ST. LOUIS • As part of her social work training in 1960, Bernice Thompson visited black patients in the basement at Barnes Hospital because it was segregated.
Nearly 60 years later, she underwent a brain scan on the hospital’s 10th floor as a volunteer for a research study on Alzheimer’s disease.
Thompson, 81, is part of a movement at Washington University to overcome the history of mistreatment of African-Americans in medical research and improve the diversity of its clinical trials.
“I really do want to see more African-Americans participate in the studies,” Thompson said. “We need to know how we can help each other survive.”
Most new drugs and therapies are tested in middle-aged white people. Without minority participation in clinical trials, researchers can’t determine whether new treatments will harm or benefit people of all races and “the science suffers,” said Dr. Lannis Hall, director of radiation oncology at Siteman Cancer Center.
Ideally, participants in clinical trials should reflect the community where the drugs are tested. In reality, it’s rare. For St. Louis, it means that clinical trials have historically excluded African-Americans.
The problem is that people are not all the same when it comes to health issues. Men and women respond differently to treatments. Children are not just little adults. And there are genetic and socioeconomic factors that contribute to differing incidence and death rates among races.
“The only way to make sure that a new drug will be effective for our diverse population is to have diverse participants in clinical trials,” Hall said.
African-Americans are twice as likely to develop Alzheimer’s disease, and have a 20 percent higher death rate from cancer compared to whites.
Scientists say the discrepancies can be attributed in part to a lack of participation in clinical trials, which can cheat African-Americans out of treatments that are most appropriate and effective for them. While African-Americans make up 13 percent of the U.S. population, they represent 5 percent to 8 percent of clinical trial participants nationwide.
For example, annual mammograms are recommended starting at age 50 for all women, yet black women who develop breast cancer are generally younger than white women. Black men have a higher risk of developing prostate cancer, but current screening guidelines are based on a study that was almost exclusively made up of white men.
“If anyone should be overrepresented in a clinical trial, it should be a population that’s most burdened by the disease,” Hall said.
Researchers started realizing that diversity in clinical trials was important when women had severe reactions to blood pressure medications that had been tested predominantly in men. In 1993, the National Institutes of Health revitalization act required clinical trials to include a representative group of volunteers, including women and minorities. Since then, the percentage of women participating in research has significantly increased, but there is still work to be done with racial diversity.
To recruit a more diverse group of volunteers at Siteman Cancer Center, an outreach team advertises clinical trials in the St. Louis American, an African-American newspaper, on radio and at events in the black community.
History of mistreatment
One barrier to participation is the historical abuse of black people in medical research, particularly the Tuskegee syphilis tragedy.
In the Tuskegee, Ala., study that started in 1932, hundreds of black men with syphilis were — without their knowledge — not properly treated for the disease. The study went on for 40 years, and the men never received penicillin to treat the disease, which can lead to paralysis and blindness.
Wiley Paul, of St. Peters, said the Tuskegee study was on his mind when he agreed to enroll in a prostate cancer trial at Washington University after his 2014 diagnosis.
“People remember things that are tragic. They stay with you. It’s going to take generations to get past it,” he said.
Paul said it helped that Hall, who recruited him for the study, is also African-American.
“There was a comfort level there,” said Paul, 61. “What it boils down to is trust … The only way you’re going to get answers is to be part of the trial.”
Locally, Barnes Hospital hired its first African-American nurse in the 1940s, when black patients were still treated in the basement. St. Louis city hospitals weren’t desegregated until 1955, and discriminatory policies remained until the 1970s and 1980s.
Targeting Alzheimer’s research
In 2000, the African American Advisory Board at the university’s Knight Alzheimer’s Disease Research Center was launched under chairman and local civil rights leader Norman Seay.
Since the board was founded, the center has raised the number of African-American volunteers in Alzheimer’s research from 3 percent to 18 percent, about the same as the population in the St. Louis area.
Recruiters need to be embedded in the community, engaging at festivals and partnering with religious leaders, said members of the outreach team. On a recent Saturday, a team from the Knight Center visited Third Presbyterian Church in Moline Acres to discuss Alzheimer’s disease and encourage people to participate in the research.
The Rev. Cedric Portis said it can be difficult for his parishioners to make time to travel to the university for trials. He said he preaches a message of legacy to encourage participation in medical research.
“You have to look generationally down the road. What am I doing for my grandchildren and great-grandchildren?” Portis said. “Being legacy-minded breaks down some of the barriers of trust.”
Myrtis Spencer, a community outreach coordinator for the center, also works to build trust by attending Urban League and NAACP events and speaking to the Mound City Medical Forum, an African-American doctors group.
“We’re visible in the community and not just asking community members to do something; we also participate (in the research),” Spencer said.
The center’s Memory and Aging Project involves yearly interviews, blood samples, brain scans and lumbar punctures to try to detect Alzheimer’s disease before symptoms begin and understand how the disease progresses.
But lumbar punctures, or spinal taps, have a negative image because they were used to diagnose syphilis in the Tuskegee study. Because of African-Americans’ skepticism about the test, it is not a requirement for them to join the memory project.
“We hope they will eventually agree to do it, but we know it has such a bad history,” said Andrea Denny, outreach, recruitment and education core leader with the center.
Bernice Thompson, who is a past chairwoman of the African American Advisory Board, said she plans to get a lumbar puncture to show other African-Americans that they can trust modern research methods.
“That weight is on my shoulders. I see it as my responsibility, whatever I can do to enhance the understanding of how our bodies function,” she said.
While building up a racially representative cohort of volunteers, Dr. John Morris, director of the Alzheimer’s center, said he has tried to diversify the staff, as well.
“People of color, when they come here, like to see people who look like them, and we don’t have enough,” he said.
The work is crucial to understand why the disease affects black people more often, and how it progresses differently, Morris said.
“Over time, hopefully, they’ll come to perceive that we are here not to treat them as guinea pigs but as participants in our research,” he said. “We can’t do it without them.”