Tagged Disparities

Lag In Brain Donation Hampers Understanding Of Dementia In Blacks

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

OAKLAND, Calif. — 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.”

Dorothy Reeves, 79, helps feed her husband, Levi, who has Lewy body dementia. Reeves, a former schoolteacher, initially declined brain donation but later agreed — for both her and her husband. (Anna Gorman/KHN)

The Knowledge Gap

The precise explanations for the disparities among blacks and whites are unknown. Until recently, most of our understanding 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.

For example, some African-Americans don’t want their brain separated from their body when they are buried, said Stephanie Monroe, director of African Americans Against Alzheimer’s, which is engaged in various efforts to educate people about the disease and its effects.

“Many people believe in ashes to ashes and dust to dust,” she said.

A Changing Mindset

Alzheimer’s researchers at UC-Davis recognized about 15 years ago that they needed a more representative slice of the population, especially in diverse Northern California. At the time, centers around the country were mostly studying well-educated, white people who volunteered, Olichney said.

So they started reaching out to both the African-American and Latino communities. “That was a real change in our mindset,” he said.

Today, nearly 400 patients, including about 70 African-Americans, are enrolled in its longitudinal study of the progression of dementia, and they come in yearly for memory evaluations and other tests. Of the study participants, about 270 have agreed to donate their brains after death, more than 40 of them African-American.

At the Rush Alzheimer’s Disease Center, doctors started following a cohort of African-Americans in 2004 and, some seven years later, began to seek brain donation for the study. Close to 500 African-Americans have signed up to donate after death, and 72 brains already have been donated, Barnes said.

Though she is pleased with the high rate of commitment, she noted that more works needs to be done. In another study, about 3,100 white participants agreed to brain donation, with 1,400 already donated. Recruiting African-Americans “takes a lot of effort and a lot of work,” she said. “Every year, we bring it up again and revisit it with those who are reluctant. But if someone is really firm, we don’t push the subject.”

Research on the donated brains has led to intriguing findings. One Rush study, published in 2015, found that blacks with Alzheimer’s disease were more likely than whites to have other disorders, such as Lewy body dementia. Twice as many blacks with Alzheimer’s as whites with the disease also had Lewy body dementia, in which protein deposits build up in nerve cells, according to the study. Blacks with dementia also had more severe disease of the arteries, the study found.

The number of blacks studied was relatively small — 41 compared with 81 whites — yet its findings were potentially important. That’s because the presence of other diseases in the brain means blacks may not respond as white patients do to drugs aimed specifically at Alzheimer’s.

Even for experienced research institutions, getting people to participate in donation remains complicated — in part, because families don’t necessarily agree about it among themselves.

Andrea Gourdine holds a photo of her mother, Gladys Brown, who died in 2012 after being diagnosed with Alzheimer’s. Brown donated her brain to the University of California-Davis, for research. (Anna Gorman/KHN)

Andrea Gourdine remembers clearly when her mother, Gladys Brown, started behaving oddly. Once, the elder woman forgot a stove burner was on and a dish exploded. Then she stopped bathing regularly. “And she was normally fastidious,” Gourdine said. “Something was really, really wrong.”

Brown enrolled in the research at UC-Davis, was diagnosed with Alzheimer’s in 2005 and soon after agreed to donate her brain. It won’t help me, Brown told researchers, but it could help others. She died in 2012, at 87.

Gourdine also signed up for the UC-Davis study and has consented to donate her brain. She does not have Alzheimer’s, but researchers are seeking brains of those without dementia for comparison.

She is aware of the history of medical abuse of African-Americans but says she doesn’t see any point in focusing on the past.

Gourdine’s sister, India Collins, disagrees with her sister and objected to her mother’s donation.

“I have problems with scientific research and I get very upset with scientific data and outcomes in general,” said Collins. She questions how helpful it is to African-Americans. “Why would you want to participate in their research if it does not benefit you?”

Expanding The Brain Trust

Gwen Gates, a recruiter and research coordinator at the UC-Davis center, goes to churches, health fairs and other events to build trust and develop deeper relationships among the university and minority communities. Patients and families want to know what scientists do with the brains. They worry about how relatives will react. They fear donation will interfere with funeral arrangements or their plans for an open casket.

She assures them it won’t. She explains that brain donations will help future generations, perhaps even in their own family.

Occasionally, families readily agree. Some adamantly refuse. For others, the decision is a process.

Dorothy Reeves declined brain donation initially but agreed to sign up herself and Levi, 81, for observational studies. Then she saw what the disease could do. Her husband, who has Lewy body dementia, went under a table one day to get a magazine and couldn’t find his way out. He forgot her name and those of his children.

She thought about all the other people like Levi.

“It affects people in ways you can’t imagine — regardless of your race,” she said. “It’s almost unbearable.”

Soon the researchers had their answer. Yes, she would agree to donation — for both of them.

KHN’s coverage in California is funded in part by Blue Shield of California Foundation.

Categories: Aging, Public Health

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Colon Cancer Rates Rising Among Younger White Adults — And Falling Among Blacks

When Crawford Clay discovered blood on his shorts at the end a routine run in the spring of 2014, he did not know the stains were a symptom of a condition that also afflicted his family.

His doctor said it was likely hemorrhoids, but as a precaution, the physician scheduled a colonoscopy.

The exam revealed Clay had rectal cancer. He was 43, seven years younger than the recommended age for colon screenings and completely in the dark about the symptoms associated with the condition. Clay didn’t know that his grandfather had the disease or that he would be diagnosed in the same week as his dad.

“I knew nothing,” he said.

Clay is not the only person caught unawares by this diagnosis.

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Authors of a research letter published Tuesday in JAMA found that rates of colorectal cancer among adults under age 55 and the number of deaths among that age group are rising. They also discovered some surprising demographic trends. The number of whites being diagnosed with colorectal cancer and their mortality rates are rising, even as blacks are seeing a decline in both categories. Despite those declines, however, blacks still have higher rates of death from the disease, the study found.

Researchers studied rates of colorectal cancer and deaths for individuals aged 20 to 54 from 1970 through 2014, using data from the National Center for Health Statistics. NCHS uses death certificates reported by every state and the District of Columbia to gather this information.

Crawford Clay, from Macon, Ga., was diagnosed with colorectal cancer at age 43. He has lobbied on Capitol Hill to raise awareness for patient access to treatment. (Courtesy of Crawford Clay/Colon Cancer Alliance)

Rebecca Siegel, an epidemiologist at the American Cancer Society and lead author of the letter, said these findings suggest the increasing tally of people dying from colorectal cancer is not just because extra screening is verifying more cases. While the steady uptick in deaths is small — 1 percent annually from 2004 to 2014 — the rising mortality rates are occurring in what is supposed to be a healthy population.

“It tells us that not only is this a true increase in disease incidence,” she said, “… but this increase is enough to outweigh the survival in all age groups because of better treatment.”

When exploring the racial disparity, the researchers found that among whites, the death rate increased from 3.6 to 4.1 cases per 100,000 people between 2004 and 2014. In contrast, the number of blacks dying from the condition fell from 8.1 cases in 1970 to 6.1 cases per 100,000 people in 2014.

Siegel said the data do not match up with risk factors of colorectal cancer, such as obesity. Whites and blacks have comparable rates of overweight individuals, but the diverging patterns in deaths due to colorectal cancer suggests that obesity may not play as large of a factor as previously thought.

“Why we have an increase of deaths in whites is an unanswered question at this point,” she said.

Colorectal cancer is the second leading cause of cancer-related death among men and the third leading among women, according to the American Cancer Society. An estimated 135,000 people are expected to develop colon or rectal cancer this year and 50,000 people die of it annually.

If caught early, the likelihood of surviving the condition is high. More than 9 out of 10 people with stage 1 colorectal cancer — which means the cancer has not spread to distant sites or the lymph nodes — are as likely to live five years after their diagnosis as a person who doesn’t have cancer, according to the American Cancer Society. However, only 11 percent of those diagnosed with stage 4 cancer that has spread to other parts of the body have the same odds.

Unfortunately, these late-stage cancers are appearing in younger patients, said Andrea Cercek, a medical oncologist who specializes in the treatment of patients with gastrointestinal cancers at Memorial Sloan Kettering Cancer Center in New York City. Her patients with colorectal cancer are on average 50 years old. Guidelines recommend individuals begin regular colonoscopies at that age, but Cercek said many of her patients with the condition are far younger.

“We really don’t know yet why this is happening,” she said.

The JAMA researchers also broke down the changes by age group. People in their 20s saw a 0.1 percent annual increase from 1988 to 2014 after a 2.5 percent annual decline from 1970 to 1988. From 1994 to 2014, the rate of colorectal cancer among 30- to 39-year-olds rose by 1 percent every year. That increase occurred after 25 years of decline, according to the letter.

For those in their 40s, the death rate rose by 1.4 percent every year between 2004 and 2014 after two periods of decline. The oldest cohort, 50- to 54-year-olds, saw their rate rise by 0.8 percent every year from 2005 to 2014, after decreasing from 1970 to 1996. Siegel speculates this may be due to people delaying their first colonoscopies.

The rising number of cancer cases among young people pose new challenges for providers in supporting their patients after they survive the condition, Cercek said. The aggressive treatments used to beat the disease have side effects that were not relevant for older patients, such as infertility issues.

“It’s not so much that we’re taking a step back,” Cercek said. “It’s just that it’s a new problem that we have to tackle.”

Today, Clay said, his cancer is in remission. Now 56, he works as a certified patient and family support navigator for the Colon Cancer Alliance, an advocacy group that promotes research and patient services for those affected by the disease.

Clay said he finds that many of the families he helps lack the knowledge needed to navigate a diagnosis. Doctors can help tackle the problem by avoiding jargon and communicating more clearly. Although his recovery and work educated him on colorectal cancer, he remembers what it felt like to be caught off guard.

“He knows what he said,” Clay said in reference to a doctor. “And now I know. But, God help me, I didn’t know back then.”

Categories: Public Health

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Health Gap Widens Between Appalachia And Rest Of The U.S.

Brian and Sandy Willhite (Courtesy of the Willhite family)

Sandy Willhite doesn’t mind driving 45 minutes to the nearest shopping center. But living in Hillsboro, W.Va., became problematic when she had to travel nearly six hours for proper foot treatment.

“There just aren’t any quality surgeons or specialists in our area,” Willhite said, when explaining why she went to a doctor in Laurel, Md.

Getting health care is a common problem for the residents of Hillsboro, a tiny hamlet in the middle of Appalachia with a population of just under 250 residents.

And the Appalachian region is in dire need of health care. This section of the U.S., long acknowledged to be among the most economically disadvantaged in the country, is showing a growing gap in health outcomes with the rest of the United States.

A study released Monday in the journal Health Affairs found disparities widening sharply between Appalachia and the rest of the country, driven by higher rates of infant mortality, smoking, obesity and early deaths from motor vehicle accidents and drug overdoses.

“Although life expectancy increased everywhere in the United States between 1990 and 2013, less rapid declines in mortality and slower gains in life expectancy among people in Appalachia have led to a widening health gap,” the study said.

The study focused on the 428 counties within the 13 states that comprise Appalachia. Gopal Singh, an author of the study and a senior health equity adviser at the Health Resources and Services Administration, found that counties with high rates of poverty have the highest infant mortality rate and lowest life expectancy. These areas are seen mostly in central and southern Appalachia.

Courtesy of Health Affairs

The researchers found Appalachia lagged behind the rest of the country on health measures in the early 1990s — but only slightly. Infant mortality rates were not statistically different. And life expectancy was about 75 years — just 0.6 years shorter than that outside of the region.

But when the researchers analyzed data from 2009 to 2013, they found the infant mortality rate for Appalachia to be 16 percent higher than the rest of the country and the difference in life expectancy was 2.4 years.

When researchers examined specific demographic groups, some of the disparities were much greater. For instance, they noted a 13-year gap in life expectancy between black men in high-poverty areas of Appalachia (age 70.4) and white women in low-poverty areas elsewhere in the country (83).

According to the study, the association between poverty and life expectancy was stronger in Appalachia than the rest of the country.

“You do see a more rapid improvement in the rest of the country compared to Appalachia, but there are specific reasons why Appalachia I guess continues to fall behind,” said Singh, the lead author.

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The study points to specific health problems, including lack of access to doctors and other providers, high rates of preterm births and low-weight births, and high rates of smoking-related diseases, such as lung cancer, chronic obstructive pulmonary disease and heart disease.

“Smoking-related diseases accounted for more than half of the life-expectancy gap between Appalachia and the rest of the country,” the study said.

Dr. Joanna Bailey treats some of Appalachia’s patients every day as a family medicine physician in Wyoming County, W.Va. She grew up there and said the lifestyle plays a large role in health outcomes. “I treat a lot of diabetes; I see a lot of high blood pressure; I see a lot of heart disease. I see a lot of obesity, because it is a place where it has been normalized quite a bit.”

“I think that the culture is such that getting those conditions under control is difficult for many reasons,” Bailey said.

The economic issues compound the situation, she said.

“There’s the problem of poverty,” she added. “A lot of people are on disability and they rely on food stamps to get their food for the month.” Many of Bailey’s patients pay someone to drive them to the grocery store. She said it’s difficult to coach them to buy healthful groceries when the food is good only for a few days.

“By the end of the month, they are back to eating cereal and Hamburger Helper,” Bailey said.

She thinks the widening health gap in recent years has accelerated with an increasing number of young people leaving the area for job opportunities.

“We’re left with an older, sicker population who can’t work or don’t work, and those people are notoriously sicker,” Bailey said.

Both Bailey and Singh agree that addressing the health gap requires socioeconomic change. The communities need better higher-education opportunities and infrastructure improvements, such as improved roadways so patients can more easily get to larger towns and cities to access health care.

Until then, Willhite and her family will continue to drive hours for care, such as the foot doctor in Laurel, whom she had consulted when she lived in Maryland.

“There are just absolutely so many (health) issues here in this region, you can’t begin to put your finger on one,” Willhite said. “It’s like a big vicious circle.”

Categories: Public Health, States

EMS Delays In Rural Areas Leave First-Aid Gap For Bystanders To Fill

Better hope that you aren’t in a rural area if you are seriously hurt and need an ambulance. The wait could be dangerous.

Response times for emergency medical services are more than twice as long in rural areas than urban locations, according to a recent research letter in JAMA Surgery.

Median response times were 13 minutes out in the country compared with six in both city and suburban locations, researchers found after reviewing records of nearly 1.8 million EMS runs across the U.S. in 2015.

That’s not the worst of it. In rural areas, one in 10 EMS units did not reach an emergency scene for nearly half an hour after the 911 call came in, the study reported.

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“There are just some things that just can’t wait,” said Dr. Howard Mell, the study’s lead author. “When someone’s heart is not beating … when someone’s not breathing, any delay in care, even a minute — it’s proven to be detrimental.”

The researchers point out in their letter that they looked into the time differences to help inform the debate about improving first aid campaigns. They said their data suggest that bystanders can provide valuable assistance to the sick and injured persons before EMS arrives.

The JAMA letter put it this way: “Recognizing that ‘you are the help until help arrives’ may be lifesaving.”

Mell, whose 25 years in emergency medicine also includes stints as a firefighter and a paramedic, said he cannot recall an instance when a trained bystander at an emergency scene would not have helped before EMS’ arrival. He is the attending emergency physician for CEP-America at Presence Mercy Medical Center in Aurora, Ill., and a spokesperson for the American College of Emergency Physicians.

Caring for the sick and injured is EMS’ workers’ job, but according to Mell’s study, family, friends and bystanders are the first link in the chain of survival. Beneficiaries are not always strangers.

People who get first aid and CPR training will likely use it to save friends and family members one day, Mell said. “It’s extremely rare that you get a patient who is truly alone.”

The researchers’ message is at the center of a public education campaign called “Until Help Arrives,” which is affiliated with the Federal Emergency Management Agency and other government agencies. The campaign provides web-based resources to teach basic life-saving skills.

An accompanying editorial endorsed the researchers’ viewpoint and said their study “reinforces the importance of bystanders as immediate responders.” It pointed to the need for more emphasis on teaching people how to control bleeding.

Thirty-two states have adopted legislation requiring high school students be trained in CPR and the use of  automatic electric defibrillators before graduation. Students should also learn how to control bleeding, the editorial said.

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