July 11, 2020 at 10:00 a.m. EDT
The protests over the deaths of black men and women at the hands of police have turned attention to other American institutions, including health care, where some members of the profession are calling for transformation of a system they say results in poorer health for black Americans because of deep-rooted racism.
“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.”
Black women are facing a childbirth mortality crisis. Doulas are trying to help.
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.
Can’t Focus on Abortion Access if My People Are Dying’
Some Gen Z and millennial women said they viewed abortion rights as important but less urgent than other social justice causes. Others said racial disparities in reproductive health must be a focus.
Emma Goldman|| The New York Times
Like many young Americans, Brea Baker experienced her first moment of political outrage after the killing of a Black man. She was 18 when Trayvon Martin was shot. When she saw his photo on the news, she thought of her younger brother, and the boundary between her politics and her sense of survival collapsed.
In college she volunteered for the N.A.A.C.P. and as a national organizer for the Women’s March. But when conversations among campus activists turned to abortion access, she didn’t feel the same sense of personal rage.
“A lot of the language I heard was about protecting Roe v. Wade,” Ms. Baker, 26, said. “It felt grounded in the ’70s feminist movement. And it felt like, I can’t focus on abortion access if my people are dying. The narrative around abortion access wasn’t made for people from the hood.”
Ms. Baker has attended protests against police brutality in Atlanta in recent weeks, but the looming Supreme Court decision on reproductive health, June Medical Services v. Russo, felt more distant. As she learned more about the case and other legal threats to abortion access, she wished that advocates would talk about the issue in a way that felt urgent to members of Generation Z and young millennials like her.
“It’s not that young people don’t care about abortion, it’s that they don’t think it applies to them,” she said. Language about “protecting Roe” feels “antiquated,” she added. “If I’m a high school student who got activated by March for Our Lives, I’m not hip to Supreme Court cases that happened before my time.”
Her question, as she kept her eyes on the court, was: “How can we reframe it so it feels like a young woman’s fight?”
On Monday the Supreme Court ruled on the case, striking down a Louisiana law that required abortion clinics to have admitting privileges at local hospitals, four years after deciding that an effectively identical Texas requirement was unconstitutional because it placed an “undue burden” on safe abortion access. The Guttmacher Institute had estimated that 15 states could potentially put similarly restrictive laws on the books if the Supreme Court upheld the Louisiana law.
The leaders of reproductive rights organizations celebrated their victory with caution. At least 16 cases that would restrict access to legal abortion remain in lower courts, and 25 abortion bans have been enacted in more than a dozen states in the last year.
fight is far from over,” said Alexis McGill Johnson, the president of
Planned Parenthood. “Our vigilance continues, knowing the makeup of the
court as well as the federal judiciary is not in our favor.
Interviews with more than a dozen young women who have taken to the streets for racial justice in recent weeks, though, reflected some ambivalence about their role in the movement for reproductive rights.
These young women recognized that while some American women can now gain easy access to abortion, millions more cannot; at least five states have only one abortion clinic.
But some, raised in a post-Roe world, do not feel the same urgency toward abortion as they do for other social justice causes; others want to ensure that the fight is broadly defined, with an emphasis on racial disparities in reproductive health.
Members of Gen Z and millennials are more progressive than older generations; they’ve also been politically active, whether organizing a global climate strike or mass marches against gun violence in schools.
While Gen Z women ranked abortion as very important to them in a 2019 survey from Ignite, a nonpartisan group focused on young women’s political education, mass shootings, climate change, education and racial inequality all edged it out. On the right, meanwhile, researchers say that opposition to abortion has become more central to young people’s political beliefs.
Melissa Deckman, a professor of political science at Washington College who studies young women’s political beliefs, said that Gen Z women predominantly believe in reproductive freedom but that some believe it is less pressing because they see it as a “given,” having grown up in a world of legalized abortion.
“Myself and other activists in my community are focused on issues that feel like immediate life or death, like the environment,” said Kaitlin Ahern, 19, who was raised in Scranton, Pa., in a community where air quality was low because of proximity to a landfill. “It’s easier to disassociate from abortion rights.”
Fatimata Cham, 19, an ambassador for the anti-gun violence advocacy group Youth Over Guns, agreed that the fight for reproductive rights felt less personal. “For many activists, we have a calling, a realm of work we want to pursue because of our own personal experiences,” Ms. Cham said. “Growing up, abortion never came to mind as an issue I needed to work on.”
Some young women said that they considered reproductive rights an important factor in determining how they vote, but they struggled to see how their activism on the issue could have an effect.
When Ms. Baker helped coordinate local walkouts against gun violence, she sensed that young people no longer needed to wait for “permission” to demand change. With abortion advocacy, she said, organizers seem focused on waiting for decisions from the highest courts.
And even as those decisions move through the courts, the possibility of a future without legal abortion can feel implausible. “I know we have a lot to lose, but it’s hard to imagine us going backward,” said Alliyah Logan, 18, a recent high school graduate from the Bronx. “Is it possible to go that far back?”
Then she added: “Of course in this administration, anything is possible.”
For many women in the 1970s and ’80s, fighting for legal abortion was an essential aspect of being a feminist activist. A 1989 march for reproductive rights drew crowds larger than most protests since the Vietnam War, with more than half a million women rallying in Washington, D.C.
Today, young women who define themselves as progressive and politically active do not always consider the issue central to their identities, said Johanna Schoen, a professor of history at Rutgers and the author of “Abortion After Roe.”
“Women in the ’70s understood very clearly that having control over reproduction is central to women’s ability to determine their own futures, to get the education they want, to have careers,” Dr. Schoen said. “As people got used to having access to abortion — and there’s a false sense that we’ve achieved a measure of equality — that radicalism women had in the early years got lost.”
Some millennial women who can easily and safely get abortions do not connect the experience to their political activism. Cynthia Gutierrez, 30, a community organizer in California, got a medication abortion in 2013. Because she did not struggle with medical access or insurance, the experience did not immediately propel her toward advocacy.
“I had no idea about the political landscape around it,” she said. “I had no idea that other people had challenges with access or finding a clinic or being able to afford an abortion.”
Around that time, Ms. Gutierrez began working at a criminal justice reform organization. “I wasn’t thinking, let me go to the next pro-choice rally,” she said. “The racial justice and criminal justice work I did felt more relevant because I had people in my life who had gone through the prison industrial complex, and I experienced discrimination.”
Other young women said they felt less drawn to reproductive rights messaging that is focused strictly on legal abortion access, and more drawn to messaging about racial and socioeconomic disparities in access to abortion, widely referred to as reproductive justice.
Deja Foxx, 20, a college student from Tucson, Ariz., became involved in reproductive justice advocacy when she confronted former Senator Jeff Flake, Republican of Arizona, at a town hall event over his push to defund Planned Parenthood.
But abortion access is not what initially drew her to the movement. She wanted to fight for coverage of contraceptives, as someone who was then homeless and uninsured, and for comprehensive sex education, since her high school’s curriculum did not mention the word consent.
“There’s a need to protect the wins of the generation before us,” Ms. Foxx said. But she believes the conversations that engage members of her generation look different. “My story is about birth control access as a young person who didn’t have access to insurance,” she said.
The generational shift is evident at national gatherings for abortion providers. Ms. Schoen has attended the National Abortion Federation’s annual conference each year from 2003 to 2019. In recent years, she said, its attendees have grown more racially diverse and the agenda has shifted, from calls to keep abortion “safe, legal and rare” to an emphasis on racial equity in abortion access.
“The political questions and demands that the younger generation raises are very different,” she said. “There’s more of a focus on health inequalities and lack of access that Black and brown women have to abortion.”
Amid the coronavirus outbreak, even the most fundamental legal access to abortion seemed in question in some states. At least nine states took steps to temporarily ban abortions, deeming them elective or not medically necessary, although all the bans were challenged in court.
Research from the Kaiser Family Foundation found that the pandemic led to various new legal and logistical hurdles. In South Dakota, abortion providers have been unable to travel to their clinics from out of state. In Arkansas, women could receive abortions only with a negative Covid-19 swab within 72 hours of the procedure, and some have struggled to get tested.
But in spite of the threats, for some young women the calls to action feel sharpest when they go beyond defending rights they were raised with.
“Right now, in a lot of social justice movements we’re seeing language about the future,” said Molly Brodsky, 25. “I hear ‘protect Roe v. Wade,’ and it feels like there needs to be another clause about the future we’re going to build. What other changes do we need? We can’t be complacent with past wins.”