Racism in care leads to health disparities, doctors and other experts say as they push for change
(Erin K. Robinson for The Washington Post)
“Racism is a public health emergency of global concern,” a recent editorial in the Lancet said. “It is the root cause of continued disparities in death and disease between Black and white people in the USA.”
A New England Journal of Medicine editorial puts it this way: "Slavery has produced a legacy of racism, injustice, and brutality that runs from 1619 to the present, and that legacy infects medicine as it does all social institutions."
The novel coronavirus has provided the most recent reminder of the disparities, with black Americans falling ill and dying from covid-19 at higher rates than whites. Even so, the NEJM editorial noted, "when physicians describing its manifestations have presented images of dermatologic effects, black skin has not been included. The 'covid toes' have all been pink and white."
Black Americans die younger than white Americans and they have higher rates of death from a string of diseases including heart diseases, stroke, cancer, asthma and diabetes.
By one measure, they are worse off than in the time of slavery. The black infant mortality rate (babies who die before their first birthday) is more than two times higher than for whites — 11.4 deaths per 1,000 live births for blacks compared with 4.9 for whites. Historians estimate that in 1850 it was 1.6 times higher for blacks — 340 per 1,000 vs. 217 for whites.
Medical professionals describe the effects of racism across specialties and illnesses. Tina Douroudian, an optometrist in Sterling, Va., has observed differences in the severity of her patients with diabetes, as well as their management plans.
“Black folks have higher rates of diabetes and often worse outcomes. It’s universally understood that nutrition counseling is the key factor for proper control, and this goes beyond telling patients to lose weight and cut carbs,” Douroudian says.
“I ask all of my diabetic patients if they have ever seen a registered dietitian,” she says. “The answer is an overwhelming ‘yes’ from my white patients, and an overwhelming ‘no’ from my black patients. Is there any wonder why they struggle more with their blood sugar, or why some studies cite a fourfold greater risk of visual loss from diabetes complications in black people?”
Douroudian’s patients who have never met with a dietitian in most cases have also never even heard of a dietitian, she says, and she is unsure why they don’t have this information.
Her remedy is teaching her patients how to advocate for themselves:
“I tell my diabetic patients to demand a referral from their [primary care physician] or endocrinologist. If for some reason that doctor declines, I tell them to ask to see where they documented in their medical record that the patient is struggling to control their blood sugar and the doctor is declining to provide the referral. Hint: You’ll get your referral real fast.”
Jameta Barlow, a community health psychologist at George Washington University, says that the infant mortality rate is a reflection of how black women and their pain are ignored. Brushing aside pain can mean ignoring important warning signs.
“Centering black women and their full humanity in their medical encounters should be a clinical imperative,” she says. “Instead, their humanity is often erased and replaced with stereotypes and institutionalized practices masked as medical procedure.”
Black women are more than three times as likely as white women to die of childbirth-related causes, according to the Centers for Disease Control and Prevention, (40.8 per 100,000 births vs. 12.7). Experts blame the high rate on untreated chronic conditions and lack of good health care. The CDC says that early and regular prenatal care can help prevent complications and death.
Barlow says that the high mortality rate, and many other poor health outcomes, are a result of a “failure to understand the institutionalization of racism in medicine with respect to how the medical field views patients, their needs, wants and pain thresholds. The foundation of medicine is severely cracked and it will never adequately serve black people, especially black women, until we begin to decolonize approaches and ways of doing medicine.”
Barlow’s research centers on black women’s health, and her own great-grandmother died while giving birth to her grandmother in 1924. “In the past, black women were being blamed for the maternal mortality rate, without considering the impact of living conditions due to poverty and slavery then,” she says. “The same can be said of black women today.”
Natalie DiCenzo, an OB/GYN who is set to begin her practice in New Jersey this fall, says she hopes to find ways to close the infant mortality gap. Awareness of racism is necessary for change, she says.
“I realize that fighting for health equity is often in opposition to what is valued in medicine,” she says. “As a white physician treating black patients within a racist health-care system, where only 5 percent of physicians identify as black, I recognize that I have benefited from white privilege, and I now benefit from the power inherent to the white coat. It is my responsibility to do the continuous work of dismantling both, and to check myself daily.
“That work begins with being an outspoken advocate for black patients and reproductive justice,” she says. “This means listening to black patients and centering their lived experiences — holding my patients’ expertise over their own bodies in equal or higher power to my expertise as a physician — and letting that guide my decisions and actions. This means recognizing and highlighting the strength and resilience of black birthing parents.”
DiCenzo blames the racist history of the United States for the disparities in health care. “I’m not surprised that the states with the strictest abortion laws also have the worst pregnancy-related mortality. For black LGBTQIA+ patients, all of these disparities are amplified by additional discrimination. Black, American Indian and Alaska Native women are at least two to four times more likely to die of pregnancy-related causes than white women, regardless of level of education and income,” she says.
As for covid-19, although black people are dying at a rate of 92.3 per 100,000, patients admitted to the hospital were most likely to be white, and they die at a rate of 45.2 per 100,000.
The CDC says that racial discrimination puts blacks at risk for a number of reasons, including historic practices such as redlining that segregate them in densely populated areas, where they often must travel to get food or visit a doctor.
“For many people in racial and ethnic minority groups, living conditions may contribute to underlying health conditions and make it difficult to follow steps to prevent getting sick with COVID-19 or to seek treatment if they do get sick,” the CDC says.
The CDC is urging health-care providers to follow a standard protocol with all patients, and to “[i]dentify and address implicit bias that could hinder patient-provider interactions and communication.”
In her 16 years in medicine, internist Jen Tang has provided care for mid- to upper-class Princeton residents as well as residents of inner city Trenton, N.J. She has seen privatization of medicine adversely affect people of color who may be insured by government-run programs that medical organizations refuse to accept. Some doctors complain that the fees they are paid are too low.
And that can make referrals to specialists difficult.
“Often my hands are tied,” says Tang, who now works part time at a federally qualified health center in California. “I try to give my patients the same level of care that I gave my patients in Princeton, but a lot of my patients have the free Los Angeles County insurance, so to get your patient to see a specialist is difficult. You have to work harder as a clinician, and it takes extremely long.”
Tang has also encountered what medical experts say is another effect of long-term racism: skepticism about the health-care system.
“Some patients don’t trust doctors because they haven’t had access to quality health care,” she says. “They are also extremely vulnerable.”
American history is rife with examples of how medicine has used people of color badly. In Puerto Rico, women were sterilized in the name of population control. From the 1930s to the 1970s, one-third of Puerto Rican mothers of childbearing age were sterilized.
As a result of the Family Planning Services and Population Research Act of 1970, close to 25 percent of Native American women were also sterilized. California, Virginia and North Carolina performed the most sterilizations.
The Tuskegee experiments from 1932 to 1972, which were government-sanctioned, also ruined the lives of many black families. Men recruited for the syphilis study were not given informed consent, and they were not given adequate treatment, despite the study leading to the discovery that penicillin was effective.
Though modern discrimination isn’t as apparent, it is still insidious, Barlow says, citing myths that lead to inadequate treatment, such as one that black people don’t feel pain.
“We must decolonize science,” Barlow says, by which she means examining practices that developed out of bias but are accepted because they have always been done that way. “For example, race is a social construct and not clinically useful in knowing a patient, understanding a patient’s disease, or creating a treatment plan,” she says, but it still informs patient treatment.
She calls upon fellow researchers to question research, data collection, methodologies and interpretations.
Like Douroudian, she recommends self-advocacy for patients. This can mean asking as many questions as needed to get clarification, and if feasible, getting a second opinion. Bring a friend along to the doctor, and record conversations with your doctor for later reflection.
“I tell every woman this when doctors recommend a drug or procedure that you have reservations about: ‘Is this drug or procedure medically necessary?’ If they answer yes, then have them put it in your medical chart,” Barlow says. “If they say it is not necessary to do that, then be sure to get another doctor’s opinion on the recommendation. Black women have always had to look out for themselves, even in the most vulnerable medical situations such as giving birth.”
Medicine’s relationship with black people has advanced beyond keeping slaves healthy enough to perform their tasks. Barlow says, however, that more work needs to be done to regain trust, and uproot the bias that runs over 400 years deep.
“This medical industrial complex will only improve,” she says, “when it is dismantled and reimagined.”
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