Health care reparations, explained – Vox

Health care reparations, explained – Vox

In 1972, two social workers set Debra Blackmon’s sterilization in motion.

The primary diagnosis in her medical records read: mental retardation severe. Soon, Blackmon would undergo a total abdominal hysterectomy, a procedure, sanctioned by the local government, to remove her uterus and cervix.

She was 14.

Since 1929, the state of North Carolina had been signing off on forced sterilization for those they deemed unfit to have children. Through its eugenics programs, the state sterilized more than 7,600 people, under the notion that halting reproduction by “mentally defective” people would benefit society.

While white people made up the majority of sterilizations prior to the 1960s, Black women were disproportionately targeted for the state-sanctioned surgeries in the later years of the program.

“It was heart-wrenching,” says Bob Bollinger, the attorney who represented Blackmon and a handful of others with similar stories in separate legal cases against the state.

Although 30 states have had sterilization laws on the books, North Carolina’s program — which ran until 1974 — was one of the largest and most aggressive. Its victims were also the first to receive compensation, in an unprecedented reparations effort.

In 2013, state lawmakers set aside $10 million for one-time payments to the 1,500 to 2,000 victims they estimated were still alive. The compensatory funds covered those who had been sterilized through the state eugenics board’s formal process, but left out many who had been involuntarily sterilized by local welfare departments that had bypassed the state board. Until they came forward seeking reparations, the legislature was likely unaware such individuals existed.

Blackmon was among them. She’d never receive payment under the statute.

“We lost all the cases because of how the law was written,” says Bollinger. North Carolina’s reparations program was successful as far as it went, he said. “It just didn’t go far enough.”

The effort was one of the most well-known examples of reparations paid to Black Americans as an attempt to right an egregious wrongdoing in health care — part of a growing movement calling for direct monetary payments, free health care, and increased accountability for how the medical system treats Black patients. While the larger reparations movement calls for restitution for centuries of unpaid forced labor and post-emancipation exclusion from wealth-building activities, health care reparations would specifically address past and present harms caused to Black people by the medical establishment.

It’s estimated that around 8.8 million Black Americans died prematurely between 1900 and 2015 because of the racial health gap. One recent study found that household wealth was directly correlated to health outcomes. Advocates for a multi-pronged reparations package focused on monetary and political restitution for this harm say that such reparations would boost the health of Black communities.

But academics and public health experts have long disagreed on whether financial reparations alone are an approach that can adequately rectify centuries of ill treatment that has resulted in dismal health outcomes for Black Americans. Will they solve the health inequities ingrained in a system designed to perpetuate harm?

Blackmon’s story illustrates just how complex finding victims and appropriately compensating them can be.

How history propelled racial disparities in health outcomes

Substantial evidence exists that enslavement negatively affected all aspects of Black life and laid the foundation for the health disparities Black Americans experience today. During enslavement, race was biologicalized, bolstering the belief that Black people were inferior. The enslaved were subjected to substandard housing conditions, poor sanitation, and food scarcity because of it. Combined with a lack of access to clean water and clothing, it placed them at a higher risk for respiratory diseases their immune systems had never before encountered and barred them from doing many of the things that make someone healthy, such as accessing adequate medical care. (Though they had their ways.) Much of what we know about modern medicine began on the plantation and set the tone for the poor health currently experienced by Black Americans.

Enslavers went to great lengths to prevent physicians from treating enslaved Africans’ ailments, frequently accusing them of “malingering.” It’s not as if the doctors were helpful, however. Typically, their purpose was to get an enslaved person back to work. And if the required medical “care” was more intensive, it was often incredibly harmful to the enslaved.

“There were scientists and eugenicists who … thought about Black people as an entirely different species,” says Avik Chatterjee, an assistant professor at the Boston University School of Medicine.

The way that doctors and scientists thought and wrote about race was one of the many tools used to justify enslavement’s continuation. “It’s not just that people in medicine and people in science were a part of a system, but they helped create the system that allowed for enslavement and oppression,” says Chatterjee.

Current misbeliefs that Black patients are more difficult, have thicker skin that is less prone to pain, or make up symptoms were cultivated during enslavement. Today, much of modern medicine does not protect Black Americans, who are at least three times as likely as white people to die from pregnancy-related causes, face disproportionate rates of chronic diseases, and often bear the most severe outcomes of infectious disease outbreaks. Black patients are underprescribed pain medication, excluded from experimental drug trials that could help manage an illness and provide fuller data for Black health outcomes, denied lifesaving medical procedures, or encouraged to undergo more harmful ones. Being Black is still a medical categorization via race adjustments, which allow medical providers to make clinical decisions based on a patient’s race. (A well-known instance of this is eGFR measurements, a medical formula that helps determine the health of the kidneys, for which there is a higher bar for Black patients — a practice that frequently prevents them from receiving treatment, such as transplants, that can enhance or save their lives.) Currently, the life expectancy for Black Americans is 71.8 years versus 77.6 years for white Americans.

Poor outcomes among Black Americans are also compounded by inequities that seep into their environment and community, such as a lack of access to affordable housing and healthy foods, exposure to violence or toxic waste, and the unavailability of open-air green spaces. These factors, often referred to as social determinants of health, affect people’s well-being. And they are often tainted by a history of racist social, economic, and housing policies.

These wrongs were never adequately addressed, leaving the playing field inequitable. That truth is the crux of the health care reparations movement.

Behind the call for reparations

Health care reparations became a substantial academic topic in the early 2000s. As Vernellia R. Randall, a law professor at the University of Dayton, wrote, a reparations package capable of eradicating the “Black health deficit” would entail a medley of transformative systemic changes focused on fixing the underlying causes of these disparities. They included, but weren’t limited to, universal health care, repairing environmental racism, providing a living wage, and encouraging cultural competence among physicians.

While other systemic factors would ideally be included in a health care reparations package, the general push for reparations is a separate endeavor, addressing economic, political, and housing discrimination resulting from enslavement.

The effort to redress the harms to sterilization victims in North Carolina is a prime example of health reparations. In the case of that state’s reparations program, however, some of those who were directly affected were able to be located, but the program still missed people whose sterilization wasn’t approved by the state board — people like Blackmon. The same issue could befall any program searching for the descendants of specific harms in medicine, says Chatterjee. Many would exclude Black Americans whose ancestors were used as test subjects for medical experiments without anesthesia and maimed by doctors like James Marion Sims or who died from smallpox in the early 20th century because of the barriers to quality care post-emancipation. It would also leave out Black patients currently dealing with the ramifications of the pseudoscience established during enslavement — such as doctors believing that they have “naturally” lower lung capacity.

Growing evidence like this is bolstering the movement in favor of broader health care reparations. “Medical Reparations build on the longstanding call for slavery reparations by focusing on the specific debts owed to Black people in healthcare settings,” reads a report from the Repair Project, an initiative designed to address anti-Black racism in science and medicine. “It is a response to the health effects of racism writ large as legacies of slavery that persist today and that call for repair.”

But the notion has not come without criticism.

“The US health care system needs a lot of work. It’s broken. It needs fixing,” said Darrell Gaskin, director of the Hopkins Center for Health Disparities Solutions. “Why try to put on a Band-Aid if all your pipes are leaking?”

Gaskin supports compensation for patients who are victims of violence, like those who endured North Carolina’s forced sterilization program and the Tuskegee experiment. “I put that in the same category as if you went to a doctor, they made an egregious error, and you sued them for malpractice,” he says.

But reparations, he argues, are a patch on a system that is inherently broken. On his list of potential solutions for health inequities, “a check is at the very end.”

It’s the health care structure that must be rebuilt, Gaskin says. Paychecks are “not necessarily fixing the system so that it stops injuring people.”

Why some believe payouts aren’t enough

Gaskin isn’t alone in his reasoning. While many experts believe payouts should be included in a reparations package, since they would provide people with the quality of medical access that wealth brings, there is a strong agreement that cash won’t provoke the systemic changes necessary to improve Black Americans’ well-being.

“We see that [wealth] doesn’t necessarily alleviate health inequities because, particularly in maternal outcomes, we see that Black women with graduate-level degrees and astronomical amounts of wealth still have poorer health outcomes than white women who haven’t graduated high school,” says Brittney Francis, a social epidemiologist at Harvard’s FXB Center for Health and Human Rights.

“It’s also a matter of revamping our educational system,” she adds. “It’s no good paying [people] money if you still are going to go see a doctor who’s educated in a system that uses a textbook saying that Black folks feel less pain.”

A solid reparations package, according to Francis, would also be multi-pronged and implement several key institutional changes. An educational component would better educate current and aspiring clinicians on their biases while eradicating anti-Blackness from the material they’re taught. It would also include plans to improve the health literacy of Black Americans. And since “it’s estimated that” only 10 to 20 percent of what determines health occurs in a clinical setting, such a package should include policies that bolster the infrastructure affecting other determinants of health.

Even though cash payments would allow a family that relies on public transit to buy a car, for example, they wouldn’t shorten the drive to the grocery store if that family lived in a community where disinvestment has left residents with no access to fresh foods. It wouldn’t stop local governments from making zoning decisions that allow Black communities to become saturated with environmental pollutants. Money won’t encourage cities to build more walkable communities or improve the air quality in neighborhoods bisected by highways — and it won’t stop that same political devastation from happening again. If history serves as a predictor, should Black Americans use the funds to move into better-resourced, wealthier areas, the white residents would likely flee — taking the resources that prevent underinvestment with them.

“I don’t think that folks would actually be able to reap the benefits that we think they’ll be able to see,” Francis says of reparations payments on their own. “A lot of it will be maneuvering through the same systems, just with more money.”

What health reparations look like in action and what’s next

In the 1970s, as North Carolina was ending its forced sterilization program, the federal government reached a $10 million settlement with the surviving victims of the Tuskegee experiment and the families of those who died. As a part of that nonconsensual medical experimentation, nearly 400 Black men were intentionally denied syphilis treatment beginning in the 1930s.

The settlement, which came a year after the experiment ended, included monetary compensation and lifelong health care for participants and their immediate families.

Despite the government’s reparations effort, the experiment remains among the most infamous in American history, scarring Black patients, who have been left skeptical of the same medical system that abused their grandparents and continues to dismiss them. The trauma passed down generations partially explains why Black communities remain hesitant to engage in clinical research, where they are underrepresented, and why they’re wary of medical care in general.

“You have to heal,” says Monica Ponder, an assistant professor of health communication and culture at Howard University. “You have to restore trust in the population when it comes to people feeling safe in their bodies and in communal spaces.” Although she applauds the efforts to right historic atrocities, she says she continues to see Black Americans hurt by the health care system today.

“Why is it always about Henrietta Lacks or Tuskegee when harm happens almost every day?” Ponder wonders. “Why does it have to get to that point?”

What constitutes harm needs to be redefined, she said. “Violence happens often in the health care system.”

How reparations in health should look, in Ponder’s eye, depends on how they will be defined. She describes the movement as being at a critical point, bursting with new avenues and opportunities to explore. In her mind, reparations should have been paid already as a means to bridge the gap between the bondage of slavery and equitable health outcomes.

Some of those potential solutions include adding layers of accountability for doctors and hospitals by ensuring complaints are reviewed and penalties are enacted in real time, or addressing the racial disparities in incarceration rates for cannabis use, she said. They could also look like free access to physical and mental health care.

But that free care, says Ponder, must be safe.

This series on reparations is made possible by a grant from the Robert Wood Johnson Foundation to Canopy Collective, an independent initiative under fiscal sponsorship of Multiplier. All Vox reporting is editorially independent. Views expressed are not necessarily those of Canopy Collective or Robert Wood Johnson Foundation.

Canopy Collective is dedicated to ending and healing from systemic racialized violence. Multiplier is a nonprofit that accelerates impact for initiatives that protect and foster a healthy, sustainable, resilient, and equitable world. Robert Wood Johnson Foundation is committed to improving health and health equity in the United States.