Tag: Race and Health

Journalists Discuss FTC and Supreme Court Actions — And What’s Up With the Bird Flu

KFF Health News contributor Andy Miller discussed the Federal Trade Commission criticizing pharmacy benefit managers on KCBS on July 9. He also discussed diversity, equity, and inclusion programs in medicine and bird flu on WUGA’s “The Georgia Health Report” on July 5 and June 28, respectively.


KFF Health News senior correspondent Aneri Pattani discussed the Supreme Court decision to throw out a bankruptcy deal involving the makers of OxyContin, which would have shielded the owners of Purdue Pharma from civil lawsuits, on NPR’s “Weekend Edition Sunday” on June 30. Pattani discussed the same issue in a Facebook Live conversation with Community Education Group on July 3.


Retratos convierten a muertes por armas de fuego en historias imborrables

Philadelphia. — Zarinah Lomax es una documentalista poco común. Ha diseñado vestidos con las cintas amarillas de escenas de crimen y abrigos con leyendas pintadas a mano que dicen: “No Disparen”, en dorado, negro y púrpura. Cada pocos meses, transporta docenas de retratos de habitantes de Philadelphia —caras vibrantes, audaces y más grandes que la vida misma— a galerías temporales para alertar sobre la violencia armada en su ciudad natal, y en América.

En un depósito, Lomax estima que tiene unos mil lienzos, en su mayoría de jóvenes que murieron por disparos, y otros de madres, hermanas, amigos y dolientes que se preguntan por qué.

“El propósito no es hacer llorar a la gente”, dijo Lomax, una nativa de Philadelphia que ha viajado a Nueva York, Atlanta y Miami para colaborar en exhibiciones similares sobre este trauma. “Es para que las familias y las personas que han pasado por esto sepan que no son olvidadas”.

Cada persona “no es un número. Este es el hijo de alguien. La hija de alguien que estaba trabajando en algo”, dijo. “Los retratos no son solo retratos. Nos están diciendo cuáles son las consecuencias de lo que está sucediendo en nuestras ciudades”.

Las armas de fuego en 2020 se convirtieron en la causa número uno de muerte en niños y adolescentes menores de 18 años —tanto por suicidios como por agresiones— y una nueva investigación sobre la crisis de salud pública del Instituto Blavatnik de la Escuela de Medicina de Harvard muestra cómo esas pérdidas se extienden a través de familias y vecindarios, con costos económicos y psicológicos significativos.

El 25 de junio, Vivek Murthy, cirujano general de Estados Unidos, declaró a la violencia armada como una crisis de salud pública, remarcando: “Cada día que pasa perdemos más niños por la violencia armada. Cuantos más niños presencian episodios de violencia armada, más niños que son heridos por disparos y sobreviven están lidiando con impactos físicos y mentales de por vida”.

Philadelphia ha registrado más de 9,000 tiroteos fatales y no fatales desde 2020, con aproximadamente el 80% de las víctimas identificadas como negras no hispanas, según el controlador de la ciudad. Entre los heridos o muertos, aproximadamente el 60% tenía 30 años o menos.

Lomax ha sido una fuerza singular para que las estadísticas no se olviden. Desde 2018, cuando un joven amigo que estaba a punto de graduarse de la Universidad Estatal de Pennsylvania fue asesinada a tiros un domingo por la tarde en Philadelphia, Lomax se propuso apoyar la sanación entre aquellos que experimentan violencia.

Lanzó un programa en PhillyCAM, un canal de medios de acceso comunitario, para alentar a las personas a hablar sobre armas, opioides y el duelo. Organizó desfiles de moda con artistas locales y familias que se centraron en dar testimonio del sufrimiento. Se centró en el retrato, contactando a artistas locales para conmemorar las vidas, no las muertes, de los jóvenes de Philadelphia.

Comenzó a rastrear tiroteos en las redes sociales, en las noticias y a veces de boca en boca. En 2022, el Ayuntamiento abrió tres pisos para una notable exhibición de vidas perdidas, organizada por Lomax y creada por docenas de artistas.

Recientemente compartió los retratos en una cumbre patrocinada por la organización sin fines de lucro Brady: United Against Gun Violence y CeaseFirePA. La reunión ofreció orientación sobre la aplicación de regulaciones para prevenir compras de armas que impulsan el crimen y proporcionó datos sobre el tráfico de armas a través de las fronteras estatales.

Lomax sabía que el arte, exhibido a lo largo del escenario, ponía en evidencia la importancia del tema.

Miren estas caras, dijo ella. Estas personas eran prometedoras. ¿Qué pasó? ¿Qué se puede hacer?

Lomax, ahora de 40 años, dijo que las conversaciones que inicia tienen un propósito. Algunos cuadros los regala a las familias. Otros los guarda para futuras exhibiciones.

“Esto no es lo que me propuse hacer en la vida”, dijo ella. “Cuando estaba creciendo, pensé que sería enfermera. Pero supongo que de esta forma estoy cuidando a las personas”.

En lo que va del año, Philadelphia ha visto una disminución en el número de asesinatos, según una base de datos en línea de AH Datalytics, pero se encuentra entre las cinco ciudades principales en conteo de asesinatos. El año pasado, los investigadores de Harvard establecieron que las comunidades y familias quedan vulnerables por las lesiones con armas de fuego.

There are two rows of colorfully painted portraits. The top row has four paintings and the bottom row has five.
Retratos de Zarinah Lomax pintados por encargo. Cada persona “no es un número. Este es el hijo de alguien. La hija de alguien que estaba trabajando por algo”, dijo Lomax. “Los retratos no son sólo retratos. Nos están diciendo cuáles son las consecuencias de lo que está sucediendo en nuestras ciudades”.(Christine Spolar for KFF Health News)

El estudio de 2023 dirigido por Zirui Song, profesor asociado de política de atención médica en Harvard, examinó datos relacionados con recién nacidos hasta los 19 años. La investigación documentó un costo económico “masivo”, con un aumento promedio de $35,000 en el gasto en atención médica para los sobrevivientes en el año posterior a un tiroteo, y desafíos de salud mental que alteran la vida.

Los sobrevivientes de tiroteos y sus cuidadores, ya sea lidiando con lesiones físicas o miedo generalizado, a menudo luchan con “lesiones invisibles y duraderas, incluidos trastornos psicológicos y de uso de sustancias”, según Song, quien también es internista general en el Hospital General de Massachusetts.

Su estudio encontró que los padres de niños heridos experimentaron un aumento del 30% en trastornos psiquiátricos en comparación con los padres cuyos hijos no sufrieron heridas de bala.

Desiree Norwood, quien pinta con acrílicos, ha estado ayudando a Lomax desde 2021. Como a todos los artistas, Lomax le paga. Ha completado unos 30 retratos, siempre después de sentarse con la familia de la víctima. “Obtengo una historia de fondo para poder incorporarla en el retrato”, dijo. “A veces lloramos. A veces rezamos. A veces tratamos de animarnos mutuamente. Es difícil de hacer”.

“Espero que un día no tenga que pintar otro retrato”, dijo Norwood, madre de cinco hijos. “La idea de que Zarinah haya tenido tantas exhibiciones, con numerosas personas que han muerto, es aterradora y desgarradora”.

Mike Doughty, un artista digital autodidacta, fue uno de los que querían ayudar a “honrar y ofrecer una mejor mirada de quiénes eran estas personas”. Doughty, un empleado de la ciudad que trabaja en un juzgado, puede ser mejor conocido Philadelphia por una serie de murales en los que ha agrupado a famosos nacidos en la ciudad como Will Smith, Grace Kelly y Kevin Hart.

Ha producido unos 150 retratos en su iPad y laptop, trabajando con el grupo sin fines de lucro de Lomax, The Apologues, para ponerle rostro a una frase, incrustada en una escena, que transmite el potencial perdido de la juventud.

“Al principio fue difícil de hacer,” dijo Doughty, quien trabaja a partir de fotografías familiares. “Miro y pienso: Son niños. Solo niños”.

Una vez, recibió un mensaje de texto de Lomax buscando un retrato de un rapero que reconoció de espectáculos de arte y música. Otro día, abrió un correo electrónico y encontró una foto de un hombre que conocía de la escuela secundaria. En mayo, Doughty compartió en Instagram su proceso de trabajo para un retrato de Derrick Gant, un rapero con el nombre artístico Phat Geez, que fue asesinado a tiros en marzo.

El asesinato ocurrió unas semanas después que el rapero lanzara “No Gunzone”, un video musical que hace referencia a una cuenta de Instagram que promueve esfuerzos contra la violencia en la ciudad.

Doughty, de 33 años, que creció en la sección Nicetown del norte de Philadelphia, señaló irónicamente: “No era tan agradable”. Las exhibiciones de Lomax, dijo, permiten a las familias, incluso a los vecindarios, procesar el dolor y el sufrimiento.

“Fui a la última y una madre se acercó y dijo, ‘¿Dibujaste el retrato de mi hijo?’ Simplemente cayó en mis brazos, llorando. Fue un momento tan emotivo”, contó. “Y un recordatorio de por qué hacemos lo que hacemos”.

These Vibrant, Bigger-Than-Life Portraits Turn Gun Death Statistics Into Indelible Stories

PHILADELPHIA — Zarinah Lomax is an uncommon documentarian of our times. She has designed dresses from yellow crime-scene tape and styled jackets with hand-painted demands like “Don’t Shoot” in purple, black, and gold script. Every few months, she hauls dozens of portraits of Philadelphians — vibrant, bold, bigger-than-life faces — to pop-up galleries to raise an alarm about gun violence in her hometown and America.

In a storage unit, Lomax has a thousand canvasses, she estimates, mostly of young people who died from gunfire, and others of the mothers, sisters, friends, and mourners left to ask why.

“The purpose is not to make people cry,” said Lomax, a Philadelphia native who has traveled to New York, Atlanta, and Miami to collaborate on similar exhibitions on trauma. “It is for families and for people who have gone through this to know that they are not forgotten.”

Each person “is not a number. This is somebody’s child. Somebody’s son, somebody’s daughter who was working toward something,” she said. “The portraits are not just portraits. They are telling us what the consequences are for what’s happening in our cities.”

Firearms in 2020 became the No. 1 cause of death for children and teens under 18 — from both suicides and assaults — and fresh research on the public health crisis from Harvard Medical School’s Blavatnik Institute show how those losses ripple through families and neighborhoods with significant economic and psychological costs.

On June 25, U.S. Surgeon General Vivek Murthy declared gun violence a public health crisis, noting: “Every day that passes we lose more kids to gun violence. The more children who are witnessing episodes of gun violence, the more children who are shot and survive that are dealing with a lifetime of physical and mental health impacts.”

Philadelphia has recorded more than 9,000 fatal and nonfatal shootings since 2020, with about 80% of the victims identified as Black, according to the city controller. Among those injured or dead, about 60% were age 30 or younger.

Lomax has been a singular, and perhaps unlikely, force in making the statistics unforgettable. Since 2018, when a young friend poised to graduate from Penn State University was shot to death on a Sunday afternoon in Philadelphia, Lomax has set out to support healing among those who experience violence.

She launched a show on PhillyCAM, a community access media channel, to encourage people to talk about guns and opioids and grief. She organized fashion shows with local artists and families that focused on bearing witness to distress. She seized on portraiture, reaching out to local artists to memorialize the lives, not the deaths, of Philadelphia’s young. She began tracking shootings on social media, in news accounts, and sometimes by word of mouth. In 2022, City Hall opened three floors to a remarkable exhibition of lost lives, organized by Lomax and created by dozens of artists.

She recently shared the portraits at a summit sponsored by the nonprofit Brady: United Against Gun Violence and CeaseFirePA. The meeting offered guidance on enforcing regulations to prevent straw gun purchases that propel crime and provided data on weapon trafficking across state lines. Lomax knew the art, displayed along the stage, brought home the stakes.

Look at these faces, she said. These people had promise. What happened? What can be done?

There are two rows of colorfully painted portraits. The top row has four paintings and the bottom row has five.
Painted portraits commissioned by Zarinah Lomax. Each person “is not a number. This is somebody’s child. Somebody’s son, somebody’s daughter who was working toward something,” Lomax says. “The portraits are not just portraits. They are telling us what the consequences are for what’s happening in our cities.” (Christine Spolar for KFF Health News)

Lomax, now 40, said the conversations she starts have purpose. Some paintings she gives to families. Others she stores for future exhibits.

“This is not what I set out to do in life,” she said. “When I was growing up, I thought I’d be a nurse. But I guess I am kind of nursing people this way.”

So far this year, Philadelphia has seen a drop in the number of murders, according to an online database by AH Datalytics, but ranks among the top five cities in murder count. Last year, the Harvard researchers established that communities and families are left vulnerable by gun injuries.

The 2023 study led by Zirui Song, an associate professor of health care policy at Harvard Medical School, examined data related to newborns through age 19. The research documented a “massive” economic toll, with health care spending increasing by an average of $35,000 for survivors in the year after a shooting, and life-altering mental health challenges.

Survivors of shootings and their caregivers, whether dealing with physical injuries or generalized fear, often struggle with “long-lasting, invisible injuries, including psychological and substance-use disorders,” according to Song, who is also a general internist at Massachusetts General Hospital. His study found that parents of injured children experienced a 30% increase in psychiatric disorders compared with parents whose children did not sustain gunshot injuries.

Desiree Norwood, who paints with acrylics, has been helping Lomax since 2021. Like all the artists, she’s paid by Lomax. She has completed about 30 portraits, always after sitting down with the subject’s family. “I get a backstory so I can incorporate that in the portrait,” she said. “Sometimes we cry. Sometimes we pray. Sometimes we try to uplift each other. It is hard to do.”

“I hope one day I would not have to paint another portrait,” said Norwood, a mother of five children. “The idea that Zarinah has had so many exhibits, with numerous people who have died, is scary and heartbreaking.”

Mike Doughty, a self-taught digital artist, was among those who wanted to help to “honor and to offer a better look at who these people were.” Doughty, a city employee who works at a courthouse, may be best known within Philadelphia for a series of fanciful murals in which he has grouped famous natives such as Will Smith, Grace Kelly, and Kevin Hart.

He has produced about 150 portraits on his iPad and laptop, working with Lomax’s nonprofit group, The Apologues, to best match a face with a phrase, embedded in the scene, that telegraphs the lost potential of youth.

“At the beginning it was hard to do,” said Doughty, who works from family photographs. “I look and I think: They are kids. Just kids.”

One time, he received a text from Lomax seeking a portrait of a rapper he recognized from art and music shows. Another day, he opened an email to find a photo of a man he knew from high school. In May, Doughty shared on Instagram his work process for a portrait of Derrick Gant, a rapper with the stage name Phat Geez, who was gunned down in March. The killing happened a few weeks after the rapper released “No Gunzone,” a music video referring to an Instagram account that promotes anti-violence efforts in the city.

Doughty, 33, who grew up in the Nicetown section of north Philadelphia, wryly noted: “It wasn’t so nice.” Lomax’s exhibitions, he said, allow families, even neighborhoods, to sort through sorrow and pain.

“I went to the last one and a mother came up and said, ‘Did you draw my child’s portrait?’ She just fell into my arms, crying. It was such a moment,” he said. “And a reminder on why we do what we do.”

Pandemic Stress, Gangs, and Utter Fear Fueled a Rise in Teen Shootings

Diego never imagined he’d carry a gun.

Not as a child, when shots were fired outside his Chicago-area home. Not at age 12, when one of his friends was gunned down.

Diego’s mind changed at 14, when he and his friends were getting ready to walk to midnight Mass for the feast of Our Lady of Guadalupe. But instead of hymns, Diego heard gunfire, and then screaming. A gang member shot two people, including one of Diego’s friends, who was hit nine times.

“My friend was bleeding out,” said Diego, who asked KHN not to use his last name to protect his safety and privacy. As his friend lay on the ground, “he was choking on his own blood.”

The attack left Diego’s friend paralyzed from the waist down. And it left Diego, one of a growing number of teens who witness gun violence, traumatized and afraid to go outside without a gun.

Research shows that adolescents exposed to gun violence are twice as likely as others to perpetrate a serious violent crime within two years, perpetuating a cycle that can be hard to interrupt.

Diego asked his friends for help finding a handgun and — in a country supersaturated with firearms — they had no trouble procuring one, which they gave him free.

“I felt safer with the gun,” said Diego, now 21. “I hoped I wouldn’t use it.”

For two years, Diego kept the gun only as a deterrent. When he finally pulled the trigger, it changed his life forever.

Disturbing Trends

The news media focuses heavily on mass shootings and the mental state of the people who commit them. But there is a far larger epidemic of gun violence — particularly among Black, Hispanic, and Native American youth — ensnaring some kids not even old enough to get a driver’s license.

Research shows that chronic exposure to trauma can change the way a child’s brain develops. Trauma also can play a central role in explaining why some young people look to guns for protection and wind up using them against their peers.

The number of children under 18 who killed someone with a firearm jumped from 836 in 2019 to 1,150 in 2020.

In New York City, the number of young people who killed someone with a gun more than doubled, rising from 48 juvenile offenders in 2019 to 124 in 2022, according to data from the city’s police department.

Youth gun violence increased more modestly in other cities; in many places, the number of teen gun homicides rose in 2020 but has since fallen closer to pre-pandemic levels.

Researchers who analyze crime statistics stress that teens are not driving the overall rise in gun violence, which has increased across all ages. In 2020, 7.5% of homicide arrests involved children under 18, a slightly smaller share than in previous years.

Local leaders have struggled with the best way to respond to teen shootings.

A handful of communities — including Pittsburgh; Fulton County, Georgia; and Prince George’s County, Maryland — have debated or implemented youth curfews to curb teen violence. What’s not in dispute: More people ages 1 to 19 die by gun violence than by any other cause.

A Lifetime of Limits

The devastating toll of gun violence shows up in emergency rooms every day.

At the UChicago Medicine trauma center, the number of gunshot wounds in children under 16 has doubled in the past six years, said Dr. Selwyn Rogers, the center’s founding director. The youngest victim was 2. “You hear the mother wail, or the brother say, ‘It’s not true,’” said Rogers, who works with local youth as the hospital’s executive vice president for community health engagement. “You have to be present in that moment, but then walk out the door and deal with it all over again.”

Dr. Selwyn Rogers sits on a chair in a hospital lobby. He wears a white doctor's coat and looks directly at the camera. The room is sunny and spacious.
Dr. Selwyn Rogers is the founding director of UChicago Medicine’s trauma center. In the past six years, the trauma center has seen the number of gunshot wounds in children under 16 double.(UChicago Medicine)

In recent years, the justice system has struggled to balance the need for public safety with compassion for kids, based on research that shows a young person’s brain doesn’t fully mature until age 25. Most young offenders “age out” of criminal or violent behavior around the same time, as they develop more self-control and long-range thinking skills.

Yet teens accused of shootings are often charged as adults, which means they face harsher punishments than kids charged as juveniles, said Josh Rovner, director of youth justice at the Sentencing Project, which advocates for justice system reform.

About 53,000 juveniles in 2019 were charged as adults, which can have serious health repercussions. These teens are more likely to be victimized while incarcerated, Rovner said, and to be arrested again after release.

Young people can spend much of their lives in a poverty-imposed lockdown, never venturing far beyond their neighborhoods, learning little about opportunities that exist in the wider world, Rogers said. Millions of American children — particularly Black, Hispanic, and Native American kids — live in environments plagued by poverty, violence, and drug use.

The covid-19 pandemic amplified all those problems, from unemployment to food and housing insecurity.

Although no one can say with certainty what spurred the surge in shootings in 2020, research has long linked hopelessness and lack of trust in police — which increased after the murder of George Floyd that year — to an increased risk of community violence. Gun sales soared 64% from 2019 to 2020, while many violence prevention programs shut down.

One of the most serious losses children faced during the pandemic was the closure of schools — institutions that might provide the only stabilizing force in their young lives — for a year or more in many places.

“The pandemic just turned up the fire under the pot,” said Elise White, deputy director of research at the nonprofit Center for Justice Innovation, which works with communities and justice systems. “Looking back, it’s easy to underplay now just how uncertain that time [during the pandemic] felt. The more that people feel uncertain, the more they feel there’s no safety around them, the more likely they are to carry weapons.”

Of course, most children who experience hardship never break the law. Multiple studies have found that most gun violence is perpetrated by a relatively small number of people.

The presence of even one supportive adult can protect children from becoming involved with crime, said Dr. Abdullah Pratt, a UChicago Medicine emergency physician who lost his brother to gun violence.

Pratt also lost four friends to gun violence during the pandemic. All four died in his emergency room; one was the son of a hospital nurse.

Although Pratt grew up in a part of Chicago where street gangs were common, he benefited from the support of loving parents and strong role models, such as teachers and football coaches. Pratt was also protected by his older brother, who looked out for him and made sure gangs left the future doctor alone.

“Everything I’ve been able to accomplish,” Pratt said, “is because someone helped me.”

Growing Up in a ‘War Zone’

Diego had no adults at home to help him feel safe.

His parents were often violent. Once, in a drunken rage, Diego’s father grabbed him by the leg and swung him around the room, Diego said, and his mother once threw a toaster at his father.

At age 12, Diego’s efforts to help the family pay overdue bills — by selling marijuana and stealing from unlocked cars and apartments — led his father to throw him out of the house.

At 13, Diego joined a gang made up of neighborhood kids. Gang members — who recounted similar stories about leaving the house to escape abuse — gave him food and a place to stay. “We were like a family,” Diego said. When the kids were hungry, and there was no food at home, “we’d go to a gas station together to steal some breakfast.”

Dr. Abdullah Pratt stands at a reception desk in a medical building. He wears a white doctor's coat and gently smiles at the camera.
Dr. Abdullah Pratt is a UChicago Medicine emergency physician who lost his brother to gun violence. Pratt says the presence of even one supportive adult can protect children from becoming involved with crime.(UChicago Medicine)

But Diego, who was smaller than most of the others, lived in fear. At 16, Diego weighed only 100 pounds. Bigger boys bullied and beat him up. And his successful hustle — selling stolen merchandise on the street for cash — got the attention of rival gang members, who threatened to rob him.

Children who experience chronic violence can develop a “war zone mentality,” becoming hypervigilant to threats, sometimes sensing danger where it doesn’t exist, said James Garbarino, an emeritus professor of psychology at Cornell University and Loyola University-Chicago. Kids who live with constant fear are more likely to look to firearms or gangs for protection. They can be triggered to take preemptive action — such as firing a gun without thinking — against a perceived threat.

“Their bodies are constantly ready for a fight,” said Gianna Tran, deputy executive director of the East Bay Asian Youth Center in Oakland, California, which works with young people living in poverty, trauma, and neglect.

Unlike mass shooters, who buy guns and ammunition because they’re intent on murder, most teen violence is not premeditated, Garbarino said.

In surveys, most young people who carry guns — including gang members — say they do so out of fear or to deter attacks, rather than perpetrate them. But fear of community violence, both from rivals and the police, can stoke an urban arms race, in which kids feel that only the foolish walk around without a weapon.

“Fundamentally, violence is a contagious disease,” said Dr. Gary Slutkin, founder of Cure Violence Global, which works to prevent community violence.

Although a small number of teens become hardened and remorseless, Pratt said, he sees far more shootings caused by “poor conflict resolution” and teenage impulsivity rather than a desire to kill.

Indeed, firearms and an immature teenage brain are a dangerous mix, Garbarino said. Alcohol and drugs can magnify the risk. When confronted with a potentially life-or-death situation, kids may act without thinking.

When Diego was 16, he was walking a girl to school and they were approached by three boys, including a gang member who, using obscene and threatening language, asked if Diego was also in a gang. Diego said he tried to walk past the boys, one of whom appeared to have a gun.

“I didn’t know how to fire a gun,” Diego said. “I just wanted them to get away.”

In news accounts of the shooting, witnesses said they heard five gunshots. “The only thing I remember is the sound of the shots,” Diego said. “Everything else was going in slow motion.”

Diego had shot two of the boys in the legs. The girl ran one way, and he ran another. Police arrested Diego at home a few hours later. He was tried as an adult, convicted of two counts of attempted homicide, and sentenced to 12 years.

A Second Chance

In the past two decades, the justice system has made major changes in the way it treats children.

Youth arrests for violent crime plummeted 67% from 2006 to 2020, and 40 states have made it harder to charge minors as adults. States also are adopting alternatives to incarceration, such as group homes that allow teens to remain in their communities, while providing treatment to help them change their behavior.

Because Diego was 17 when he was sentenced, he was sent to a juvenile facility, where he received therapy for the first time.

Diego finished high school while behind bars and went on to earn an associate’s degree from a community college. He and other young inmates went on field trips to theaters and the aquarium — places he had never been. The detention center director asked Diego to accompany her to events about juvenile justice reform, where he was invited to tell his story.

Those were eye-opening experiences for Diego, who realized he had seen very little of Chicago, even though he had spent his life there.

“Growing up, the only thing you see is your community,” said Diego, who was released after four years in detention, when the governor commuted his sentence. “You assume that is what the whole world is like.”

KHN data editor Holly K. Hacker and researcher Megan Kalata contributed to this report.

Patient Mistrust and Poor Access Hamper Federal Efforts to Overhaul Family Planning

JACKSON, Miss. — Two years ago, after an emergency cesarean section at a Mississippi hospital, Sherika Trader was denied a tubal ligation. Trader, now 33, was told that to have her tubes tied, she had to have a second child or a husband’s permission, even though she wasn’t married.

Jasymin Shepherd had heavy menstrual cycles because of a birth control pill prescribed after the birth of her son 13 years ago. The symptoms continued even after she stopped taking the medication. Last year, a doctor in Jackson responded by offering Shepherd, 33, a hysterectomy, which she didn’t want.

The experiences left the women feeling as though providers acted like “robots,” or, worse, they felt stereotyped. Black women already face major barriers to accessing health care, including provider shortages and racial bias rooted in the medical system.

But with contraceptive care, which deals with deeply personal patient preferences, they must also contend with providers who dismiss their concerns. Decisions about whether — or when — to have a baby and how to prevent pregnancy are not as standardized as care for other conditions. Yet providers hand out prescriptions or recommendations while disregarding a patient’s specific circumstances, Shepherd said.

Late last year, the White House made new recommendations for a federal program that provides funding for free contraceptives, wellness exams, and certain cancer screenings. Health officials want to regain the trust of patients like Trader and Shepherd, who feel as though their doctors don’t always listen to them. The goal of the Title X program, which distributes grants to states and other groups for family planning, is to let patients dictate the care they want, said Jessica Marcella, who is the deputy assistant secretary for population affairs at the U.S. Department of Health and Human Services and oversees the Title X program.

“Our belief, and that of the family planning field, is that it is essential that you respect the interests, needs, and values of a client,” she said. Providers shouldn’t force patients to take a birth control method because it’s more effective, she said, or deny them a particular method because they think a patient might want more kids.

“What we don’t want is a provider to create trauma or do unintentional harm,” Marcella said.

In Mississippi, efforts to implement that approach have started with a change in who gets to administer the Title X funds, taking that responsibility from the state and giving it to a four-year-old Jackson-based nonprofit named Converge. The Biden administration’s decision this year to give Converge the $4.5 million grant marks the first time in four decades that Mississippi’s health department hasn’t won the federal family-planning grant.

Converge doesn’t offer family planning services. Instead, the group provides funding to a network of clinics statewide, organizes provider training, helps clinics navigate technology challenges, and keeps them stocked with supplies. For example, when a provider was having trouble printing out a survey that patients took about their contraception preferences, Converge co-founder and co-director Jamie Bardwell shipped the clinic a wireless printer.

A photo shows Jamie Bardwell and Danielle Lampton posing for a portrait together.
Jamie Bardwell (left) and Danielle Lampton co-founded Converge, a nonprofit that administers federal family-planning funds in Mississippi through a grant it won earlier this year.(Nico Hopkins)

But across the South, the attempt to change the culture of family planning care faces old and new obstacles. Some are deeply rooted in the medical system, such as the bias long faced by Black women and other women of color. In addition, contraception care is limited in the conservative South, and the Supreme Court’s June decision to overturn Roe v. Wade has led to the curtailing of abortion access across much of the region.

Black women often feel disrespected and dismissed by their providers, said Kelsey Holt, an associate professor of family and community medicine at the University of California-San Francisco. She co-authored a 2022 study in the journal Contraception in which dozens of Black women in Mississippi were interviewed about their experiences getting contraceptives.

Women told researchers that they struggled to get appointments, faced long wait times, and had to put up with condescending behavior. Many of the women said providers didn’t inform them about alternatives to the contraceptive Depo-Provera, a progestin shot administered once every three months, despite the known side effects and the availability of other, more appropriate options.

Trying to undo decades of such damage — and overhaul how providers deliver family planning care — became even more difficult after the Supreme Court decision and the closure of abortion clinics across the South. Suddenly, women in Mississippi, Alabama, and about a dozen other states could no longer get abortions.

“A major service has been cut off,” said Usha Ranji, associate director for women’s health policy at KFF. Title X funds cannot be used — and have never been used — to pay for abortions. But, she said, clinics can no longer present abortion as an option, hampering their ability to provide comprehensive counseling, a key requirement of the Title X program.

Many Mississippians can’t afford to travel across state lines to terminate an unwanted pregnancy. In 2020, 84% of Title X clients in the U.S. had incomes at or below 200% of the federal poverty level, and 39% were uninsured. Even women in Mississippi with the means to travel will face hurdles in nearby states, like Georgia and Florida, where abortion is not fully banned but access has been scaled back.

Even before the Supreme Court decision, access to family planning care in Mississippi came with hurdles and judgment.

In 2017, when Mia, who didn’t want her last name used for fear of legal and social repercussions, became pregnant for the second time, she called the local health department in Hattiesburg for advice on obtaining an abortion. She had a daughter and wasn’t financially or mentally prepared to have another child. The health department contact sent Mia to a faith-based, anti-abortion center.

“I felt judged,” Mia said about the call. Eventually, she terminated the pregnancy in Jackson, about 90 miles away, at the state’s sole abortion clinic, which closed in July. “Ultimately, I did what was best for me,” said Mia, who went on to have a son several years after the abortion.

The loss of abortion care in Mississippi puts more pressure on family planning providers to win the trust of their patients, said Danielle Lampton, who also co-founded Converge. Patient-centered care is the “bedrock of what we do,” Lampton said.

Both Trader and Shepherd serve on Converge’s patient experience council and receive occasional stipends for providing their perspectives to the nonprofit.

Providers shouldn’t force or pressure low-income patients to use long-term contraception, such as an intrauterine device, to safeguard against pregnancy, said Dr. Christine Dehlendorf, a family physician and researcher at UCSF, who is advising Converge.

A photo shows Wyconda Thomas indoors, posing for a photo.
Wyconda Thomas, a family nurse practitioner, opened a clinic four years ago in Gunnison, Mississippi, a town of only a few hundred people. Thomas lets patients’ life circumstances, their history, and their needs determine what type of contraception she prescribes.(Haleigh Brooke Thomas McGee)

Pressuring Black women to use IUDs, implants, and other long-term contraception is reminiscent of a history in which Black women were sterilized against their consent, she said. Even today, studies show that providers are more likely to pressure women of color to limit the size of their families and recommend IUDs to them. These women also have a harder time getting a provider to remove the devices and getting insurance to cover the removal cost, Dehlendorf said.

Too often, Wyconda Thomas, a family nurse practitioner near the Arkansas border, meets patients who are skeptical of birth control because of a bad experience. Many of her patients continued Depo-Provera shots even after they gained an unsafe amount of weight — a known side effect — because they weren’t offered other options.

Even if patients come in for another reason, Thomas talks to them about family planning “every chance I get,” she said. Four years ago, Thomas opened the Healthy Living Family Medical Center in Gunnison, a 300-person town that is 80% Black. The clinic receives Title X funds through Converge. Still, Thomas doesn’t force contraception on patients — she respects their decision to forgo a pill, patch, or implant.

But Title X funds help Thomas stock a variety of contraception methods so patients don’t have to worry about driving to a separate pharmacy.

“My job for them is to get them to understand that there are more methods and there’s no method at all,” Thomas said. “And that’s a whole visit by itself.”