Alzheimer’s disease is like two deaths, said Stephanie Griffin, whose father died of the brain disease in 2015.
“It’s horrific,” she said. “First, you watch them lose the ability to talk, to think, to do any of the things they used to do. And then, to see them pass because of it? It’s just … it’s a lot.”
Caring for a loved one with this fatal, progressive neurodegenerative disease is heartbreaking and exhausting. The challenges are particularly daunting in the African American community, where the disease is often poorly understood — despite Alzheimer’s being about twice as common among African Americans as other Americans.
Yet, African Americans largely have been left out of Alzheimer’s studies nationwide. For example, Aduhelm, a controversial Alzheimer’s drug approved in 2021, was evaluated in clinical trials involving just 19 people self-identified as Black or African American out of 3,285 volunteers.
These lower numbers reflect a failure by the mostly white research community to understand how African Americans view Alzheimer’s disease and participation in medical research.
Washington University has worked hard to break the national pattern. In 2000, it established one of the country’s earliest groups dedicated to increasing African American participation in Alzheimer’s research: the African American Advisory Board at the Charles F. and Joanne Knight Alzheimer Disease Research Center (Knight ADRC). Today, African Americans make up 17% of Knight ADRC volunteers, up from 3% in 1999.
“If you only study Alzheimer’s in white people, you only learn about Alzheimer’s in white people,” said John C. Morris, MD, the Harvey A. and Dorismae Hacker Friedman Distinguished Professor of Neurology and the director of the Knight ADRC. “Look at Aduhelm. Doctors just don’t know whether African Americans will benefit from it at all, or in the same way, or have the same side effects profile, because we don’t have the data.”
Alzheimer’s is a complex disease. Myriad biological and social factors influence who gets diagnosed, at what age and how quickly the condition worsens. These factors include family history, gender, education level, head injury, health conditions such as diabetes and high blood pressure, and cultural expectations around aging.
Regarding many of these factors, white and African American communities differ, rendering questionable the practice of using studies of white volunteers to guide care of African American patients. A recent Washington University research study revealed that three experimental blood tests designed to identify people in early stages of Alzheimer’s disease perform differently in African American individuals compared with white individuals. (A fourth test, PrecivityAD, based on Washington University technology, performed the same regardless of race.) Such tests, if standardized based on their performance in white populations, could put African American patients at risk of misdiagnosis and receiving inappropriate
No one looks like me
Washington University is a world leader in Alzheimer’s research. Its Memory and Aging Project, one of the earliest long-term studies of the aging human brain, began in 1979 and continues today. The Clinical Dementia Rating instrument, used worldwide to gauge dementia severity, was developed at the university in the 1970s and revised by Morris in 1993. But when Morris became director of the Knight ADRC in 1998, he noted a disturbing fact: All of this celebrated research had been done in study populations that were 97% white.
“I made a commitment to include more African Americans in our studies, but I had no idea how to do it,” Morris said. “I had no real understanding of the way people in the African American community in St. Louis felt about Barnes-Jewish Hospital.”
Despite his years as a physician in St. Louis, Morris did not fully appreciate that the city’s history of segregation had marginalized people in ways that continued to be felt.
“They (potential volunteers) recalled when Barnes Hospital seemingly only accepted African American patients if they had particularly intriguing medical conditions, and when the African American outpatient clinic was in the hospital basement,” Morris said. “That was more than 50 years ago, and since then Barnes-Jewish Hospital has made efforts to treat all patients equally and with respect. But this history is still painfully remembered by many older African Americans.”
Oblivious to the complexity of the task he had given himself, Morris started trying to recruit family members of his few African American patients. That’s where he got lucky: Norman Seay, a highly regarded civil rights activist and educator, came into his office one day with his mother, a patient of Morris’. Seay agreed to volunteer.
“After Mr. Seay went through the enrollment process, he said to me, ‘John, the entire time I was in your research office I did not see one person of color,’” Morris recalled. “I was so naïve. It had never crossed my mind that if we wanted people of color to feel comfortable volunteering for us, we needed to have a diverse staff. That’s when I knew I was in way over my head. I asked Mr. Seay to help me and the Knight ADRC become more culturally competent. Fortunately for us, he was willing to do that.”
Seay and Morris established the African American Advisory Board, with Seay as the founding chairperson. The board advises the Knight ADRC on cultural sensitivity and appropriate outreach strategies to encourage active participation by African Americans in memory and aging studies.
A national model
African Americans make up about 20% of U.S. Alzheimer’s patients, but only about 2% of Alzheimer’s clinical trial participants. The greater Alzheimer’s research community has been slow to begin addressing that disparity. In 2019, the National Institute on Aging (NIA) of the National Institutes of Health (NIH) issued guidance on recruiting more diverse populations into Alzheimer’s studies.
By the time the NIA issued guidance, the Knight ADRC had been steadily improving its relationship with the local African American community under the advisory board’s direction over nearly two decades. The board’s success is so impressive that ADRCs in other cities have sent teams to study its methods and bring back ideas to apply in their own communities. The key, according to the Rev. Douglass Petty, PhD, the board’s current chair, is that the board is genuinely empowered to influence how work is done at the Knight ADRC.
“It’s not a ‘We’ll call you when we need you’ arrangement,” Petty said. “We function as a sounding board for all the work that’s being done to build relationships with community organizations. And we’re not a silent group. These are very strong individuals who don’t mind using their voices. Anytime somebody comes to speak to the board, we ask questions. And our input is taken seriously. When grants are written, Dr. Morris always directs the research team to get letters of support from the board members as a way of showing that they have asked for, received and incorporated our input.”
Take spinal taps, for example. In this procedure, medical personnel pierce the spinal canal and withdraw small amounts of cerebrospinal fluid, a precious source of molecular clues to what is going on in the brain. But spinal taps have an undeserved reputation for being painful and dangerous, and many African Americans give them a hard pass. The board suggested that African Americans might be more willing to participate in Alzheimer’s studies if spinal taps are optional, not required.
The board also educates the local African American community about Alzheimer’s disease and the value of study participation. Recently, it produced a 30-second public service announcement with the tagline “Your participation is your power,” to be aired on St. Louis-area TV stations.
“Our culture doesn’t like to talk about what we consider negative things, and certainly Alzheimer’s is one of those,” said board member Beverley Foster. “I think it’s mostly because we don’t understand it. So, my goal has been to share as much information as possible. Black people are at risk because of systemic racism. And Black women are at the most risk because we live longer. That makes it important that we know that while there is not a cure for Alzheimer’s, there are things that we can do to be aware and stay healthy, independent and mobile as long as we can.”
Foster, like most of the board members, volunteers for Alzheimer’s studies. Board members have spoken at churches, festivals and other community events about the disease and their volunteering experiences to counter the widespread wariness of biomedical research in the African American community. Griffin, who is not a board member, volunteers for ADRC studies and hosts informational sessions at her African American church (see sidebar).
“You can’t expect people to participate without acknowledging the history of unethical research involving African Americans, such as the untreated syphilis study, the HeLa cells taken from Mrs. Henrietta Lacks, and the Cold War experiments that happened here in St. Louis, Missouri,” said Joyce Balls-Berry, PhD, an associate professor of neurology whose work focuses on promoting health equity.
The Tuskegee Study of Untreated Syphilis involved 400 African American men in Tuskegee, Alabama, who were led to believe they were being treated for syphilis for 40 years. In fact, they received no treatment; researchers merely observed them as the disease followed its natural, debilitating course. HeLa cells, the most widely used cells in biomedical research, are derived from cervical cancer cells taken from Lacks, a dying African American woman, without her knowledge or consent. In the 1950s and ’60s, the U.S. Army blew the toxic chemical zinc cadmium sulfide into predominantly African American neighborhoods in St. Louis as part of a biological weapons testing program.
Given the history of racial injustice in St. Louis and elsewhere, persuading African Americans to trust the mostly white medical establishment has been tough. But Petty said that Washington University has taken important steps toward proving itself trustworthy.
“After the Michael Brown situation, Washington University recognized and owned the fact that they are a part of this community and that they haven’t done some of the things that they probably could or should have done,” Petty said, referencing the 2014 police shooting of an unarmed, young Black man in Ferguson, a suburb of St. Louis. Brown’s killing set off unrest in Ferguson and galvanized the national Black Lives Matter movement.
“The university has taken concrete steps with diversity, equity and inclusion,” Petty said. “So that has helped, but you never stop. You never take things for granted, because it’s too easy for things to shift. You have to remain vigilant.”
Where do we go from here?
The Knight ADRC has been most successful at including African Americans in observational studies. Increasing African American participation in experimental studies like the Aduhelm clinical trials has been more challenging.
“There’s a big difference between asking volunteers to donate blood and asking them to take a new, untested medication,” said B. Joy Snider, MD, PhD, a professor of neurology who served as the Washington University site leader for the Aduhelm studies. “We definitely see some reluctance among our African American volunteers when it comes to receiving experimental therapies.”
Recruitment, however, is only one part of the problem, as trials often require a considerable commitment. “We may ask participants (and their caregivers) to come in once a month for 18 months to receive a four-hour drug infusion,” she said. “Not everyone has the time or resources to do that. And for safety and study design reasons, clinical trial participants need to be as healthy as possible, other than the disease under study. Members of historically minoritized communities are more likely than white volunteers to have other health conditions that make them ineligible.”
To address these and other structural problems limiting diversity in Alzheimer’s studies, Morris established the Health Disparities and Equity Core at the Knight ADRC in 2020, the first such core at an ADRC in the country, he said. The core, headed by Balls-Berry, is tasked with incorporating principles of diversity, equity and inclusion into every aspect of the center’s work.
“As a Black woman scientist, I always think about the fact that many times our voices aren’t heard,” Balls-Berry said. “How do we change that? There are a multitude of areas where this type of work will change the dynamic of health in the city of St. Louis and in the bi-state area and, hopefully, at a national level.”
Norman Seay died in 2019, but his legacy of fighting for inclusion in Alzheimer’s research lives on in the board and in the Knight ADRC’s annual Norman R. Seay Lecture on Alzheimer’s disease and equity.
After more than 40 years at the forefront of Alzheimer’s research, Morris has begun thinking of retirement. He has taken measures to ensure that the equity work he started with Seay will continue when he steps down. Morris and his wife, Lucy, have donated $100,000 to establish an endowment to provide ongoing financial support for the African American Advisory Board’s work.
“We can’t say we understand Alzheimer’s disease until we understand it in all people,” Morris said. “And we won’t understand it in all people until we start doing a better job of studying it in all people. We have a duty to provide the best possible care to all of our patients.”
African American Advisory Board
Established in 2000, the board counsels the ADRC research team concerning cultural sensitivity and appropriate outreach strategies to increase active, long-term participation of African Americans in memory and aging studies.
• Pastor Douglass Petty, PhD (chair)
• Rev. C. Jessel Strong (vice chair)
• Alexandre Carter, MD, PhD
• Karen Collins, EdD
• Beverley Foster
• Ronald Gregory, EdD
• Joyce Hamilton
• Barbara Herschbach
• Richard King
• Collins Lewis, MD
• Emily Pitts
• Arlene Moore Ross
• Sallie Simmons
• Jesse Swanigan
• Bernice Thompson
• Sidney White
A volunteer’s story
Initially, Stephanie Griffin and her mother, Fannie Bohlen, were in denial about Griffin’s father’s condition. In 2008, Griffin’s father, Ronald Bohlen, began displaying subtle warning signs of Alzheimer’s — locking himself out of his office, locking his keys in the car multiple times, running a stoplight without noticing. These occurrences were unlike Ronald Bohlen, but Griffin and her mother considered them as isolated. It was Stephanie’s then-boyfriend and now husband, Ronald Griffin, a clinical operations director at the School of Medicine, who insisted that the family have Ronald Bohlen evaluated by a neurologist.
The Alzheimer’s diagnosis was a shock. Ronald Bohlen was a healthy 67-year-old with no family history of Alzheimer’s. Stephanie Griffin and her mother had no idea of what it meant to live with Alzheimer’s, so they educated themselves and participated in support groups to prepare for the Alzheimer’s journey. One of the biggest eye openers was the format and lack of diversity in Alzheimer’s support groups.
“There are topics that we are guarded about in the African American community,” Stephanie Griffin said. “We’re not trusting with medical testing, research and things of that nature. So when you have a support group and the idea is for all families to come and talk about their personal experiences, many African Americans are not going to be forthcoming. But just because they’re not willing to share their stories, they shouldn’t be denied the information.”
Stephanie Griffin began volunteering for the Knight ADRC studies in 2013 to understand her individual risk and support research efforts for African Americans. In 2013, she collaborated with the Alzheimer’s Association of Greater St. Louis and her church to organize the only St. Louis citywide support group. By 2018, the sessions had grown into monthly informational workshops. The free workshops are designed to provide all families with the resources and information needed to navigate the Alzheimer’s journey. The topics and speakers vary monthly. Participants are welcome to anonymously ask questions, and speaking is optional. The meetings are offered in person, live via Zoom, and are recorded for later viewing. The virtual sessions have attracted up to 1,000 viewers, mostly African Americans from St. Louis and beyond. Such sessions have helped countless families cope with the challenges of Alzheimer’s disease.
For information about the support group, call 314-550-2301.
Published in the Winter 2022-23 issue