“I hate to go to hospitals,” said Dr. Edward Reed. “I hate to go as a patient, as a visitor, and even just as a black man.”
He would know.
After graduating from Nashville’s Meharry Medical College, one of only three historically black medical schools in the country, Reed headed to Memphis in 1962 to enter private practice.
Because he is black, he was not allowed to join the Memphis & Shelby County Medical Society, the Tennessee Medical Association or the American Medical Association.
Such exclusion was common and infected all of medicine. Racism was so toxic among doctors that, in 2008, the American Medical Association formally apologized for its 122 years of discriminatory practices (1846-1968). That apology came on the heels of a damning report in the Journal of the American Medical Association that noted the group had “unharnessed itself from its code of ethics.”
The nation’s healers, sworn to an oath to “first do no harm,” had, since their professional society first formed in 1847, been “early and persistent,” the journal reported, in embracing and advocating racism. no apology, however, is an overnight remedy.
by almost any measure — and every time it is measured — health is worse for black people than white people.
In Tennessee, death from heart disease is highest for black men, and black women have the highest prevalence of multiple risk factors. Stroke risks are twice as high for black people as white people, and stroke deaths are highest for black men. Hypertension rates are highest for black citizens, especially elderly black women.
Black men have the worst diets of any group, followed by black women.
Black women have the highest rates of diabetes. Black men have the highest rates of congestive heart failure, even though those rates have decreased in recent years to match rates among black women (both of which are nearly twice the rates among white people).
And that’s all just from one 2006 report, on heart disease and stroke, from the Tennessee Department of Health in collaboration with Tennessee State University and the University of Tennessee Health Science Center, in Memphis.
In hundreds of other reports, black people routinely fare worse than white people.
Deaths from anemia, diabetes and prostate cancer are 2.5 times more likely for black men in Tennessee than white men in Tennessee. With asthma, black Tennessee men are four times more likely to die. Although black women in Tennessee are less likely than black women nationally to contract HIV, they are almost 12 times more likely to become infected than white Tennessee women; black men in Tennessee are eight times more likely than white men in Tennessee to get the virus.
Overall, across Tennessee, white men can expect to live to about 71.3 years old, but only 62.9 years for black men; white women, too, live longer than black women (78.7 vs. 73.0). Nationally, “racial disparities in 1998 were approximately equal to those in 1945,” concluded one medical study in 2001.
“Resources or access or safety nets or whatever,” Reed, now 90, grumbled from his Memphis home recently. “Don’t give me that. It’s just money.”
Mayor A C Wharton agreed. “‘Lack of income’ is a proxy for black or brown in this town,” he said. “That’s just how it breaks down. We have too many people — too many minorities — whose only physical checkup is at the emergency room.”
The problem, chimed D’Army Bailey, the lawyer and civil rights leader who spent his teen years working as an orderly in John Gaston Hospital, is that “medicine is not Samaritan. it has to be economic. People without proper care are left to waste away. Preventative care, supervisory care. That’s what you need.”
And these are just the common diseases — cancer, AIDS, heart disease, diabetes and stroke. there are other diseases, specifically about a half-dozen, that are widespread among the poor in Tennessee and nationwide even though the general population has largely never heard of them. Doctors themselves have rarely heard of them. Medical insurers have mostly never heard of them. And even though the U.S. House of Representatives passed a bill, H.R. 5986, the Neglected Infections of Impoverished Americans Act of 2010, in September, it passed with a voice vote, which means there was hardly anyone in the legislative chamber.
“That bill,” said Dr. Peter Hotez, an immunologist and parasitologist at George Washington University, who helped draft it, “was written in such a way that it’s mom and apple pie. who wouldn’t want to know more about these diseases? it wouldn’t require anything. it would just get the government to realize that the data we have is too scant to do anything with.”
The diseases read like a game of Latin Scrabble gone awry: trichomoniasis, cysticercosis, ascariasis, Chagas, congenital cytomegalovirus (CMV), toxoplasmosis and toxocariasis. the U.S. Centers for Disease Control and Prevention, in Atlanta, tracks none of them. only two states, Massachusetts and new Hampshire, screen newborns for toxoplasmosis, which, unchecked, causes deafness and intellectual disability. All the diseases disproportionately affect the poor: chiefly African-Americans and Latinos, in inner cities and rural areas, especially in the South, Appalachia and along the Mexican border.
“You show me poor people in Memphis, and I’ll show you these diseases,” said Hotez. He called them “living legacies of slavery.”
And they perpetuate a cycle of poverty.
Many of the diseases are asymptomatic, meaning people can be afflicted without knowing it. why would they know? the symptoms often go hand-in-hand with a life of poverty: abdominal pains, headache, nausea, fatigue, soreness, asthma. for example, Wharton noted, Memphis has about 35,000 asthmatic children.
“You just sort of live with it,” said Dr. Sten Vermund, director of Vanderbilt University’s Institute for Global Health. “You think, I’m poor and this is what it means to be poor. you don’t think about your health as something that is supposed to be good.”
Vermund and his colleagues are up against a historic aversion among minorities to doctors and public health. some would-be patients might avoid doctors because of a single word: “Tuskegee,” a shorthand description of one of the most notorious medical experiments of the 20th century, in which U.S. doctors, beginning in 1932, infected black men with syphilis and then denied them treatment, even after the advent of penicillin in 1947, so that they could witness the consequences of untreated infection. the experiment didn’t end until 1972.
Even further back is the folklore of “night doctors” (also called “Ku Klux doctors”), white medics who were rumored to grave-rob and abduct sleeping black people at night, to conduct all kinds of nightmarish experiments.
“We had mobile vehicles and nobody came because we were white,” said Vermund. “White doctors wouldn’t take care of minorities in our country, so minorities were always concerned about what insult or slight or injury they would get at the hands of doctors.”
There’s also a practical explanation, heightened in times of tough recession and depression: Sometimes the poor are just too busy trying to stay above water to bother with doctors.
Black people are more likely to enter the hospital through the emergency room, and then, because their health is worse, generally stay hospitalized two or three days longer than white people.
“What good does it do a single mother, juggling two jobs and five children, to get a mammogram and discover she has breast cancer she can’t pay to treat?” Vermund asked. “A dentist can only tell you that he found a cavity if you set up an appointment with him first.”
The small batch of doctors who have taken up these neglected diseases as their personal crusades speak with frustration and candor.
“These are not rare diseases,” said Hotez. “They’re incredibly common.”
Trichomoniasis, a sexually transmitted disease, affects 29 percent of black women in the South (compared to 38 percent of women in Nigeria). Toxocariasis, a parasitic disease spread through animal feces, affects 30 percent of rural black children in the South (compared to 40 percent of people in Brazil or Indonesia). Pregnant black teenagers with CMV are 50 times more likely to infect their unborn children than their white counterparts. In all of these diseases, “poverty is the single most important determinant,” Hotez wrote in one of his studies.
“But because they occur among poor blacks, nobody cares,” he said.
“People need help,” said Dr. Patricia Kissinger, an infectious-disease epidemiologist at Tulane University who has studied trichomoniasis extensively. “We need to listen. This is the United States. This is not the third World,” she continued, having experienced that squalor as a Peace Corps member in the African nation then known as Zaire, now Congo. “Why would we let the third World happen here?”
Sometimes researchers can become so frustrated that they take matters into their own hands.
Dr. Sheba Meymandi, director of clinical cardiac research at UCLA Medical Center, runs the country’s only clinic for Chagas disease, which is the top cause of stroke among Latinos. She found a prevalence rate in Los Angeles of about 1.2 percent, higher than occurrences of multiple sclerosis, autism or Lou Gehrig’s disease.
Routine screenings of donated blood by the Red Cross found Chagas in 1 in 250; by law, the donors were notified of their infection. almost none came to the clinic; Meymandi’s work is almost entirely outreach.
“This is low-hanging fruit,” she said. “It’s easy to make a huge impact. This challenge is treatable, curable, and yet it’s more of an uphill battle than curing cancer or finding an AIDS vaccine. because ignorance is steep.”
She sighed. “Everywhere I present a paper, it’s like, really? really?” she said. “It’s so frustrating. I know there is this bill floating around in Washington, but, you know what? Unless a congressman thinks he won’t get elected because he’s neglecting something, he’ll feel free to neglect it. It’s incredibly frustrating.”
Rep. Steve Cohen (D-Tenn.), the only white member of the U.S. House of Representatives from a majority-minority district, called the sharp health disparities “the lingering consequences of slavery and Jim Crow” and candidly acknowledged that, because of the affected population, “a sophisticated lobbying effort is just not possible. it would be like expecting battered women to build their own shelter.”
The broader public knows more about attention-deficit disorders, or erectile dysfunction, or restless leg syndrome because of what Hotez calls “an obsession with the imaginary diseases of white people. Autism and vaccines, for example. Absolutely no scientific connection, but it’s a nonproblem elevated to the point that everyone has heard about it. Every PTA has discussed it.”
Wharton bristles at that sentiment.
“Attention-deficit disorder in Germantown is important, but it doesn’t compare to a kid in Orange Mound bordering on scurvy in the 21st century,” he said.
Many of the researchers interviewed said these diseases were in need of what Hotez called “a Ryan White moment,” referencing the white suburban teenager from Indiana whose public infection of HIV (from a blood transfusion) in 1984 made him the poster child for the spread of AIDS until his death, at 18, in 1990.
Vermund, who was at the National Institutes of Health in the 1980s, recalled what happened: “(Former president Ronald) Reagan didn’t care about AIDS until his friend Rock Hudson died of it. then he just threw money at it. it was hard to spend all the money they sent us so precipitously in those days.”
Wharton sees too many parallels.
“Folks joked about AIDS joked about it! as a gay plague, or for prostitutes,” he said. “But it was too late when we wanted to do something about it. for too long, we had said that’s somebody else’s disease. It’s not my problem. We need the Magic Johnsons, the Rock Hudsons, the Greg Louganis folks.”
There is some promise. Frustrated with the fact that many studies on these diseases draw on data that hasn’t been updated since the 1970s, last year the Chicago-based Adler Institute on Social Exclusion held the first summit on neglected U.S. disease. there is also that bill passed by the U.S. House of Representatives, which now awaits Senate passage.
And here in Tennessee there is Dr. Abelardo Moncayo, an epidemiologist at the Tennessee Department of Health.
After conducting a study in 2009 of raccoons in Tennessee that found that, statewide, 29.2 percent of them were infected with toxocariasis (with some per-county rates as high as 63.6 percent), he enabled doctors in the state in 2010 to be able to report cases for the first time.
“These diseases are forgotten because they affect people who are forgotten,” Moncayo said. “We don’t even know the burden of disease, the scale of risk. We don’t know and are choosing not to know.”
He is changing that. But before he lets himself — or any colleagues or patients or advocates — get too comfortable, he has a question: “How much did you care about West Nile (virus) before it came here?”
Reed, who moved to a segregated Memphis in 1962, rumbled when asked that question. He eventually ended up integrating St. Joseph’s Hospital in 1964, becoming a board-certified member of the American College of Surgeons in 1965, and, in 1973, becoming the first black president of the local American Cancer Society.
“It’s hard to fight so much and get so little,” he said, noting that 2.5 percent of doctors and medical students were black in 1910; in 2006, that was down to 2.2 percent.
“Maybe medicine was not the right decision for me,” he said. “Quality and equality are miles apart. Medicine is a service that has turned too much into a business. We’ve improved the quality of care we give, but we haven’t improved our giving. Nothing has changed.”
Contact Richard Morgan at 529-2774.
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BY THE NUMBERS
The following factors compare death rates for black and white Tennessee residents.
– Black women are 2.7 times more likely to die of diabetes than white women.
— Black men are 4.6 times more likely to die of hypertensive heart disease than white men.
– Black women are 11.67 times more likely to die of HIV than white women.
– Black men are 3.83 times more likely to die of asthma than white men.
Source: the Color of Health and Health Care by Shelley L. White-Means, Ph.D.
For a full listing of death rate comparisons, go to commercialappeal.com/data/death-disparity