By Genoa Barrow | OBSERVER Senior Staff Writer

It is projected that by 2030, 10.8 million residents – one-fourth of California’s population – will be older adults. Californians are living longer and the state’s aging population has forced policymakers to focus more on the growing ranks of older adults as they plan for the state’s future.

Black experts in the field want to ensure that African American seniors aren’t left out of the conversation. Representation in research and recruitment in academia matters, but these remain huge unsolved challenges.

And older Black adults must be included in clinical trials, which could lead to more representative data that can help with diagnoses and treatment. Advocates working to improve the quality of life for seniors are committed to ensuring that African American seniors’ voices are heard.

“I was working in the field as a volunteer and I wanted to know more about it. I wanted to know the academics of aging and gerontology,” says former assemblymember Cheryl Brown, a gerontologist, who previously served on the advisory committee for Gov. Gavin Newsom’s Master Plan for Aging and currently chairs the California Commission on Aging’s executive board.

Brown wants to see more young people going into the field. Her colleague, Dr. Donna Benton, mentors the next generation and admits it’s a challenge. There aren’t many visible Black gerontologists. 

“The reason it’s so hard [to find them] is because people don’t generally list themselves as gerontologists,” says Dr. Benton, a geropsychologist.

Dr. Benton served with Brown on the aging commission and helped to shape the state’s master plan for its older population as an advisory board member. She is a research associate professor of gerontology at University of Southern California’s Leonard Davis School of Gerontology.

“People understand what a social worker is; they understand what a psychologist is, or doctor or nurse,” Dr. Benton says. “It’s harder for people to understand what a gerontologist is.”

She says most people go into gerontology because of an experience caring for a family member or because they desire to open assisted living or nursing homes in their communities to counter the lack of such institutions that cater to Blacks.

Dr. Benton’s focus is on Alzheimer’s and dementia, caregiving and long-term care.

“I want to help people who are struggling with depression, anxiety and just general mental health problems. I really felt that older adults who might be feeling sad and blue needed to understand how you could provide counseling for them,” she says.

She entered the field some 50 years ago and in some ways has seen little change. Communities of color are still fighting to get earlier and more accurate diagnosis when it comes to dementia and mental health.

“We still are not referred as often for specialty diagnosis for Alzheimer’s, although we have the highest risk factor for Alzheimer’s,” Dr. Benton says. “We don’t get to specialists at the same rate. When you look at the research, the Black community is still not getting referred for testing. We don’t have as easy access to culturally appropriate services that are tailored for our community. “

That’s beginning to change, she says. “Many of the counties and the state are pushing more for better diagnoses for African Americans and more access to specialists, and they’re helping train professionals to know that they need to be doing this.”

Present And Accounted For

According to the National Institute on Minority Health and Health Disparities, a lack of diverse researchers in clinical trials creates barriers to recruiting and retaining minority participants, leading to less representative data and potentially ineffective treatments for certain groups.

Dr. Benton’s colleague at USC, Dr. Lauren Brown, says the lack of representation of Black people in research skews the available data – data that is used to determine resources and who gets them.

“The school of gerontology [at USC] has never tenured a Black professor,” she says. “I am one of two Black people – three Black professors in the school of gerontology, and two of them just started. It’s a very isolating space to work and it’s hard to find your home.

“I think the most places where I found home is in the Alzheimer’s disease space, because there is Black community around this work in a way that there is not in so many other spaces. People are very mobilized around what Alzheimer’s disease is doing to the Black community.”

The work is personal for Dr. Brown, whose father has dementia.

“This is a disease that is definitely stealing my life and my mother’s life as well,” she says.

Dr. Brown’s research uses publicly available data with the goal of understanding the unique difficulties Blacks face in maintaining physical and psychological well-being as they age.

Black experts in the field of aging face a number of challenges in their effort to find equitable solutions for communities of color. The field, they say, still marginalizes Black health and Black experiences.

The “new frontier” of genomics, Dr. Brown says, is already leaving folks behind. Genomics is the study of an organism’s entire DNA set and its interactions. It helps researchers understand disease formation, leading to new ways to diagnose, treat and prevent disease.

“You can see how new technology is always developed in white communities and with white communities, and genomic data is really important because it’s all reference-based.” Dr. Brown says. “So everything is based on a reference genome and that reference genome right now is entirely [of] European ancestry. 

“When we go to extrapolate what we know about genomics into other communities, it’s coming from a core that does not include Black and brown people to begin with and then we start to slap it onto the next community and wonder why it doesn’t work.”

That bias is compounded by the lack of diversity among researchers. Less than 4% of all biomedical researchers are Black and brown, she says.

Stephanie J. Monroe, vice president and senior advisor of health equity and access at the national advocacy organization UsAgainstAlzheimer’s and director of African Americans Against Alzheimer’s, has a personal connection to the topic as well. Monroe’s father also has Alzheimer’s.

“The data piece is really important and how we’re not being included in research,” Monroe says. “Generally, it’s a huge issue when 94%-95% of the clinical trials in the United States have fewer than between 3% and 5% of Blacks and Latinos combined participating in research.” She points to new medications that will be given to people earlier in the progression of Alzheimer’s disease, while they still have mild cognitive impairment.

“Everyone’s really excited about this, except we don’t know how they’re going to work in Black people and, in fact, data that we’re learning suggests that these drugs are targeting amyloid, which for Black people does not exist at the same level at the same time that they’re trying to give these treatments for others.”

Amyloid is a protein that forms insoluble, fibrous deposits in organs and tissues and is linked to several diseases, including Alzheimer’s and Type 2 diabetes.

“It’s a challenge having these conversations,” Monroe says.

Highly regarded Black researchers are often excluded from discussions, she says. The lack of funding for Black-specific medical research is also a hindrance.

“I sarcastically ask people, ‘How many white people would be willing to take a medication where 97% of the people tested were Black?’ It gets quiet, real fast,” she says.

Change has to come soon, Monroe adds.

“I don’t know if it’s going to be a label that lets people know exactly who this was tested on so you know if it’s relevant for you. Or [if] we just have a much better system in place so that people can report if they have bad outcomes or good outcomes.”

Centering The Conversation

In the Midwest, the Healthier Black Elders Center addresses health disparities in Detroit. The center, a collaboration between Wayne State University, Michigan State University and the University of Michigan, falls under the umbrella of the Michigan Center for Urban African American Aging Research. The center trains health care professionals on issues relevant to caring for older African Americans and trains scholars to research the health of older African Americans. It also maintains a database of older adults willing to engage in research.

The center supports a series of virtual town halls, hosted throughout the fall by USC’s Gateway Exposome Coordinating Center, that gives participants space to share experiences and insights on aging and dementia.

“Hearing a wide range of perspectives is crucial to setting an agenda for better scientific studies and policies related to brain health,” reads their registration info. 

Locally, UC Davis experts have worked to understand how lifestyle factors may increase the risk of Alzheimer’s disease and related dementias in the Black community through a research project called STAR (Study of Healthy Aging in African Americans). Among them is Dr. Kristen M. George. Her public health knowledge is bolstered by personal experience, having watched three grandparents experience various forms of dementia.

Seeing dementia up close informs her work and her knowledge and understanding of it on a different level.

“I appreciate a lot of the gray areas in dementia diagnosis and research because I’ve seen it develop so differently within my own grandparents,” Dr. George says. 

Like Cheryl Brown, Dr. Brown and others, Dr. George advocates for more diversity.

“There’s a lot of room for improvement, both in recruiting researchers who look like me as well as retaining them,” she says. “Research is not exactly glamorous and not as glamorous as some other medical professions. It’s a long, grueling education.”

Diversity in research itself is also crucial, Dr. George says.

“Most of what we know about dementia, we’ve learned from pretty homogenous, highly educated and mostly white samples,” she says. “We need to retest in more diverse samples because we know that Black and Latino older adults are much more likely to have cardiovascular disease; we know that they’re more likely to have dementia, so what we need to understand is, are these two high-risk groups that we need to really focus on intervening on cardiovascular disease so that we can prevent dementia?”

Lessons From Henrietta Lacks

Underrepresentation in research can foster community mistrust – especially given historical unethical practices like the Tuskegee Syphilis Study – which discourages participation. In the infamous Tuskegee study, Black men from the 1930s-1970s thought they were being treated for ailments including syphilis, but instead of receiving a cure, they were studied by researchers.

The story of Henrietta Lacks is often cited as a reason for African American distrust of the medical profession. Lacks, a 31-year-old Baltimore mother, died of cervical cancer in 1951. Before her death, Lacks was being treated at The Johns Hopkins Hospital when her tissue from a biopsy was sent to a renowned researcher’s lab. Lacks’ cells were taken without her knowledge and have been used in medical and scientific advancements for decades.

Modern mistrust is fueled by continued incidents. New York Times reporters recently found that manufacturers of two Alzheimer’s drugs failed to inform clinical trial participants that the drugs put them at risk of brain bleeds.

Despite their matriarch’s experience and their fight for compensation, Lacks’ family encourages African Americans to participate in medical studies.

“You don’t want to be left behind,” her grandson David Lacks said in 2022. He and his sister Jeri Lacks travel the country sharing their grandmother’s important contributions to science.

“David and his family have been proud to speak the truth to power as they serve as catalysts for modern bioethics policies and informed consent laws that are affording patients an unprecedented seat at the table by advancing science, building trust and protecting research participants,” says Rhonda Smith, who leads the California Black Health Network, a statewide organization that advances health equity for African Americans and Black immigrants through outreach, education and advocacy.

Henrietta Lacks would have been 105 in 2025. Many don’t know that a Black woman’s cells helped put an end to polio or that her cells played a part in developing the COVID-19 vaccine. In learning of their grandmother’s contributions, the family educated themselves on the science of genome sequencing and cell mapping. They urge Blacks to participate in beneficial research.

“If you don’t participate in it, you will really not know if the medicine will work for you,” David Lacks says.

Treatments have been studied that work well for some groups, but not for African Americans. It’s possible that these differences in results could be caught earlier if more Black people participated in clinical trials.

Roughly 20% of cancer clinical trials are unsuccessful due to insufficient patient enrollment, with particularly low representation from racial and ethnic minorities, older individuals, rural residents, and those with lower incomes. Black lawmakers including the late Rep. Elijah Cummings and Kweisi Mfume championed for the Henrietta Lacks Enhancing Cancer Research Act. Signed into law in 2021, it requires a federal report on government-funded cancer research trials, including participation rates from underrepresented populations.

“[The] underrepresentation that we encounter today is much more about current affairs and implicit bias, access to health care, practice of medicine, and less about historical issues,” Allison Kalloo, of Clinical Ambassador and iParticipate, said online. 

“Understanding where mistrust comes from – both in the past and now – will allow everyone involved in clinical research to begin to build genuine relationships going forward,” Kalloo said.

EDITOR’S NOTE: This article is part of Genoa Barrow’s series, “Senior Moments: Aging While Black.” The series is being supported by the USC Annenberg Center for Health Journalism and is part of “Healing California,” a yearlong reporting Ethnic Media Collaborative venture with print, online and broadcast outlets across California. The OBSERVER is among the collaborative’s inaugural participants.