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‘For the greater good’: Black leaders in Baltimore work to overcome resistance to participating in COVID trials, other research

Freeman Hrabowski III and his wife, Jacqueline, volunteered earlier this year to participate in a local clinical trial for the COVID-19 vaccine candidate developed by Moderna, which is now seeking federal authorization for its use.

The couple wanted to set an example for others in the Black community.

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“There’s always a little fear, but we look at each other and say, ‘This is for the greater good,’ ” said Freeman Hrabowski, the president of University of Maryland, Baltimore County.

As many Americans eagerly wait for COVID-19 vaccines to be distributed, Black Baltimore leaders are working — with some success — to confront the glaring lack of people of color who participate in the important clinical trials needed to develop such medications.

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African Americans represent just 5% of the people in most clinical trials, but make up 12% of the U.S. population, according to the U.S. Food and Drug Administration. Not having enough people of color in medical trials can lead to problems with medications and treatments.

“There are issues of knowing whether a [COVID-19] vaccine will work on all subcategories including race, gender and age,” said Dr. Matthew Laurens of Baltimore’s Center of Vaccine Development and Global Health. “As humans we are 99% similar, but that 1% can make a big difference.”

Efforts to convince Black and brown people to participate in clinical trials are crucial to overcoming a sometimes racist past in medical research and to improving health outcomes for racial minorities, experts say. Consider that African Americans are twice as likely as white people to develop Alzheimer’s disease and Black residents of Maryland represent nearly 50% of COVID deaths, but only make up 31% of the state’s population, according to Pew Research.

Freeman Hrabowski, president of University of Maryland, Baltimore County, receives a Moderna mRNA Covid-19 vaccine as a participant in a clinical trial at University of Maryland School of Medicine.
Freeman Hrabowski, president of University of Maryland, Baltimore County, receives a Moderna mRNA Covid-19 vaccine as a participant in a clinical trial at University of Maryland School of Medicine.

Starting in August, representatives of the Center of Vaccine Development at the University of Maryland School of Medicine handed out flyers around Baltimore and worked to connect with minority communities. The goal was to find Black and brown people to participate in the Moderna clinical trial.

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The trial was needed to determine whether the vaccine could prevent coronavirus infections. About 30,000 people were expected to participate at 89 sites, according to the National Institutes of Health. In Baltimore, 48 participants took part in the trial at the University of Maryland, with more than 50% of the volunteers being people of color.

The trial participants were given two intramuscular injections, one month apart from each other. They either got two shots of the vaccine or two shots of a placebo. Volunteers didn’t know which one they were getting at the time of injection.

After it was over, Hrabowski said the couple felt sluggish for three days. They recorded their symptoms in a journal. They are also required to have blood work done every six months to track how their bodies are reacting.

Hrabowski said he doesn’t feel that he is putting his life on the line by participating in the trials.

“We have been educators and mentors for a long time,” he said. “We would not do something like this if we didn’t believe it was safe for other people.”

COVID-19 vaccine researchers at the University of Maryland School of Medicine are screening UMBC President Freeman Hrabowski before he receives a Moderna mRNA vaccine.
COVID-19 vaccine researchers at the University of Maryland School of Medicine are screening UMBC President Freeman Hrabowski before he receives a Moderna mRNA vaccine.

As the community effort to convince other reluctant potential volunteers continues, Thurka Sangaramoothy, a cultural anthropologist with a background in pandemics, said health care professionals need to ask themselves some serious questions about how to gain the trust of people of color.

“Do the people in the community know you? Are you an advocate? Are you competent in delivering a program aligned with the community?” Sangaramoorthy asked. “There are very few professionals who can say ‘yes.’ They are just in a race to find a cure.”

Until those concerns are acknowledged, Sangararmoorthy said, mistrust between communities of color and the medical field will remain an issue.

“A vaccine is called a magic bullet solution because it’s a quick fix, but people still feel like their concerns are being brushed off when they go to the doctor. That’s an issue a magic bullet can’t fix,” she said.

The Maryland vaccine development center is seeking participants for another COVID-19 trial launching this month.

Laurens said the progress made on the current vaccines could not have happened without clinical trial volunteers.

“I think that we should thank all of the volunteers and consider them to be true American heroes.” he said.

The effort to encourage more Black participation extends beyond clinical trials.

When Black people with certain health conditions die and their bodies end up in the Maryland medical examiner’s office, their families may receive a call asking a difficult question: Would the deceased’s loved ones agree to donate the person’s brain to science?

The call comes from a group of top-tier scientists, Black Baltimore leaders and Morgan State University, who are all part of the African Ancestry Neuroscience Research Initiative, anchored at the Lieber Institute for Brain Development on the John Hopkins University medical campus. They urge families to help people with brain diseases by donating their loved one’s brains.

The Rev. Alvin Hathaway, a West Baltimore minister and community volunteer, is one of the leaders of the initiative.

Dr. Daniel R. Weinberger, director and CEO of the Lieber Institute for Brain Development, left, and Alvin C. Hathaway Sr., senior pastor at Union Baptist Church, in one of the research labs at LIBD. They are working together on the African Ancestry Neuroscience Research Initiative to reverse past discrimination in research.
Dr. Daniel R. Weinberger, director and CEO of the Lieber Institute for Brain Development, left, and Alvin C. Hathaway Sr., senior pastor at Union Baptist Church, in one of the research labs at LIBD. They are working together on the African Ancestry Neuroscience Research Initiative to reverse past discrimination in research. (Amy Davis / Baltimore Sun)

Hathaway said learning about the consequences of the long-standing lack of inclusion in medical research hit him like so many other acts of discrimination that Black and brown people have endured.

“When it came to my attention, I had the same feeling of social injustice as when I was a child and my mother went in the Hecht Company and could not try on a dress,” said Hathaway, senior pastor of the historic Union Baptist Church.

Jeffrey Kahn, director of the Berman Institute of Bioethics at Johns Hopkins, said the history of Black people and medical research is fraught with exploitation.

One notorious example is the secret experiment beginning in the 1930s that denied syphilis treatment for Black men in Tuskegee, Alabama. Then there is the case of Baltimore’s Henrietta Lacks,an African American woman who died of cervical cancer at Hopkins in 1951. Her cells were taken without consent and used to develop some of modern science’s greatest breakthroughs.

Contributing to the fear and reluctance of Black people to sign up for scientific research was a past emphasis in research policy on the risks, rather than the possible medical benefit, Kahn said.

Moving forward, Kahn said, researchers must communicate the importance of participation for the overall promise of better medical outcomes.

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Hathaway, for example, is a 20-year participant in a long-term NIH trial on aging. He said he is motivated to be part of research to help make sure that scientists have access to data from people with African ancestry to develop the best medicine, protocols and cures to treat illnesses and disease when they strike.

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The neuroscience initiative’s work “is going to involve clear stakeholders and a wide variety of institutions and individuals from Baltimore, so when people bring their skepticism to it, they will find validators that they trust,” Hathaway said.

Black churches, historically Black colleges and universities, and African American scientists, philanthropists and business leaders are part of the effort to communicate the importance of the research across various networks and to build trust to increase Black participation.

Morgan State University joined the initiative to help ensure that there was a pipeline of scientists of color. The university’s students will work as researchers in the land on the project.

Kim Sydnor, dean of Morgan’s School of Community Health and Policy, said representation is not just about having people of a particular melanin involved, but having different representation of thought, backgrounds and mindsets.

“Everyone thinks biomedical research is so pure that it lacks any subjectivity, but that is actually not true,” Sydnor said. “Who asks the questions? What are the questions? What are assumptions?

“Morgan being included in this project broadens that perspective and that diversity and represents a broader spectrum of thought,” she said. “We may just well transform the nature of science, not just be included it in, but transform it by our participation.”

Dr. Daniel R. Weinberger, director and CEO of the Lieber Institute for Brain Development, left, and Dr. Alvin C. Hathaway Sr., senior pastor at Union Baptist Church, are working together on the African Ancestry Neuroscience Research Initiative, Its mission is to reverse the past discrimination in research that has been partly responsible for disparate health outcomes for racial minorities. Nov. 17, 2020. p1
Dr. Daniel R. Weinberger, director and CEO of the Lieber Institute for Brain Development, left, and Dr. Alvin C. Hathaway Sr., senior pastor at Union Baptist Church, are working together on the African Ancestry Neuroscience Research Initiative, Its mission is to reverse the past discrimination in research that has been partly responsible for disparate health outcomes for racial minorities. Nov. 17, 2020. p1 (Amy Davis / Baltimore Sun)

For its part, the Lieber Institute has what’s believed to be the country’s largest repository of brains donated by African American families. More than 700 families have given Lieber brain material. The majority are from Maryland.

Dr. Daniel R. Weinberger, the institute’s director said the research can be the key to understanding complex neurological puzzles, including why African Americans are 20% more likely than the general population to experience serious mental health problems. Or explain the disparity in Alzheimer’s disease cases.

Hathaway said just as Baltimore is the birthplace of Henrietta Lacks and her immortal “HeLa” cells, the city could be synonymous with a movement advancing medical research for Black people.

All of the work won’t right past wrongs, Hathaway said — “Henrietta Lacks will be Henrietta Lacks, but the history will show we’re learning. We are seeking to get it right.”

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