The day after Trump’s inauguration, South Carolina GOP Gov. Henry McMaster asked federal officials to approve a work requirement plan. Ohio Republican Gov. Mike DeWine plans to soon follow suit. Republicans in Congress are eyeing Medicaid work requirements as they seek to slash billions from the federal budget.

But, just as a second Trump administration reignites interest in work requirements, Georgia is proposing to scale back key parts of the nation’s only active program. And Arkansas announced an effort to revive — with fundamental changes — a program that ended after a legal judgment in 2019.

The Georgia and Arkansas proposals, from the only two states to have implemented Medicaid work requirements, reveal the disconnect between rhetoric behind such programs and the realities of running them, said consumer advocates and health policy researchers.

“They recognize that what they did the first time didn’t work,” said Ben Sommers, a Harvard professor and a former health official in the Biden and Obama administrations. “It should be a signal to federal policymakers: Don’t point to Georgia and Arkansas and say, ‘Let’s do that.’”

More than a dozen states had Medicaid work requirement programs approved during Trump’s first administration.

After an expensive and bumpy rollout, Georgia in January posted a draft renewal plan for its Georgia Pathways to Coverage program. The plan removes the requirement to document work every month and to pay premiums. Those key elements — which supporters have argued promote employment and personal responsibility — were never implemented, the state said.

Enrollees would still have to meet the work requirement when they first apply and when they renew each year. The draft plan also expands the group of people who can opt out of work reporting to include parents of children under age 6. A public comment period on the plan is open through Feb. 20.

Arkansas’ latest request to federal officials doesn’t require enrollees to report their work hours. Instead, it proposes checking whether people are working, caregiving, or fulfilling other qualifying activities by using data, which could include income, job history, educational status, whether a child lives at home, and other criteria, said Gavin Lesnick, a spokesperson for the state’s Medicaid agency.

People deemed “not on track towards meeting their personal health and economic goals” won’t be disenrolled but can participate in a “success coaching” program to maintain coverage, according to the state’s proposal. A public comment period on Arkansas’ program runs through March 3.

‘Fundamentally Flawed’

More than 90% of U.S. adults eligible for Medicaid expansion are already working or could be exempt from requirements, according to KFF. Still, several states are quickly moving to restart Medicaid work requirements.

Besides the three states of Arkansas, Ohio, and South Carolina, Iowa and South Dakota are considering similar proposals. Lawmakers in Montana are weighing them as they debate renewing the state’s Medicaid expansion.

This week, House Republicans floated a budget proposal to cut $880 billion from the Energy and Commerce Committee, which oversees Medicaid, the state-federal health insurance program for people with low incomes or disabilities. Before the release of that plan, Speaker Mike Johnson said Republicans were discussing changes to Medicaid that include imposing work requirements.

Supporters of such requirements say Medicaid should be reserved for people who are working.

Right now, it “disincentivizes many low-income families from earning additional income” because they would lose health coverage if they make too much money, said South Carolina Gov. McMaster in his January letter to federal officials. He has argued that a work-reporting requirement is “fiscally responsible” and “will incentivize employment.”

There is no evidence showing such programs improve economic outcomes for people; the requirements don’t help people find jobs, but not having health insurance can keep them from working, health policy researchers say.

The goal of Ohio’s plan is to focus “resources and efforts on those who are engaged with their health choices and independence,” said the state. The plan doesn’t require most individuals to regularly “report activities, fill out forms, or take any action” beyond what is generally required for Medicaid enrollment. Ohio estimates that more than 61,000 people, or 8% of enrollees subject to its measure, would lose Medicaid eligibility in the first year.

Consumer advocates, health policy analysts, and researchers said the scaling back seen in recent work requirement proposals speaks to the challenges of mandating them for public benefits — and could serve as a cautionary tale for Republicans in Washington, D.C., and across the country. The programs can eliminate people from the Medicaid rolls or suppress enrollment, while adding costly layers of bureaucracy, they said.

“As a matter of health policy, work-reporting requirements in Medicaid are fundamentally flawed,” said Leo Cuello, a researcher at the Georgetown Center for Children and Families.

Lessons Learned?

Arkansas got its initial program off the ground in 2018 before a federal judge said it was illegal. Unlike Georgia, the state had already expanded Medicaid. That work-reporting requirement led to more than 18,000 people losing coverage, in part because enrollees were unaware or confused about how to report they were working.

In his ruling that ended the program, Judge James Boasberg said its approval was “arbitrary and capricious” because it failed to address a core goal of Medicaid: “the provision of medical coverage to the needy.”

Arkansas’ latest proposal tries to address a potential legal challenge by suspending, rather than terminating, health coverage through the end of the calendar year for people who don’t meet requirements.

“We have worked to design this amendment taking into account lessons learned from previous work requirements,” said Arkansas Medicaid Director Janet Mann at a press conference in late January announcing the new proposal.

But the requirements are “subjective,” and the difference between suspension and termination isn’t meaningful, said Camille Richoux, health policy director of Arkansas Advocates for Children and Families.

“The impact is the same: You can’t go to the doctor,” she said. “You can’t get your prescriptions filled.”

In Georgia, the Pathways program, launched in 2023, has offered coverage to a small portion of those who would qualify for Medicaid if the state had fully expanded it to all low-income adults, as 40 others have done. With the proposed changes, the state estimates enrollment in Pathways would grow to as many as 30,000 people in the final year of the pilot. The state currently estimates at least 246,000 would become eligible for Medicaid under a full expansion.

About 6,500 people were enrolled in Pathways as of late January, said Grant Thomas, the state’s deputy Medicaid commissioner, in a legislative hearing. According to state officials, the program has cost more than $57 million in state and federal funds through December, with most of that money going toward program administration, not benefits.

“Pathways is doing what it is designed to do: increase access to affordable health care coverage while lowering the uninsured rate across Georgia,” said Russel Carlson, who oversees the state’s Medicaid program as commissioner of the Department of Community Health. The changes to Pathways are an attempt to “improve the member experience” while finding ways “to make government more efficient and accessible,” he added.

Pathways requires that enrollees regularly submit documentation to prove they are working, but the program doesn’t include meaningful measures to help people find work, critics said. People who could be eligible for Pathways have said the whole process is time-consuming due to lengthy questionnaires, a glitchy system for uploading documents, and confusing technical language on the website, according to those working with potential enrollees.

“There’s stuff that sounds good on paper, but when you go to implement it in real life, it’s costly and burdensome,” said Leah Chan, director of health justice at the Georgia Budget and Policy Institute.

So far, Pathways has cost state and federal taxpayers nearly $9,000 per enrollee, largely back-end costs to run the program. States that have expanded Medicaid spent about $6,500 per enrollee in that group in 2021, according to KFF researchers.

Georgia GOP Gov. Brian Kemp has said he’s committed to his signature health program, but some Republican state lawmakers have shown an openness to consider full expansion.

A group of Democratic senators cited KFF Health News’ reporting last year when they asked the federal government’s top watchdog to investigate Pathways spending.

Even with the proposed changes, some people, including those who work in the informal or gig economy, may not have official records and may be locked out of health coverage, said Laura Colbert, executive director of Georgians for a Healthy Future, a nonprofit consumer health advocacy organization. People caring for older children or aging relatives, older adults who struggle to find work, and those with medical conditions that prevent them from working still wouldn’t qualify for health coverage, she said.

“The Pathways program just doesn’t reflect the reality of how people are working,” Colbert said. “Pathways is a program that has clearly been developed by people who have had salaried jobs with predictable incomes.”

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Tres años después, terminó internado en un hospital luego de expresar pensamientos suicidas.

Después de más de una década pasando por centros de detención de menores, hogares temporales y prisiones estatales, Valdez ahora se da cuenta que haber recibido tratamiento para sus problemas de salud mental le habría hecho la vida mucho más fácil.

“No es hasta que te ponen en situaciones cotidianas y respondes de forma adversa y desadaptada”, dijo, “que te das cuenta de que lo que pasaste tuvo un efecto en ti”.

“Estaba luchando con muchos problemas mentales”, dijo Valdez, que ahora tiene 27 años.

Durante años, personas como Valdez a menudo han tenido que valerse por sí mismas cuando buscaban servicios de atención médica después de salir de la cárcel, prisión u otros centros carcelarios.

A pesar de la alta tasa de problemas de salud mental y trastornos por adicciones en esta población, la mayor parte de las veces regresan a sus comunidades sin cobertura, lo que aumenta sus posibilidades de morir o sufrir una recaída que los lleve de nuevo a la cárcel.

Una nueva ley federal tiene como objetivo conectar mejor a los menores y adultos jóvenes encarcelados que son elegibles para Medicaid o el Programa de Seguro de Salud Infantil (CHIP) con los servicios antes de su liberación.

La meta es ayudar a prevenir que desarrollen una crisis de salud o reincidan mientras están en el proceso para reintegrarse a la sociedad.

“Esto podría cambiar la trayectoria de sus vidas”, dijo Alycia Castillo, directora asociada de políticas del Texas Civil Rights Project. Agregó que, sin ese tratamiento, muchos jóvenes que salen del sistema tienen dificultades para reintegrarse a las escuelas o trabajos, no respetan normas, y terminan entrando y saliendo de los centros de detención.

Históricamente, Medicaid ha tenido prohibido pagar los servicios de salud de las personas presas. Por eso, las cárceles, prisiones y centros de detención de todo el país tienen sus propios sistemas de prestación de atención médica, generalmente financiados con presupuestos estatales y locales, no integrados con un sistema de salud público o privado.

La nueva ley es el primer cambio a esa prohibición desde la creación de la Ley de Medicare y Medicaid en 1965, y es parte de un proyecto de ley de gastos firmado por el presidente Joe Biden en 2022. Entró en vigencia el 1 de enero de este año y exige que todos los estados proporcionen exámenes médicos y dentales a los jóvenes elegibles para Medicaid y CHIP, treinta días antes o inmediatamente después de que salgan de un centro penitenciario. Los jóvenes deben seguir recibiendo servicios de manejo de casos durante 30 días después de su liberación.

Más del 60% de los jóvenes presos son elegibles para Medicaid o CHIP, según un informe de septiembre de 2024 del center for Health Care Strategies. La nueva ley se aplica a menores y adultos jóvenes de hasta 21 años, o 26 para aquellos que, como Valdez, estuvieron en hogares temporales.

Sin embargo, poner la ley en práctica requerirá cambios significativos en la forma en que los miles de centros penitenciarios del país ofrecen atención médica a las personas que regresan a las comunidades, y podrían pasar meses o incluso años hasta que las instalaciones cumplan plenamente.

“No se trata de prender y apagar”, dijo Vikki Wachino, fundadora y directora ejecutiva del Health and Reentry Project, que ha estado ayudando a los estados a implementar la ley. “Estos puntos de conexión nunca se han hecho antes”, dijo Wachino, ex administradora adjunta de los Centros de Servicios de Medicare y Medicaid (CMS).

Los CMS no han dicho como planean hacer cumplir la ley.

Tampoco está claro si la administración Trump obligará a los estados a implementarla. En 2018, el presidente Donald Trump firmó una ley que obligaba a los estados a inscribir a los jóvenes elegibles en Medicaid cuando salieran de prisión, para que no experimentaran una brecha en la cobertura de salud.

La ley que firmó Biden se basó en ese cambio al exigir que las instalaciones brinden exámenes y servicios de salud a esos jóvenes, así como a los elegibles para CHIP.

Aunque la cantidad de jóvenes presos en el país ha disminuido significativamente en las últimas dos décadas, más de 64.000 menores y adultos jóvenes de 20 años o menos están en prisiones estatales, cárceles locales y tribales e instalaciones para jóvenes, según estimaciones proporcionadas a KFF Health News por la Prison Policy Initiative, una organización sin fines de lucro que investiga el daño del encarcelamiento masivo.

Una “parte desatendida del sistema de salud”

La Oficina Federal de Estadísticas de Justicia estima que aproximadamente una quinta parte de la población carcelaria del país pasó tiempo en hogares temporales. Los jóvenes negros no hispanos tienen casi cinco veces más probabilidades que los jóvenes blancos no hispanos de ser colocados en instalaciones para menores, según The Sentencing Project, una organización sin fines de lucro que aboga por la reducción de las poblaciones en prisiones y cárceles.

Estudios muestran que los menores que reciben tratamiento para sus necesidades de salud después de la liberación tienen menos probabilidades de volver a ingresar al sistema de justicia juvenil.

“A menudo, lo que lleva a los menores y a las familias a estos sistemas son las necesidades no satisfechas”, dijo Joseph Ribsam, director de políticas de bienestar infantil y justicia juvenil en la Annie E. Casey Foundation, y ex funcionario estatal de servicios para jóvenes. “Tiene más sentido que los niños tengan su atención de salud vinculada a un sistema de atención médica, no a un sistema carcelario”.

Sin embargo, la nueva requerirá muchos cambios. Las instalaciones y agencias primero deben crear sistemas para identificar a los jóvenes elegibles, encontrar proveedores de atención médica que acepten Medicaid, facturar al gobierno federal, y compartir registros y datos, según funcionarios estatales de Medicaid y oficiales correccionales, así como investigadores que siguen los cambios.

En enero, el gobierno federal comenzó a distribuir alrededor de $100 millones en subvenciones para ayudar a los estados a implementar la ley, incluso para actualizar la tecnología.

Algunos funcionarios estatales están señalando posibles complicaciones.

Por ejemplo, en Georgia, el sistema de justicia juvenil estatal no tiene una forma de facturar a Medicaid, dijo Michelle Staples-Horne, directora médica del Departamento de Justicia Juvenil del estado.

En Dakota del Sur, suspender la cobertura de Medicaid o CHIP de una persona mientras está en prisión en lugar de simplemente terminarla es un desafío, dijo Kellie Wasko, secretaria del sistema correcional del estado, en un seminario por internet en noviembre sobre la nueva ley. Ese es un cambio técnico que es difícil de poner en práctica, apuntó.

Los funcionarios estatales de Medicaid también reconocieron que no pueden obligar a los funcionarios locales a cumplir.

“Podemos construir un campo de béisbol, pero no podemos hacer que la gente venga a jugar a la pelota”, dijo Patrick Beatty, subdirector y director de políticas del Departamento de Medicaid de Ohio.

Los estados deberían ver la ley como una forma de abordar una “parte descuidada del sistema de salud”, dijo Wachino, la ex funcionaria de los CMS. Al mejorar la atención para las personas que salen de prisión, los estados pueden gastar menos dinero en atención de emergencia y en los correccionales, dijo.

“Cualquier estado que esté demorando el proceso está perdiendo una oportunidad”, agregó.

“Nuestro sistema está empeorando a la gente”

El Departamento de Servicios Familiares de Texas tomó la custodia de Valdez cuando tenía 8 años porque el historial de convulsiones de su madre la hacía incapaz de cuidarlo, según los registros. Valdez dijo que se escapó de hogares temporales por los abusos o las negligencias.

Unos años más tarde, ingresó al sistema de justicia juvenil de Texas por primera vez.

Los funcionarios allí no hicieron comentarios sobre su caso. Pero Valdez dijo que mientras lo trasladaban de una instalación a otra, sus medicamentos antidepresivos y antipsicóticos se suspendían abruptamente y sus registros rara vez se transferían. Nunca recibió terapia u otro apoyo para hacer frente a sus experiencias de la infancia, que incluyeron el abuso sexual, según sus registros médicos.

Valdez dijo que su salud mental se deterioró mientras estuvo detenido, porque estuvo aislado durante largos períodos de tiempo, por el trato brusco de los funcionarios, los temores de violencia por parte de otros niños y la falta de atención médica adecuada.

“Me sentía como un animal”, dijo Valdez.

En agosto, el Departamento de Justicia de los Estados Unidos publicó un informe que afirma que el estado expone a los niños detenidos a fuerza excesiva y a aislamientos prolongados, no los protege del abuso sexual y no brinda servicios de salud mental adecuados.

El Departamento de Justicia Juvenil de Texas ha dicho que está tomando medidas para mejorar la seguridad en sus instalaciones.

En 2024, el 100% de los menores en las instalaciones del Departamento de Justicia Juvenil de Texas necesitaron tratamiento especializado, incluso por problemas de salud mental, adicciones o comportamiento violento, según la entidad.

Con demasiada frecuencia, “nuestro sistema está empeorando a las personas y no les ofrece la continuidad de la atención que necesitan”, dijo Elizabeth Henneke, fundadora y directora ejecutiva de Lone Star Justice Alliance, un bufete de abogados sin fines de lucro en Texas.

Valdez dijo que el trauma de la custodia estatal ensombreció su vida después de su liberación. Se enojaba y se volvía violento con facilidad y a menudo sentía desesperación. Fue encarcelado nuevamente antes de sufrir una crisis que lo llevó a ser hospitalizado en 2022. Le diagnosticaron trastorno de estrés postraumático y le recetaron medicamentos, según su historial médico.

“Me ayudó a entender que no me estaba volviendo loco y que había una razón”, dijo. “Desde entonces, no voy a decir que ha sido fácil, pero definitivamente ha sido un poco más manejable”.

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Three years later, he landed in an inpatient hospital after expressing suicidal thoughts.

After more than a decade cycling through juvenile detention, foster care placements, and state prisons, Valdez realizes now that treatment for his mental health conditions would have made life on his own much easier.

“It’s not until you’re put in, like, everyday situations and you respond adversely and maladaptive,” he said, “you kind of realize that what you went through had an effect on you.”

“I was struggling with a lot of mental stuff,” said Valdez, now 27.

For years, people like Valdez have often been left to fend for themselves when seeking health care services after their release from jail, prison, or other carceral facilities. Despite this population’s high rate of mental health problems and substance use disorders, they often return to their communities with no coverage, which increases their chances of dying or suffering a lapse that sends them back behind bars.

A new federal law aims to better connect incarcerated children and young adults who are eligible for Medicaid or the Children’s Health Insurance Program to services before their release. The goal is to help prevent them from developing a health crisis or reoffending as they work to reestablish themselves.

“This could change the trajectory of their lives,” said Alycia Castillo, associate director of policy for the Texas Civil Rights Project. Without that treatment, she said, many young people leaving custody struggle to reintegrate into schools or jobs, become dysregulated, and end up cycling in and out of detention facilities.

Medicaid has historically been prohibited from paying for health services for incarcerated people. So jails, prisons, and detention centers across the country have their own systems for providing health care, often funded by state and local budgets and not integrated with a public or private health system.

The new law is the first change to that prohibition since the Medicare and Medicaid Act’s inception in 1965, and it came in a spending bill signed by President Joe Biden in 2022. It took effect Jan. 1 this year, and requires all states to provide medical and dental screenings to Medicaid- and CHIP-eligible youths 30 days before or immediately after they leave a correctional facility. Youths must continue to receive case management services for 30 days after their release.

More than 60% of young people who are incarcerated are eligible for Medicaid or CHIP, according to a September 2024 report from the Center for Health Care Strategies. The new law applies to children and young adults up to age 21, or 26 for those who, like Valdez, were in foster care.

Putting the law into practice, however, will require significant changes to how the country’s thousands of correctional facilities provide health care to people returning to communities, and it could take months or even years for the facilities to be fully in compliance.

“It’s not going to be flipping a switch,” said Vikki Wachino, founder and executive director of the Health and Reentry Project, which has been helping states implement the law. “These connection points have never been made before,” said Wachino, a former deputy administrator of the Centers for Medicare & Medicaid Services.

The federal CMS under the Biden administration did not respond to a question about how the agency planned to enforce the law.

It’s also unclear whether the Trump administration will force states to comply. In 2018, President Donald Trump signed legislation requiring states to enroll eligible youths in Medicaid when they leave incarceration, so they don’t experience a gap in health coverage. The law Biden signed built on that change by requiring facilities to provide health screenings and services to those youths, as well as ones eligible for CHIP.

Even though the number of juveniles incarcerated in the U.S. has dropped significantly over the past two decades, more than 64,000 children and young adults 20 and younger are incarcerated in state prisons, local and tribal jails, and juvenile facilities, according to estimates provided to KFF Health News by the Prison Policy Initiative, a nonprofit research organization that studies the harm of mass incarceration.

A ‘Neglected Part of the Health System’

The federal Bureau of Justice Statistics estimates that about a fifth of the country’s prison population spent time in foster care. Black youths are nearly five times as likely as white youths to be placed in juvenile facilities, according to the Sentencing Project, a nonprofit that advocates for reducing prison and jail populations.

Studies show that children who receive treatment for their health needs after release are less likely to reenter the juvenile justice system.

“Oftentimes what pulls kids and families into these systems is unmet needs,” said Joseph Ribsam, director of child welfare and juvenile justice policy at the Annie E. Casey Foundation and a former state youth services official. “It makes more sense for kids to have their health care tied to a health care system, not a carceral system.”

Yet many state and local facilities and state health agencies nationwide will have to make a lot of changes before incarcerated people can receive the services required in the law. The facilities and agencies must first create systems to identify eligible youths, find health care providers who accept Medicaid, bill the federal government, and share records and data, according to state Medicaid and corrections officials, as well as researchers following the changes.

In January, the federal government began handing out around $100 million in grants to help states implement the law, including to update technology.

Some state officials are flagging potential complications.

In Georgia, for example, the state juvenile justice system doesn’t have a way to bill Medicaid, said Michelle Staples-Horne, medical director for the Georgia Department of Juvenile Justice.

In South Dakota, suspending someone’s Medicaid or CHIP coverage while they are incarcerated instead of just ending it is a challenge, Kellie Wasko, the state’s secretary of corrections, said in a November webinar on the new law. That’s a technical change that’s difficult to operationalize, she said.

State Medicaid officials also acknowledged that they can’t force local officials to comply.

“We can build a ball field, but we can’t make people come and play ball,” said Patrick Beatty, deputy director and chief policy officer for the Ohio Department of Medicaid.

States should see the law as a way to address a “neglected part of the health system,” said Wachino, the former CMS official. By improving care for people transitioning out of incarceration, states may spend less money on emergency care and on corrections, she said.

“Any state that is dragging its feet is missing an opportunity here,” she said.

‘Our System Is Making People Worse’

The Texas Department of Family Services took custody of Valdez when he was 8 because his mother’s history of seizures made her unable to care for him, according to records. Valdez said he ran away from foster care placements because of abuse or neglect.

A few years later, he entered the Texas juvenile justice system for the first time. Officials there would not comment on his case. But Valdez said that while he was shuffled between facilities, his antidepressant and antipsychotic medications would be abruptly stopped and his records rarely transferred. He never received therapy or other support to cope with his childhood experiences, which included sexual abuse, according to his medical records.

Valdez said his mental health deteriorated while he was in custody, from being put in isolation for long periods of time, the rough treatment of officials, fears of violence from other children, and the lack of adequate health care.

“I felt like an animal,” Valdez said.

In August, the U.S. Department of Justice released a report that claims the state exposes children in custody to excessive force and prolonged isolation, fails to protect them from sexual abuse, and fails to provide adequate mental health services. The Texas Juvenile Justice Department has said it is taking steps to improve safety at its facilities.

In 2024, 100% of children in Texas Juvenile Justice Department facilities needed specialized treatment, including for problems with mental health, substance use, or violent behavior, according to the department.

Too often, “our system is making people worse and failing to provide them with the continuity of care they need,” said Elizabeth Henneke, founder and CEO of the Lone Star Justice Alliance, a nonprofit law firm in Texas.

Valdez said trauma from state custody shadowed his life after release. He was quick to anger and violence and often felt hopeless. He was incarcerated again before he had a breakdown that led to his hospitalization in 2022. He was diagnosed with post-traumatic stress disorder and put on medication, according to his medical records.

“It helped me understand that I wasn’t going crazy and that there was a reason,” he said. “Ever since then, I’m not going to say it’s been easy, but it’s definitely been a bit more manageable.”

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The program, called “Georgia Pathways to Coverage,” is the nation’s only active Medicaid work requirement.

Pathways has cost tens of millions in federal and state dollars on administration and consulting fees while enrolling 5,542 people as of Nov. 1, according to KFF Health News’ reporting. The congressional letter cited the reporting in its request to the Government Accountability Office.

“Republicans are hell-bent on putting mountains of red tape between Americans and their health care,” Sen. Ron Wyden (D-Ore.), head of the Senate Finance Committee, said in a statement about the letter he co-wrote. “Taxpayers deserve to hear from an independent watchdog about the true costs of the Republican health care agenda.”

Georgia Sens. Jon Ossoff and Raphael Warnock co-signed the request.

The Democrats’ letter asks the GAO to prepare a summary of the costs to run the program — and detail how much of that has been picked up by the feds, break down the cost of the program per person, and assess how Georgia has used contractors to run the program and how federal officials have overseen it.

The request comes as President-elect Donald Trump, who supported work requirements in his first administration, is set to take office and potentially transform how people qualify for Medicaid, the joint federal-state health insurance program for people who are disabled or have low incomes.

Many GOP-led states have pushed for work requirements in public benefits programs such as Medicaid, arguing that they promote employment. Georgia’s Pathways program requires some Medicaid applicants to prove they are working, volunteering, or studying for 80 hours a month.

The first Trump administration approved work requirements in 13 states. Only Georgia’s program, which started on July 1, 2023, is in effect. A Medicaid work requirement launched in Arkansas was halted by a court order in 2019.

In November, South Dakota voters gave lawmakers a green light to seek a work requirement for some Medicaid enrollees. In 2023, North Carolina lawmakers directed the state to seek work requirements if the federal government would approve such a waiver. And some GOP-led states have indicated they might also seek work requirements.

Georgia’s program has been a priority of Republican Gov. Brian Kemp, and his team defended the program.

“The Senators should be more focused on examining the failures of the federal government to adequately provide the services they’re required to administer than looking for every opportunity to criticize states that are taking innovative approaches,” Garrison Douglas, a Kemp spokesperson, said in an emailed statement.

Enrollment in the program, which as of Dec. 13 was 5,903, has fallen far short of the state’s initial projection of more than 25,000 in the first year.

The program has cost more than $40 million in state and federal funds, largely administrative costs and not medical care for enrollees, Georgia officials have said. KFF Health News reported in March that Georgia officials estimated the program’s administrative costs could increase to $122 million over four years.

A spokesperson for Georgia’s Medicaid agency, Fiona Roberts, said the costs “increased significantly” because of the program’s delayed launch. While it was approved by the Trump administration, the Biden administration attempted to block it, resulting in a legal fight.

KFF Health News has also reported that the program has slowed processing times for other Medicaid applications and for public benefits such as cash assistance and food stamps.

Meanwhile, more than a year after Pathways’ launch, Georgia officials said they still had not removed enrollees for failing to prove they are working, volunteering, or studying for 80 hours a month, KFF Health News has reported.

“State leaders continue to put taxpayer dollars behind their ineffective health care program that has failed by nearly every metric,” Warnock said.

Previous federal research suggests that the high costs per enrollee associated with Georgia’s program could be repeated elsewhere. The Trump administration didn’t properly weigh administrative costs in state applications for work requirements, according to a 2019 GAO report. Pathways is slated to expire on Sept. 30, unless federal officials grant an extension.

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In July, his parents, Haresh and Nina Adhvaryu, received a letter saying their applications would be delayed, he said. In August, the Adhvaryus started calling a Georgia helpline, he said, but couldn’t leave a message. It wasn’t until September, when they visited state offices, that they were informed their applications were incomplete.

The couple were mystified. They had Medicaid coverage when they lived in Virginia, before their recent move to metro Atlanta.

While they waited, Adhvaryu’s parents — ages 71 and 76 — delayed care, fearing they couldn’t afford it. They have Medicare, and, in Georgia, Medicaid pays for its premiums, copayments, and deductibles. The lack of extra coverage strained their fixed incomes.

“It was concerning,” Deegant Adhvaryu said, because his family lost a critical financial “lifeline.”

It took Adhvaryu’s parents until late October — more than 120 days after applying — to finally get their Medicaid cards in the mail. Federal rules require states to process most Medicaid applications within 45 days.

For years, Georgia’s public benefits system has been plagued by problems like the Adhvaryus’ — a glitchy website that’s often down for maintenance, a shortage of staff to process applications, and technology that malfunctions, according to consumer advocacy organizations, former state employees, and researchers.

But a KFF Health News analysis shows processing times have worsened since July 2023, when Georgia launched the nation’s only active Medicaid work requirement program, “Georgia Pathways to Coverage.” The program began three months after the state began redetermining the eligibility of all Medicaid enrollees following a covid-19 pandemic pause.

The percentage of Medicaid applicants waiting more than a month and a half to have their applications processed has nearly tripled in the first year of Pathways, the analysis of state and federal records found. Georgia had the slowest processing time in the country as of June, for income-based applications. Preliminary data from July puts the state as the second-slowest. The percentage of applications for financial and food assistance that take more than 30 days to process has also risen by at least 8 percentage points.

Pathways “is really bogging down” a system that was “already functioning relatively poorly,” said Leah Chan, director of health justice at the Georgia Budget and Policy Institute, a nonprofit research organization that supports full Medicaid expansion.

Georgia’s effort to run Pathways reveals the challenges that loom for states looking to launch Medicaid work requirements under a second Donald Trump presidency. His first administration approved them in more than a dozen states. On Nov. 5, South Dakota voters gave lawmakers the green light to seek a work requirement for its existing Medicaid expansion population.

Conservative lawmakers around the country would like to add work requirements to Medicaid, the state-federal insurance program for people with disabilities or low incomes, said Joan Alker, who leads Georgetown University’s Center for Children and Families. “If Georgia fails, that’s a big black eye for the Republican Party.”

Pathways is one of Republican Gov. Brian Kemp’s signature health policy initiatives and his alternative to fully expanding Medicaid eligibility under the Affordable Care Act. Applicants must document that they’re working, studying, or doing other qualifying activities for 80 hours a month in exchange for health coverage.

Consumer advocacy organizations, former state employees, and researchers say the initiative adds inefficiencies and bureaucracy that slow down other public programs, like the Supplemental Nutrition Assistance Program, or SNAP, and the Temporary Assistance for Needy Families program, or TANF.

As of Nov. 1, just 5,542 residents were participating in the work requirement program. Under a full Medicaid expansion program, nearly 300,000 Georgians would gain health coverage, according to the Robert Wood Johnson Foundation.

Georgia’s work requirement hasn’t been cheap to implement. An analysis by Chan’s think tank found about $13,360 in state and federal spending for each enrollee from January 2021 through June 2024, largely on administrative costs, not health benefits. That doesn’t account for the cost to prepare and submit the application for Pathways to the feds or the fees associated with legal fights over the program.

Officials in Georgia told KFF Health News that, as of June 30, Pathways had cost $40.6 million in state and federal funds.

Pathways also has increased the workload for state staffers who must manually verify complex eligibility requirements and monitor enrollees’ continued eligibility, according to consumer advocacy organizations, former state employees, and researchers.

The Kemp administration blames the processing slowdown of state benefits, in part, on what’s known as the Medicaid “unwinding,” which began in April 2023 as states had to redetermine the eligibility of all enrollees in the wake of the coronavirus pandemic.

“Georgia Pathways is an innovative, Georgia-specific program that has provided coverage to thousands of Georgians who otherwise would be without care,” said Garrison Douglas, a Kemp spokesperson.

Critics say the Pathways rollout stressed a system that’s had snags for years. In contrast, Chan pointed to North Carolina, which fully expanded Medicaid during the unwinding, covering more people for less than the cost per person of Pathways and without creating additional backlogs for other public benefits programs.

Waiting for benefits approval can have concrete consequences for people’s health and well-being, say doctors, researchers, and patient advocates.

Flavia Rossi, a pediatrician in Tifton, about 180 miles south of Atlanta, said some parents skip their kids’ checkups because they fear expensive out-of-pocket costs while waiting for Medicaid coverage for their children.

In October 2023, Ellenwood, Georgia, residents Gloria and William Felder, who have custody of a granddaughter, were told by the state that her Medicaid coverage had lapsed. William Felder said they reapplied three times but waited 11 months for her coverage to be restored, during which they spent over $1,500 on her care. “We wanted to make sure she had coverage,” he said.

After a health insurance navigator queried the state, Felder said, the state finally informed them in September that she had Medicaid again.

Georgia officials haven’t invested enough in the state agency that processes public benefits applications, said Laura Colbert, executive director of Georgians for a Healthy Future, a nonprofit policy advocacy organization. The problem is exacerbated by staffing shortages, high staff turnover, and outdated technology, she said.

In November 2023, the U.S. Department of Agriculture notified state officials that Georgia was “severely out of compliance” with timeliness standards for processing SNAP applications. A recent progress report details the scope of the issues: a system that incorrectly prioritizes applications, not enough staff to handle a backlog of nearly 52,000 new applications, and no system to promptly reassign applications when staff are off.

“These delays create real hardship, forcing families to make choices between paying for medicine, food, or rent while they wait for the support they’re entitled to,” Colbert said.

The state checked the eligibility of about 2.7 million residents when the pandemic-era Medicaid continuous coverage requirement ended. Nearly half a million Georgians lost coverage — including nearly 300,000 children, according to an analysis by Alker’s nonprofit.

Instead of investing more to ensure that people who were wrongly removed could reenroll, the state continues to pour money into the Pathways program, Alker said. She cited a recently launched $10.7 million ad campaign aimed at boosting Pathways enrollment with money from federal pandemic recovery funds.

The contract for that work was awarded to the consulting firm Deloitte, which has already received millions from Georgia to build and implement Pathways. It’s also responsible for the state’s Gateway technology system, which people use to access public benefits and Georgia officials have described as having ongoing problems, according to KFF Health News’ reporting.

Deloitte did not respond to a request for comment for this article. It previously told KFF Health News that it does not comment on state-specific issues.

In a November letter to KFF Health News, Deloitte spokesperson Karen Walsh said the firm’s clients — state governments — “understand that large system implementations are challenging due to the complexity of the programs they support, and that all IT systems require ongoing maintenance, periodic enhancements and upgrades to software and hardware, and database management.”

Deegant Adhvaryu had to help keep his parents afloat as they waited months to get approved for Medicaid and SNAP. He bought them groceries and helped cover their rent. Not every applicant is that lucky.

“There are people in the state of Georgia with far less financial resources, far less family connections to be able to help them that need these services,” he said.

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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Clark, de 39 años, se sorprendió de que le pidieran pagar esa cantidad en su segunda visita prenatal. Normalmente, las pacientes reciben la factura después que el seguro haya pagado su parte, y en el caso de las embarazadas eso suele ocurrir cuando termina el embarazo. Pasarían meses antes de que la consulta presentara el reclamo a su seguro médico.

Clark dijo que se sintió atrapada. La consulta de obstetricia de Cleveland, Tennessee, estaba asociada a un centro de maternidad donde ella quería dar a luz. Además, ella y su marido llevaban mucho tiempo deseando tener un hijo. Y Clark se sentía especialmente sensible porque unas semanas antes había muerto su madre.

“Estás ahí, en la ventanilla, rodeada de gente, y tratas de ser lo más amable posible”, recordó Clark, entre lágrimas. “Así que lo pagué”.

En las comunidades sobre bebés en internet y en otros foros de las redes sociales, las embarazadas afirman que sus proveedores les piden que paguen antes de lo previsto. La práctica es legal, pero los defensores de los pacientes la califican de poco ética. Los médicos alegan que pedir el pago por adelantado les garantiza una compensación por sus servicios.

Es difícil saber con qué frecuencia ocurre porque se considera una transacción privada entre el proveedor y el paciente. Por lo tanto, los pagos no se registran en los datos de reclamos de seguros y, por ende, los expertos no los analizan.

Pacientes, expertos en facturación médica y activistas afirman que esta práctica de facturación provoca una ansiedad inesperada en un momento de estrés y presión financiera ya de por sí elevados. En ocasiones, las estimaciones pueden ser superiores a lo que el paciente deba en última instancia y obligan a las personas a luchar por un reembolso si la cantidad abonada era superior a la factura final.

Los pagos por adelantado también ponen trabas a las mujeres que quieran cambiar de proveedor si no están satisfechas con la atención. En algunos casos, pueden hacer que las mujeres renuncien por completo a la atención prenatal, sobre todo en lugares donde existen pocas opciones de atención materna.

Es como “secuestrar el tratamiento”, afirmó Caitlin Donovan, directora de la Patient Advocate Foundation.

Expertos en facturación médica y salud de la mujer creen que las consultas de ginecología y obstetricia adoptaron esta práctica para gestionar el elevado costo de la atención materna y la forma en que se factura en Estados Unidos.

Cuando un embarazo llega a término, los ginecólogos y obstetras suelen presentar un único reclamo al seguro por los cuidados prenatales rutinarios, el trabajo de parto, el parto y, a menudo, la atención posparto. Esta práctica de agrupar toda la atención materna en un único código de facturación comenzó hace tres décadas, según Lisa Satterfield, directora de salud y política de pagos del American College of Obstetricians and Gynecologists. Sin embargo, la facturación agrupada ha quedado obsoleta.

Antes, las pacientes embarazadas estaban sujetas a copagos por cada visita prenatal, lo que podía llevarlas a saltarse citas cruciales para ahorrar dinero. Pero ahora la Ley de Cuidado de Salud a Bajo Precio (ACA) exige que todas las aseguradoras comerciales cubran íntegramente determinados servicios prenatales. Además, cada vez es más frecuente que las embarazadas cambien de proveedor o que diferentes proveedores se encarguen de la atención prenatal y el parto, sobre todo en las zonas rurales, donde son frecuentes los traslados de pacientes.

Algunos proveedores afirman que los pagos por adelantado les permiten repartir los pagos únicos a lo largo del embarazo para asegurarse de que se los compensa por la atención que prestan, aunque finalmente no atiendan el parto.

“Desgraciadamente hay personas que no cobran por su trabajo”, afirmó Pamela Boatner, partera en un hospital de Georgia.

Aunque cree que las mujeres deben recibir atención durante el embarazo independientemente de su capacidad de pago, también entiende que algunos proveedores quieran asegurarse de que no se ignora su factura después de que nazca el bebé. Los nuevos padres pueden verse desbordados por las facturas del hospital y los costos de cuidar a un nuevo hijo, y pueden no tener ingresos suficientes si uno de los progenitores no trabaja, explicó Boatner.

En Estados Unidos, tener un bebé puede resultar caro. Las personas que están cubiertas por un seguro médico a través de grandes empresas pagan un promedio de unos $3.000 de su bolsillo por los cuidados durante el embarazo, el parto y el posparto, según el Peterson-KFF Health System Tracker. Además, muchos optan por planes médicos con deducibles elevados, lo que les obliga a asumir una mayor parte de los costos. De los 100 millones de estadounidenses con deudas médicas, el 12% atribuye al menos parte de ellas a los cuidados de maternidad, según una encuesta de KFF de 2022.

Las familias necesitan tiempo para ahorrar y poder así hacer frente a los elevados costos del embarazo, el parto y el cuidado de los hijos, en especial si no tienen licencia por maternidad remunerada, dijo Joy Burkhard, CEO del Policy Center for Maternal Mental Health, un think tank con sede en Los Angeles. Pedirles que paguen por adelantado “es un golpe bajo”, agregó. “¿Y si no tienes dinero? ¿Lo cargas a tarjetas de crédito y esperas que funcione?”.

Calcular los costos finales del parto depende de múltiples factores, como el momento del embarazo, las prestaciones del plan y las complicaciones de salud, afirmó Erin Duffy, investigadora de políticas de salud del Centro Schaeffer de Política y Economía de la Salud de la Universidad del Sur de California. La factura final para la paciente no está clara hasta que el plan de salud decide qué parte cubrirá, explicó.

Pero a veces se elimina la opción de esperar a la aseguradora.

Durante el primer embarazo de Jamie Daw, en 2020, su ginecólogo-obstetra aceptó su negativa a pagar por adelantado porque Daw quería ver la factura final. Pero en 2023, durante su segundo embarazo, en una consulta privada de obstetricia de Nueva York le dijeron que, como tenía un plan con deducible alto, era obligatorio pagar $2.000, en pagos mensuales.

Daw, investigadora de políticas de salud en la Universidad de Columbia, dio a luz en septiembre de 2023 y recibió un cheque de reembolso ese noviembre por $640 para cubrir la diferencia entre la estimación y la factura final.

“Yo me dedico a estudiar los seguros de salud”, dijo. “Pero una no se imagina lo enormemente complicado que es cuando lo vives en persona”.

Aunque ACA obliga a las aseguradoras a cubrir algunos servicios prenatales, no prohíbe a los proveedores enviar la factura final a los pacientes antes de tiempo. Sería un reto político y práctico para los gobiernos estatales y federal intentar regular el momento de la solicitud de pago, señaló Sabrina Corlette, codirectora del Centro de Reformas de Seguros de Salud de la Universidad de Georgetown. Los grupos de presión médicos son poderosos y los contratos entre aseguradoras y proveedores médicos están protegidos por derechos de propiedad intelectual.

Debido a la zona gris legal, Lacy Marshall, corredora de seguros de Rapha Health and Life en Texas, aconseja a sus clientes que pregunten a la aseguradora si pueden negarse a pagar por adelantado su deducible. Algunos planes prohíben a los proveedores de su red exigir el pago por adelantado.

Si la aseguradora les dice que pueden negarse a pagar por adelantado, Marshall les recomienda a los clientes establecer una relación con una consulta antes de negarse a pagar, de modo que el proveedor no pueda rechazar el tratamiento.

Clark dijo que alcanzó el deducible de su seguro después de pagar las pruebas genéticas, las ecografías adicionales y otros servicios con su cuenta de salud de gastos flexibles. Entonces llamó a la consulta de su ginecólogo y pidió que le devolvieran el dinero.

“Perdí el miedo”, dijo Clark, que antes había trabajado en una aseguradora de salud y en un consultorio médico. Recibió un primer cheque por la mitad de los $960 que había pagado inicialmente.

En agosto, Clark fue trasladada al hospital después que su presión arterial se disparara. Un especialista en embarazos de alto riesgo, y no su ginecólogo-obstetra original, atendió el parto prematuro de su hijo Peter mediante cesárea de urgencia a las 30 semanas de embarazo.

Hasta que no resolvió la mayoría de las facturas del parto no recibió el resto del reembolso de la otra consulta de ginecología y obstetricia.

El último cheque llegó en octubre, pocos días después de que Clark saliera del hospital con Peter para llevarlo a su hogar y tras múltiples llamadas a la consulta. Dijo que todo eso sumó estrés a un período ya de por sí estresante.

“¿Por qué tengo que pagar el precio como paciente?”, se preguntó. “Sólo intento tener un bebé”.

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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KFF Health News undertook a yearlong examination of how government decisions undermine Black health — reviewing court and inspection records and government reports, and interviewing dozens of academic researchers, doctors, politicians, community leaders, grieving moms, and patients. 

During the past two decades there have been 1.63 million excess deaths among Black Americans relative to white Americans. That represents a loss of more than 80 million years of life, according to a 2023 JAMA study.

The video features senior correspondents Fred Clasen-Kelly and Renuka Rayasam, along with Morris Brown, a family care physician in Kingstree, South Carolina.

Learn more about the “Systemic Sickness” series here.

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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Clark, 39, was shocked that she was asked to pay that amount during this second prenatal visit. Normally, patients receive the bill after insurance has paid its part, and for pregnant women that’s usually only when the pregnancy ends. It would be months before the office filed the claim with her health insurer.

Clark said she felt stuck. The Cleveland, Tennessee, obstetrics practice was affiliated with a birthing center where she wanted to deliver. Plus, she and her husband had been wanting to have a baby for a long time. And Clark was emotional, because just weeks earlier her mother had died.

“You’re standing there at the window, and there’s people all around, and you’re trying to be really nice,” recalled Clark, through tears. “So, I paid it.”

On online baby message boards and other social media forums, pregnant women say they are being asked by their providers to pay out-of-pocket fees earlier than expected. The practice is legal, but patient advocacy groups call it unethical. Medical providers argue that asking for payment up front ensures they get compensated for their services.

How frequently this happens is hard to track because it is considered a private transaction between the provider and the patient. Therefore, the payments are not recorded in insurance claims data and are not studied by researchers.

Patients, medical billing experts, and patient advocates say the billing practice causes unexpected anxiety at a time of already heightened stress and financial pressure. Estimates can sometimes be higher than what a patient might ultimately owe and force people to fight for refunds if they miscarry or the amount paid was higher than the final bill.

Up-front payments also create hurdles for women who may want to switch providers if they are unhappy with their care. In some cases, they may cause women to forgo prenatal care altogether, especially in places where few other maternity care options exist.

It’s “holding their treatment hostage,” said Caitlin Donovan, a senior director at the Patient Advocate Foundation.

Medical billing and women’s health experts believe OB-GYN offices adopted the practice to manage the high cost of maternity care and the way it is billed for in the U.S.

When a pregnancy ends, OB-GYNs typically file a single insurance claim for routine prenatal care, labor, delivery, and, often, postpartum care. That practice of bundling all maternity care into one billing code began three decades ago, said Lisa Satterfield, senior director of health and payment policy at the American College of Obstetricians and Gynecologists. But such bundled billing has become outdated, she said.

Previously, pregnant patients had been subject to copayments for each prenatal visit, which might lead them to skip crucial appointments to save money. But the Affordable Care Act now requires all commercial insurers to fully cover certain prenatal services. Plus, it’s become more common for pregnant women to switch providers, or have different providers handle prenatal care, labor, and delivery — especially in rural areas where patient transfers are common.

Some providers say prepayments allow them to spread out one-time payments over the course of the pregnancy to ensure that they are compensated for the care they do provide, even if they don’t ultimately deliver the baby.

“You have people who, unfortunately, are not getting paid for the work that they do,” said Pamela Boatner, who works as a midwife in a Georgia hospital.

While she believes women should receive pregnancy care regardless of their ability to pay, she also understands that some providers want to make sure their bill isn’t ignored after the baby is delivered. New parents might be overloaded with hospital bills and the costs of caring for a new child, and they may lack income if a parent isn’t working, Boatner said.

In the U.S., having a baby can be expensive. People who obtain health insurance through large employers pay an average of nearly $3,000 out-of-pocket for pregnancy, childbirth, and postpartum care, according to the Peterson-KFF Health System Tracker. In addition, many people are opting for high-deductible health insurance plans, leaving them to shoulder a larger share of the costs. Of the 100 million U.S. people with health care debt, 12% attribute at least some of it to maternity care, according to a 2022 KFF poll.

Families need time to save money for the high costs of pregnancy, childbirth, and child care, especially if they lack paid maternity leave, said Joy Burkhard, CEO of the Policy Center for Maternal Mental Health, a Los Angeles-based policy think tank. Asking them to prepay “is another gut punch,” she said. “What if you don’t have the money? Do you put it on credit cards and hope your credit card goes through?”

Calculating the final costs of childbirth depends on multiple factors, such as the timing of the pregnancy, plan benefits, and health complications, said Erin Duffy, a health policy researcher at the University of Southern California’s Schaeffer Center for Health Policy and Economics. The final bill for the patient is unclear until a health plan decides how much of the claim it will cover, she said.

But sometimes the option to wait for the insurer is taken away.

During Jamie Daw’s first pregnancy in 2020, her OB-GYN accepted her refusal to pay in advance because Daw wanted to see the final bill. But in 2023, during her second pregnancy, a private midwifery practice in New York told her that since she had a high-deductible plan, it was mandatory to pay $2,000 spread out with monthly payments.

Daw, a health policy researcher at Columbia University, delivered in September 2023 and got a refund check that November for $640 to cover the difference between the estimate and the final bill.

“I study health insurance,” she said. “But, as most of us know, it’s so complicated when you’re really living it.”

While the Affordable Care Act requires insurers to cover some prenatal services, it doesn’t prohibit providers from sending their final bill to patients early. It would be a challenge politically and practically for state and federal governments to attempt to regulate the timing of the payment request, said Sabrina Corlette, a co-director of the Center on Health Insurance Reforms at Georgetown University. Medical lobbying groups are powerful and contracts between insurers and medical providers are proprietary.

Because of the legal gray area, Lacy Marshall, an insurance broker at Rapha Health and Life in Texas, advises clients to ask their insurer if they can refuse to prepay their deductible. Some insurance plans prohibit providers in their network from requiring payment up front.

If the insurer says they can refuse to pay up front, Marshall said, she tells clients to get established with a practice before declining to pay, so that the provider can’t refuse treatment.

Clark said she met her insurance deductible after paying for genetic testing, extra ultrasounds, and other services out of her health care flexible spending account. Then she called her OB-GYN’s office and asked for a refund.

“I got my spine back,” said Clark, who had previously worked at a health insurer and a medical office. She got an initial check for about half the $960 she originally paid.

In August, Clark was sent to the hospital after her blood pressure spiked. A high-risk pregnancy specialist — not her original OB-GYN practice — delivered her son, Peter, prematurely via emergency cesarean section at 30 weeks.

It was only after she resolved most of the bills from the delivery that she received the rest of her refund from the other OB-GYN practice.

This final check came in October, just days after Clark brought Peter home from the hospital, and after multiple calls to the office. She said it all added stress to an already stressful period.

“Why am I having to pay the price as a patient?” she said. “I’m just trying to have a baby.”

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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There was Joshua McCray, 69, a public bus driver who, four years after catching covid-19, still is too weak to drive.

Louvenia McKinney, 77, arrived complaining about shortness of breath.

Ponzella McClary brought her 83-year-old mother-in-law, Lula, who has memory issues and had recently taken a fall.

Morris Brown, the family practice physician who owns the clinic, rotated through Black patients nearly every 20 minutes. Some struggled to walk. Others pulled oxygen tanks. And most carried three pill bottles or more for various chronic ailments.

But Brown called them “lucky,” with enough health insurance or money to see a doctor. The clinic serves patients along the infamous “Corridor of Shame,” a rural stretch of South Carolina with some of the worst health outcomes in the nation.

“There is a lot of hopelessness here,” Brown said. “I was trained to keep people healthy, but like 80% of the people don’t come see the doctor, because they can’t afford it. They’re just dying off.”

About 50 miles from the sandy beaches and golf courses along the coastline of this racially divided state, Morris’ independent practice serves the predominantly Black town of roughly 3,200 people. The area has stark health care provider shortages and high rates of chronic disease, such as diabetes, high blood pressure, and heart disease.

But South Carolina remains one of the few states where lawmakers refuse to expand Medicaid, despite research that shows it would provide medical insurance to hundreds of thousands of people and create thousands of health care jobs across the state.

The decision means there will be more preventable deaths in the 17 poverty-stricken counties along Interstate 95 that constitute the Corridor of Shame, Brown said.

“There is a disconnect between policymakers and real people,” he said. The African Americans who make up most of the town’s population “are not the people in power.”

The U.S. health care system, “by its very design, delivers different outcomes for different populations,” said a June report from the National Academies of Sciences, Engineering, and Medicine. Those racial and ethnic inequities “also contribute to millions of premature deaths, resulting in loss of years of life and economic productivity.”

Over a recent two-decade span, mounting research shows, the United States has made almost no progress in eliminating racial disparities in key health indicators, even as political and public health leaders vowed to do so.

And that’s not an accident, according to academic researchers, doctors, politicians, community leaders, and dozens of other people KFF Health News interviewed.

Federal, state, and local governments, they said, have put systems in place that maintain the status quo and leave the well-being of Black people at the mercy of powerful business and political interests.

Across the nation, authorities have permitted nearly 80% of all municipal solid waste incinerators — linked to lung cancer, high blood pressure, higher risk of miscarriages and stillbirths, and non-Hodgkin lymphoma — to be built in Black, Latinx, and low-income communities, according to a complaint filed with the federal government against the state of Florida.

Federal lawmakers slowed investing in public housing as people of color moved in, leaving homes with mold, vermin, and other health hazards.

And Louisiana and other states passed laws allowing the carrying of concealed firearms without a permit even though gun violence is now the No. 1 killer of kids and teens. Research shows Black youth ages 1 to 17 are 18 times as likely to suffer a gun homicide as their white counterparts.

“People are literally dying because of policy decisions in the South,” said Bakari Sellers, a Democratic former state representative in South Carolina.

KFF Health News undertook a yearlong examination of how government decisions undermine Black health — reviewing court and inspection records and government reports, and interviewing dozens of academic researchers, doctors, politicians, community leaders, grieving moms, and patients.

From the cradle to the grave, Black Americans suffer worse health outcomes than white people. They endure greater exposure to toxic industrial pollution, dangerously dilapidated housing, gun violence, and other social conditions linked to higher incidence of cancer, asthma, chronic stress, maternal and infant mortality, and myriad other health problems. They die at younger ages, and covid shortened lives even more.

Disparities in American health care mean Black people have less access to quality medical care, researchers say. They are less likely to have health insurance and, when they seek medical attention, they report widespread incidents of discrimination by health care providers, a KFF survey shows. Even tools meant to help detect health problems may systematically fail people of color.

All signs point to systems rooted in the nation’s painful racist history, which even today affects all facets of American life.

“So much of what we see is the long tail of slavery and Jim Crow,” said Andrea Ducas, vice president of health policy at the Center for American Progress, a nonprofit think tank.

Put simply, said Jameta Nicole Barlow, a community health psychologist and professor at George Washington University, government actions send a clear message to Black people: “Who are you to ask for health care?”

Past and Present

The end of slavery gave way to laws that denied Black people in the U.S. basic rights, enforced racial segregation, and subjected them to horrific violence.

“I can take facts from 100 years ago about segregation and lynchings for a county and I can predict the poverty rate and life expectancy with extraordinary precision,” said Luke Shaefer, a professor of social justice and public policy at the University of Michigan.

Starting in the 1930s, the federal government sorted neighborhoods in 239 cities and deemed redlined areas — typically home to Black people, Jews, immigrants, and poor white people — unfit for mortgage lending. That process concentrated Black people in neighborhoods prone to discrimination.

Local governments steered power plants, oil refineries, and other industrial facilities to Black neighborhoods, even as research linked them to increased risks of cardiovascular and respiratory diseases, cancer, and preterm births.

The federal government did not even begin to track racial disparities in health care until the 1980s, and at that time disparities in heart disease, infant mortality, cancer, and other major categories accounted for about 60,000 excess deaths among Black people each year. Elevated rates of six diseases, including cancer, addiction, and diabetes, accounted for more than 80% of the excess mortality for Black and other minority populations, according to “The Heckler Report,” released in 1985. During the past two decades there have been 1.63 million excess deaths among Black Americans relative to white Americans. That represents a loss of more than 80 million years of life, according to a 2023 JAMA study.

Recent efforts to address health disparities have run headlong into racist policies still entrenched in health systems. The design of the U.S. health care system and structural barriers have led to persistent health inequities that cost more than a million lives and billions of dollars, according to the national academies report.

“When covid was first hitting, it was just sort of immediately clear who was going to suffer the most,” Ducas said, “not just because of differential access to care, but who was in a living environment that’s multigenerational or crowded, who is more likely to be in a job where they are an essential worker, who is going to be more reliant on public transportation.”

For example, in spring 2020, the North Carolina health department, led by current Centers for Disease Control and Prevention Director Mandy Cohen, failed to get covid testing to vulnerable Black communities where people were getting sick and dying from covid-related causes at far higher rates than white people.

And Black Americans were far more likely to hold jobs — in areas such as transportation, health care, law enforcement, and food preparation — that the government deemed essential to the economy and functioning of society, making them more susceptible to covid, according to research.

Until McCray, the bus driver in Kingstree, South Carolina, got covid in his mid-60s, he was strong enough to hold two jobs. He ended up on a feeding tube and a ventilator after he contracted covid in 2020 while taking other essential workers from this predominantly Black area to jobs in a whiter, wealthier tourist town.

Now he cannot work and at times has difficulty walking.

“I can tell you the truth now: It was only the good Lord that saved him,” said Brown, the rural physician who treated McCray and many patients like him.

Federal and state governments have spent billions of dollars to implement the Affordable Care Act, the Children’s Health Insurance Program, and other measures to increase access to health care. Yet, experts said, many of the problems identified in “The Heckler Report” persist.

When Lakeisha Preston in Mississippi was diagnosed with walking pneumonia in 2019, she ended up with a $4,500 medical bill she couldn’t pay. Preston works at Maximus, which has a $6.6 billion contract with the federal government to help people sign up for Medicare and Affordable Care Act health plans.

She is convinced that being a Black woman made her challenges more likely.

“Think about how many centuries the same thing has been happening,” said Preston, noting how her mother worked two jobs her entire life without a vacation and suffered from health conditions including diabetes, cataracts, and carpal tunnel syndrome. Today Preston can’t afford to put her 8-year-old son on her health plan, so he’s covered by Medicaid.

“We consistently offer healthcare plans that are on par, if not better, than those available to most Americans through state and federal exchanges,” said Eileen Cassidy Rivera, a Maximus spokesperson.

In email exchanges with the Biden administration, spokespeople insisted that it is making progress in closing the racial health gap. They said officials have taken steps to address food insecurity, housing instability, pollution, and other social determinants of health that help fuel disparities.

President Joe Biden issued an executive order on his first full day in office in 2021 that said “the COVID-19 pandemic has exposed and exacerbated severe and pervasive health and social inequities in America.” Later that year, the White House issued another executive order focused on improving racial equity and acknowledged that long-standing racial disparities in health care and other areas have been “at times facilitated by the federal government.”

“The Biden-Harris Administration is laser focused on addressing the health needs of Black Americans by dismantling persistent structural inequities,” said Renata Miller, a spokesperson for the administration.

The CDC, along with some state and local governments, declared racism a serious public health threat.

U.S. Rep. Alma Adams, a North Carolina Democrat, pushed for “Momnibus” legislation to reduce maternal mortality. Yet federal lawmakers left money for Black maternal health out of the historic Inflation Reduction Act in 2022.

“I come to this space as an elected official, knowing what it is like to be poor, knowing what it is like to not have insurance and having to get up at 3, 4 in the morning with my mom to take my sister to the emergency room,” Adams said.

In the 1960s in North Carolina, Adams and her family would take her sister Linda, who had sickle cell anemia, to the emergency room because they had no doctor and could not afford health insurance. Linda died at the age of 26 in 1971.

“You have to have some sensitivity for this work,” Adams said. “And a lot of folks that I’ve worked with don’t have it.”

Governor’s Veto

The website for Kingstree depicts idyllic images of small-town life, with white people sitting on a porch swing, kayaking on a river, eating ice cream, and strolling with their dogs. Two children wearing masks and a food vendor are the only Black people in the video, even though Black people make up 70% of the town’s population.

But life in Kingstree and surrounding communities is marked by poverty, a lack of access to health care, and other socioeconomic disadvantages that have given South Carolina poor rankings in key health indicators such as rates of death and obesity among children and teens.

Some 23% of residents in Williamsburg County, which contains Kingstree, live below the poverty line, about twice the national average, according to federal data.

There is one primary care physician for every 5,080 residents in Williamsburg County. That’s far less than in more urbanized and wealthier counties in the state such as Richland, Greenville, and Beaufort.

Edward Simmer, the state’s interim public health director, said that if “you are African American in a rural zone, it is like having two strikes against you.”

Asked if South Carolina should expand Medicaid, Simmer said the challenges South Carolina and other states confront are worsened by health care provider shortages and structural inequities too large and complicated for Medicaid expansion alone to solve.

“It is not a panacea,” he said.

But for Brown and others, the reason South Carolina remains one of the few states that have not expanded Medicaid — one step that could help narrow disparities with little cost to the state — is clear.

“Every year we look at the data, we see the health disparities and we don’t have a plan to improve,” Brown said. “It has become institutionalized. I call it institutional racism.”

A July report from George Washington University found that Medicaid expansion would provide insurance to 360,000 people and add 18,000 jobs in the health care sector in South Carolina.

“Racism is the reason we don’t have Medicaid expansion. Full stop,” said Janice Probst, a former director of the Rural and Minority Health Research Center in South Carolina. “These are not accidents. There is an idea that you can stay in power by using racism.”

South Carolina’s Republican governor, Henry McMaster, in July vetoed legislation that would have created a committee to consider Medicaid expansion, saying he did not believe it would be “fiscally responsible.”

Expanding Medicaid in the state could result in $4 billion in additional economic output from an influx of federal funds in 2026, according to the July report.

Beyond health care coverage and provider shortages, Black people “have never been given the conditions needed to thrive,” said Barlow, the George Washington University professor. “And this is because of white supremacy.”

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The children, Deas said, often have been exposed to violence on hotel properties, exhibit aggression or anxiety from living in a crowded single room, and face food insecurity because some hotel rooms don’t have kitchens.

“Social trauma is the biggest challenge” when students first arrive, Deas said. “We hear a lot about sleep problems.” To meet students’ needs, Deas developed a schoolwide program featuring counselors, a food pantry, and special protocols for handling those who may fall asleep in class.

“Beyond the teaching, there’s a social part,” he said. “We have to find ways to support the families as well.”

Extended-stay hotels are often a last resort for low-income families trying to find housing. Nationally, more than 100,000 students lived in extended-stay hotels in 2022, according to the Department of Education, though officials say that is likely an undercount. Children living in hotels are considered homeless under federal law, and in some Atlanta-area counties about 40% of homeless students live in this kind of housing, according to local officials.

And with rising rents and evictions, and decreased access to federal public housing, the use of extended-stay hotels as a long-term option is becoming more frequent. Like other forms of homelessness, hotel living can lead to — or exacerbate — physical and mental health problems for children, say advocates for families and researchers who study homelessness.

In the Atlanta area, inspections of extended-stay hotels have revealed ventilation issues, insect infestations, mold, and other health threats. Children living there also can experience or witness crime and gun violence. The increasing use of extended-stay hotels is a warning sign, observers said, a reflection of the lack of sufficient affordable housing policy in the U.S.

And the crisis is having “lifelong consequences,” said Sarah Saadian of the National Low Income Housing Coalition. “The only way that we can really address that shortage is if there are significant federal resources at scale. Build more housing and bridge the gap between rents and wages.”

Often, evictions force families into hotels — and can keep them trapped there. Many landlords refuse to rent to people with evictions in their credit history, even if the tenant isn’t responsible for the displacement, said Joy Monroe, founder and CEO of the Single Parent Alliance & Resource Center, or SPARC, a nonprofit group in metro Atlanta that has helped hundreds of families move from hotels to apartments or rental homes.

Black women and other women of color, often with kids, are evicted at much higher rates and are more likely to find themselves living in extended-stay hotels, advocates say.

Some residents are also families fleeing domestic violence, they say.

Hotels often don’t require security deposits, application fees, or background checks, thus providing immediate relief for families seeking shelter. While there are higher-end options, the average rate for an economy-class extended-stay room was $56.68 a night during the first three months of 2024, according to the Highland Group, a research firm that focuses on the hotel sector — which works out to more than $1,700 a month.

And while the rooms offer respite from other forms of homelessness — like sleeping in a car or in a tent — a hotel “is no place to raise children,” said Michael Bryant, CEO of New Life Community Alliance, which helps families in South Dekalb, a part of metro Atlanta, move from hotels to homes.

Children living in hotels are often behind on vaccinations, and they may end up in the emergency room because of delays in care, said Gary Kirkilas, a pediatrician in Phoenix who helps children, teens, and families who are presently homeless or at risk of homelessness. About 75% of children with unstable housing whom he sees have at least one developmental delay, and others experience significant emotional and behavioral issues.

Tanazia Scott, who has bounced between two extended-stay hotels for several months, said her three children “feel depressed and upset” over hotel life.

An eviction sent Kassandra Norman, 58, and her two daughters into a months-long journey of staying in Atlanta-area hotels. For three months, they slept in a car outside a convenience store. “It’s hard to do homework in a car and in the hotel,” said 19-year-old Kazuri Taylor, Norman’s younger daughter.

Some hotels prohibit kids from playing outside in their parking lots, leading to additional stress, advocates say. That was the reason Yvonne Thomas, 45, and her family were evicted from an extended-stay hotel in DeKalb County, she said: “They put us out for nothing.”

And there are other problems. More than a dozen students at Dunaire Elementary live on an extended-stay property called Haven Hotel. In August, DeKalb County’s code enforcement division said the hotel had “not maintained minimum life safety standards.” Roaches and spiders live in rooms and breezeways, according to state health inspection reports. Residents say they have been charged $1 for a roll of toilet paper.

The hotel’s owner and manager could not be reached for comment after multiple attempts.

“No one is talking about these families,” said Sue Sullivan, a community advocate and a volunteer with the Motel to Home coalition in Atlanta, who brings toys, bookbags, food, and toiletries on her hotel visits.

A February public health inspection at another DeKalb County hotel found several rooms with poor ventilation, insect infestation, and mold, among other potential health threats. In May, two people were fatally shot there.

Children who witness violence can develop anxiety, depression, and other disorders, said Charles Moore, director of the Urban Health Initiative at Emory University School of Medicine. “They can feel emotional aftershocks,” said Moore, who has visited Atlanta-area hotels.

Closing such hotels, however, can hurt families, given the shortage of affordable housing, the absence of national federal renter protections, and a dearth of places to go, said Terri Lewinson, an associate professor at the Dartmouth Institute for Health Policy and Clinical Practice. Extended-stay hotels do “offer a low-barrier option for families who have no other options,” she said.

To alleviate the housing problem, county officials and nonprofit organizations around the country have been creatively filling the gap. In the Seattle area, for example, King County officials purchased hotels and converted them into affordable housing, said Mark Skinner of the Highland Group.

In metro Atlanta, SPARC and the local United Way’s Motel to Home offer funding to help people transition into an apartment.

In DeKalb County, where Dunaire Elementary School is located, more than a third of the 1,300 homeless students live in hotels, according to Commissioner Ted Terry.

“I hope we can rescue the children,” he said. “It’s not a safe environment for them.”

Advocates who seek to help people living in hotels propose the construction of more affordable housing and stronger protections for renters against eviction. The federal government has failed to invest in repairs needed to maintain current public housing units, and 25-year-old legislation effectively prohibits the construction of new public housing.

It’s also “extremely fast, easy, and cheap” to evict tenants in Georgia, said Taylor Shelton, an associate professor of geosciences at Georgia State University, whose research focuses on social inequalities and urban spaces. “The playing field is tilted heavily toward landlords.”

Under such circumstances, the cycle of poverty is difficult to break, said Jamie Rush, a senior staff attorney at the Southern Poverty Law Center. “Most parents would want their kids in a safe, stable home,” Rush said. “You can’t budget your way out of poverty.”

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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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