Wisconsin program director spent years building trust to get more Blacks involved in research
BY CROCKER STEPHENSON
MILWAUKEE JOURNAL SENTINEL
TRIBUNE NEWS SERVICE
MILWAUKEE — While African-Americans are nearly twice as likely as Whites to develop Alzheimer’s disease, a history of abuse and arrogance by the scientific community is frustrating efforts to recruit people of color to join dementia research programs.
Consider Henrietta Lacks, suggested Gina Green-Harris, director of the Wisconsin Alzheimer’s Institute’s Milwaukee Outreach Program.
Lacks was a 31-year-old African-American mother of five who died of cervical cancer in 1951 and was buried without a tombstone in Halifax County, Va.
Today, she has been made famous by the book “The Immortal Life of Henrietta Lacks” and is known to scientists throughout the world by the first two letters of her first and last name: HeLa.
Eight months before Lacks’ death, a doctor at what was then Johns Hopkins Hospital removed a slice of her malignancy and gave it to George Gey, a researcher trying to find human cells capable of living outside the body.
Family didn’t know
Without Lacks’ knowledge or permission, Gey cultured her cells. It was a medical breakthrough, and Gey freely distributed Lacks’ cells to researchers throughout the country.
Jonas Salk used Lacks’ cells to develop the polio vaccine. They have been launched into space and used in the production of drugs to treat Parkinson’s, leukemia and the flu. Commercialized, they have generated millions of dollars in profits and countless Ph.Ds. Their reproduction is measured in metric tons.
Lacks’ family got nothing. They didn’t even know the cells had been taken until the mid-1970s.
And while the ethical and legal issues raised by Lacks’ story are still debated, it has particular meaning, Green-Harris said, for African-Americans.
“Folks that remember what happened to her,” Green-Harris said, “those folks are still alive.”
“What we are bucking up against,” she said, “is history.”
Lack of respect
Green-Harris has spent years bucking against history, knocking down its walls and replacing them with bridges — cultural viaducts — that stretch from Milwaukee’s Black neighborhoods all the way to the University of Wisconsin-Madison’s School of Medicine and Public Health.
When she began her work in Milwaukee in 2008, the first wall she hit was a stigma uniquely associated with her cause.
“Not about Alzheimer’s,” she said. “About UW.”
“The community was, like: ‘Well, you come and take from us, but you don’t give us anything. You come and take information from us, and then you don’t come back and disseminate it,’” she said.
“Researchers don’t respect our culture and our values. They come to the community saying, ‘This is about my agenda.’”
Andrea Garr, a dementia care specialist and researcher at the Milwaukee Department of Aging, said that kind of arrogance grinds hard against old wounds.
The African-American community, she said, has “had to be self-contained. We’ve had to be self-reliant. We have had to do it ourselves because we could not trust the greater community to do anything for us.”
“In fact,” she said, “they will come in and destroy us. Look at history. Time after time after time, the greater community has come in and destroyed our community — over and over again.”
Studying risk factors
Setting up a well-intended research program is not enough to pierce this mistrust.
“Just because you build it, we may not come,” Garr said.
Green-Harris is part of the Wisconsin Registry for Alzheimer’s Prevention.
Its goal is to better understand the biological, medical, environmental and lifestyle factors that can increase the risk of developing Alzheimer’s. Enrollment began in 2001, and more than 1,500 people have volunteered across the state. The goal is to follow participants for 15 to 20 years.
By 2008, the study included only seven African-American participants.
“If we, African-Americans, don’t participate in the research, here’s what’s going to happen,” Green-Harris said.
“When we find the intervention, when we find the cure, when we find something that is preventive — if we are not part of this, it won’t reflect us, and we won’t be able to use it.”
When Green-Harris began her outreach to Milwaukee’s African-American community, it was by providing services. She asked people what they needed. She asked what concerned them most.
Heart disease? Then she offered support for families dealing with heart disease. Financial stability?
She offered workshops on financial literacy. Diabetes? Here, she said, is what we can do to help.
Cancer? Here’s how we can help you.
“We started where they needed us to start,” Green-Harris said. “And we listened. It was not about research. It was about service.”
In time, people began to ask about the Alzheimer’s program. That, Green-Harris said, is how she knew people wanted to hear about it: They asked.
“This wasn’t six weeks,” she said. “This wasn’t even six months. This was almost a year and half later. The community began to trust us. The community began to see we were really here.”
The number of African-American participants has grown to 122. The goal is to double that.
Karen McElwee Lloyd is one among those 122.
Lloyd watched Alzheimer’s hollow out the lives of her two aunts before it took the life of her 88-year-old mother, Rosalie, in March 2013.
Lloyd, who is 53, has a 17-year-old son, Xavier, and she says what motivated her to join the WRAP study trumped any reservations she might have had about the history of medical research in the African-American community.
“Love,” she said. “It was about my mom. It was about my son.”
On a recent evening, Lloyd sat at the computer in her living room, Xavier seated nearby, filling out a college financial aid application.
“It’s too late for my mom. It’s probably too late for me. But it’s probably not too late for Xavier,” she said.
Lloyd’s mother lived for 11 years after her diagnosis. At one point, Lloyd was caring for her mother, caring for Xavier and working two full-time jobs. There were times of utter exhaustion.
She gave Xavier a hug.
“This is my child,” she said. “By the time he reaches his 60s, maybe there will be a cure, or maybe a way to slow its progression.”