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Lag in Organ Donors Hampers Understanding of Dementia in Blacks

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Dorothy and Levi Reeves stand in their Oakland home, holding their wedding photo from 57 years ago. Dorothy Reeves agreed to become organ donors and to donate both of their brains after death to the University of California-Davis for research. (Anna Gorman/KHN)

By Anna Gorman, Kaiser Health News

The question came as a shock to Dorothy Reeves: Would she be willing to donate her husband’s brain for research?

She knew dementia would steadily take Levi Reeves’ memories of their 57-year marriage, his remaining lucidity and, eventually, his life. But to let scientists take his brain after he died? That seemed too much to ask.

“I didn’t want to deal with the idea of his death,” said Reeves, 79. “I certainly didn’t want to deal with brain donation.”

As an African-American and a former schoolteacher, Reeves is keenly aware of the history of racism in health care, including callous and sometimes deadly experimentation. Reeves said she never personally has had a bad experience with doctors or the medical system.

But she’s old enough to remember the infamous Tuskegee Institute syphilis study, during which hundreds of mostly illiterate black sharecroppers were assured they were being treated for “bad blood” even as doctors withheld effective treatment over decades.

Top researchers say such wariness, while understandable, is thwarting efforts to understand and treat Alzheimer’s disease and other forms of dementia in black patients today. African-Americans suffer from these cognitive impairments at two to three times the rate of non-Hispanic whites, yet they are less likely to take part in research.

That has created a vexing challenge for scientists, who are trying to persuade more blacks to participate in studies — both while they are alive and after they die. A critical part of their efforts is asking for brain donations.

“There is a lot of terrible history that we have to acknowledge and move past,” said Lisa L. Barnes, a neuropsychologist at the Rush Alzheimer’s Disease Center in Chicago. “A lot of minority communities still feel that research involves being a guinea pig. Nobody wants to be used. Nobody wants to be a guinea pig.”

Shirley Fitch, who lives south of Chicago, said no thank you to Rush researchers on behalf of her husband, Clarence. The former university professor died last summer at age 86, seven years after being diagnosed with dementia.

“I’m hesitant because of distrust,” said Fitch. “Once my brain is donated for one purpose, who is to say it won’t be used for another purpose? It is out of your control.”

Although Shirley Fitch is participating in non-Alzheimer’s research at Rush, she said the historical abuses of black people have been “awful and hard to get over.”

Even today, blacks tend to get worse treatment from hospitals, she said. “It all gets stirred in the pot as to feelings about bias.”

The precise explanations for the disparities among blacks and whites are unknown. Until recently, most of  the knowledge of the pathology of dementia was largely based on studies of white patients.

“We have a real knowledge gap in accurately knowing if dementia is different in minorities as compared to whites,” said John Olichney, a neurologist and clinical director of the Alzheimer’s Disease Center at the University of California-Davis.

Scientists say blacks’ disproportionate rates of dementia may be related in part to the prevalence of disorders that raise the risk of vascular disease: diabetes and hypertension, for instance. Socioeconomic factors such as higher rates of poverty and lower levels of education also seem to play a significant role, according to research led by the University of California-San Francisco.

Despite advances in imaging technology that allows researchers to peer into the brains of live patients, studying the organ after death is crucial to a deeper understanding of the causes and progression of disease and to developing drug treatments, Olichney said.

The challenge is getting enough brains from different populations to study. It’s not just a matter of assuring potential donors that Tuskegee and other ethical debacles are in the past. To gain trust, Alzheimer’s research facilities such as UC-Davis and Rush University are also trying to diversify their staffs, collaborate with community leaders and study religious and cultural beliefs on brain donation.

This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.

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Activism

Diabetes in Black California: Turning the Tide from Crisis to Control

According to the Centers for Disease Control and Prevention (CDC) Behavioral Risk Factor Surveillance System data, nearly 17.9% of Black adults in California have been diagnosed with diabetes — above the national Black adult average of 16.8%, and nearly five points higher than California’s overall adult rate of 12.6% across all races. California ranks 24th out of 39 states with available data for Black adult diabetes rates.

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Dr. Khadijah Lang is a family physician with a clinic in Los Angeles who specializes in several family medical practices, including prenatal care. Lang believes in family medicine. She says it is important to treat all members of a family. Thursday, June 5, 2026. Photo by Solomon O. Smith/California Black Media.
Dr. Khadijah Lang is a family physician with a clinic in Los Angeles who specializes in several family medical practices, including prenatal care. Lang believes in family medicine. She says it is important to treat all members of a family. Thursday, June 5, 2026. Photo by Solomon O. Smith/California Black Media.

By Charlene Muhammad, California Black Media

Crystal Lambert knew something was terribly wrong with her three-year-old granddaughter as she sped down the street trying to get her to the hospital.

“I thought she got a hold of some poison,” Lambert recalled.

Doctors found Lambert’s granddaughter had a blood sugar level over 800, diagnosing her with Diabetic Ketoacidosis(DKA), a state in which the body, starved of insulin, begins to shut down.

Lambert said she was born with a pancreas that was not fully functioning — it lacked the specialized cells required to produce insulin.

Her granddaughter survived and is five years old today.  Now, she gives herself insulin shots, asks endless questions about her condition, and runs like the spirited child she is. But the terror of that night transformed Lambert — and ultimately inspired her to launch the We Fight Back Organization, a mobile health and food access initiative serving underserved communities across California. Lambert is the executive director.

The Crisis by the Numbers

According to the Centers for Disease Control and Prevention (CDC) Behavioral Risk Factor Surveillance System data, nearly 17.9% of Black adults in California have been diagnosed with diabetes — above the national Black adult average of 16.8%, and nearly five points higher than California’s overall adult rate of 12.6% across all races. California ranks 24th out of 39 states with available data for Black adult diabetes rates.

Nationally, according to the U.S. Department of Health and Human Services, Black Americans were 24% more likely than the overall U.S. population to have diabetes in 2024. They also died from diabetes 78% more often than the general population in 2022. Black Americans are also more than twice as likely as the overall population to develop kidney failure caused by diabetes.

According to the California Health Care Foundation’s 2024 Health Disparities Almanac, Black Californians have the shortest life expectancy in the state at just 74.6 years — due in part to chronic conditions like diabetes and its devastating complications.

Leon Rock, co-founder of the African American Diabetes Association, believes statistics, though revealing, only tell part of the story.

“There are a whole bunch of Black folks that don’t tell you that they have diabetes — or don’t know,” he said.

And the disease itself, Rock is careful to note, is not what kills. “They die from the complications. That’s heart attack, that’s stroke, that’s amputations of legs, of feet. Going blind. All those complications are inherent in a system that has impacted Black folks with diabetes in California and across America.”

Crystal Lambert, creator and executive director of We Fight Back. She started the organization out of a need to learn more about diabetes on behalf of her granddaughter. Now she is looking to spread the impact of her organization to the valley. Friday, June 6, 2026. Photo by Solomon O. Smith/California Black Media.

Crystal Lambert, creator and executive director of the We Fight Back Organization, started out of a need to learn more about diabetes on behalf of her granddaughter. Now she is looking to spread her organization to the valley, on Friday, June 6, 2026 Photo by Solomon O. Smith/ California Black Media

An Information Gap Fuels the Crisis

For Rock, part of the solution is diagnosis. He says the medical and public health systems are failing Black Californians by the absence of information designed for them.

“That is the bottom line. We need good information. Information that is culturally specific,” said Rock.

Telling people to eat healthy or exercise, he added, falls short when culturally specific alternatives are not provided, and when many residents of urban communities do not feel safe exercising in some neighborhoods – or outside at night.

Dr. Khadijah Lang, a family medicine physician and president of the Golden State Medical Association, agrees that the roots of the crisis run deeper than individual behavior — and blaming patients misses the point.

“We are not genetically predisposed to diabetes,” Lang said. “But the system under which we live increases the likelihood that we will develop it.” 

What the Body Needs — What Communities Are Denied

Type 2 diabetes, which accounts for 90 to 95% of all diabetes cases, according to the CDC, develops when the body can no longer use insulin effectively to regulate blood sugar. Left unmanaged, it damages nerves, kidneys, eyes, and the cardiovascular system. The hemoglobin A1C test is a blood draw that reveals how the body has processed sugar over the previous three months — not just at the moment of the test. It is the standard tool for both diagnosis and ongoing monitoring.

That distinction matters, Lang emphasized, because patients cannot manipulate three months of blood sugar history the way they might fast for a day before a single blood draw.

“The pill is not meant to undo or control a sugar level that’s being constantly stressed,” Lang said. “It’s meant to work in conjunction with a low-carbohydrate diet and exercise.” She recommended at minimum 30 minutes of physical activity five days a week — breakable into 10-minute sessions for those who need it.

Lang stressed that education must be delivered in language people recognize and can relate to. The goal is to inform them of the choices that serve their health best, she said.

But for many Black Californians, even those informed choices remain out of reach, Lambert said.

“They need access to healthy foods and medication, too” she said.

California has made some critical policy advances. The state has expanded access to the Continuous Glucose Monitor (CGM), which has transformed diabetes care for state residents. Assembly Bill 365, introduced in 2024, proposed requiring Medi-Cal to cover the costs of CGM and other related medical equipment but it failed in the State Senate. Since then, the California Department of Health Care Services (DHCS) reports that the core Medi-Cal CGM benefit now available to eligible patients was solidified through previous budget actions and pharmacy policy updates.

These measures, while meaningful, have not closed the gap for the communities most at risk, according to advocates.

Control Through Community

Health care advocates conclude that the solution must be communal, culturally grounded, and sustained — not a fad, not a celebrity moment, not a single clinic visit. For example, observed Lang, lifestyle shaped by shared values and collective accountability can move the needle where individual prescriptions have not.

Rock is building infrastructure to match the urgency, establishing local chapters of the African American Diabetes Association across the country, with California next.

“We have to do for self, period,” he said. “Health is wealth. We have to eat to live.”

And Lambert, whose granddaughter unknowingly started all of this for her, keeps showing up.

“Diabetes advocacy is about dignity, education, prevention, and hope,” she said.

Video: Diabetes Disparity Exposed in California

This article is supported by the California Health Care Foundation 

(CHCF). Visit www.chcf.org 

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Activism

Oakland Post: Week of July 1 – 7, 2026

The printed Weekly Edition of the Oakland Post: Week of July 1 – 7, 2026

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Arts and Culture

Prescott Circus Theatre Presents Free Summer Performance Series

Now in its 41st year, the Prescott Circus Theatre is a nationally recognized performing arts education program for Oakland youth. The circus offers safe environments that challenge Oakland youth, through circus arts training, to develop the skills and confidence to thrive on stage, in school, and in life.

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Prescott Circus showcase pathways pyramid. Photo courtesy of Prescott Circus.
Prescott Circus showcase pathways pyramid. Photo courtesy of Prescott Circus.

By Post Staff

The Prescott Circus, Oakland’s longest-running youth circus, is returning this summer with its free shows. Join the Prescott Circus’s young stars as they share their joys and talents through stilt-dancing, tumbling, juggling, and more.

At the heart of this one-hour show, which demonstrates teamwork, pride, and joy, are Oakland Unified School District students ages 8 – 17 from more than 10 different schools

Now in its 41st year, the Prescott Circus Theatre is a nationally recognized performing arts education program for Oakland youth. The circus offers safe environments that challenge Oakland youth, through circus arts training, to develop the skills and confidence to thrive on stage, in school, and in life.

This is accomplished through no-cost school and community programs for more than 300 Oakland youth each year. Performing company members from Prescott, where the program began, perform and make appearances at as many as 40 Bay Area events each year.

The summer program is funded in part by Oakland Fund for Children and Youth, California Arts Council, Port of Oakland, and the West Davis & Bergard Foundation.

Performances will be held Tuesday, July 14, 11 a.m. and 1:30 p.m. (ASL interpreted) and Wednesday, July 15, 11 a.m., at the Malonga Casquelourd Center for the Arts, 1428 Alice St., Oakland. For free reservations go to

https://PrescottCircusSummerShows.eventbrite.com

For group reservations for camps, childcare centers, senior centers, go to www.prescottcircus.org

A community show will be held Saturday, July 18, 2 p.m. to 3 p.m., at DeFremery Park,1651 Adeline St., Oakland.

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