CHARLESTON, S.C. — Republican presidential hopeful Nikki Haley will learn how her campaign is resonating with voters after the Jan. 15 Iowa caucuses, the first presidential nominating contest of this election year.

Already, the former South Carolina governor — who became well known as one of the Affordable Care Act’s loudest critics during her tenure in office from 2011 to 2017 — has raised questions about what her presidency could mean for the nation’s health care policy.

“I would be very concerned,” said Sue Berkowitz, policy director and special counsel for the South Carolina Appleseed Legal Justice Center. “South Carolina is at the bottom of so many things in rankings in our country because of a number of the decisions she made while governor.”

While politicians from both parties rallied behind Haley when she urged lawmakers to remove the Confederate battle flag from statehouse grounds following the 2015 church shooting in this coastal city, her politics diverged sharply from those of her Democratic colleagues when it came to most health care issues.

Haley’s campaign did not respond to multiple requests for comment, but statements she’s made during recent debates offer clues about her health care positions.

She has criticized the Biden administration for high federal spending on covid relief and for the number of people on Medicaid, a program she has argued the federal government should give states more flexibility in funding and administering.

She has also emphasized the need to find consensus on banning abortions late in pregnancy. And on Jan. 10, during her heated sound-off with Florida Gov. Ron DeSantis in the final debate before the Iowa caucuses, she reiterated her critical stance on gender-affirming care.

“I have always said that boys need to go into boys’ bathrooms, girls need to go into girls’ bathrooms, that we shouldn’t have any gender transitions before the age of 18,” she said. “Just like we don’t have tattoos before the age of 18, we shouldn’t have gender transformation or puberty blockers.”

On the campaign trail, she’s addressed reforming Medicare and Social Security. But her tenure as governor, which overlapped with several tumultuous years of national health care reform, offers an even clearer picture of how a Haley presidency might look.

Former South Carolina Medicaid Director Anthony Keck pointed out that one of her early achievements as governor was fixing a $228 million Medicaid deficit.

“People forget what dire straits the Medicaid program was in when she came into office and how it took us a couple years to right the ship,” said Keck, now executive vice president for system innovation at Ballad Health in Tennessee.

Beyond that, Keck said Haley understood that the cost of health care was “growing faster than most people’s paychecks,” adding that affordability and access were “really important to her.”

As Haley eyes the White House, here’s a recap of her health care record as South Carolina governor, a post she left in 2017 after Trump appointed her as ambassador to the United Nations.

Affordable Care Act

In 2011, Haley convened an advisory committee to decide if South Carolina should build its own health insurance marketplace instead of participating in the federal one established under the Affordable Care Act.

But before the group gathered for its first meeting, Haley wrote in an email to her advisers that the “whole point of this commission should be to figure out how to opt out and how to avoid a federal takeover, NOT create a state exchange,” according to a report published by The Post and Courier.

When that email was made public, then-Sen. Tom Harkin (D-Iowa) requested a federal investigation to find out if Haley had predetermined the outcome of the committee. She was eventually cleared of any wrongdoing.

Throughout her time in office, Haley repeatedly advocated for the repeal and replacement of the ACA, but she has not given a definitive answer on the campaign trail about whether she’d try to repeal the law if elected president, The New York Times has reported.

Medicaid

In 2012, when the U.S. Supreme Court upheld the constitutionality of the ACA and made Medicaid expansion an option for every state, Haley declined to expand it in South Carolina. Christian Soura, one of her former cabinet members, estimated in 2019 that “several hundred” people in the Palmetto State had died because of the decision.

On the presidential campaign trail, Haley’s stance on Medicaid expansion has remained unchanged, even as people who live in nonexpansion states broadly support it, according to KFF polling.

South Carolina remains one of 10 states that have not expanded Medicaid eligibility under the ACA, leaving more than 90,000 residents in a health insurance coverage gap, according to a 2023 KFF report.

Even so, Medicaid enrollment and spending in South Carolina during Haley’s tenure grew substantially, drawing criticism from some conservatives.

In 2012, her administration chose to implement a federal program that automatically issued new Medicaid coverage to children from low-income families based on data from welfare assistance and the Supplemental Nutrition Assistance Program, formerly known as food stamps. A 2013 case study found that the Express Lane Eligibility initiative grew Medicaid enrollment in South Carolina by more than 92,000 children in less than a year and that the simplified process “resulted in large enrollment and retention improvements.”

Haley’s administration was also widely applauded for establishing a coalition of health insurers, hospitals, and health care providers to improve birth outcomes in a state where Medicaid pays for more than 60% of all deliveries. Infant and maternal death rates in South Carolina have long ranked among the worst in the nation.

Recent research suggests, however, that some of the policies Haley’s administration prioritized, such as a home visiting program and a campaign to prevent early elective deliveries, didn’t improve maternal or infant health outcomes.

Abortion

On the one-year anniversary of the U.S. Supreme Court’s Dobbs v. Jackson Women’s Health Organization ruling, which allowed state legislatures to outlaw abortion, Haley called the decision a “victory for life and democracy.”

Her position aligned with a controversial bill she signed into state law in 2016 that banned the procedure in South Carolina 20 weeks after the probable date of fertilization — slightly past the midpoint of a woman’s pregnancy.

When she signed the law, it affected only hospitals because the state’s three outpatient abortion clinics already didn’t administer abortions after 15 weeks of gestation. The bill, which she championed, made exceptions for if the fetus were diagnosed with an “anomaly” and would die or if the mother’s life were threatened. But no exceptions were made for rape or incest.

During the recent debate in Iowa, Haley called herself “unapologetically pro-life.”

“Not because the Republican Party tells me to be, but because my husband is adopted, and I’ve got my two sweet children sitting in front of me, and I had trouble having both of them,” she said. “Our goal should be how do we save as many babies as possible and support as many moms as possible.”

On the campaign trail, Haley has tried to thread the needle between being pro-life and recognizing the difficulty of enacting a national abortion ban. She has spoken of finding areas that are winnable for Republicans, including increasing access to contraception and supporting adoption. That said, Haley indicated she would sign a national abortion ban as president if such a bill reached the Oval Office.

Certificate of Need

During her first term, Haley vetoed more than $1 million from the state budget that had been allocated to administer the health department’s long-standing “certificate of need” program. The program required hospitals and health care providers to apply for permission from the state before building new facilities or purchasing expensive equipment, with the goal of controlling health care costs and avoiding duplication of available health care services.

At the time, Haley called the rules “intensely political” and said they allowed “bureaucratic policymakers” to block health care providers from offering treatment. “We should allow the market to work rather than politics,” she said.

Nevertheless, the state Supreme Court ruled in 2014 that a budget veto wasn’t sufficient to eliminate the regulations.

The South Carolina Legislature ultimately repealed the state’s certificate of need rules last year.

During the Jan 10. debate, Haley said she would eliminate certificate of need across the country. The rules still exist in about two-thirds of states.

Rural Hospitals

During Haley’s second year in the governor’s office, the hospital where she was born in 1972 closed its doors. After a failed attempt to merge with other hospitals in the area, it became financially unfeasible for that hospital in the rural town of Bamberg to remain open.

In 2013, Haley announced her administration would reimburse rural hospitals across the state for all their uncompensated care costs, amounting to tens of millions of dollars over her time in office. The policy is still in effect.

Essentially, hospitals lose money when uninsured patients don’t pay their bills. Federal law offers some support. For example, it requires state Medicaid programs to make “disproportionate share” payments to hospitals that serve large numbers of low-income and uninsured people.

But programs like those don’t necessarily cover all of the losses.

Haley prompted the South Carolina Legislature to support rural hospitals by increasing their disproportionate share payments because, without an infusion of cash, several of them faced the same fate as Bamberg County Memorial Hospital.

“I certainly don’t think it’s a bailout,” Haley told The Post and Courier in 2014. “We’re allowing solid footing for these hospitals to make the changes that they need to make.”

But her plan wasn’t fail-safe. Two more rural hospitals closed during Haley’s tenure as governor.

Vaccine Mandates

As a member of the state House of Representatives in 2007, Haley co-sponsored a bill that would have made the vaccine for HPV, the virus that causes nearly all cases of cervical cancer, mandatory for girls entering seventh grade. It was ultimately killed by evangelical lobbyists, who have historically associated the HPV vaccine with encouraging underage sex, KFF Health News reported.

Several years later, Haley called her support of that bill a mistake.

In 2012, Haley vetoed a bill that would have provided free, voluntary HPV vaccines to seventh graders in South Carolina.

During the pandemic, Haley, whose sister-in-law died from covid, said she received a covid vaccine, though she has said she firmly opposes covid vaccine mandates.

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They all have something in common, aside from a nightmare diagnosis. Their insurance companies, at some point, denied doctor-recommended care through a process called prior authorization — a set of rules, unique to every health insurance plan, requiring preapproval for some tests, procedures and prescriptions. Sometimes it’s called preauthorization; sometimes precertification. Regardless, prior authorization is almost universally despised by doctors and patients. 

In 2021, Medicare Advantage insurers processed an average of 1.5 prior authorization requests for every enrolled patient.

Legislation to regulate prior authorization for Advantage patients has strong support from lawmakers, but a bill hasn’t yet passed Congress. The Centers for Medicare & Medicaid Services is weighing a proposed rule that could help millions more — including anyone enrolled in Medicare Advantage, Medicaid or an Obamacare marketplace policy. 

The CMS rule, if implemented, would require some insurers to automate their prior authorization processes, respond to expedited prior authorization requests within 72 hours and standard requests within seven calendar days, and provide more information when they issue denials. 

But CMS closed the public comment period on the rule 10 months ago and has said nothing since then about when, or if, it will be finalized. “There are no updates at this time,” a CMS spokesperson told me last Friday.

The American Hospital Association issued a statement in October urging CMS to act quickly. Jesse Ehrenfeld, president of the American Medical Association, told KFF Health News on Monday that he hopes the proposed rule, if finalized, would “move the needle a little bit” — but he said it won’t be enough. 

“I think we’re going to have to have regulatory relief from Congress,” said Ehrenfeld, an anesthesiologist. “Unfortunately, I hear from colleagues every week who are just at their wits’ end and it’s frustrating. I see it with my own parents.”

Insurers, he said, “continue to just harass patients, really, to improve their bottom line.” 

David Allen, a spokesperson for AHIP, the insurance industry’s main lobbying group, argued health insurers use prior authorization selectively to ensure “the right care is delivered at the right time in the right setting— and covered at a cost that patients can afford. That’s what prior authorization helps deliver.”

He added: “We make every effort to ease the burden on patients and providers.”

Meanwhile, patients across the country are stuck navigating a system rife with roadblocks, red tape and appeals.

“For them to take weeks — up to months — to provide an authorization is ridiculous,” said Marine Corps veteran Ron Winters, who blames the Department of Veterans Affairs for delaying his cancer treatment. “It doesn’t matter if it’s cancer or not.”

The proposed federal reforms wouldn’t apply to veterans such as Winters who receive their care through Veterans Affairs or the estimated 153 million Americans covered by private, employer-sponsored plans. 

Even so, in anticipation of new regulations, many insurers already have started updating prior authorization processes for their private plans.

“It’s not clear to me that CMS is ‘leading’ the way here, so to speak,” Robert Hartwig, director of the Center for Risk and Uncertainty Management at the Darla Moore School of Business at the University of South Carolina, said in an email. “I do think, however, that CMS sees that widespread adoption of electronic PA processes are on the near-horizon and is willing to use its heft as a major payer to expedite the transition.”

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That’s because, after KFF Health News sent questions to Nix’s insurance company, Blue Cross Blue Shield of Illinois, it retroactively approved $36,000 worth of treatments she thought she owed. Even better, she also learned she would qualify for the infusions moving forward.

Good news all around — except it didn’t last for long. After all, this is the U.S. health care system, where even patients with good insurance aren’t guaranteed affordable care.

To recap: For more than a decade, Nix, of Statesville, North Carolina, has suffered from autoimmune diseases, chronic pain, and fatigue, as well as a condition called trigeminal neuralgia, which is marked by bouts of electric shock-like pain that’s so intense it’s commonly known as the “suicide disease.”

“It is a pain that sends me to my knees,” Nix said in October. “My entire family’s life is controlled by the betrayal of my body. We haven’t lived normally in 10 years.”

Late in 2022, Nix started receiving intravenous immunoglobulin infusions to treat her diseases. She started walking two miles a day with her service dog. She could picture herself celebrating, free from pain, at her daughter’s summer 2024 wedding.

“I was so hopeful,” she said.

But a few months after starting those infusions, she found out that her insurance company wouldn’t cover their cost anymore. That’s when she started “raising Cain about it” on Instagram and Facebook.

You probably know someone like Sally Nix — someone with a chronic or life-threatening illness whose doctor says they need a drug, procedure, or scan, and whose insurance company has replied: No.

Prior authorization was conceived decades ago to rein in health care costs by eliminating duplicative and ineffective treatment. Not only does overtreatment waste billions of dollars every year, but doctors acknowledge it also potentially harms patients.

However, critics worry that prior authorization has now become a way for health insurance companies to save money, sometimes at the expense of patients’ lives. KFF Health News has heard from hundreds of people in the past year relating their prior authorization horror stories.

When we first met Nix, she was battling her insurance company to regain authorization for her infusions. She’d been forced to pause her treatments, unable to afford $13,000 out-of-pocket for each infusion.

Finally, it seemed like months of her hard work had paid off. In July, Nix was told by staff at both her doctor’s office and her hospital that Blue Cross Blue Shield of Illinois would allow her to restart treatment. Her balance was marked “paid” and disappeared from the insurer’s online portal.

But the day after the KFF Health News story was published, Nix said, she learned the message had changed. After restarting treatment, she received a letter from the insurer saying her diagnoses didn’t actually qualify her for the infusions. It felt like health insurance whiplash.

“They’re robbing me of my life,” she said. “They’re robbing me of so much, all because of profit.”

Dave Van de Walle, a spokesperson for Blue Cross Blue Shield of Illinois, said the company would not discuss individual patients’ cases.

“Prior authorization is often a requirement for certain treatments,” Van de Walle said in a written statement, “and BCBSIL administers benefits according to medical policy and the employer’s benefit.”

But Nix is a Southern woman of the “Steel Magnolia” variety. In other words, she’s not going down without a fight.

In September, she called out her insurance company’s tactics in a Change.org campaign that has garnered more than 21,000 signatures. She has also filed complaints against her insurance company with the U.S. Department of Health and Human Services, U.S. Department of Labor, Illinois Department of Insurance, and Illinois attorney general.

Even so, Nix said, she feels defeated.

Not only is she still waiting for prior authorization to restart her immunoglobulin infusions, but her insurance company recently required Nix to secure preapproval for another treatment — routine numbing injections she has received for nearly 10 years to treat the nerve pain caused by trigeminal neuralgia.

“It is reprehensible what they’re doing. But they’re not only doing it to me,” said Nix, who is now reluctantly taking prescription opioids to ease her pain. “They’re doing it to other patients. And it’s got to stop.”

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“This is bad,” the 66-year-old Durant, Oklahoma, resident remembered his urologist saying. Winters braced for the fight of his life.

Little did he anticipate, however, that he wouldn’t be waging war only against cancer. He also was up against the Department of Veterans Affairs, which Winters blames for dragging its feet and setting up obstacles that have delayed his treatments.

Winters didn’t undergo cancer treatment at a VA facility. Instead, he sought care from a specialist through the Veterans Health Administration’s Community Care Program, established in 2018 to enhance veterans’ choices and reduce their wait times. But he said the prior authorization process was a prolonged nightmare.

“For them to take weeks — up to months — to provide an authorization is ridiculous,” Winters said. “It doesn’t matter if it’s cancer or not.”

After his initial diagnosis, Winters said, he waited four weeks for the VA to approve the procedure that allowed his urologic oncologist at the University of Texas Southwestern Medical Center in Dallas to remove some of the cancer. Then, when he finished chemotherapy in March, he was forced to wait another month while the VA considered approving surgery to remove his bladder. Even routine imaging scans that Winters needs every 90 days to track progress require preapproval.

In a written response, VA press secretary Terrence Hayes acknowledged that a “delay in care is never acceptable.” After KFF Health News inquired about Winters’ case, the VA began working with him to get his ongoing care authorized.

“We will also urgently review this matter and take steps to ensure that it does not happen again,” Hayes told KFF Health News.

Prior authorization isn’t unique to the VA. Most private and federal health insurance programs require patients to secure preapprovals for certain treatments, tests, or prescription medications. The process is intended to reduce spending and avoid unnecessary, ineffective, or duplicative care, although the degree to which companies and agencies set these rules varies.

Insurers argue prior authorization makes the U.S. health care system more efficient by cutting waste — theoretically a win for patients who may be harmed by excessive or futile treatment. But critics say prior authorization has become a tool that insurers use to restrict or delay expensive care. It’s an especially alarming issue for people diagnosed with cancer, for whom prompt treatment can mean the difference between life and death.

“I’m interested in value and affordability,” said Fumiko Chino, a member of the Affordability Working Group for the Memorial Sloan Kettering Cancer Center. But the way prior authorization is used now allows insurers to implement “denial by delay,” she said.

Cancer is one of the most expensive categories of disease to treat in the U.S., according to the Centers for Disease Control and Prevention. And, in 2019, patients spent more than $16 billion out-of-pocket on their cancer treatment, a report by the National Cancer Institute found.

To make matters worse, many cancer patients have had oncology care delayed because of prior authorization hurdles, with some facing delays of more than two weeks, according to research Chino and colleagues published in JAMA in October. Another recent study found that major insurers issued “unnecessary” initial denials in response to imaging requests, most often in endocrine and gastrointestinal cancer cases.

The federal government is weighing new rules designed to improve prior authorization for millions of people covered by Medicare, Medicaid, and federal marketplace plans. The reforms, if implemented, would shorten the period insurers are permitted to consider prior authorization requests and would also require companies to provide more information when they issue a denial.

In the meantime, patients — many of whom are facing the worst diagnosis of their lives — must navigate a system marked by roadblocks, red tape, and appeals.

“This is cruel and unusual,” said Chino, a radiation oncologist. A two-week delay could be deadly, and that it continues to happen is “unconscionable,” she said.

Chino’s research has also shown that prior authorization is directly related to increased anxiety among cancer patients, eroding their trust in the health care system and wasting both the provider’s and the patient’s time.

Leslie Fisk, 62, of New Smyrna Beach, Florida, was diagnosed in 2021 with lung and brain cancer. After seven rounds of chemotherapy last year, her insurance company denied radiation treatment recommended by her doctors, deeming it medically unnecessary.

“I remember losing my mind. I need this radiation for my lungs,” Fisk said. After fighting Florida Health Care Plans’ denial “tooth and nail,” Fisk said, the insurance company relented. The insurer did not respond to requests for comment.

Fisk called the whole process “horribly traumatic.”

“You have to navigate the most complicated system on the planet,” she said. “If you’re just sitting there waiting for them to take care of you, they won’t.”

A new KFF report found that patients who are covered by Medicaid appear to be particularly impacted by prior authorization, regardless of their health concerns. About 1 in 5 adults on Medicaid reported that their insurer had denied or delayed prior approval for a treatment, service, visit, or drug — double the rate of adults with Medicare.

“Consumers with prior authorization problems tend to face other insurance problems,” such as trouble finding an in-network provider or reaching the limit on covered services, the report noted. They are also “far more likely to experience serious health and financial consequences compared to people whose problems did not involve prior authorization.”

In some cases, patients are pushing back.

In November, USA Today reported that Cigna admitted to making an error when it denied coverage to a 47-year-old Tennessee woman as she prepared to undergo a double-lung transplant to treat lung cancer. In Michigan, a former health insurance executive told ProPublica that the company had “crossed the line” in denying treatment for a man with lymphoma. And Blue Cross and Blue Shield of Louisiana “met its match” when the company denied a Texas trial lawyer’s cancer treatment, ProPublica reported in November.

Countless others have turned to social media to shame their health insurance companies into approving prior authorization requests. Legislation has been introduced in at least 30 states — from California to North Carolina — to address the problem.

Back in Oklahoma, Ron Winters is still fighting. According to his wife, Teresa, the surgeon said if Ron could have undergone his operation sooner, they might have avoided removing his bladder.

In many ways, his story echoes the national VA scandal from nearly a decade ago, in which veterans across the country were languishing — some even dying — as they waited for care.

In 2014, for example, CNN reported on veteran Thomas Breen, who was kept waiting for months to be seen by a doctor at the VA in Phoenix. He died of stage 4 bladder cancer before the appointment was scheduled.

Winters’ cancer has spread to his lungs. His diagnosis has advanced to stage 4.

“Really, nothing has changed,” Teresa Winters said. “The VA’s processes are still broken.”

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

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

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

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

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

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

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

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

‘Moving in the Wrong Direction’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“They don’t listen,” she said.

‘Using Their Voice’

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

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

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

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

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

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

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

New Research

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

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

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

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

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

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

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

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

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

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

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

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

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

‘Extra Bad for Black Women’

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

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

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

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

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

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

Davis reached midwife Nicole Lavallee by phone.

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

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

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

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

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Nix has struggled with a combination of autoimmune diseases since 2011. Brain and spinal surgeries didn’t ease her symptoms. Nothing worked, she said, until she started intravenous immunoglobulin infusions late last year. Commonly called IVIG, the treatment bolsters her compromised immune system with healthy antibodies from other people’s blood plasma.

“IVIG turned out to be my great hope,” she said.

That’s why, when Nix’s health insurer started denying payment for the treatment, she turned to Facebook and Instagram to vent her outrage.

“I was raising Cain about it,” said Nix, 53, of Statesville, North Carolina, who said she was forced to pause treatment because she couldn’t afford to pay more than $13,000 out of pocket every four weeks. “There are times when you simply must call out wrongdoings,” she wrote on Instagram. “This is one of those times.”

Prior authorization is a common cost-cutting tool used by health insurers that requires patients and doctors to secure approval before moving forward with many tests, procedures, and prescription medications. Insurers say the process helps them control costs by preventing medically unnecessary care. But patients say the often time-consuming and frustrating rules create hurdles that delay or deny access to the treatments they need. In some cases, delays and denials equal death, doctors say.

That’s why desperate patients like Nix — and even some physicians — say they have turned to publicly shaming insurance companies on social media to get tests, drugs, and treatments approved.

“Unfortunately, this has become a routine practice for us to resort to if we don’t get any headway,” said Shehzad Saeed, a pediatric gastroenterologist at Dayton’s Children’s Hospital in Ohio. In March, he tweeted a photo of an oozing skin rash, blaming Anthem for denying the biologic treatment his patient needed to ease her Crohn’s disease symptoms.

In July, Eunice Stallman, a psychiatrist based in Idaho, joined X, formerly known as Twitter, for the first time to share how her 9-month-old daughter, Zoey, had been denied prior authorization for a $225 pill she needs to take twice a day to shrink a large brain tumor. “This should not be how it’s done,” Stallman said.

The federal government has proposed ways to reform prior authorization that would require insurance companies to provide more transparency about denials and to speed up their response times. If finalized, those federal changes would be implemented in 2026. But even then, the rules would apply only to some categories of health insurance, including Medicare, Medicare Advantage, and Medicaid plans, but not employer-sponsored health plans. That means roughly half of all Americans wouldn’t benefit from the changes.

The 2010 Patient Protection and Affordable Care Act prohibits health insurance plans from denying or canceling coverage to patients due to their preexisting conditions. AHIP, an industry trade group formerly called America’s Health Insurance Plans, did not respond to a request for comment.

But some patient advocates and health policy experts question whether insurers are using prior authorization as “a possible loophole” to this prohibition, as a way of denying care to patients with the highest health care costs, explained Kaye Pestaina, a KFF vice president and the co-director of its Program on Patient and Consumer Protections.

“They take in premiums and don’t pay claims. That’s how they make money,” said Linda Peeno, a health care consultant and retired Kentucky physician who was employed as a medical reviewer by Humana in the 1980s and later became a whistleblower. “They just delay and delay and delay until you die. And you’re absolutely helpless as a patient.”

But there’s reason to hope things may get marginally better. Some major insurers are voluntarily revamping their prior authorization rules to ease preapproval mandates for doctors and patients. And many states are passing laws to rein in the use of prior authorization.

“Nobody is saying we should get rid of it entirely,” said Todd Askew, senior vice president for advocacy at the American Medical Association, in advance of the group’s annual meeting in June. “But it needs to be right-sized, it needs to be simplified, it needs to be less friction between the patient and accessing their benefits.”

Customers are increasingly using social media to air their complaints across all industries, and companies are paying attention. Nearly two-thirds of complainants reported receiving some sort of response to their online post, according to the 2023 “National Consumer Rage Survey,” conducted by Customer Care Measurement & Consulting in collaboration with Arizona State University.

Some research suggests companies are better off engaging with unhappy customers offline, rather than responding to public social media posts. But many patients and doctors believe venting online is an effective strategy, though it remains unclear how often this tactic works in reversing prior authorization denials.

“It’s not even a joke. The fact that that’s how we’re trying to get these medications is just sad,” said Brad Constant, an inflammatory bowel disease specialist who has published research on prior authorization. His work found that prior authorizations are associated with an increased likelihood that children with inflammatory bowel disease will be hospitalized.

Saeed said the day after he posted the picture of the skin rash, the case was marked for a peer-to-peer review, meaning the prior authorization denial would get a closer look by someone at the insurance company with a medical background. Eventually, the biologic medicine Saeed’s patient needed was approved.

Stallman, who is insured through her employer, said she and her husband were prepared to pay out of pocket if Blue Cross of Idaho didn’t reverse the denial for the drug Zoey needed.

Bret Rumbeck, a spokesperson for the insurer, said Zoey’s medication was approved on July 14 after the company consulted an outside specialist and obtained more information from Zoey’s doctor.

Stallman posted details about the ordeal online only after the insurer approved the drug, in part, she said, to prevent them from denying the treatment again when it comes up for a 90-day insurance review in October. “The power of the social media has been huge,” she said.

Nix had been insured by Blue Cross Blue Shield of Illinois through her husband’s employer for almost two decades. Dave Van de Walle, a spokesperson for the company, did not specifically address Nix’s case. But in a prepared statement, the company said it provides administrative services for many large employers who design and fund their own health insurance plans.

Nix said an “escalation specialist” from the insurance company reached out after she posted her complaints on social media, but the specialist couldn’t help.

Then, in July, after KFF Health News contacted Blue Cross Blue Shield of Illinois, Nix logged in to the insurer’s online portal and found that $36,000 of her outstanding claims had been marked “paid.” No one from the company had contacted her to explain why or what had changed. She also said she was informed by her hospital that the insurer will no longer require her to obtain prior authorization before her infusions, which she restarted in late July.

“I’m thrilled,” she said. But “it just should never have happened this way.”

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Although Callen isn’t commonly considered a household name, visitors passing through the new $120 million International African American Museum that opened this week will learn about her work.

The Callen display serves as both a celebration of Black achievement in medicine and a reminder that the origins of modern-day health disparities are rooted in history and racism. More than 100 years after Callen launched her midwifery career, South Carolina remains one of the deadliest states for Black mothers and babies and continues to battle troubling health inequities.

“We want to constantly cause people to recognize that there isn’t that much distance between past and present,” said Felice Knight, director of education at the new museum, which was more than 20 years in the making.

The galleries span centuries of trauma and triumph. But what sets this museum apart from other sites dedicated to Black history is its location. It is built on Gadsden’s Wharf — where tens of thousands of enslaved Africans first stepped foot in America after their capture and two-month transport across the Atlantic Ocean.

“That fact alone makes it probably the most significant landing spot for Africans in North America,” said Nic Butler, a historian for the Charleston County Public Library.

During the two years leading up to 1808, when the importation of enslaved people from foreign countries to the United States became a federal crime, it’s likely more Africans were sold into slavery at Gadsden’s Wharf than at any other site in America, Butler said. Other states had already made the importation of slaves from Africa illegal; South Carolina was the last holdout.

“It was peak madness of the African slave trade in North America,” he said, adding that the health of enslaved people at Gadsden’s Wharf “totally deteriorated” during those years.

Once in Charleston, Africans died in such large numbers from disease, exposure to cold, malnutrition, and physical trauma, Butler said, that local lawmakers passed an ordinance in 1805 establishing fines for anyone caught dumping the bodies of Black people into Charleston Harbor.

A line can be drawn between what transpired at Gadsden’s Wharf more than 200 years ago and health outcomes observed among Black Americans today, historians and health care providers say.

Thaddeus Bell, a North Charleston family physician and founder of the nonprofit Closing the Gap in Health Care, attended the museum’s groundbreaking. When he visited Gadsden’s Wharf, he said, he couldn’t help but think of his Black patients, many of whom suffer disproportionately from cancer, cardiovascular disease, and diabetes.

Research published in JAMA last month found that Black people in the U.S. experienced 1.63 million excess deaths from 1999 to 2020, representing 80 million years of potential life lost, compared with white Americans. African Americans today have higher infant, maternal, and cancer mortality rates, and overall mortality rates, compared with white Americans, according to KFF.

“You think about all of the health issues that Black people did not get the appropriate care for, all of the racist doctors we had to deal with,” Bell said. He said he wished museum leaders had done more to focus on health disparities. “The medical system was just stacked against us. It’s just heartbreaking.”

It’s common for historians who study health disparities to link current health outcomes to the past, said Kevin McQueeney, an assistant professor of history at Nicholls State University in Louisiana and author of “A City Without Care: 300 Years of Racism, Health Disparities, and Health Care Activism in New Orleans.”

McQueeney cited research in his book estimating huge numbers of Africans captured in their homeland died from disease or trauma before ever boarding a slave ship. Up to 20% of those being transported died during the Middle Passage, he said. Then, thousands more men, women, and children who’d survived up to the point of being sold would die within the first 18 months of arriving in America. Those who didn’t die would likely suffer from a variety of health ailments related to respiratory illness, malnutrition, and physical injury for the rest of their lives, he said.

Health disparities have persisted over generations for a variety of reasons, including poverty, racism, and genetics. “In a lot of ways, these are the legacies of slavery,” McQueeney said.

Museum architects designed the building and gardens with this trauma in mind. Small, quiet rooms near the main gallery allow visitors to sit and privately process their grief. A sign in the memorial garden designates the site as a “sacred space” — an acknowledgment that the experience of visiting Gadsden’s Wharf may be difficult, even traumatic, for some people.

“I want people to feel the sorrow, the pain, the burden of the history of the site,” said Walter Hood, a California landscape architect whose studio designed the outdoor space. At the same time, he said, he doesn’t want visitors to consider Gadsden’s Wharf a memorial to the dead.

“It’s almost like Plymouth Rock when you think about it. It’s a place of arrival,” he said. “We are still here.”

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CHARLESTON, S.C. — Melanie Gray Miller, a 30-year-old physician, wiped away tears as she described the isolation she felt after losing a beloved patient.

“It was at the end of a night shift, when it seems like bad things always happen,” said Miller, who is training to become a pediatrician.

The infant had been sick for months in the Medical University of South Carolina’s pediatric intensive care unit and the possibility that he might not improve was obvious, Miller recalled during an April meeting with physicians and hospital administrators. But the suddenness of his death still caught her off guard.

“I have family and friends that I talk to about things,” she said. “But no one truly understands.”

Doctors don’t typically take time to grieve at work. But during that recent meeting, Miller and her colleagues opened up about the insomnia, emotional exhaustion, trauma, and burnout they experienced from their time in the pediatric ICU.

“This is not a normal place,” Grant Goodrich, the hospital system’s director of ethics, said to the group, acknowledging an occupational hazard the industry often downplays. “Most people don’t see kids die.”

The recurring conversation, scheduled for early-career doctors coming off monthlong pediatric ICU rotations, is one way the hospital helps staffers cope with stress, according to Alyssa Rheingold, a licensed clinical psychologist who leads its resiliency program.

“Often the focus is to teach somebody how to do yoga and take a bath,” she said. “That’s not at all what well-being is about.”

Burnout in the health care industry is a widespread problem that long predates the covid-19 pandemic, though the chaos introduced by the coronavirus’s spread made things worse, physicians and psychologists said. Health systems across the country are trying to boost morale and keep clinicians from quitting or retiring early, but the stakes are higher than workforce shortages.

Rates of physician suicide, partly fueled by burnout, have been a concern for decades. And while burnout occurs across medical specialties, some studies have shown that primary care doctors, such as pediatricians and family physicians, may run a higher risk.

“Why go into primary care when you can make twice the money doing something with half the stress?” said Daniel Crummett, a retired primary care doctor who lives in North Carolina. “I don’t know why anyone would go into primary care.”

Doctors say they are fed up with demands imposed by hospital administrators and health insurance companies, and they’re concerned about the notoriously grueling shifts assigned to medical residents during the early years of their careers. A long-standing stigma keeps physicians from prioritizing their own mental health, while their jobs require them to routinely grapple with death, grief, and trauma. The culture of medicine encourages them to simply bear it.

“Resiliency is a cringe word for me,” Miller said. “In medicine, we’re just expected to be resilient 24/7. I don’t love that culture.”

And though the pipeline of physicians entering the profession is strong, the ranks of doctors in the U.S. aren’t growing fast enough to meet future demand, according to the American Medical Association. That’s why burnout exacerbates workforce shortages and, if it continues, may limit the ability of some patients to access even basic care. A 2021 report published by the Association of American Medical Colleges projects the U.S. will be short as many as 48,000 primary care physicians by 2034, a higher number than any other single medical specialty.

A survey published last year by The Physicians Foundation, a nonprofit focused on improving health care, found more than half of the 1,501 responding doctors didn’t have positive feelings about the current or future state of the medical profession. More than 20% said they wanted to retire within a year.

Similarly, in a 2022 AMA survey of 11,000 doctors and other medical professionals, more than half reported feeling burned out and indicated they were experiencing a great deal of stress.

Those numbers appear to be even higher in primary care. Even before the pandemic, 70% of primary care providers and 89% of primary care residents reported feelings of burnout.

“Everyone in health care feels overworked,” said Gregg Coodley, a primary care physician in Portland, Oregon, and author of the 2022 book “Patients in Peril: The Demise of Primary Care in America.”

“I’m not saying there aren’t issues for other specialists, too, but in primary care, it’s the worst problem,” he said.

The high level of student debt most medical school graduates carry, combined with salaries more than four times as high as the average, deter many physicians from quitting medicine midcareer. Even primary care doctors, whose salaries are among the lowest of all medical specialties, are paid significantly more than the average American worker. That’s why, instead of leaving the profession in their 30s or 40s, doctors often stay in their jobs but retire early.

“We go into medicine to help people, to take care of people, to do good in the world,” said Crummett, who retired from the Duke University hospital system in 2020 when he turned 65.

Crummett said he would have enjoyed working until he was 70, if not for the bureaucratic burdens of practicing medicine, including needing to get prior authorization from insurance companies before providing care, navigating cumbersome electronic health record platforms, and logging hours of administrative work outside the exam room.

“I enjoyed seeing patients. I really enjoyed my co-workers,” he said. “The administration was certainly a major factor in burnout.”

Jean Antonucci, a primary care doctor in rural Maine who retired from full-time work at 66, said she, too, would have kept working if not for the hassle of dealing with hospital administrators and insurance companies.

Once, Antonucci said, she had to call an insurance company — by landline and cellphone simultaneously, with one phone on each ear — to get prior authorization to conduct a CT scan, while her patient in need of an appendectomy waited in pain. The hospital wouldn’t conduct the scan without insurance approval.

“It was just infuriating,” said Antonucci, who now practices medicine only one day a week. “I could have kept working. I just got tired.”

Providers’ collective exhaustion is a crisis kept hidden by design, said Whitney Marvin, a pediatrician who works in the pediatric ICU at the Medical University of South Carolina. She said hospital culture implicitly teaches doctors to tamp down their emotions and to “keep moving.”

“I’m not supposed to be weak, and I’m not supposed to cry, and I’m not supposed to have all these emotions, because then maybe I’m not good enough at my job,” said Marvin, describing the way doctors have historically thought about their mental health.

This mentality prevents many doctors from seeking the help they need, which can lead to burnout — and much worse. An estimated 300 physicians die by suicide every year, according to the American Foundation for Suicide Prevention. The problem is particularly pronounced among female physicians, who die by suicide at a significantly higher rate than women in other professions.

A March report from Medscape found, of more than 9,000 doctors surveyed, 9% of male physicians and 11% of female physicians said they have had suicidal thoughts. But the problem isn’t new, the report noted. Elevated rates of suicide among physicians have been documented for 150 years.

“Ironically, it’s happening to a group of people who should have the easiest access to mental health care,” said Gary Price, a Connecticut surgeon and president of The Physicians Foundation.

But the reluctance to seek help isn’t unfounded, said Corey Feist, president of the Dr. Lorna Breen Heroes’ Foundation.

“There’s something known in residency as the ‘silent curriculum,’” Feist said in describing an often-unspoken understanding among doctors that seeking mental health treatment could jeopardize their livelihood.

Feist’s sister-in-law, emergency room physician Lorna Breen, died by suicide during the early months of the pandemic. Breen sought inpatient treatment for mental health once, Feist said, but feared that her medical license could be revoked for doing so.

The foundation works to change laws across the country to prohibit medical boards and hospitals from asking doctors invasive mental health questions on employment or license applications.

“These people need to be taken care of by us, because really, no one’s looking out for them,” Feist said.

In Charleston, psychologists are made available to physicians during group meetings like the one Miller attended, as part of the resiliency program.

But fixing the burnout problem also requires a cultural change, especially among older physicians.

“They had it worse and we know that. But it’s still not good,” Miller said. “Until that changes, we’re just going to continue burning out physicians within the first three years of their career.”

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BAMBERG, S.C. — Years before the Bamberg County Hospital closed in 2012, and the next-closest hospital in neighboring Barnwell shut its doors in 2016, those facilities had stopped delivering babies.

These days, there’s not even an ultrasound machine in this rural county 60 miles south of Columbia, much less an obstetrician. Pregnant women here are left with few options for care.

Federally qualified health centers offer prenatal services in nearby Fairfax and Barnwell, but only when a pregnancy is uncomplicated and only through about 34 weeks of gestation.

During the final weeks of pregnancy, women must transfer their care to the nearest obstetrician, often in Orangeburg, which can be 20 miles away or more, depending on where they live in Bamberg County. Some women travel farther to hospitals in Aiken or Beaufort, where health outcomes are better.

“Most of our women are driving an hour or more from their homes to an OB provider,” said Tracy Golden, a doula and senior program manager for the South Carolina Office of Rural Health.

Although the regional hospital in the city of Orangeburg delivers babies, the birth outcomes in the county are awful by any standard. In 2021, nearly 3% of all Black infants in Orangeburg County died before their 1st birthday.

Nationally, the average is about 1% for Black infants and less than 0.5% for white infants.

Meanwhile, Orangeburg County’s infant mortality rate for babies of all races is the highest in South Carolina, according to the latest data published by the South Carolina Department of Health and Environmental Control.

By 2030, the federal government wants infant mortality to fall to 5 or fewer deaths per 1,000 live births. According to annual data compiled by the Centers for Disease Control and Prevention, 16 states have already met or surpassed that goal, including Nevada, New York, and California. But none of those states are in the South, where infant mortality is by far the highest in the country, with Mississippi’s rate of 8.12 deaths per 1,000 live births ranking worst.

Even in those few Southern states where infant mortality rates are inching closer to the national average, the gap between death rates of Black and white babies is vast. In Florida and North Carolina, for example, the Black infant mortality rate is more than twice as high as it is for white babies. A new study published in JAMA found that over two decades Black people in the U.S. experienced more than 1.6 million excess deaths and 80 million years of life lost because of increased mortality risk relative to white Americans. The study also found that infants and older Black Americans bear the brunt of excess deaths and years lost.

That makes Black infant mortality in the South a complex regional crisis that should alarm everyone, not just future parents, said Georgina Dukes-Harris, senior director for social care at Unite Us, a national technology company focused on societal needs. Birth outcomes for mothers and infants are a leading indicator of population well-being and they run much deeper than health care: They reflect politics. They’re a direct product of generational poverty and racism. They reveal our priorities, Dukes-Harris said.

Often, babies die under circumstances that states, communities, and parents can help control, like making sure infants don’t suffocate in beds or in unsafe cribs, or extending health coverage so that young women can afford to see a doctor before they become pregnant. In many of these respects, the South is failing.

“This is something that has to change,” Dukes-Harris said.

‘An Urgent Problem’ With No Easy Solution

Public health officials are still trying to parse the long-term impact of the covid-19 pandemic, but infant death rates in South Carolina were higher than the national average long before the health care landscape changed in 2020. And a report published by the South Carolina Department of Health and Environmental Control in April shows the rate for non-Hispanic Black babies — who died at a rate nearly 2½ times that of non-Hispanic white infants in South Carolina in 2021 — is growing worse. The death rate among infants born to Black mothers in the state increased by nearly 40% from 2017 to 2021.

“That’s just not acceptable,” said Edward Simmer, director of the South Carolina health department. “It’s absolutely an urgent problem to me.”

It’s a problem, though, without an apparent solution. Multimillion-dollar programs to improve South Carolina’s numbers over the past decade have failed to move the needle. To make things more complicated, separate state agencies have reached different conclusions about the leading cause of infant death.

The state Department of Health and Human Services — which administers Medicaid, the health coverage program for low-income residents, and pays for more than half of all births in South Carolina — claims accidental deaths were the No. 1 reason babies covered by Medicaid died from 2016 to 2020, according to Medicaid spokesperson Jeff Leieritz.

But the state health department, where all infant death data is housed, reported birth defects as the top cause for the past several years. Accidental deaths ranked fifth among all causes in 2021, according to the 2021 health department report. All but one of those accidental infant deaths were attributed to suffocation or strangulation in bed.

Meanwhile, infant mortality is a topic that continues to get little, if any, attention, especially in the South.

A group called the South Carolina Birth Outcomes Initiative meets regularly to talk strategy, but this consortium of the state’s top doctors, nurses, health insurers, and hospital leaders can’t solve fundamental problems, like teaching parents safe sleep habits or connecting all pregnant women to basic prenatal care. According to the Medicaid agency, nearly half of Medicaid-enrolled babies who died before their 1st birthday in 2021 were born to mothers who received no prenatal care.

“There’s good work going on. It’s just in little patches. It’s just not spread out enough to change our overall numbers,” said Rick Foster, a retired physician and former chairman of one of the Birth Outcomes Initiative’s working groups.

Expanding Access to Maternal Care

South Carolina and several other states recently extended postpartum Medicaid coverage for women who give birth, which means their coverage remains in place for one year after delivery. Historically, Medicaid coverage was cut off 60 days after having a baby.

Some experts believe expanding Medicaid coverage to single, working adults who aren’t pregnant and don’t have children — something most Southern states have failed to do — would also help curtail infant deaths. A woman who is healthy when heading into pregnancy is more likely to give birth to a healthy baby because the health of the mother correlates to the health of the infant. But many women don’t qualify for Medicaid coverage until they become pregnant.

Even when they become pregnant and are newly eligible for Medicaid, it isn’t unusual for women in South Carolina to put off seeing a doctor until the third trimester, physicians told KFF Health News. These women can’t afford to take time off work, can’t find child care, or don’t have a car, among other reasons.

Telehealth could improve access if the state’s broadband network were better, said Simmer, the state health department director. The department could also invest in a fleet of mobile vans that provide prenatal care. Each costs just under $1 million, he said. Ultimately, South Carolina needs more doctors willing to practice in rural areas. Fourteen of its 46 counties lack a single OB-GYN, Simmer said.

“We don’t have providers where we need them,” he said. To that end, he added, the state might consider using student loan forgiveness programs as an incentive for new medical school graduates to practice in rural areas of the state, where obstetricians are scarce. Meanwhile, two programs aimed at improving infant mortality in South Carolina, which were backed by millions of dollars in public and private funding over the past decade, were unsuccessful in hitting the goal.

The Nurse-Family Partnership, for example, which pairs expectant South Carolina mothers with nurses for at-home visits, didn’t have a statistically significant effect on birth outcomes, according to an analysis of the multiyear project, published by the Harvard T.H. Chan School of Public Health.

CenteringPregnancy, a separate program that offers small-group prenatal education to pregnant women, also failed to improve birth outcomes, said Amy Crockett, a maternal-fetal specialist in Greenville and one of the lead investigators for the state initiative.

Crockett said she returned about $300,000 in grant funding to the Duke Endowment, a nonprofit that funds health, faith, and education initiatives in the Carolinas, because the evidence to support expanding CenteringPregnancy projects in those states simply wasn’t there.

“It’s not the silver bullet we thought it would be,” Crockett said, noting that the pandemic also disrupted the work. “It’s time to move on.”

Angie Truesdale, CEO of the Centering Healthcare Institute, said that CenteringPregnancy has established a presence in 44 states and that many studies have shown it is effective in improving birth outcomes, particularly for Black women.

Birth outcomes experts agreed that racism and poverty lie at the heart of this difficult problem, which disproportionately threatens Black infants and mothers in the rural South. Research shows that white doctors are often prejudiced against Black patients and minimize their concerns and pain.

In South Carolina, the maternal mortality rate increased by nearly 10% from 2018 to 2019, according to the latest data, which found that the risk of pregnancy-related death for Black mothers was 67% higher than for white mothers. Upon review, the state health department determined 80% of those pregnancy-related deaths were preventable.

Disparities related to both infant and maternal deaths deserve urgent attention from both the federal and state governments, said Scott Sullivan, division chief of maternal-fetal medicine at Inova Health System in Northern Virginia. Hospitals also bear a huge responsibility as doctors and health care providers must learn how to fairly and adequately take care of Black women and children.

“The idea that we’re going to solve 400 years of racism in an hour’s worth of bias training is a cruel joke. Systems have to remodel their approach,” Sullivan said. “It’s going to take funding, and it’s going to take a sustained effort.”

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BayCare boasts some of the latest high-tech equipment. Yet, the company said, its $246 million facility that opened here in March doesn’t provide any health care services beyond what patients could receive at a hospital just 2 miles away.

BayCare Wesley Chapel’s luster as the newest hospital in this fast-growing Tampa suburb of 65,000 people won’t last. Another general hospital is on the way — the third within a five-minute drive.

“It’s kind of crazy,” said Pat Firestone, who works at Macy’s in an upscale shopping area close to the hospitals. “It’s good to know there is a hospital nearby, but I’m not sure all of this is needed, especially when other areas lack any hospitals.”

Wesley Chapel is just one scene in a hospital-building boom across Florida unleashed almost four years ago, when the state dropped a requirement that companies obtain government approval to open new hospitals.

Florida is among the states that have abandoned a decades-old regulation meant to keep medical costs in check. The requirement, used nearly nationwide until the 1980s, allowed new hospital construction only if a state issued a “Certificate of Need,” or CON. The process involves would-be hospital builders applying to the state and the state government evaluating need based on criteria such as population growth and existing hospital capacity.

About two-thirds of states still require a CON. But several, including Georgia, Kentucky, and South Carolina, have this year debated whether to scrap or loosen restrictions. West Virginia relaxed its rules in March.

Critics of the CON process say it stifles competition and limits access to care. But the hospital industry often defends the process, which protects facilities from would-be rivals.

In most industries competition drives down prices, but more hospital beds and services can actually boost the cost of patient care as pressure to recoup all that investment spreads through the system.

When there’s excess medical capacity, doctors may overprescribe — for instance, by ordering a pricey CT scan instead of a cheaper X-ray, said Steve Ullmann, a University of Miami health policy professor.

“All that construction has to be paid for somehow,” said Allan Baumgarten, a Minnesota-based consultant who analyzes health care markets.

Competition can also bid up labor costs, which contribute to health costs.

Meanwhile, more hospitals could leave medical teams at any one hospital performing fewer complex procedures and dilute quality, some experts say.

What’s more, as Wesley Chapel shows, new construction doesn’t necessarily favor the areas that need it most. Hospitals tend to follow the money — to relatively affluent markets instead of underserved rural or urban communities.

While dozens of new hospitals are planned for Florida, none are going up between Jacksonville and Pensacola, a more than 300-mile swath of largely rural counties spanning two time zones.

Republican Gov. Ron DeSantis signed a law eliminating Florida’s approval process in 2019. From 2020 through 2022, companies announced plans to build at least 65 hospitals in Florida, according to state data. Many are in South Florida, the Tampa area, and the Orlando area.

In contrast, from 2016 to 2018, the state approved just 20 new hospitals. Florida has about 320 hospitals in all.

Those tallies include not just general “acute care” hospitals but also inpatient facilities specializing in rehabilitation, psychiatric care, and emergency medicine, among others.

The school system for Pasco County, where Wesley Chapel is located, welcomed the new construction. Mary Martin, who oversees benefits for school employees, anticipates it will shorten wait times and give patients more options while strengthening health plans’ hands in price negotiations with hospitals.

“This is a big win for our employees,” Martin said.

Yet, health experts say residents could get stuck with bigger health care bills.

“It’s inflationary to have so many hospitals,” said Linda Quick, former president of the South Florida Hospital & Healthcare Association.

“If you don’t have enough people using it, then the fixed costs have to be made up by the number of people that do,” Quick said.

Patients tend to go where insurers allow and where doctors send them instead of shopping around and comparing prices. When an insurer is footing the bill, a patient may not balk at the cost.

Insurers pass costs to patients by raising premiums and deductibles and restricting coverage by, for example, requiring members to use narrow provider networks, Ullmann said.

In South Carolina, the legislature has debated killing or reforming its CON regulation for years. A state report last year highlighted high costs and long delays that hospital companies experience while seeking state approval. In September 2022, a hospital opened in Fort Mill, outside Charlotte, North Carolina — more than 15 years after it was proposed.

Before Fort Mill’s hospital opened last year, residents often drove 45 minutes for care, according to Fort Mill Mayor Guynn Savage.

The shorter drive will help in emergencies, Savage said.

The South Carolina Senate passed a bill in February that would essentially repeal the CON requirement, but the bill faces an uncertain future in the House.

While South Carolina hospitals favor some relaxation of the regulations, they oppose full repeal.

That irks South Carolina Sen. Larry Grooms, a Republican, who is pushing for full repeal.

Hospital leaders favor retaining the law to protect “their own turf,” Grooms said. “That’s not how capitalism works. That’s not how free markets work.”

The Florida Hospital Association fought efforts to repeal the regulation for new hospitals but acquiesced when it no longer had the votes in an increasingly conservative legislature.

Today, Florida hospital officials say they are merely expanding to keep up with a growing population.

Yet, hospitals are also looking to grow in markets that can yield the highest profits. They tend to avoid building where many people are uninsured or on Medicaid, the government health insurance program for low-income people.

In addition, hospital systems are trying to broaden their geographic footprint, which gives them greater leverage when negotiating reimbursement rates with private insurers. The hospital systems’ increased bargaining power can lead to higher premiums for consumers, said Baumgarten, the Minnesota-based consultant.

BayCare, which owns 15 other hospitals in the Tampa Bay area and central Florida, had opposed efforts to eliminate Florida’s regulation, worried that ending it would allow competing hospitals to enter BayCare’s turf and siphon off its highest-paying patients and scarce staff, said Keri Eisenbeis, BayCare’s senior vice president of corporate relations.

The company, based in Clearwater, Florida, bought property in Wesley Chapel in 2006. It applied to build a hospital here in 2012 but was turned down when the state approved a competing application from Adventist Health System, a hospital chain now called AdventHealth.

BayCare applied again in 2018 and the state granted approval. But AdventHealth appealed the decision, and the appeal threatened to keep the issue in litigation for years. When the state lifted its CON requirements in 2019, BayCare moved forward with its original plan.

In addition, in 2022, Orlando Health unveiled plans to build a 300-bed hospital in Wesley Chapel. Construction has yet to begin. And PAM Health announced plans in January of this year to build a rehabilitation hospital in Wesley Chapel.

Rebecca Schulkowski, BayCare Wesley Chapel president, predicts BayCare patient rooms will fill quickly given the number of young families and retirees moving to new housing developments.

One big challenge Schulkowski faces is hiring enough staff. That includes luring doctors and other health workers to the town instead of just hiring employees away from rival AdventHealth.

Though BayCare argued the town needed more hospital beds, AdventHealth’s Wesley Chapel hospital often has had plenty of empty beds. According to the most recent annual data posted by the state, in 2021 its occupancy rate was 66%.

Even with the state’s growing population, “none of these communities have a shortage of inpatient care,” said Quick, referring to suburban areas like Wesley Chapel. “What we have is a shortage of sick people.”

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.

USE OUR CONTENT

This story can be republished for free (details).