In a Rust Belt city split by inequality, people are battling for healthcare justice. The fight for change is a fight for their lives. – Online Athens

SYRACUSE Sequoia Kemp stood at the crossroads of health inequality, her mind on a painful past.

Beside her:the second-oldest public housing project in the U.S. Just above: one of New York states most prestigious teaching hospitals.

She took in the glimmering glass and sterile white facades of SUNY Upstate Medical University that tower over the blood-red bricks of the tenement buildings, home to mostly poor and Black people here in this Rust Belt city of not quite 150,000.

The two worlds a shining beacon of American medicines bright future and stark reminder of the nations racially unjust present are literally separated by an elevated highway that carved through the citys heart decades ago.

Today, the Interstate 81 viaduct is a mass of rusting steel, chipping green paint and crumbling concrete. It is a relic of the 1950s-era urban planning that displaced and economically ravaged generations of Black and brown Americans in favor of white flight to the suburbs.

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And it is an impossible-to-ignore symbol, many here say, of the divisions and inequalities that put the health and lives of people of color in dire jeopardy.

On this late spring afternoon, traffic buzzed as a Black girl skipped nearby along the project's sidewalk with a cloth doll,playing amid the acrid smell of exhaust and swirling dust fromconstruction work. A rush of memories had gripped Kemp, a 26-year-old Black woman, of a surgery she had as a teenager to remove ovarian cysts.

She remembered the month of searing abdominal pain as doctors delayed the procedure. She remembered her mother's pleas to expedite the surgery to ease her daughter's agony.

Sequoia Kemp, a certified doula, stands next to her sister and client while holding her new niece in the hospital.Contributed photo from Sequoia Kemp.

But mostly, Kemp struggled with the thought that racism marred the surgery. The unanswered questions have plagued her for years:

Would doctors have listened to a white woman and acted sooner?

Is a Black mother powerless to protect her child from medical harm?

Will I ever be able to have children of my own?

Theres just so many stories like mine and so much trauma, and so much healing our community has to do, Kemp said. And Im going to do whatever I can to be part of that.

Those stories of Black women emotionally and physically scarred during childbirth inspired her to become a doula to prevent it from happening to others. She has seen countless times how the health care system treats people of color differently. She carries with her the strikingtruth that Black women are three times as likely to die in childbirth than white women.

On this day, she wears a T-shirt that reads:Birth Work is My Resistance.

Kemp is not alonein her fight on the front lines of health justice, in this city beset by festering wounds of racial segregation and stunninginequality. There are agents of change on both sides of the divide, here in the heart of the city and high on the hill inside the halls of medical healing.

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But the stakes are crystal clear. They are written on the faces of the expectant mothers Kemp helps, etched in the well-being of her own body, evident in the everyday discrimination that targets the people she loves.

It's a fight for the lives of women. For friends and her family. For herself.

The first thing most of my clients say, Kemp said, is I dont want to die.

In Syracuse and across the country, a new generation of activists and medical professionals many of them forged by their own health-related trauma are leading the charge to end the systemic inequalities that ensure Black, Latino and Native Americanlives are less healthythan white lives.

Here, they are the people pushing plans to tear down Syracuses highway system and seeking reparation. The roads' racially biased placement killed the American dreamof their ancestors, who fled the Jim Crow-era South only to find a Northern city being segregated by its own brand of discrimination.

Justice In My Town - Health Care Crisis 1

Deka Dancil, president of Urban Jobs Task Force, leads a I-81 march in downtown Syracuse.

They are also the medical students who are exposing untold and ongoing harm caused by attempts to justify American slavery with theories that Africans race was inferior to whites.

And they are the scholars unraveling the legacy of slave-owning doctors claiming Africans comparatively weak bodies benefited from grueling slave labor.

They are behind a growing movement to reject the racial inferiority theories, which remain in the bedrock of modern medicine despite being disproven and have fueled the mistreatment of generations of Black Americans.

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July 16, 2021 in Syracuse. Pioneer Homes, the second-oldest housing project in the country is on the edge of Upstate Medical and Syracuse University.Robert Bell/Rochester Democrat and Chronicle

This movement is part of a much broader struggle to improve the quality of life for those excluded from the American social contract. When it comes to keeping people of color healthy and healing them when they are not endless factors play a role, from the environment to access to care centers, from insurance plans to steady incomes, from nutritious meals to medical mistrust built on centuries of trauma.

The health-justice movement aims to end racist housing policies that place more Black children near toxic fumes and exhaust, contributing to them having asthma-related death rates eight times higher than whites.

It requires eliminating food deserts and medical distrust linked to Blacks being twice as likely to die of diabetes than whites. And removing unjust economic policies and practices linked to Black people being 30% more likely to die from heart disease than whites.

The endeavor also targets the medical deserts and low-wage jobs linked to Blacks, Latinos and Native Americans put at twice the risk of dying from COVID-19 than whites.

Children play and pose for the camera at playground close to I-81 in Pioneer Homes on July 16.Robert Bell/Rochester Democrat and Chronicle

Racism is not just the discrimination against one group based on the color of their skin, Centers for Disease Control and Prevention Director Dr. Rochelle Walensky said in April, declaring racism a national public health threat.

Rather, it is the structural barriers that impact racial and ethnic groups differently to influence where a person lives, where they work, where their children play, and where they worship and gather in community, she added.

Undergirding it all is the tectonic push for truth in medicine, as revelations surrounding complex clinical algorithms used to make race corrections to treatments suggested millions of Americans were mistreated for decades.

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USA TODAY Network journalists assembled a complex assessment of these intertwined issuesby interviewing Americans from across the country, revealing the lives devastated by health inequality, as well as their fight for better treatment. They also analyzed health data and federal records detailing the misuse of race in medicine to shed light on the massive systemic reforms needed to end disparity in health and health care.

The outcome of the heated debate among health care leaders over race-based corrections in particular could save lives and prove crucial to building trust with people of color.

More and more medical groups are realizing that race corrections are both on the wrong side of history and on the wrong side of evidence-based medicine, said Dr. David Jones, a Harvard University professor. I hope people of color would look at this and say doctors are really trying to look at this and figure out what is going on.

In Syracuse, which hassome of the poorest neighborhoods in the country, tales of unmet health needs, unsafe housing conditions and unequal access to health care unfold daily.

Deka Dancil grew up Black in extreme poverty, eating cheese slices and drinking hot sauce for days at a time when her familys food stamps ran out. She spent her teen years sleeping on couches at homes of friends and relatives and worked her way through high school as a janitor at Upstate Medical University.

Deka Dancil, of Syracuse, grew up in extreme poverty. She eventually graduated from Syracuse University and became president of the Urban Jobs Task Force.Robert Bell/Rochester Democrat and Chronicle

I would have never believed, or had the audacity to think, that if there was something I needed that I would be important enough for the top specialists at Upstate to care for me, said Dancil, 28, and now president of the Urban Jobs Task Force.

As a Medicaid patient, she added, her care was always funneled to the federally qualified health center, which lacked the expertise and resources available at Upstate.

Lily Sanders, a 67-year-old Black mother of three, grandmother of 11, and great-grandmother of four,has taken pride in working low-wage jobs at Syracuse-area nursing homes. But she's remained unable to afford health insurance premiums and deductibles most her life.

Instead, she has prayed to stay healthy and out of the emergency room, while living among the boarded-up Victorian homes and gang violence that have blighted the city for decades.

Its very scary. Ive been blessed with good health, and every day youre hoping that you dont need anything, Sanders said.

She described herself as one of the millions of working-poor Americans, earning above the Medicaid threshold but unable to afford health insurance costs. She has often turned to the Poverello Health Clinic, a free health center in Syracuse, for minor care while forgoing most dental treatment.

It affects people of color because they came from a place of zero from slavery, she said. You try to get something, but the system doesnt allow you to get anything…You just cant get a toeholdand you just never get up.

The preventable suffering is clear for Rachel Johnson, a 25-year-old community advocate, gently urging a Black man with diabetes to visit doctors and eat healthy. His diet consists mostly of offerings at the corner store advertising beer and cigarettes, rather than fruits and vegetables available at grocery stores in less poverty-stricken neighborhoods.

There is long-standing intergenerational trauma that is baked into people of color, said Johnson, director of health services at Syracuse Community Connections. Some of the bigger issues of mistrust in health care are connected to some of those historical factors.

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This is national. Its not just one local entity, or just one city … it is across the board, she added.

The I-81 viaduct separates Upstate Medical University, one of the best medical colleges in New York state, from the Pioneer Homes housing projects in Syracuse, New York.Robert Bell/Rochester Democrat and Chronicle

In Syracuse, the health inequity crisis has also manifested in the stunted lives of at least 675 children poisoned by lead paint in 2017 alone, many of them living in the citys aging housing stock still filled with lead-based paints that were banned in 1978.

Then there is simply the fact kids in Syracuse with asthma are more than twice as likely to end up in the emergency room than peers in surrounding suburbs, including cases linked to traffic-related air pollution from living in the highway systems shadow.

But life on this side of I-81 has helped prompt a push for change on the other side, where three Black women studying at Upstate Medical to become doctors have turned their personal clashes with discrimination into a collective attempt to achieve health justice in their town.

Eight-year-old IsabelleThenor-Louis saw racism unfold one evening through the window of her own home.

Her father had pulled his car into their driveway in the wealthy, and mostly white, Long Island neighborhood where they lived.A police car stopped on the street with its engine idling as the Black man, a doctor, slowly walked towards that house that officers wrongly assumed he couldnt afford.

Under the glare of racial profiling, Isabelle's dad entered the front door. He embraced his family, and a few tense moments crept past before the police sped away.

Isabelle Thenor-Louis is a student at Upstate Medical University working to become a hybrid physician-journalist.Robert Bell/Rochester Democrat and Chronicle

It left the first of many scars in a rising American familys struggle against racism.

Today, a 26-year-old Thenor-Louis recalled such episodes including a patient mistaking her father for a janitor as sparks that ignited her path to medical school.

Its one of those things that snowballed as youre growing up and you start to realize, OK, Im not really seen as someone of value, she said. As a Black woman, I saw it was really important to be part of the solution.

Her realization expanded recently after she complained of health and skin issues common among Black women during medical visits, only to be dismissed by white doctors. When she visits doctors now, she wears a sweatshirt emblazoned with the insignia of her alma mater, Brown University, to combat racial bias, implicit or explicit.

Its unfortunate that I feel like I have to put on all these physical qualifiers to show I have value and should be treated equally, Thenor-Louis said. Its almost like preparing to go to battle.

Today, she is working towards becoming a hybrid physician-journalist in the mold of CNNs Sanjay Gupta, hoping to improve the health of people of color while sharing their stories to the world to effect change.

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Yet her trials at getting this far underscored the challenges behind the shortage of doctors of color, which span a range of economic and social barriers to medical school.

While the number of medical school spots has increased by 27% since 1981 overall, just 13.7% of the medical student population is from Black, Latino, American Indian or Alaska Native communities. Thats despite these underrepresented groups composing 35% of the U.S. population. Meanwhile, just 3% of doctors nationally are Black women.

And while research shows people of color are healthier when treated by doctors of color, advocates have long stumbled in closing the diversity gap. An effort stalled by the burden of more than $200,000 in medical school debt on average and racially segregated educational opportunity.

The pandemics uneven toll in communities of color, however, may turn the tide. The suffering contributed to an 18% surge in medical school applications for the fall, according to the Association of American Medical Colleges.

Further, many of the aspiring doctors are people of color inspired to remedy the health inequalities laid bare by the coronavirus, as scholarship programs, educational outreach and free tuition initiatives seek to remove barriers to medical school.

The importance of closing the divide between the ranks of doctors of color and an increasingly diverse nation of patients struck close to home for Samantha Williams, another Black medical student at Upstate.

Born and raised in Syracuse, Williams moved to the suburbs as a teen with her mother, a widow, and two siblings. Her only ticket to studying medicine: a scholarship promoting medical school diversity.

She's faced many microaggressions as a Black woman in a predominantly white environment, she said.

Recently a campus safety alert had Upstate Medical students smartphones buzzing, warning of a stabbing in the public housing projects near campus. Williams overheard a classmate sarcastically declare, Classic Syracuse.

Its hard sometimes seeing people of privilege making statements like that, she said.

During another class, Williams found herself the only student raising her hand when a professor asked if theyve known a victim of gun violence, drawing snide looks from classmates.

The incidents were among many reasons Williams worked with Thenor-Louis and their classmate, Angelina Ellis, the daughter of Jamaican immigrants, to organize the Health Justice at Upstate conference in January.

The virtual event drew hundreds of attendees and focused on connecting medical students, doctors and Syracuse community leaders to pursue local projects to reduce health inequity.

I have the greatest hopes that people understand the communities theyre treating, Williams said.

In Syracuse, young students and community outreach workers are leading the charge for systemic change. And in some ways, the history of doctors misusing race in American medicine began unraveling in a Harvard lecture hall.

There, medical students began questioning methods used to adjust treatments based on a patients race. Several of the students turned to David Jones, a Harvard professor specializing in race, technology and the culture of medicine, to find answers.

The resulting medical paper, Hidden in Plain Sight,published in August in New England Journal of Medicine, would raise questions about flaws in race-based medicine that some experts say were harming people of color.

From left, Isabelle Thenor-Louis, Samantha Williams and Angelina Ellis, all medical students at Upstate Medical University, are promoting medical school diversity.Robert Bell/Rochester Democrat and Chronicle

Theres such a pervasive assumption in U.S. society and U.S. medicine that Black and non-Black people are different; I dont think anyone stopped to look twice, Jones said.

Its often the people who are new to a profession who are going to be alert to something that members of the status quo cant see, he added, praising medical students for opening the racial justice floodgates in health care.

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The groups probe of medical race corrections detailed how complex health-related math equations and risk calculators contributed to unequal care for whites and people of color.

Due to the algorithms, many Black men and women may have received delayed or lesser care for kidney, heart and lung diseases, the research suggests, and women of color potentially received less-aggressive cancer screening.

Some Black and Hispanic women may have been improperly advised against pursuing vaginal birth after a cesarean delivery, exposing them to a serious operation while robbing them of a personal choice more widely offered to white women.

And race-adjusted treatments may have perpetuated health disparities, rather than resolving them, by directing more medical resources to whites than people of color, according to the research.

In other words, using faulty and biased health data potentially engrained the negative effects of racism and discrimination into the medical system.

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In a Rust Belt city split by inequality, people are battling for healthcare justice. The fight for change is a fight for their lives. - Online Athens

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