COVID-19: The 'Tuskegee Effect'
An APR feature
The number of COVID-19 cases continues to climb in Alabama. Data is showing people in rural areas are at an increased risk of having complications with the disease. But there is another group that is disproportionately at risk of contracting and even dying from the illness.
“At first we weren’t getting a lot of data from hospitals," said Dr. Lea Yerby, the vice chair of the Department of Community Medicine and Population Health at the University of Alabama.
She’s referring to data on COVID-19 and African Americans. Once the facts started flowing, an alarm went off.
"We're starting to see that, yes, it looks like there are a disproportionate number of cases in African Americans in the state of Alabama.”
Black people make up a third of Alabama’s population. However, the Alabama Department of Public Health says around 40 percent of cases and over half of deaths are in African Americans. Yerby said there are several factors at play, and they’re not medical.
“Social determinants of health such as education, income, housing, transportation, all of those things are what lead to higher rates or heart disease and diabetes," she said.
And those conditions lead to complications when someone contracts COVID-19. Another factor that may be making matters worse is something called the “Tuskegee Effect.”
Dr. Rueben Warren is the director of the National Center for Bioethics at Tuskegee University. We spoke to him a few years ago during our coverage of rural health in Alabama.
“It’s in what I call the institutional memory of people throughout this country in ways they don’t even know it," he said.
Warren was referring to a secret study of untreated syphilis in rural black Americans in Alabama. The so-called Tuskegee Syphilis experiments on black men created a general distrust of the federal government and hospitals. Now, fast forward to today and the arrival of the coronavirus.
Dr. Brittney Anderson practices in the rural town of Demopolis for University Medical Center.
“One of the things we’ve seen from that, in the African American community is especially the misinformation, or not being able to receive adequate information about the illness has been something that has slowed the rate or slowed how quickly people are responding," she said.
Anderson said the coronavirus pandemic is exposing some major problems.
“And it really is showing the true disparities that are present and how these disparities that are already in place, are a breeding grounds for a pandemic like this to have a really strong, negative effect," she said.
It is dealing with these disparities that can help make conditions better in the long run. Yerby said this problem has been building up for some time.
“It’s a human creation, right, of the systemic, institutional racism that has been prevalent in our country and particularly in our state," she said.
One of the ways she proposes to help is for better job creation in regions like Alabama’s Black Belt, because many African Americans work in jobs that are not overly accommodating.
“It's whether or not you have the privilege to choose to work from home. It's who is most likely to have the jobs of people putting themselves at risk for us right now." she said. "It's not just African Americans and minorities but proportionally it is more.”
“Providing sustainable work for people, particularly the minority populations so that is something that has to take place across the state but again definitely in our rural areas," she said.
Sustainable work, better infrastructure, elimination of food deserts and access to better health care. These are all things being suggested to help poor, rural and minority communities. These efforts take time, for now, many are focusing on health during this crisis. Anderson said healthcare have some work to do.
“When you think about heart disease, hypertension, diabetes, asthma, these are all things that in the state of Alabama African Americans are markedly, disproportionately affected," she said. "Those are things we, as healthcare providers will continue to address, but we ask patients to work with us to help us address those needs as well.”
During our talk with Warren in 2017, he said there are some things those in government tend to overlook when it comes to the health of its citizens.
“We live in an environment people are supposed to have their needs met, and the needs are beyond life and death and suffering is something that we do no address fully. We address life, death but not suffering," he said.
He did offer some advice to healthcare workers, especially when dealing with rural, low income and minority groups.
“We ask to be trusted but we don’t talk about trustworthiness. I would suggest that we shift the paradigm from 'Do you trust me?' to 'Am I trustworthy?'” he said. "Once I prove myself trustworthy, then trust comes automatic so that paradigm shift is critically important and not talked about and I think we need to talk about it.”
Anderson said she’s glad people are finally talking about the problems the black community is facing but is disappointed too.
“It’s really unfortunate that we wait until a disaster such as COVID-19 comes into play or a pandemic to this magnitude comes into play before we really start to focus on the disparities that are there," she said.