some kids don't care about the risks.
If you can make a kid believe in Santa, you can make them believe in the vaccine. I understand some of the young kids' reluctance. He says he didn't go to the doctor often. I came from the same place.
Many of the benefits of Pittsburgh's tech-based economy, which has reversed the industrial decline of the 1980s, is largely bypassed by 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 the public health school, said that it was a time for Black residents to be heard about what they were seeing in their neighborhoods.
The coalition, which is supported by thousands of volunteer hours, received some private foundation funding earlier this year. The Poise Foundation was approved for a three-year, $6.99 million federal grant that will help expand the work of the coalition. The money will be used by Poise to support health partnerships in the region. The Black Equity Coalition has identified ZIP codes that are particularly vulnerable to the effects of the vaccine. Better demographic messaging and data analysis on COVID-19 testing and education outreach are among the grant's goals.
Gary-Webb is part of a group of Pittsburghers who have returned to their hometowns after living in other places. She says that the Pandemic just accelerated their efforts.
She said that the health planners were trying to get out the message. We said that we are not just getting out the message. We want to talk about equity at the same time.
Kaiser Health News is a program of the Kaiser Family Foundation. KHN is not affiliated with Kaiser Permanente.
