Davis had planned to give birth at a small community hospital about 20 minutes from her home in North Charleston, South Carolina. But that changed when her medical team started repeatedly calling her cellphone and pressuring her to come to the hospital and deliver the baby.

Davis said she’d told her doctor on more than one occasion that she was opposed to inducing labor early. Eventually, she reached her wits’ end.

“It was ridiculous,” said Davis, 33. “I don’t feel heard most of the time. I feel like it’s their way or no way, you know? Like you don’t have a choice.”

Davis had given birth twice before and knew from experience that Black women, like herself, and their infants face higher health risks during pregnancy and childbirth. In 2021, Davis lost a baby in the womb after a dangerous pregnancy complication in her first trimester.

“I was very fearful that the same thing would happen,” Davis said when she found out in late 2022 that she was pregnant again.

Her fears weren’t unfounded. Across South Carolina, Black infant and maternal deaths are troubling. About an hour and a half northwest of Charleston in Orangeburg County, the infant death rate was the highest in the state in 2021. Higher, in fact, than it was 50 years earlier in 1971, according to data KFF Health News obtained via a Freedom of Information Act request from the state health department. All but one of the 17 infants who died in 2021 in Orangeburg was Black.

Statistics like this scared Davis. But it was a horror story out of Georgia that really caught her attention: In July, a Black infant was decapitated during delivery by an obstetrician who allegedly used excessive force. Davis was eight months pregnant when the news broke.

“Something’s terribly wrong,” she recalled thinking.

‘Moving in the Wrong Direction’

Being Black has always been dangerous for pregnant women and infants in the South. The origin story of modern reproductive medicine can be traced to experiments conducted on Black enslaved women in Alabama during the 1840s by physician J. Marion Sims, the so-called Father of Gynecology, who subjected his patients to painful pelvic surgeries without anesthesia and drugged them with opium.

Sims, a native South Carolinian who is memorialized on the Statehouse grounds in Columbia, is credited with inventing an early version of the vaginal speculum, which he designed after probing an enslaved woman named Betsey with the bent handle of a spoon.

Fast-forward nearly 200 years, following a legacy of systemic discrimination that has prevented some Black families from getting health care: Poor outcomes for Black women and babies across the United States are alarmingly high compared with white patients.

These problems aren’t unique to the South. In places such as Kansas, Arizona, and Wisconsin, for example, Black infants die at more than double the rate of white babies. In Flint, Michigan, where more than half of residents are Black, the infant mortality rate for all babies in 2021 exceeded the rate in any Southern state.

But in Deep South states like South Carolina, Louisiana, and Mississippi, infant mortality rates in rural counties, especially for Black babies, often resemble those in much poorer parts of the world.

Things are poised to get worse. More than one year after the U.S. Supreme Court issued its decision in Dobbs v. Jackson Women’s Health Organization, allowing state legislatures to outlaw abortion, most states in the South have passed either full or partial bans. Both research and preliminary data suggest this will further jeopardize Black women and babies.

In 2021, 42% of all reported abortions in the United States were obtained by Black women, accounting for a larger share than any other race, according to KFF data. And more than half of all Black Americans live in the South, where many of the country’s strictest abortion policies were enacted this year and last.

Already, birth rates in states that banned or restricted access to abortion have increased since the Dobbs ruling. State-level abortion bans will undoubtedly prove fatal for some people, particularly Black women and children, who are more likely to die before, during, and after childbirth than white women and children.

“There is so much anger,” said Kelli Parker, director of communications and marketing for the nonprofit Women’s Rights and Empowerment Network. “This type of legislation uniquely impacts women of color and other historically marginalized groups.”

In Texas, for example, infant mortality data from the Department of State Health Services shows the number of babies who died during their first year of life significantly increased after lawmakers passed a six-week abortion ban in 2021, according to data obtained by CNN through a public records request. In Texas, Black babies die before their 1st birthday at a rate more than twice that of white infants. That’s because the health of the mother often translates to the health of the infant, and Black women face much higher pregnancy risks, such as high blood pressure, stroke, and hemorrhage.

In South Carolina, where the state Supreme Court upheld a ban that outlaws abortion if fetal cardiac activity can be detected, non-Hispanic Black infants are also more than twice as likely to die during their first year than non-Hispanic white infants. And the state’s Black infant mortality rate increased by nearly 40% from 2017 to 2021.

Meanwhile, non-Hispanic Black women in South Carolina experienced a 67% higher pregnancy-related mortality ratio compared with their white counterparts in 2018 and 2019, according to the latest data from the state’s Maternal Morbidity and Mortality Review Committee.

“We have a lot of work to do,” said Sarah Knox, senior director of policy and advocacy at the nonprofit Children’s Trust of South Carolina. “Unfortunately, our latest data shows we are moving in the wrong direction.”

Most states haven’t released infant and maternal death data that reflects the impact of the Dobbs decision. But maternal health experts aren’t optimistic.

A KFF survey conducted this year of 569 OB-GYNs found that most doctors reported the Dobbs decision has worsened pregnancy-related mortality and exacerbated racial and ethnic inequities in maternal health.

But Dobbs isn’t the only factor. Across the South, public health experts point to a confluence of things: the closure of rural hospitals, the scarcity of doctors and midwives, the pervasiveness of obesity and chronic disease, and many states’ refusal to expand Medicaid under the Affordable Care Act.

In many cases, though, the intersection of poverty and structural racism in medicine is to blame for the deaths of Black women and their infants.

A KFF survey released this week found Black patients regularly said their health care provider assumed something about them without asking; suggested they were personally at fault for a health problem; ignored a direct request or question; or refused to prescribe them pain medication they thought they needed. More than half of all Black respondents also said they prepare to visit their health care provider by expecting insults or by being very careful about their appearance — or both.

“People are tired of being bullied by their providers,” said Tiffany Townsend, a midwife and the owner of De la Flor Midwifery in Columbia, South Carolina.

In the KFF survey, Black women reported the highest rates of unfair treatment, with 1 in 5 saying a health care provider treated them differently because of their racial or ethnic background. And about twice as many Black adults who were pregnant or gave birth in the past decade said they were refused pain medicine they thought they needed compared with white adults.

The nation’s Black maternal mortality rate is almost three times as high as the rate for white women. Townsend, one of the few Black midwives practicing in South Carolina, said that’s because doctors often ignore their patients’ complaints until it’s too late.

“They don’t listen,” she said.

‘Using Their Voice’

In March 2012, Kim Smith was about 22 weeks pregnant when she felt an “unbelievable pain” in the upper-right side of her abdomen. She was immediately admitted to a hospital in Lexington, South Carolina, where she was diagnosed with HELLP syndrome, a severe case of a pregnancy condition called preeclampsia, which is marked by high blood pressure. She’d been tested for preeclampsia a few weeks earlier and the results were negative.

While the preeclampsia rate is much higher among Black women than white women, the diagnosis still came as a shock to Smith, who liked to run, taught aerobics classes in college, and thought of herself as a healthy person. She hadn’t considered the possibility of a high-risk pregnancy.

“I was placed in a wheelchair and rushed to get an ultrasound,” she remembered after arriving at the emergency room. The first ultrasound showed a faint heartbeat, but within a few minutes, it had stopped. Smith was prepped for labor and delivery, but it was too late. The baby she had named Lauren Kelly didn’t survive.

More than half of all 516 fetal deaths reported that year in South Carolina were linked to Black mothers.

The loss of her daughter devastated Smith. She has since given birth to three boys and channeled the pain of her first pregnancy into the development of a patient navigation app called “Lauren,” funded by the South Carolina Research Authority, which she hopes will be used to spare other women from a similar loss.

The app is designed to allow pregnant and postpartum women to track their stress levels and vital signs, including their blood pressure, and to automatically relay those readings to their physicians. While not a diagnostic tool, Smith intends for the app to empower patients with real-time information so they can identify potential problems early and use it to advocate for themselves.

“You have to use your voice. You have to speak up,” said Smith, who wants the Lauren app to be made available free to pregnant women enrolled in Medicaid. “I’m still finding that people are not using their voice when they go into the doctor’s.”

New Research

Across the South, researchers are trying to identify solutions to improve health outcomes for mothers and babies. “Nothing seems to be moving the needle,” said Joseph Biggio, a maternal-fetal specialist at Ochsner Health in New Orleans.

The National Institutes of Health recently awarded Ochsner Health and its partners a $16.5 million grant to establish the Southern Center for Maternal Health Equity to address Louisiana’s high maternal mortality rate. Part of that research will involve finding ways to deliver care in rural parts of the state where hospitals have closed, high-risk specialists don’t exist, and pregnant women are disproportionately Black.

Biggio said the new research center will also compare birth outcomes in Louisiana to those in neighboring Mississippi, where infant and maternal mortality rates are the highest in the country, according to the Centers for Disease Control and Prevention.

A key difference between these two Deep South states: Lawmakers in Louisiana have expanded access to the Medicaid program under the Affordable Care Act, while lawmakers in Mississippi haven’t.

Women in most states who qualify for Medicaid during pregnancy are also covered for 12 months after they give birth. But every year, many childless women in Southern states are not eligible for the low-income health insurance program until they become pregnant. Medicaid expansion, as it was designed under the Affordable Care Act, would fill this gap by loosening eligibility restrictions, but most states in the South haven’t adopted the expansion.

Some health care policy experts believe that covering women before they become pregnant and between pregnancies would reduce the burden of obesity, diabetes, and hypertension, and the risks those conditions pose to women and infants.

Tracking long-term improvement is crucial because success won’t be achieved overnight, said John Simpkins, president of the North Carolina-based MDC, a nonprofit focused on improving racial equity and economic mobility in the South.

“If we’re talking about population health improvements, then really the intervention should be beginning with kids who are being born right now, and following them through adulthood, and then probably their kids,” Simpkins said. Medicaid expansion, for example, could raise families out of poverty, but those benefits might not be realized for another generation, he said.

“I’ve found that the things that work the most are sustained investment over time,” he said.

But this work isn’t relegated to the South. In the majority-Black city of Flint, Michigan, for example, researchers are poised to launch in 2024 a multiyear project called Rx Kids to determine if direct, unrestricted cash payments to pregnant women and new moms improve birth outcomes.

“This is standard in other countries. This is common, basic sense,” said Mona Hanna-Attisha, a pediatrician and the associate dean of public health at the Michigan State University College of Human Medicine, who is leading the Flint research.

Poverty tends to peak just before a woman gives birth, she said, and the project in Flint will attempt to offset that hardship by offering every woman in the city who becomes pregnant, regardless of race, a payment of $1,500 at the halfway point of her pregnancy and then an additional $500 a month during the first year of her infant’s life, for a total of $7,500.

“This is designed to address this critical window, both economically and neurodevelopmentally,” Hanna-Attisha said. “It’s fundamentally how we are supposed to take care of each other. And it is not revolutionary.”

‘Extra Bad for Black Women’

Back in Charleston, the first seeds of concern had been planted during the first half of O’laysha Davis’ pregnancy when, she said, an OB-GYN prescribed a drug to control high blood pressure. She’d declined to take it — against her doctor’s guidance — because her blood pressure is normally “up and down,” she said. It wasn’t unusual for her reading to be high at the doctor’s office and normal at home, a common phenomenon known as “white coat hypertension.”

But high blood pressure during pregnancy, if left untreated, can be fatal for moms and babies. Along with medication, Davis’ doctor recommended delivering the infant a few weeks before her due date to avoid complications.

It wasn’t necessarily bad medical advice, but Davis feared the risks associated with inducing labor early, knowing that babies born after 39 weeks of gestation are generally healthier.

“I’m not getting an induction. Don’t schedule me,” she told the doctor.

Her OB-GYN scheduled one anyway. But on the morning of the scheduled induction, Davis received mixed messages from the hospital. First, there wasn’t a hospital bed available, so they told her not to come in. Later that day, though, in phone calls to Davis and her emergency contact, they advised that she come in immediately.

Finally, Davis said, she lost trust in her medical team. Compelled to find someone who would listen, she Googled the names of midwives in Charleston.

Davis reached midwife Nicole Lavallee by phone.

“I have the same conversation multiple times a week,” Lavallee said, with women who feel their medical team has stopped listening to them. “It’s extra bad for Black women.”

Lavallee connected Davis with a doula, then helped her make an appointment at another birthing hospital in Charleston.

Davis avoided an induction. She felt the first pains of labor at home and then delivered her baby — a girl named Journee Divine — on Aug. 31, a few days shy of her due date, at the Medical University of South Carolina.

“I labored at home, which is what I wanted to do to begin with,” she said. “I’m going to do it my way.”

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La encuesta de KFF, que se realizó con casi 6,300 pacientes que han estado recibiendo atención en los últimos tres años, encontró que alrededor del 55% de los adultos de raza negra sienten que deben tener mucho cuidado con su apariencia para ser tratados de manera justa por los médicos y otros proveedores de atención de salud.

Casi la mitad de los pacientes hispanos, los Indio americanos y los nativos de Alaska sienten lo mismo, al igual que aproximadamente 4 de cada 10 pacientes asiáticos.

En comparación, el 29% de los blancos no hispanos encuestados dijeron que se preocupaban por su apariencia antes de las citas.

“En 2023, la noción de que cualquier persona debe prepararse para sufrir discriminación es triste por un lado y enojoso por el otro”, dijo Burgess Harrison, director ejecutivo de la National Minority Health Association, en un correo electrónico . “El estrés que causa, además de cualquier problema de salud involucrado… es una locura”.

La discriminación ha sido durante mucho tiempo una preocupación tanto para los pacientes como para los proveedores de atención médica, en un país en donde las disparidades raciales en los resultados de salud son enormes y particularmente desfavorables para las personas negras.

Un hombre hispano de 30 años de Illinois, que respondió a la encuesta de KFF, dijo a los investigadores que cuando va a sus citas médicas usa ropa con el logo de la universidad en donde trabaja. Se dio cuenta que cuando los proveedores se enteran que es profesor, lo escuchan más atentamente y lo involucran más en las decisiones médicas, dijo.

Una mujer asiática de 44 años de California dijo que sus médicos varones, blancos no hispanos, ignoraron sus preocupaciones sobre sus problemas respiratorios y le dijeron que “probablemente estaba pensando demasiado en respirar”. Más tarde le diagnosticaron asma.

Los dos encuestados no fueron identificados con nombre y apellido en el estudio.

La encuesta ofrece “una manera de cuantificar realmente cuáles son esas experiencias con el racismo y la discriminación, y las múltiples formas en las que luego impactan en la vida de las personas”, dijo Samantha Artiga, directora del programa de políticas de salud y equidad racial de KFF.

“Para las personas que han estado siguiendo estos temas durante mucho tiempo, los hallazgos no son inesperados”, agregó. Otros hallazgos del sondeo fueron:

• Un tercio de los adultos informaron al menos una de varias experiencias negativas con un proveedor de atención médica en los últimos tres años, como que un profesional asumiera algo sobre ellos sin preguntar, o sugiriera que ellos eran los responsables de su problema de salud.
• Casi una cuarta parte de los adultos negros, el 19% de los adultos nativos de Alaska y nativos americanos, el 15% de los adultos hispanos y el 11% de los adultos asiáticos dijeron que creían que habían sufrido un trato negativo debido a su raza u origen étnico.
• El 22% de las embarazadas o que dieron a luz en los últimos 10 años, de raza negra, dijeron que les negaron los analgésicos que pensaban necesitaban. Sólo el 10% de los adultos blancos no hispanos en circunstancias similares informaron la misma queja.

Cuando las personas no se sienten respetadas o bienvenidas por sus proveedores de salud, es posible que eso los desanime a buscar ayuda médica o que cambien de proveedor con más frecuencia, dijo Artiga. Los pacientes de poblaciones minoritarias “experimentan peor salud como resultado de un trato injusto en el sistema de atención médica”, agregó.

La encuesta también encontró que la discriminación fuera del sistema de atención médica tenía consecuencias para la salud. Las personas que dijeron haber experimentado discriminación en su vida cotidiana informaron dos veces más seguido que a menudo se sentían ansiosas, solas o deprimidas en comparación con aquellas que rara vez o nunca habían enfrentado discriminación.

La encuesta encontró que las personas negras que reportaron tonos de piel más oscuros tenían más probabilidades de haber sufrido discriminación que aquellos con piel más clara. También reveló “cómo persisten y prevalecen las experiencias de racismo y discriminación hoy en día, en la vida diaria y también en la atención médica, a pesar del aumento de las alertas y el abordaje sobre el racismo”, dijo Liz Hamel, directora de investigación de encuestas y opinión pública de KFF.

La diversidad entre los proveedores de atención médica es importante, según la encuesta. La mayoría de las personas de minorías que participaron en la encuesta dijeron que menos de la mitad de sus visitas médicas en los últimos tres años fueron con un proveedor de su misma raza u origen étnico. Los que sí vieron a un médico de su misma raza o etnia tuvieron más probabilidades de informar mejores experiencias, como que su médico les explicara las cosas “de una manera que pudieran entender” o les preguntara sobre otros factores de salud como su empleo, vivienda y acceso a alimentos y transporte.

El 40% de los adultos negros que vieron a proveedores de su mi raza reportaron haber discutido temas sociales y económicos, mientras que solo el 24% dijo haber charlado sobre estos temas con proveedores de otras razas.

​Harrison, de la National Minority Health Association, escribió que “es vital un énfasis renovado en reclutar más personas de color en el campo de la atención médica”.

Agregó que la encuesta “ilustra dolorosamente que el prejuicio racial en la atención sanitaria es tan dañino como cualquier enfermedad”.

La “Encuesta sobre racismo, discriminación y salud” de KFF se realizó del 6 de junio al 14 de agosto en línea y por teléfono entre una muestra representativa a nivel nacional de adultos estadounidenses en inglés, español, chino, coreano y vietnamita.

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The KFF survey of nearly 6,300 patients who have had care in the past three years found that about 55% of Black adults feel they have to be very careful about their appearance to be treated fairly by doctors and other health providers. Nearly half of American Indian, Alaska Native, and Hispanic patients feel similarly, as do about 4 in 10 Asian patients.

By comparison, 29% of white people surveyed said they worried about their appearance before appointments.

“In 2023, the notion that any person must prepare for discrimination is sad on one hand and angering on the other,” Burgess Harrison, executive director of the National Minority Health Association, wrote in an email. “The stress that this causes, in addition to whatever health issue involved, is crazy.”

Discrimination has long been a concern for both patients and health providers in the U.S., where racial disparities in health outcomes are vast and particularly unfavorable toward Black people.

A 30-year-old Hispanic man in Illinois who responded to the KFF survey told researchers he wears clothes to health care appointments with the logo of the university where he works. He noticed, he said, that when health care providers know he is a professor, they listen to him more intently and involve him more in care decisions.

A 44-year-old Asian woman in California told the researchers that her white male doctors ignored her concerns about breathing issues, telling her she “was probably just thinking too hard about breathing.” She was later diagnosed with asthma.

The two respondents were not identified in the study.

The survey offers “a way to actually quantify what those experiences are with racism and discrimination, and the multitude of ways they then impact people’s lives,” said Samantha Artiga, director of KFF’s racial equity and health policy program.

“For folks who have been following these issues for a long time, the findings are not unexpected,” she said.

Other findings:

• A third of adults reported at least one of several negative experiences with a health care provider in the past three years, such as a professional assuming something about them without asking, or suggesting they were to blame for a health problem.
• Nearly a quarter of Black adults, 19% of Alaska Native and Native American adults, 15% of Hispanic adults, and 11% of Asian adults said they believed they endured negative treatment because of their race or ethnicity.
• Twenty-two percent of Black adults who were pregnant or gave birth in the past 10 years said they were denied pain medication they thought they needed. Just 10% of white adults in similar circumstances reported the same complaint.

When people don’t feel respected or welcomed by their health care providers, they may be discouraged to reach out for medical help or may switch providers more often, Artiga said. Members of minority populations are found to be “experiencing worse health as a result of experiencing unfair treatment in the health care system,” she said.

The survey also found that discrimination outside the health care system had health consequences. People who said they experienced discrimination in their everyday lives were more than twice as likely to report often feeling anxious, lonely, or depressed compared with those who rarely or never faced discrimination.

Black people who self-reported darker skin tones were more likely to have encountered discrimination than those with lighter skin, the survey found.

The survey reveals “how persistent and prevalent experiences with racism and discrimination remain today, in daily life and also in health care, despite, really, the increased calls and focus on addressing racism,” said Liz Hamel, KFF’s director of public opinion and survey research.

Diversity among health care providers matters, the survey found. Most people of color who participated in the survey said that fewer than half of their medical visits in the past three years were with a provider who shared their race or ethnicity. But Black patients who had at least half their visits with a provider of their race or ethnicity, for example, were more likely to report better experiences, such as their doctor explaining things “in a way they could understand” or asking them about health factors such as their employment, housing, and access to food and transportation.

Nearly 40% of Black adults whose health providers were also Black said they discussed such economic and social subjects, while just 24% of Black adults who saw providers who weren’t Black said those issues were brought up.

Harrison, of the National Minority Health Association, wrote that “a renewed emphasis on recruiting more people of color into the health care field is vital.”

The survey, he added, “painfully illustrates that racial bias in healthcare is as damaging as any disease.”

KFF’s “Survey on Racism, Discrimination and Health” was conducted from June 6 to Aug. 14 online and by telephone among a nationally representative sample of U.S. adults in English, Spanish, Chinese, Korean, and Vietnamese.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Designed to counter the “obstetric racism” that researchers say leads a disproportionate number of African American mothers to die from childbirth, the project has provided 150 pregnant Black and Pacific Islander San Franciscans a $1,000 monthly stipend.

The money enabled Jones, 20, to pay for gas to drive to prenatal clinics, buy fresh fruits and vegetables for her toddler son and herself, and remain healthy as she prepared for the birth of her second child last year.

But the future of the Abundant Birth Project is clouded by a lawsuit alleging that the program, the first of its kind in the nation, illegally discriminates by giving the stipend only to people of a specific race. The lawsuit also targets San Francisco guaranteed-income programs serving artists, transgender people, and Black young adults.

The litigation is part of a growing national effort by conservative groups to eliminate racial preferences in a wide range of institutions following a U.S. Supreme Court ruling that found race-conscious admissions to colleges and universities to be unconstitutional.

In health care, legal actions threaten efforts to provide scholarships to minority medical school students and other initiatives to create a physician workforce that looks more like the nation.

The lawsuits also endanger other measures designed to reduce well-documented racial disparities. Black women are three to four times more likely than white women to die in labor or from related complications in the U.S., and Black infants are twice as likely as white infants to be born prematurely and to die before their first birthdays. Racial and ethnic minorities also are more likely to die from diabetes, high blood pressure, asthma, and heart disease than their white counterparts, according to the Centers for Disease Control and Prevention.

A handful of activist nonprofit groups and law firms are leading the charge. Do No Harm, a nonprofit formed in 2022, has sued health commissions, pharmaceutical companies, and public health journals to try to stop them from choosing applicants based on race. Do No Harm claims more than 6,000 members worldwide and partners with nonprofit legal organizations, most notably the Pacific Legal Foundation, which garnered national attention when it defended California’s same-sex marriage ban.

Another nonprofit, the Californians for Equal Rights Foundation, together with a Dallas-based law firm called the American Civil Rights Project, filed the lawsuit against the city of San Francisco and the state of California over the Abundant Birth Project, alleging the program violates the equal protection clause of the Constitution’s 14th Amendment by granting money exclusively to Black and Pacific Islander women. The 14th Amendment was passed after the Civil War to give rights to formerly enslaved Black people.

The lawsuit calls public money used for the project and the three other guaranteed-income programs “discriminatory giveaways” that are “illegal, wasteful, and injurious.”

“The city and county of San Francisco crafted the Abundant Birth Project with the express intention of picking beneficiaries based on race,” Dan Morenoff, executive director of the American Civil Rights Project, said in a phone interview. “It’s unconstitutional. They can’t legally do it, and we are optimistic that the courts will not allow them to continue to do it.”

San Francisco and state officials declined to discuss the case because of the pending litigation, but the city defended the program in its initial response to the lawsuit. The Abundant Birth Project started in June 2021 and plans to make a second round of grants to pregnant mothers this fall, the response says.

The project strives to improve maternal and infant health outcomes by easing the economic stress on pregnant Black and Pacific Islander San Franciscans. People in those groups face some of the worst outcomes in the U.S., where more women die as a result of pregnancy and childbirth than in other high-income nations. The state of California last year awarded $5 million to expand the program to include Black mothers in four other counties.

But Khiara Bridges, a Berkeley law professor and anthropologist who has talked to beneficiaries of the Abundant Birth Project but is not directly involved with it, said the Supreme Court ruling on college affirmative action could actually support the argument that the program is legal.

The court struck down affirmative action in part because the majority said Harvard and the University of North Carolina failed to show measurable outcomes justifying race consciousness in college admissions. While statistics on potential benefits from the Abundant Birth Project are not publicly available, Bridges and others familiar with the program expect researchers to demonstrate it saves and improves lives by comparing the health outcomes of families who received the stipend with those of families who did not. The outcomes could justify employing race to choose program participants, Bridges said.

Bridges also drew another distinction between the role of race in college admissions and the role of race in health disparities.

“If you don’t get into Harvard, there’s always Princeton or Columbia or Cornell,” she said. “Maternal death — the stakes are a little bit higher.”

In California, a voter initiative, Proposition 209, has prohibited race-based selection in public education and employment since 1996. California Assembly member Mia Bonta (D-Oakland) has co-authored a pending bill that would amend the proposition to allow municipalities to grant benefits to specific groups of vulnerable people if they use research-based measures that can reduce health and other disparities.

Bonta, a law school graduate, told KFF Health News that the litigation against the Abundant Birth Project is the result of “conservative groups who want to exist in a world that doesn’t exist, where communities of color have not had to suffer the generational harm that comes from structural racism.”

Bonta has more than once been a victim of medical racism herself.

When she went to the hospital with a serious back injury, she was interrogated by a doctor who appeared to believe she was faking pain so she could obtain drugs.

“But for the intervention of my husband, who happened to be there and moved into health advocacy mode, I, as a Black Latina woman, would not have received the care that I needed,” she said. Bonta’s husband, Rob Bonta, is also a lawyer and is now California’s attorney general.

Briana Jones experiences racism every day, she said.

She was 15 when she gave birth to her first child in a San Francisco hospital. Terrified and in agonizing pain, she did what laboring mothers have always done and screamed.

A nurse ordered her to “shut up.”

In the U.S., Black women are far more likely than white women to report that health care providers scolded, threatened, or shouted at them during childbirth, research shows. They also face other forms of obstetric racism, including barriers to quality care and cumulative stress from lifelong discrimination.

Growing up Black in predominantly white and Asian San Francisco has been a struggle for Jones. But, while carrying her second baby last year, she learned from her mother of the Abundant Birth Project, and within a month, her race and address in Bayview Hunters Point, where some of the city’s poorest residents live, qualified her as one of nearly 150 women to receive the $1,000 a month during her pregnancy and for six months postpartum.

“I really did feel like it was God helping me,” she said.

For Morenoff, though, it’s just another form of discrimination, and he says the city must either open the Abundant Birth Project to all pregnant women or close it down. “The whole point of the 14th Amendment is to require America to treat all Americans as Americans with the same equal rights,” he said.

Jones had high blood pressure, leading to swollen ankles and dizziness, during both her pregnancies. In her more recent one, the birth project stipend helped enable her to quit couch surfing and move into an apartment, and she gave birth to a healthy boy named Adonis.

“It’s known that people of color struggle way harder than other races,” Jones said. “Where I live, it’s nothing but struggle here, people trying to make ends meet.”

“For them to try to take this program away from us,” she said, “it’s wrong.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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Según el plan de la administración Biden, Medicare cubriría el costo total de los medicamentos de profilaxis previa a la exposición, que previenen la transmisión del VIH. Los medicamentos, conocidos como “PrEP”, serían gratuitos en forma de píldoras y, por primera vez, como inyectables de acción prolongada a través del programa de seguro gubernamental para personas de 65 años en adelante.

Las personas de 50 años o más representan la mitad de los que ya viven con VIH en el país.

El cambio de política propuesto representa un gran giro porque significa que incluso las nuevas versiones inyectables de acción prolongada de los medicamentos PrEP, que pueden costar más de $20.000 al año en Estados Unidos, estarían completamente cubiertas, sin necesidad de que los pacientes aporten copagos.

Al mismo tiempo, los líderes republicanos del Congreso han amenazado con recortar los fondos para un esfuerzo federal de prevención del VIH liderado por la administración Trump y cuyo objetivo es ayudar a todos los que están en riesgo.

“Hemos hecho un muy pobre trabajo en Estados Unidos por asegurar que las personas que más podrían beneficiarse de la PrEP tengan acceso”, dijo Justin Smith, quien dirige la Campaign to End AIDS para los Positive Impact Health Centers en el área de Atlanta.

Aunque la PrEP ha sido adoptada por estadounidenses homosexuales y trans, se receta con menos frecuencia a heterosexuales mayores de 50 años o a mujeres de cualquier edad.

En los primeros tres meses de este año, sólo el 8% de las más de 300,000 personas que recibieron PrEP en Estados Unidos fueron mujeres, según los Centros para el Control y Prevención de Enfermedades (CDC).

La brecha racial también es grande: mientras que el 66% de los blancos no hispanos elegibles para PrEP obtuvieron recetas en ese período, solo el 8% de los negros no hispanos elegibles y el 17% de los hispanos elegibles las obtuvieron.

Ampliar el acceso para hombres de color homosexuales y bisexuales, así como para mujeres de color heterosexuales y cisgénero, —en particular las mujeres negras, que representan la mayoría de las mujeres con VIH en el país así como la mayoría de las nuevas infecciones entre las mujeres— es fundamental para que la nación esté al mismo nivel que el resto del mundo, dijo Smith.

Leisha McKinley-Beach, consultora nacional sobre VIH y directora ejecutiva de la Black Public Health Academy, que entrena a los empleados negros del departamento de salud para puestos de liderazgo, señaló que la propuesta de Medicare para cubrir el costo de la PrEP inyectable podría ayudar a muchas mujeres: una inyección cada dos meses puede ser más fácil de manejar que una pastilla diaria.

Pero es sólo un comienzo. McKinley-Beach y otros están presionando a favor de un plan nacional de PrEP que aprovecharía el impulso de la reciente propuesta de Medicare para ampliar el acceso gratuito a otros grupos de edad, de forma muy parecida a lo que ocurre con las vacunas contra covid-19.

McKinley-Beach también quiere que el gobierno de Estados Unidos amplíe el mensaje de que cualquiera puede contraer el VIH, aliente a las compañías farmacéuticas a hacer más publicidad en televisión dirigida a las mujeres de color, y financie actividades de divulgación para disipar la desconfianza médica en las comunidades de color.

“Los hombres blancos homosexuales han tenido una narrativa de dignidad y respeto con respecto al tratamiento del VIH, y nunca quisiera cambiar esa narrativa”, dijo. “Pero es necesario ampliar el mensaje. Cuarenta y dos años después del comienzo de la epidemia del VIH, el modelo actual de prevención es perjudicial para las mujeres negras que podrían beneficiarse de la PrEP”.

Aunque Estados Unidos fue el primer país en aprobar la PrEP, en 2012, ahora está a la zaga del resto del mundo en acceso equitativo.

Esto se debe principalmente al costo de las pruebas de laboratorio y las visitas médicas. Si bien en Estados Unidos el costo del genérico de Truvada, una forma oral de PrEP, puede ser tan bajo como alrededor de $30 por mes, un estudio realizado por investigadores de la Universidad de Virginia reveló que el costo de comenzar con la PrEP suele ser de alrededor de $2,670 para pacientes sin seguro, incluyendo alrededor de $1,000 para pruebas de laboratorio y visitas médicas.

La nueva propuesta de Medicare cubriría hasta siete visitas de asesoramiento cada 12 meses para la evaluación y reducción del riesgo de VIH.

Mientras tanto, las píldoras PrEP son gratuitas en el Reino Unido y en los países de la Unión Europea, incluidos Francia, Alemania, Suecia y Dinamarca. Estas naciones aún no cubren las inyecciones más caras, aunque el Reino Unido está liderando una pequeña prueba de PrEP inyectable en personas que no pueden tomarla en forma de tabletas.

Estados Unidos también está a la zaga de Europa occidental y de algunas naciones de África en el tratamiento y la prevención general del VIH.

Por ejemplo, sólo el 57% de los estadounidenses VIH positivos han logrado la supresión viral, según el sitio web del gobierno estadounidense HIV.gov, lo que significa que toman medicamentos regularmente por lo que no transmiten el virus. Eso hace que la PrEP, que es para personas que no tienen el virus, sea aún más importante para que los estadounidenses sigan siendo negativos, según los expertos en VIH.

En África, por el contrario, Botswana, Eswatini (anteriormente Suazilandia), Ruanda, Tanzania y Zimbabwe ya han alcanzado los objetivos “95-95-95” de las Naciones Unidas fijados para 2025: el 95% de las personas con VIH conocen su estatus. El 95% de las personas a las que se les diagnostica una infección por VIH reciben terapia antirretroviral consistente; y el 95% de los que reciben terapia antirretroviral han logrado la supresión viral (cuando el virus es indetectable la sangre), según la Organización de Naciones Unidas (ONU).

En el Reino Unido, el 98% de las personas VIH positivas han alcanzado el estado “indetectable” gracias a los medicamentos antirretrovirales gratuitos y al tratamiento disponible a través del programa de atención sanitaria universal del país, el Servicio Nacional de Salud (NHS).

Además, casi cualquier persona en el Reino Unido que sea VIH negativa y quiera tomar PrEP puede obtenerla sin costo alguno. La nación dice que ahora está en camino de reducir las nuevas infecciones por VIH en un 80% para 2025.

El Reino Unido cambió su enfoque de PrEP después de 2015, cuando Greg Owen fundó “iwantprepnow.co.uk”, un sitio de internet que inició un movimiento de PrEP al ayudar a las personas en el Reino Unido y Europa a autoabastecerse de formas genéricas de bajo precio de Truvada, el primer medicamento. aprobado como PrEP, en farmacias de India y Hong Kong.

“Se volvió más asequible”, dijo Owen, ahora líder de PrEP en una de las principales organizaciones benéficas de salud sexual y VIH del Reino Unido, Terrence Higgins Trust. “Pronto la gente lo exigió de forma gratuita en el NHS”.

Smith dijo que, en Estados Unidos, la falta de un programa nacional de PrEP que hiciera que los medicamentos y los análisis de sangre asociados fueran gratuitos, y un clima político acalorado en torno a la atención médica, han obstaculizado la divulgación del VIH.

“En las zonas rurales del sur, especialmente en lugares como Georgia o Tennessee, ha habido una abierta hostilidad hacia la aceptación de dinero de los CDC y la ampliación de Medicaid para tratar y prevenir el VIH”, expresó Smith. “La gente piensa que es sólo política, pero esto está teniendo un impacto en la salud pública, en la vida de las personas”.

El sentimiento anti-queer en muchos sectores también crea un ambiente de hostilidad en torno a la salud sexual en general, dijo Richard Elion, director de investigación clínica del Washington Health Institute y profesor de la Facultad de Medicina y Ciencias de la Salud de la Universidad George Washington. “Hay un efecto paralizante para todos, no sólo para los estadounidenses queer”, dijo.

Elion dijo que la vergüenza que rodea al sexo y el sentimiento de vulnerabilidad que algunas personas sienten al tomar cualquier medicamento también pueden reducir el consumo de PrEP entre los estadounidenses mayores. “Tomar PrEP es realmente muy empoderante, y ese debe ser el mensaje”, dijo.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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President Joe Biden on Oct. 14, 2023, in remarks at the 2023 Human Rights Campaign National Dinner.

Are Republicans threatening to stop spending federal money to end one of the world’s most pressing public health epidemics? That’s what President Joe Biden said during a dinner hosted by an LGBTQ+ advocacy group.

“In the United States Congress, extreme MAGA Republicans are trying to undo virtually every bit of progress we’ve made,” Biden said Oct. 14 at the Human Rights Campaign event. “They’re trying to wipe out federal funding to end the HIV epidemic.”

Programs to treat HIV and fight its spread have enjoyed bipartisan funding support in recent years, experts said, so Biden’s portrayal signals a significant departure.

When we asked the White House what Biden was referring to, it pointed us to reports of budget recommendations from House Republicans that call for large cuts to the Ending the HIV Epidemic initiative, a Trump administration-era program designed to reduce new HIV infections in the U.S., as well as other programs.

The Senate Appropriations Committee passed a separate spending plan. The recommendations will be subject to negotiation as the House and Senate face a Nov. 17 deadline to pass another spending bill.

We found that although Republicans are recommending significant cuts to HIV prevention efforts across a number of public health agencies, the proposal keeps core funding intact. Meanwhile, political differences are eroding bipartisan support for global HIV-prevention funding.

Despite great strides in prevention and treatment since HIV was first reported in the U.S. in the 1980s, HIV remains at epidemic levels in the U.S. today, with approximately 1.2 million people living with HIV and around 30,000 to 35,000 new infections each year. Experts said cases are rising in the South and in rural areas, and new infection statistics show it is disproportionately affecting Black and Hispanic populations.

What Are the Proposed Cuts?

The AIDS Budget and Appropriations Coalition, a group of more than 100 public health advocacy organizations that track changes in HIV-related federal spending, said a majority of the proposed cuts to domestic HIV funding stem from House Republicans’ effort to eliminate the Ending the HIV Epidemic initiative.

The program started in 2019 with the goal of reducing new HIV infections in the U.S. by 75% by 2025 and 90% by 2030. The program so far worked regionally, targeting areas that have the highest rates of HIV cases for funding.

In 2023, about $573 million was allocated for the program across various agencies, according to KFF’s funding tracker.

• $220 million to the Centers for Disease Control and Prevention.

• $165 million to the Ryan White HIV/AIDS program. (It was named for a 13-year-old diagnosed with HIV in 1984 and is overseen by the Health Resources and Services Administration.)

• $5 million to the Indian Health Service.

• $26 million to the National Institutes of Health for research.

• $157.3 million to community health centers, which have treated around 200,000 HIV patients annually.

The program lags its goals as it approaches the 2025 benchmark. “It’s well designed, well planned, it has targets that makes sense,” said Jeffrey Sturchio, a lead researcher on a Center for Strategic and International Studies report.

Sturchio said the problem is not a fault of design, but funding, adding, “Congress has never fully funded the initiative.”

Sturchio pointed to a range of local and state “bureaucratic hurdles.” Jurisdictions that have pulled together sufficient resources have seen “tremendous progress,” he said, and overall indicators seem to be moving in the right direction.

But covid-19 reduced HIV testing and may have diverted public health efforts, CDC administrators said. KFF Health News reported in April that stakeholders saw progress but worried that it won’t be enough to make the 2030 deadline.

Democrats appear to share this concern. The spending bill proposed by the Democratic-controlled Senate Appropriations Committee maintained or slightly increased funding levels to all HIV-related programs. The committee requested more data about the program, describing its “lack of quantifiable data showing outcomes.”

The House has not yet passed the bill out of committee. We know of some proposed cuts from the bill, which the Republican-led House Appropriations Subcommittee released in July.

It outlines a $1.6 billion cut to the CDC, including a $220 million reduction in “HIV/AIDS, viral hepatitis, sexually transmitted diseases, and tuberculosis prevention” and a $238.5 million cut from the Ryan White HIV/AIDS program. The Ryan White program provides medical care and support services to low-income HIV patients and serves more than half of those diagnosed in the U.S.

The bill also proposes cutting funding to the Minority HIV/AIDS fund by more than half — from $60 million to $28 million. According to HIV.gov, the fund supports prevention and care projects targeting disparities that affect communities of color.

Additional details about how these cuts could affect programs are detailed in a committee report that has not been made public. PolitiFact and some advocacy organizations obtained copies of the report, but the House Appropriations Committee did not respond to questions about it. The report we saw recommended cutting all funding for the Ending the HIV Epidemic initiative.

And House Democrats, advocacy organizations, and KFF Health News have each reported that the Ryan White program and CDC cuts result from a plan to eliminate the Ending the HIV Epidemic initiative.

“If they cut funding, it’s going to have a dramatic and draconian impact on the ability of all of the people who are working in these jurisdictions to improve public health,” said Sturchio, the researcher.

Although the cuts would be dramatic, experts said, they would not eliminate all domestic HIV funding.

“There is certainly a demonstration and a commitment to some of the core HIV programs, but there are millions of dollars of proposed cuts in other areas,” said Lindsey Dawson, associate director for HIV policy at KFF. “These cuts would have a meaningful impact on the ability of programs to provide lifesaving interventions for both HIV care and treatment, as well as prevention.”

The cuts would mean a 16% cut to the CDC’s division of STD prevention, a 9% cut to the Ryan White HIV/AIDS program, and a 53% cut to the Minority HIV/AIDS Fund from fiscal year 2023 to 2024.

These funding cuts are only proposals. They require a vote from the full appropriations committee and would have to pass the House and be negotiated with a Democratic-controlled Senate.

“We’ve heard for a long time that HIV is a bipartisan issue. But what some people forget, is that that bipartisanship was hard fought for over the first decade of the HIV epidemic,” said Dawson.

Other Challenges to HIV/AIDS Spending

The U.S. commitment to global HIV prevention, meanwhile, is also under scrutiny. Rep. Chris Smith (R-N.J.) challenged reauthorizing the President’s Emergency Plan for AIDS Relief, also known as PEPFAR, without first making some changes. Started in 2003 by President George W. Bush, the program distributes funds in more than 50 countries for HIV testing, prevention, treatment, and medications. It also strengthens health care systems to fight AIDS.

Funding for the program has grown over the past 20 years, totaling more than $110 billion. The program reported 25 million lives saved by medical intervention.

Smith, who chairs the House Foreign Affairs subcommittee on Global Health, has expressed concerns that money is being given to nongovernmental organizations that support abortion rights and access.

U.S. law prohibits the direct use of overseas funding to provide abortions or to lobby for access to abortions. This has been the case since 1973. However, organizations that receive U.S. funding can do so with their own non-U.S. funding.

An official from the State Department, which runs the program, confirmed to PolitiFact that PEPFAR is legally restricted from funding abortion or lobbying for abortion access; the official cited the training of staff and partners and the monitoring of procedures to ensure compliance.

Other anti-abortion groups have favored a “Mexico City Policy,’‘ which has required foreign nongovernmental organizations to certify that they would not perform or promote abortion with funds from any source to be eligible for U.S. government funding. Trump applied the policy to PEPFAR, but Biden rescinded it.

The failure to reauthorize PEPFAR would not eliminate the program, and Congress can continue to fund the program without reauthorization, but it could cause some provisions to lapse over the next few years.

The lack of a reauthorization would have significant symbolic impact, said Kellie Moss, KFF’s associate director of global health and HIV policy. “It could make the program more vulnerable during funding discussions without a clear signal of bipartisan support.”

Although reauthorization is being held up, funding has progressed. On Sept. 28, the House passed a State Department and Foreign Operations Appropriations bill, which would fund PEPFAR for another year but implement a Mexico City-like policy provision on all global health funding. This bill would also extend the lapsing provisions for another year.

Our Ruling

Biden said that Republicans in Congress are “trying to wipe out federal funding to end the HIV epidemic.”

A subcommittee of House Republicans has proposed cutting some HIV prevention programs anywhere from 53% to 9% in fiscal 2024, depending on the program.

A committee’s draft report cited by advocacy and policy groups shows these cuts stem from the elimination of the Trump-era Ending the HIV Epidemic initiative, although the committee did not respond to questions about that.

Taken together, these cuts would not eliminate — or “wipe out” — all federal domestic HIV spending, but they do represent a significant cut.

Meanwhile, the House has not moved ahead to reauthorize PEPFAR, which supplies U.S. dollars for global HIV prevention, over Republican concerns about where organizations that receive the money stand on abortion access. But the House has passed one year of PEPFAR funding with some conditions about how it is distributed, which it can do without reauthorizing the program.

Biden’s statement is partially accurate in that significant funding cuts have been proposed by House Republicans, but he exaggerates by saying these efforts would “wipe out” federal funding.

We rate this claim Half True.

Our Sources

Email interview with a White House spokesperson, Oct. 17, 2023 

Email interview with a State Department official, Oct. 18, 2023 

Email interview with Michael Finan, communications director for Rep. Chris Smith, Oct. 16, 2023

Interview with Kellie Moss, associate director of Global Health & HIV policy at KFF, Oct. 17, 2023

Interview with Lindsey Dawson, associate director of HIV policy at KFF, Oct. 18, 2023

Interview with Nick Armstrong, manager of advocacy and government affairs at the AIDS Institute, Oct. 18, 2023

Interview with Carl Schmid, executive director of the HIV + Hepatitis Policy Institute, Oct. 18, 2023

Interview with Jeffrey Sturchio, senior associate of the Global Health Policy Center at the Center for Strategic and International Studies, Oct. 25, 2023

AHEAD, “The Six EHE Indicators — Incidence,” accessed Oct. 31, 2023

AIDS United, “The HIV Safety Net Is Under Attack,” accessed Oct. 31, 2023

The Associated Press, “Republican Opposition to Abortion Threatens Global HIV/AIDS Program That Has Saved 25 Million Lives,” Sept. 11, 2023

Center for Family and Human Rights, “Dear Colleague, President Biden has hijacked PEPFAR, the $6 billion a year foreign aid program designed to mitigate,” June 6, 2023

Center for Family and Human Rights, “PEPFAR Coalition Letter,” May 1, 2023

Center for Strategic and International Studies, “Can the Ending the HIV Epidemic in the U.S. Initiative Succeed?” Aug. 26, 2022

Centers for Disease Control and Prevention, “Core Indicators for Monitoring the Ending the HIV Epidemic Initiative,” Oct. 17, 2023

Centers for Disease Control and Prevention, “Dear Colleagues: What’s New | About the Division of HIV/AIDS Prevention,” May 24, 2022

Centers for Disease Control and Prevention, “EHE Accomplishments,” Sept. 21, 2023

Centers for Disease Control and Prevention, “Transgender Women Urgently Need More HIV Prevention and Treatment Services, New CDC Data Show,” April 15, 2021

Centers for Disease Control and Prevention, “2021 HIV Incidence | NCHHSTP Newsroom,” May 23, 2023

Centers for Disease Control and Prevention, “Estimated HIV Incidence and Prevalence in the United States, 2017-2021: National Profile,” May 23, 2023

Congress.gov, “Senate Appropriations LHHSE Committee Report,” July 27, 2023 

Fox News, “Biden Administration ‘Hijacking’ George Bush AIDS Program to Push Abortion in Africa: GOP Congressman,” June 10, 2023

HIV.gov, “Ending the HIV Epidemic,” Aug. 1, 2023

HIV.gov, “Expanding PrEP Coverage in the United States to Achieve EHE Goals,” Oct. 18, 2023

HIV.gov, “HIV & AIDS Trends and U.S. Statistics Overview,” Oct. 3, 2023

HIV.gov, “Minority HIV/AIDS Fund in Action,” May 16, 2023 

HIV.gov, “What Is the Minority HIV/AIDS Fund?,” Sept. 25, 2019

House Appropriations Committee, “FY24 LHHSE Appropriations Bill Summary,” July 13, 2023

House Appropriations Committee, “House Approves H.R. 4665, The Department of State, Foreign Operations, and Related Programs Appropriations Act,” Sept. 28, 2023

House Democrats Appropriations Committee, “House Republican Funding Bill Kicks Teachers Out of Classrooms, Takes Away Job Opportunities, and Harms Women and Children,” July 13, 2023 

KFF, “PEPFAR Reauthorization: The Debate About Abortion,” Sept. 21, 2023

KFF, “PEPFAR Reauthorization 2023: Key Issues,” March 13, 2023

KFF, “The Mexico City Policy: An Explainer,” Jan. 28, 2021

KFF, “The U.S. Ending the HIV Epidemic (EHE) Initiative: What You Need to Know,” Feb. 9, 2021

KFF, “The U.S. Government and International Family Planning & Reproductive Health: Statutory Requirements and Policies,” Oct. 27, 2023

KFF, “The U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) ,” July 26, 2023

KFF, “U.S. Federal Funding for HIV/AIDS: Trends Over Time,” March 5, 2019

KFF Health News, “In Move to Slash CDC Budget, House Republicans Target Major HIV Program Trump Launched,” Sept. 8, 2023

KFF Health News, “US Officials Want to End the HIV Epidemic by 2030. Many Stakeholders Think They Won’t,” April 24, 2023

National Alliance of State and Territorial AIDS Directors, “FY2024 Appropriations for Federal HIV/AIDS Programs,” July 28, 2023

NBC News, “How Tennessee Axed Millions in HIV Funds Amid Scrutiny From Far-Right Provocateurs,” Feb. 2, 2023

NBC News, “Tennessee Blocked $8 Million for HIV, Now Ends Up With $13 Million, Stunning Advocates,” April 21, 2023

NBC News, “U.S. Progress in HIV Fight Continues to Trail Many Other Rich Nations,” May 23, 2023

NPR, “What’s Behind the Debate to Re-Authorize PEPFAR, the Widely Hailed Anti-HIV Effort?” Sept. 29, 2023

Planned Parenthood, “The Quickie: Tennessee to Pull Federal Funding for HIV Prevention to Avoid Giving Grants to Planned Parenthood,” Jan. 27, 2023 

Reuters, “US State Dept Slams Congress for Failure to Renew Anti-AIDS Program,” Oct. 3, 2023

Roll Call, “PEPFAR Reauthorization Debate Highlights Splits in GOP,” Sept. 21, 2023

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Ryan White HIV/AIDS Program, “Ryan White HIV/AIDS Program Annual Client-Level Data Report 2020,” December 2021

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The Heritage Foundation, “Reassessing America’s $30 Billion Global AIDS Relief Program,” May 1, 2023

The New Yorker, “Abortion Opponents Are Targeting a Signature G.O.P. Public-Health Initiative,” Aug. 24, 2023

The New York Times, “Tennessee’s Rejection of Federal Funds to Curb HIV Alarms Prevention Groups,” March 24, 2023

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KFF Health News Southern correspondent Sam Whitehead contributed to this report.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

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As one of the only Black kids in predominantly white schools in upper-middle-class communities — including the university enclaves of Palo Alto, California, and Chapel Hill, North Carolina — he often got detention for chatting with his white friends during class, while they got only warnings. He chalked it up to his being Black. Ditto, he said, when he was wrongly arrested as an eighth grader for a bomb threat at his school while evacuating with his white friends. So he wasn’t surprised that his behavioral issues drew punishment, even as some of his white friends with similar symptoms instead started getting treatment for attention-deficit/hyperactivity disorder.

“Black kids at a very young age, we start dealing with race, we have a lot of racial stamina,” said Wade, who now lives outside of Durham, North Carolina. “But I didn’t understand until later on that there was probably something else going on.”

After spending years grappling with self-doubt and difficult relationships — and smoking what he called “Snoop Dogg volumes of weed” from middle school until his 20s — he learned he had ADHD and dyslexia, two diagnoses that often overlap. He was 37.

It’s long been known that Black children are underdiagnosed for ADHD compared with white peers. A Penn State report published in Psychiatry Research in September studied the extent of the gap by following more than 10,000 elementary students nationwide from kindergarten to fifth grade through student assessments and parent and teacher surveys. The researchers estimated the odds that Black students got diagnosed with the neurological condition were 40% lower than for white students, with all else being equal — including controlling for economic status, student achievement, behavior, and executive functioning.

For young Black males, the odds of being diagnosed with ADHD were especially stark: almost 60% lower than for white boys in similar circumstances, even though research suggests the prevalence of the condition is likely the same.

The racial ADHD divide isn’t merely a health concern. It’s deepening inequity for Black children, and especially Black males, said the study’s lead author, Paul Morgan, the former director of the Center for Educational Disparities Research at Penn State. He now leads the Institute for Social and Health Equity at the University of Albany.

ADHD has been diagnosed in nearly 1 in 10 children in the United States, according to a Centers for Disease Control and Prevention study published in 2022, with rates surging nearly 70% in the past two decades. It is often a lifetime condition that can be managed with treatments including therapy and medication. Untreated, children with ADHD face much greater health risks, including drug addiction, self-harm, suicidal behavior, accidents, and untimely death. By adulthood, many people with undiagnosed ADHD have spent years feeling isolated and hopeless, just as Wade did.

Even before Wade’s diagnosis, he was helping similar college students in a career counseling role at North Carolina State University. Today, he’s a licensed mental health and addiction counselor and doctoral student, but he said it’s been hard to see his successes.

“To the rest of the world, this is a Black man with two master’s degrees, and he’s a PhD candidate, and he has two licenses and certifications,” he said. “But to me, I’m a brother who’s had a lot of bad luck with people and jobs I’ve gotten fired from. I’ve never been promoted, ever, in my professional life.”

Wade’s experiences of race and ADHD are intertwined. “ADHD is an accelerant to my Black experience,” he said. “I can’t separate my experiences as a Black boy and Black man from my experiences of understanding my neurodivergent identity.”

People who study and treat ADHD cite several reasons why young Black males fall under the radar, including teachers who are racially biased or have lower expectations of Black students and don’t recognize an underlying disability, and Black parents who are distrustful of teachers and doctors, fearing they’ll label and stigmatize their children.

“We’ve known for a long time that ADHD diagnoses are not made in a vacuum. They’re made in a geographic context, cultural context, racial context,” said George DuPaul, a psychology professor at Lehigh University who studies nonmedication interventions for ADHD.

Studies have shown that ADHD underdiagnosis contributes to harsher school discipline and to the “school-to-prison pipeline.” Black kids routinely face punishment, including criminal prosecution, for problem behavior and mental health conditions such as ADHD, while white kids are more likely to be diagnosed with behavioral conditions and receive medical treatment and support. There’s a common saying: “Black kids get cops, white kids get docs.”

Courtney Zulauf-McCurdy, a researcher and clinician at the University of Washington School of Medicine, focuses on decreasing mental health disparities in early childhood. By preschool, she said, Black children with ADHD symptoms are more likely to be expelled and less likely to receive appropriate treatment than their white peers.

Her research has found that teachers’ judgments of children are heavily influenced by their opinions of the kids’ parents, and that often determines whether those children are evaluated for behavioral conditions and given appropriate support — or simply kicked out of class. She said the Penn State findings confirm what she’s seen in clinics and heard from parents.

Zulauf-McCurdy also pointed to research that shows Black children are 2.4 times as likely as white kids to receive a diagnosis of conduct disorder compared with a diagnosis of ADHD. She said the racial bias and overdiagnosis of conditions such as oppositional defiant disorder, defined by symptoms of being uncooperative and hostile toward authority figures, result in more punitive consequences such as being isolated in separate classrooms.

To fix inequities in ADHD diagnosis, mental health experts see a need for increasing culturally sensitive screening and addressing Black families’ concerns about potential bias and racism. Ensuring access to information about symptoms and treatments for ADHD may help address obstacles to care.

Looking back, Wade said, he is grateful he got diagnosed, even if it came late. But, he said, learning about his condition earlier would have given him more confidence navigating school, work, and life. “If I was able to get a diagnosis, I would have had a lot more support and love in my life,” he said.

Behavioral tools and medication have made it easier for him to focus and to regulate his mood. The diagnosis has also helped him become more aware of how to manage his depression and anxiety.

“Now it’s an understanding of how I exist, how my brain works,” Wade said. “I don’t think that I’m just broken.”

Still, Wade wonders what the ADHD label would have meant for him as a child — despite his family’s privileges of money and education — before more awareness existed about the condition. Even now, he said, the remaining stigma around the diagnosis is probably worse for Black kids, who still get less benefit of the doubt than white children.

Today, Wade is helping Black and neurodivergent youth and adults identify ADHD and other conditions. It’s part of his work, but it’s also deeply personal.

“I remember how it felt to not be seen, to not be heard, and to have your needs dismissed,” he said. “It feels good to see other people getting the help that they need and know that it helps Black people as a whole and generations of those families.”

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Under the plan from the Biden administration, Medicare would cover patients’ full cost of preexposure prophylaxis drugs, which prevent HIV transmission. The drugs, known by the shorthand “PrEP,” would be free in pill form and — for the first time — as long-acting injectables through the government insurance program designed for those 65 and older. Those 50 and over make up half of all people in the U.S. already living with HIV.

The proposed policy change represents a big shift because it means that even new long-acting injectable versions of PrEP drugs, which can cost more than $20,000 a year in the U.S., would be covered fully, without requiring patients to kick in copayments. It is not yet clear what the plan would mean for taxpayers, though, either in paying for the medications or in offsetting the costs of caring for fewer Medicare patients with HIV in the future.

The final green light for the plan was expected Oct. 10, but the Centers for Medicare & Medicaid Services announced it is still working out details of how to transition coverage for patients already taking the drugs.

The U.S. is decades behind nations in Europe and Africa that are on track to end new HIV infections by 2030. But while the proposal should bring down infections in older Americans, it highlights remaining inequities: Many people under age 65 will still struggle to pay for PrEP. And, at the same time, Republican congressional leaders have threatened to cut funding for a federal HIV prevention effort championed by the Trump administration that is intended to help all at risk.

“We’ve done a very poor job in the U.S. of assuring that people who could most benefit from PrEP have access to it,” said Justin Smith, who directs the Campaign to End AIDS at Positive Impact Health Centers in the Atlanta area.

Though PrEP has been embraced by gay and trans Americans, it is prescribed less often to heterosexuals over 50 or women of any age. In the first three months of this year, just 8% of the more than 300,000 people receiving PrEP in the U.S. were women, according to the Centers for Disease Control and Prevention. The racial gap is large, too: While 66% of white people eligible for PrEP got prescriptions for it in that period, only 8% of eligible Black people and 17% of eligible Hispanic people did.

Broadening access for gay and bisexual men of color, as well as straight and cisgender women of color — particularly Black women, who represent the majority of women with HIV in the U.S. as well as the majority of new infections among women — is critical for the nation to catch up to the rest of the world, Smith said.

PrEP, a Key HIV Prevention Tool, Isn’t Reaching Black Women

New HIV infections occur disproportionately among Black women, but exclusionary marketing, fewer treatment options, and provider wariness have limited uptake of preexposure prophylaxis, or PrEP, drugs, which reduce the risk of contracting the virus.

Leisha McKinley-Beach, a national HIV consultant and CEO of the Black Public Health Academy, which prepares Black health department employees for leadership positions, noted that the Medicare proposal to cover the cost of injectable PrEP could help many women because a shot given every two months can be easier to manage than a daily pill.

But it’s just a start. She and others are lobbying for a national PrEP plan that would build on momentum from the recent Medicare proposal to expand free access to other age groups, much as with covid-19 vaccinations. McKinley-Beach also wants the U.S. government to expand the message that anyone can get HIV, encourage drug companies to advertise more on TV to women of color, and fund outreach to dispel medical mistrust in communities of color.

“Gay white men have had a narrative of dignity and respect with regards to HIV treatment, and I would never want to change that narrative,” she said. “But the message needs to be broadened. Forty-two years into the HIV epidemic, the current HIV prevention model is detrimental to Black women who could benefit from PrEP.”

Though the U.S. was the first nation to approve PrEP, in 2012, it now trails the rest of the world in equitable access. That’s mostly due to the cost of laboratory tests and medical visits. While the cost of the generic form of Truvada, an oral form of PrEP, can be as low as about $30 a month in the U.S., a study by University of Virginia researchers reported the cost of starting PrEP is typically about $2,670 for uninsured patients, including about $1,000 for lab tests and medical visits. The new Medicare proposal would cover up to seven counseling visits every 12 months for HIV risk assessment and reduction.

Meanwhile, PrEP pills are free for people in the United Kingdom and European Union nations including France, Germany, Sweden, and Denmark. Those nations don’t yet cover the more expensive shots, although the U.K. is leading a small test on injectable PrEP in people who cannot take it in tablet form.

The U.S. also lags Western Europe and some nations in Africa in overall HIV treatment and prevention. For example, just 57% of HIV-positive Americans have attained viral suppression, according to the U.S. government website HIV.gov, meaning they regularly take medications to make them unable to transmit the virus. That makes PrEP, which is for people who don’t have the virus, all the more important for Americans to stay negative, according to HIV experts.

In Africa, by contrast, Botswana, Eswatini (formerly Swaziland), Rwanda, Tanzania, and Zimbabwe have already achieved the United Nations’ “95-95-95” targets set for 2025 — 95% of people with HIV know their HIV status, 95% of people with diagnosed HIV infection receive sustained antiretroviral therapy, and 95% of people receiving antiretroviral therapy have achieved viral suppression, or the virus is undetectable in their blood — according to the U.N.

In the U.K., 98% of HIV-positive people have achieved “undetectable” status via free antiretroviral medicines and treatment available through the country’s universal health care program, the National Health Service. Moreover, nearly anyone in the U.K. who is HIV-negative and wants to take PrEP can get it at no charge. The U.K. says it is now on a path to reduce new HIV infections by 80% by 2025.

The U.K. changed its PrEP approach after 2015, when Greg Owen founded “iwantprepnow.co.uk,” a website that ignited a PrEP movement by helping people in the U.K. and Europe self-source low-priced generic forms of Truvada, the first drug approved as PrEP, from pharmacies in Hong Kong and India.

“It became more affordable,” said Owen, now PrEP lead at one of the U.K.’s top HIV and sexual health charities, Terrence Higgins Trust. “Soon people demanded it for free on the NHS.”

In the U.S., Smith said, the lack of a national PrEP program that would make the drugs and associated bloodwork free and a heated political climate around health care have hindered HIV outreach.

“In rural areas of the South, especially in places like Georgia or Tennessee, there has been outright hostility toward accepting money from the CDC and expanding Medicaid to treat and prevent HIV,” Smith said. “People think it’s just politics, but this is having an impact on public health, on people’s lives.”

Anti-queer sentiment in many quarters also creates an environment of hostility around overall sexual health, said Richard Elion, director of clinical research at Washington Health Institute and a professor at George Washington University School of Medicine and Health Sciences. “There’s a chilling effect for everyone, not just queer Americans,” he said.

Elion said shame surrounding sex and the feeling of vulnerability that some people get from taking any medicine may also reduce PrEP uptake among older Americans. “Taking PrEP is actually very empowering, and that needs to be the message,” he said.

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Among infectious-disease doctors like me, Banu is famous as a symbol of the power of science and modern medicine.

And yet, beyond that distinction, Banu has largely been forgotten by the public. That fate is a reminder that, well after a global pandemic recedes from headlines in wealthy countries, its survivors have needs that go unmet. Although Banu survived smallpox, she’s been sickly her whole life. She was once bedridden for three months with fevers and vomiting, but she couldn’t afford to see a good doctor. The doctor she could afford, she recalled, prescribed her cooked fish heads. Banu also complains of poor vision: “I cannot thread a needle, because I cannot see clearly,” she told me, via a translator, during an interview in Digholdi, the village where she lives.

“I cannot examine the lice on my son’s head and cannot read the Quran well because of my vision,” she said.

In the years following smallpox eradication, journalists from all over the world traveled to interview Banu, but they petered out years ago. “Mother is so famous, but they do not take any follow-up of Mom to know whether she is in a good or bad state,” her middle daughter, Nazma Begum, told me.

Banu and her family are proud of her place in history, but their role in the eradication of smallpox speaks to the limits of merely fighting diseases. In his biography of the doctor and philanthropist Paul Farmer, author Tracy Kidder recorded a Haitian saying: “Giving people medicine for TB and not giving them food is like washing your hands and drying them in the dirt.”

After Banu and her family survived smallpox, the rest of the world dried its hands in the dirt — just as it did for the poorest victims of covid-19 and later the most marginalized people with mpox, formerly known as monkeypox.

I traveled to South Asia to speak with aging public health workers and smallpox survivors in South Asia for the audio-documentary podcast “Epidemic: Eradicating Smallpox.”

To meet Banu, I flew 14 hours to Delhi and another two hours the next day to Dhaka, then took a five-hour drive to Barishal, followed the next day by a 90-minute ferry ride and a two-hour drive to arrive in Digholdi. Banu and her family — her husband, their three daughters, and their son — share a one-room bamboo-and-corrugated-metal home with a mud floor. The home, which lacks indoor plumbing, is divided down the middle by a screen and a curtain. Water leaks in through the roof, soaking their beds. A bare bulb hangs from a wire overhead. Her in-laws used to live with them, too, but they have passed away.

Women in rural Bangladesh rarely work outside the home. Banu’s husband, Rafiqul Islam, pedals a rickshaw. Some days he earns nothing. On a good day, he might make 500 taka (not quite $5). Although the World Health Organization arranged for a plot of land in her name, Banu said, the family has nowhere to cultivate. “They gave me the land, but the river consumes that. Some of it is in the river,” she said. Cyclones and rising sea levels have led to coastal erosion and saltwater intrusion, and there have also been land disputes.

Begum, now 23, completed a year of college but then dropped out. Banu and her husband couldn’t afford the fees. Instead, they arranged for her to marry. Her mother’s fame “did not help me in any way in my studies or financially,” Begum told me.

The family’s financial life is precarious. Five hundred taka used to buy a 10-kilogram bag of rice and vegetables. During my visit in 2022, the instability of the Russia-Ukraine war created fluctuating oil prices, and Banu said that amount was enough to pay only for the rice.

Banu is well aware that thanks to vaccination, millions of people no longer die of smallpox and other infectious diseases. By one estimate, the eradication of smallpox has prevented at least 5 million deaths around the world each year. Vaccines remain one of the most cost-effective and lifesaving gifts of modern medicine. The Centers for Disease Control and Prevention estimates that the U.S. saves 10 times what it spends on childhood vaccination. But all this is cold comfort to Banu when she and her family are struggling to survive.

Every public health crisis leaves people behind. When I worked as an Ebola aid worker in Guinea in 2015, residents asked why I cared so much about Ebola when local women were hemorrhaging in childbirth and didn’t have enough to eat. They were right not to trust our efforts. Why should they upend their lives to help us defeat Ebola? They knew their lives wouldn’t be materially better when we declared victory and left, as we had done so many times before as soon as our own interests were protected. Their prediction was correct.

As the coronavirus pandemic winds down in the United States, Banu’s life is a reminder that illness has a long tail of consequences and doesn’t end with a single shot. The world’s most powerful nation hasn’t ensured equitable access for its own citizens to health care and lifesaving tools such as covid vaccines, Paxlovid, and monoclonal antibodies. The resulting disparities will get worse as the federal government finishes turning America’s emergency covid response over to the routine health care system. Many Americans can’t afford to stay home when they or their children are sick. Families lack support to care for young or elder family members or people with medical illnesses or disabilities. Many say their biggest worry is paying for groceries or gas to get to work.

Their plight is less extreme than Banu’s, but their suffering is real — and it is magnified worldwide. As long as vulnerable communities are deprived of holistic, comprehensive responses to mpox, covid, Ebola, or other public health emergencies to come, these people will have a reason to be suspicious, and enlisting their help to fight the next crisis will be that much harder.

A version of this article first appeared in The Atlantic in August 2022.

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“It tore me up, real bad,” said Porter, 50, from the Stop N Shop, a defunct gas station that is now a convenience shop. “I’ll never get over it.”

Patro, who was 46 when he died, was a barber. He had even cut the hair of the man, then 20, who is accused of shooting him after an argument over a cigarette.

For this tightknit town of 500, situated on the west bank of the Mississippi River and surrounded by soy and cotton fields, the killing was both shocking and senseless, Porter said.

“Everybody here gets along,” he said. “Everybody had a question, like, ‘Why? Why? Why did he do this?’”

Patro Porter’s death wasn’t an isolated incident. Phillips County, where Elaine is located, is home to about 15,000 people spread across 690 square miles. Data shows they’re at high risk of gun violence. From 2016 to 2020, the county had the country’s highest per capita rate of gun homicides, according to an analysis last year by the Center for American Progress, a policy research institute.

During three days in July, police responded to reports of four homicides in Helena-West Helena, the Phillips County seat. That might be a small number for a major city, but it has an outsize impact in a rural town, said Nick Wilson, senior director for gun violence prevention at the Center for American Progress.

Suicide rates in rural areas have long been higher than in cities. But nationwide, rural gun homicides have risen too, and, in some areas, outpaced their urban counterparts. From 2016 to 2020, 13 of the 20 counties with the highest gun homicide rates were in the rural South, according to the center’s study.

The deaths can devastate small communities. Rural areas often lack the resources and expertise needed to stem gun violence and medical facilities to care for the wounded.

More research is needed to determine what drives rural gun violence in the places it’s most prevalent, but the causes are similar to those in historically “redlined” urban neighborhoods, where Black people have been denied mortgages and other housing opportunities, said Daniel Webster, a distinguished scholar at the Johns Hopkins Center for Gun Violence Solutions. Both types of areas have been starved of resources and opportunities, he said.

“These disadvantages are structural and driven by policy rather than naturally occurring,” he said. “The conditions that lead to structural racism also lead to higher rates of gun violence.” These are places that have lacked investment, where poverty is rampant, unemployment is high, schools are failing, and buildings are crumbling.

Phillips County has a harrowing history of racism. In 1919, Elaine was the site of one of the worst racial massacres in U.S. history. At least 200 Black residents were murdered by white residents and soldiers over a couple of days after a group of Black farmers met one late September evening to demand better payments for their cotton crops.

The descendants still deal with generational trauma, said Brian Mitchell, a historian who researched the massacre and is now director of research and interpretation at the Abraham Lincoln Presidential Library and Museum. Segregation continued, the mechanization of farming sent unemployment soaring, and poverty deepened.

Still, Ora Scaife, 40, remembers a “joyful” childhood in Elaine, where she attended middle and high school football and basketball games and looked forward to seeing store windows decorated for the holidays. “It was popping,” said Scaife, manager at the town’s Dollar General.

Today, Elaine’s shops and restaurants sit empty. Many houses are crumbling. Even the schools shut down because of declining enrollment — children are now bused 30 minutes to Marvell. The Dollar General employs both Patro Porter’s son and the sister of the man accused of shooting him, Scaife said.

After he was shot, Patro Porter was first taken to a medical center 25 miles away, and then flown to a trauma center in Memphis, Tennessee, where he died the next day. The man accused of killing him was captured two months later in Little Rock. He’s now awaiting trial.

Elaine is divided by Main Street, where on a recent afternoon a pickup truck with a Confederate flag license plate sat parked in front of the one-room library. White residents populate the town’s southern portion, and the north, which includes a public housing complex — a cluster of two-story brick buildings where Patro was shot— is a Black community, said Lisa Hicks Gilbert.

“Phillips County is rooted in violence,” said Hicks Gilbert, who became Elaine’s first Black and female mayor in January and is a descendant of an Elaine massacre survivor. “Generational poverty by violence is going to breed violence.”

Under those conditions, even small stressors, like a fight over a cigarette, can lead to a shooting, researchers say. Most homicides in Phillips County, as in urban areas, stem from interpersonal or domestic disputes. A few years ago, a man in Helena shot a man who allegedly stole butter beans from his garden.

“A lot of people think homicides happen very quickly, but they transpire over days and weeks,” said Charles Branas, director of the Columbia Center for Injury Science and Prevention.

In the past, disputes would end up in fistfights, said Kevin Smith, who was Helena-West Helena’s mayor until 2022 and served in the Arkansas state senate. The widespread availability of guns escalates homicides and suicides, according to public health researchers. In the South, gun laws are generally lax. Arkansas already had permissive gun laws and further loosened them in recent years, according to an Axios analysis of state gun laws.

Phillips County, and the entire Mississippi Delta region, has lacked concentrated federal investment and a steady stream of grants that typically flow to bigger cities, Smith said. That affects everything from the lack of mental health care and addiction treatment to the lack of quality public housing and programs needed to stimulate the economy and schools, said Smith, who also serves on the board of the Helena Regional Medical Center. “If you scratch down enough,” Smith said, “it is despair.”

Hicks Gilbert knows the community can’t undo decades of poverty and trauma overnight, but she said residents are used to overcoming big challenges and making do with few resources. “These are the most resilient people, the most resourceful people,” she said.

In April, Hicks Gilbert hired a new police chief — the only full-time law enforcement position in Elaine — from a different part of the state. She is requiring public housing operators to keep properties up to code, bringing in dumpsters to encourage residents to clean up trash, tearing down dilapidated houses, hiring young people to work in city government and at the community center, and starting a tutoring program.

“I am changing the way people see their community and changing the mindset about what is possible,” Hicks Gilbert said.

But persistent poverty and violence take an emotional toll, said Steven Cannon, a pastor who also runs an after-school community center in West Helena.

“What you see can be depressing at times, especially on a young generation,” Cannon said.

Over the past three years, Cannon has handled more than 10 funerals for young people who died of gun violence. Every time, he directs mourners to release balloons into the air to express the loss. The most recent funeral he officiated, for a 15-year-old who was a regular at the community center and was shot last year, was especially hard, Cannon said.

“Because you say, in your mind, ‘When will it stop?’” he said. “‘When will somebody listen?’”

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