Lauren Sausser, KFF Health News

BRIDGEPORT, W.Va. — By the time Eric Tennant was diagnosed in 2023 with a rare cancer of the bile ducts, the disease had spread to his bones. He weighed 97 pounds and wasn’t expected to survive a year with stage 4 cancer.

Two years later, grueling rounds of chemotherapy have slowed the cancer’s progress, even as it has continued to spread. But chemotherapy has also ravaged Tennant’s body and his quality of life.

Recently, however, the 58-year-old had reason to hope things would improve. Last fall, his wife, Rebecca, learned of a relatively new, noninvasive procedure called histotripsy, which uses targeted ultrasound waves to destroy tumors in the liver. The treatment could extend his life and buy him more downtime between rounds of chemotherapy.

Early this year, Tennant’s oncologist agreed he was a good candidate since the largest tumor in his body is in his liver. But that’s when his family began fighting another adversary: their health insurer, which decided the treatment was “not medically necessary,” according to insurance paperwork.

Health insurers issue millions of denials every year. And like the Tennants, many patients find themselves stuck in a convoluted appeals process marked by long wait times, frustrating customer service encounters, and decisions by medical professionals they’ve never met who may lack relevant training.

Recent federal and state efforts, as well as changes undertaken by insurance companies themselves, have attempted to improve a 50-year-old system that disproportionately burdens some of the sickest patients at the worst times. And yet many doctors complain that insurance denials are worse than ever as the use of prior authorization has ramped up in recent years, reporting by KFF Health News and NBC News found.

When the Tennant family was told histotripsy would cost $50,000 and insurance wouldn’t cover it, they appealed the denial four times.

“It’s a big mess,” said Rebecca Tennant, who described feeling like a pingpong ball, bouncing between the insurer and various health care companies involved in the appeals process.

“There’s literally nothing we can do to get them to change,” she said in an April interview with KFF Health News. “They’re, like, not accountable to anyone.”

While the killing of UnitedHealthcare chief executive Brian Thompson in December incited a fresh wave of public fury about denials, there is almost no hope of meaningful change on the horizon, said Jay Pickern, an assistant professor of health services administration at Auburn University.

“You would think the murder of a major health insurance CEO on the streets of New York in broad daylight would be a major watershed moment,” Pickern said. Yet, once the news cycle died down, “everything went back to the status quo.”

An Unintended Consequence of Health Reform?

Prior authorization varies by plan but often requires patients or their providers to get permission (also called precertification, preauthorization, or preapproval) before filling prescriptions, scheduling imaging, surgery, or an inpatient hospital stay, among other expenses.

The practice isn’t new. Insurers have used prior authorization for decades to limit fraud, prevent patient harm, and control costs. In some cases, it is used to intentionally generate profits for health insurers, according to a 2024 U.S. Senate report. By denying costly care, companies pay less for health care expenses while still collecting premiums.

“At the end of the day, they’re a business and they exist to make money,” said Pickern, who wrote about the negative impacts of prior authorization on patient care for The American Journal of Managed Care.

For most patients, though, the process works seamlessly. Prior authorization mostly happens behind the scenes, almost always electronically, and nearly all requests are quickly, or even instantly, approved.

But the use of prior authorization has also increased in recent years. That’s partly due to the growth of enrollment in Medicare Advantage plans, which rely heavily on prior authorization compared with original Medicare. Some health policy experts also point to the passage of the Affordable Care Act in 2010, which prohibited health insurers from denying coverage to patients with preexisting conditions, prompting companies to find other ways to control costs.

“But we can’t really prove this,” said Kaye Pestaina, director of the Program on Patient and Consumer Protection at KFF, a health information nonprofit that includes KFF Health News. Health insurers haven’t been historically transparent about which services require prior authorization, she said, making it difficult to draw comparisons before and after the passage of the Affordable Care Act.

Meanwhile, many states are looking to overhaul the prior authorization process.

In March, Virginia passed a law that will require health insurers to publicly post a list of health care services and codes for which prior authorization is required. A North Carolina bill would require doctors who review patient appeals to have practiced medicine in the same specialty as the patient’s provider. The West Virginia Legislature passed bills in both 2019 and 2023 requiring insurers to respond to nonurgent authorization requests within five days and more urgent requests within two days, among other mandates.

And in 2014, the South Carolina Department of Health and Human Services temporarily lifted all prior authorization requirements for Medicaid beneficiaries seeking rehabilitative behavioral health services.

Federal rules to modify prior authorization that were introduced by the first Trump administration and finalized by the Biden administration are set to take effect next year, with the aim of streamlining the process, reducing wait times, and improving transparency.

These changes were supported by AHIP, a trade group that represents health insurers.

‘Sick With Little Recourse’

But the new federal rules won’t prevent insurance companies from denying payment for doctor-recommended treatment, and they apply only to some categories of health insurance, including Medicare Advantage and Medicaid. Nearly half the U.S. population is covered by employer-sponsored plans, which remain untouched by the new rules.

For some patients, the stakes couldn’t be higher.

On May 12, Alexander Schrift, 35, died at home in San Antonio, Florida, less than two months after his insurance company refused to cover the cancer drug ribociclib. It’s used to treat breast cancer but has shown promise in treating the same type of brain tumor Schrift was diagnosed with in 2022, according to researchers at the Dana-Farber Cancer Institute in Boston and the Institute of Cancer Research in London.

But Schrift’s insurance company refused to pay. The Right to Try Act, signed by President Donald Trump in 2018, entitles patients with terminal illnesses to try experimental drugs, but it does not obligate insurance companies to pay for them.

In May, Sheldon Ekirch, 30, of Henrico, Virginia, said her parents withdrew money from their retirement savings to pay for treatment denied by her health insurance company.

Ekirch, who was diagnosed with small fiber neuropathy in 2023, was recommended by her doctor to try an expensive blood plasma treatment called intravenous immunoglobulin to ease her near-constant pain. In April, a state agency charged with reviewing insurance denials upheld her insurer’s decision. Out-of-pocket, the treatment may cost her parents tens of thousands of dollars.

“Never in a million years did I think I’d end up here,” Ekirch said, “sick with little recourse.”

Earlier this year, New Jersey congressman Jefferson Van Drew, a Republican, introduced a bill that would eliminate prior authorization altogether. But history suggests that would create new problems.

When South Carolina Medicaid lifted prior authorization for rehabilitative behavioral health services in 2014, the department’s costs for those services skyrocketed from $300,000 to $2 million per week, creating a $54 million budget shortfall after new providers flooded the market. Some providers were eventually referred to the South Carolina Attorney General’s Office for Medicaid fraud investigation. The state Medicaid agency eventually reinstated prior authorization for specific services, spokesperson Jeff Leieritz said.

What happened in South Carolina illustrates a common argument made by insurers: Prior authorization prevents fraud, reduces overspending, and guards against potential harm to patients.

On the other hand, many doctors and patients claim that cost-containment strategies, including prior authorization, do more harm than good.

On Feb. 3, 2024, Jeff Hall of Estero, Florida, became paralyzed from the neck down and spent weeks in a coma after he suddenly developed Guillain-Barré Syndrome. The cause of his illness remains unknown.

Hall, now 51, argued that the Florida Blue health insurance plan he purchased on the federal marketplace hindered his recovery by capping the number of days he was allowed to remain in an acute rehabilitation hospital last year.

Hall said that after he was forced to “step down” to a lower-level nursing facility, his health deteriorated so rapidly within six days that he was sent to the emergency room, placed on a ventilator, and required a second tracheostomy. Hall believes the insurance company’s coverage limits set his recovery back by months — and, ironically, cost the insurer more. His wife, Julie, estimated Jeff’s medical bills have exceeded $5 million, and most of his care has been covered by his insurer.

“Getting better is not always the goal of an insurance company. It’s a business,” Jeff Hall said. “They don’t care.”

In a prepared statement, Florida Blue spokesperson Jose Cano said the company understands “it can be a challenge when a member reaches the limit of their coverage for a specific service or treatment.” He encouraged members affected by coverage limits to contact their health care providers to “explore service and treatment options.”

A ‘Rare and Exceptional’ Reversal

Back in West Virginia, Eric and Rebecca Tennant say they are realistic about Eric’s prognosis.

They never expected histotripsy to cure his cancer. At best, the procedure could buy him more time and might allow him to take an extended break from chemotherapy. That makes it worth trying, they said.

As a safety instructor with the West Virginia Office of Miners’ Health Safety and Training, Eric Tennant is a state employee and is insured by West Virginia’s Public Employees Insurance Agency.

As the Tennants pleaded with the state insurance agency to cover histotripsy, they faced a list of other companies involved in the decision, including UMR, a UnitedHealthcare subsidiary that contracts with West Virginia to manage the public employee plans, and MES Peer Review Services, a Massachusetts company that upheld the insurer’s decision in March, citing that histotripsy is “unproven in this case and is not medically necessary.”

None of their appeals worked. After KFF Health News and NBC News reached out to West Virginia’s Public Employees Insurance Agency with questions for this article, the agency changed its mind, explaining the insurer had consulted with medical experts to further evaluate the case.

“This decision reflects a rare and exceptional situation” and does not represent a change in the Public Employees Insurance Agency’s overall coverage policies,” Director Brent Wolfingbarger said in a prepared statement to KFF Health News.

In a separate prepared statement, UnitedHealthcare spokesperson Eric Hausman said the company sympathizes with “anyone navigating through life-threatening care decisions.”

“Currently, there is no evidence that histotripsy is as effective as alternative treatment options available,” he said in late May, after the earlier insurance denials were reversed, “and its impact on survival or cancer recurrence is unknown.”

MES Peer Review Services did not respond to a request for an interview.

Meanwhile, Rebecca Tennant worries it might be too late. She said her husband was first evaluated for histotripsy in February. But his health has recently taken a turn for the worse. In late May and early June, she said, he spent five days in the hospital after developing heart and lung complications.

Eric Tennant is no longer considered a viable candidate for histotripsy, his wife said, although the Tennants are hopeful that will change if his health improves. Scans scheduled for July will determine whether his cancer has continued to progress. Rebecca Tennant blames her husband’s insurance plan for wasting months of their time.

“Time is precious,” she said. “They know he has stage 4 cancer, and it’s almost like they don’t care if he lives or dies.”

NBC News health and medical unit producer Jason Kane and correspondent Erin McLaughlin contributed to this report.

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

Subscribe to KFF Health News' free Morning Briefing.

This article first appeared on KFF Health News and is republished here under a Creative Commons license.

Carmen Aiken of Chicago made an appointment for an annual physical exam in July 2023, planning to get checked out and complete some blood work.

The appointment was at a family medicine practice run by University of Illinois Health. Aiken said the doctor recommended they undergo a Pap smear, which they hadn’t had in more than a year, and testing for sexually transmitted infections. Aiken, who works for a nonprofit and uses the pronoun they, said they were also encouraged to get the HPV vaccine.

They’d tested positive for HPV in 2019 and eventually cleared the virus but had not received the vaccine to prevent future infections.

“Sounds like a good idea,” Aiken, 37, recalled telling the doctor.

They also needed some lab work done, part of routine monitoring for one prescription. After being examined, Aiken said, they were directed to a different part of the office building to get blood drawn and receive the first dose of the vaccine before leaving.

Then the bill came.

The Medical Procedure

Services at Aiken’s appointment included a pelvic exam, a vaccination, and blood work, checking, in part, glucose levels and liver function.

An annual physical exam typically includes a variety of services, many of which insurers are required to cover under the Affordable Care Act, such as reviewing the patient’s health history, screening for high cholesterol, or performing a Pap smear, a procedure to check the cervix for signs of cancer.

Updating immunizations is also a common, covered service at checkups. The vaccine for HPV, or the human papillomavirus, provides protection against an infection that can cause several types of cancer. Federal health officials recommend being immunized for HPV at age 11 or 12, though the vaccine also can be administered later in life.

The Final Bill

$1,430.13: $1,223.22 for lab services and pathology, plus $206.91 for “professional services,” which included a charge for a 40-minute “High Mdm” outpatient visit — indicating a high level of “medical decision-making” — as well as charges for immunization administration and vaccines.

The Billing Problem: Diagnostic Blood Work With a Hospital Price Tag

Not all services that may be provided as part of an annual physical are paid for by insurance as preventive care.

A patient who needs blood work for a specific medical concern — as Aiken did, for medication monitoring — could be required to pay part of the bill. That’s the case even if the blood work is performed during a checkup alongside preventive services. Some health insurers pay for standard blood work as part of a preventive visit, but that’s not always the case.

Aiken had purchased a health insurance plan on the federal marketplace and said they were confident the visit would be covered at no cost to them.

When they got a bill for more than $1,400, Aiken thought, “How did this happen?” They said they called their insurer, BlueCross BlueShield of Illinois, then filed an appeal for the $1,223.22 amount they owed for lab services after their initial inquiry went nowhere. “Surely this is a misunderstanding.”

But their insurer sided with UI Health’s position that the blood work rendered during the appointment was not preventive. In a letter denying Aiken’s appeal, BlueCross BlueShield of Illinois decided that “the labs were billed correctly as diagnostic.”

Under the plan’s parameters, the insurer determined Aiken remained on the hook for 50% of the cost of outpatient labs performed in a hospital setting.

Dave Van de Walle, a spokesperson for BlueCross BlueShield of Illinois, would not discuss Aiken’s bill with KFF Health News.

Francesca Sacco, a spokesperson for UI Health, said in an emailed statement that Aiken scheduled the appointment for “medication monitoring and to obtain a vaccine.”

“Medication monitoring is not considered a wellness benefit under the Affordable Care Act,” she said.

Sacco also said Aiken’s labs were sent for processing to University of Illinois Hospital, more than a mile away from the family medicine practice.

That left Aiken owing more. Hospitals typically charge much more than physicians’ offices or independent commercial labs for the same tests.

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More from Bill of the Month

The distinction between a preventive visit and a diagnostic one is important for billing purposes: It dictates who’s on the hook for the bill. A preventive visit generally comes at no cost to patients. But a visit for an ongoing medical issue is usually classified as diagnostic, leaving the patient subject to copays and deductibles — or even charged for two separate appointments.

Patients may not notice a difference in the exam room. Much of that nuance is determined by the medical provider and captured on the bill.

Confusion still persists 15 years after the ACA’s preventive services protections took effect, said Sabrina Corlette, a founder and co-director of the Center on Health Insurance Reforms at Georgetown University.

“This is an outrageous bill for what should have been routine care,” Corlette said. “People just don’t have this kind of money lying around.”

The Resolution

After the insurer denied their appeal, they “fell down a hole into despair about it for a while,” Aiken said.

“And then someone really wise was like, ‘You can pay it and then just stop thinking about it.’”

So that’s what Aiken did: “I put it on my credit card.”

UI Health’s Sacco said the hospital system is committed to working with insurers to resolve cost-sharing disputes.

“However, it is the insurance company’s sole discretion whether a service is fully covered or subject to cost sharing,” she said. “In this case, the insurer determined that cost sharing would be applicable to a specific portion of the services provided to the patient. Based on this determination, the patient was billed accordingly by UI Health.”

The experience left its mark on Aiken. Last year, they said, they walked out of an urgent-care visit after a doctor recommended a Pap smear — fearing they’d incur another large bill.

The Takeaway

Delaying or avoiding care can lead to worse outcomes, which is why lawmakers tried to ensure patients generally would pay nothing for preventive services, such as immunizations, under the ACA.

Annual checkups are a key element of preventive care. For instance, most adults who never received the HPV vaccine do not know they are still eligible, so it’s critical to inform them of their options, said Verda Hicks, a gynecologic oncologist based in Kansas City, Missouri.

The vaccine offers protection against nine types of HPV, she said. It also prevents HPV-related cancers in men, so the Centers for Disease Control and Prevention recommends boys receive the immunization, too.

“Get vaccinated,” Hicks said. “We just do not have the same tools for many other cancers.”

Keep in mind that your coverage may vary — some insurance companies won’t cover the cost of the vaccine for some older patients — and the same services may be subject to different cost-sharing rules depending on whether they are conducted for prevention versus diagnosis.

Also, prices can vary depending on where care is delivered and tests are performed. If you need a blood test, ask that your doctor send the requisition to a commercial, in-network lab. Patients may not realize that labs drawn at a clinic may be sent to a hospital for testing, exposing them to greater costs.

There has been a push in Congress to eliminate this price variation through “site-neutral” payment policies. Regardless of location, the price for routine care would be reimbursed at the same amount.

“Site-neutral reforms could potentially have significantly reduced Carmen’s expenses,” said Christine Monahan, an assistant research professor at Georgetown’s Center on Health Insurance Reforms.

Meanwhile, a case before the Supreme Court could upend the health system by eliminating the requirement that insurers cover preventive services like vaccines and annual screenings at no cost to patients. The high court heard oral arguments April 21.

If the justices side with the plaintiffs this term, Georgetown’s Corlette said, “then we all potentially lose access to free, high-value preventive care, and that would be a real shame.”

Bill of the Month is a crowdsourced investigation by KFF Health News and The Washington Post’s Well+Being that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, at the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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 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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This article first appeared on KFF Health News and is republished here under a Creative Commons license.

HENRICO, Va. — Sheldon Ekirch spends a lot of time on hold with her health insurance company.

Sometimes, as the minutes tick by and her frustration mounts, Ekirch, 30, opens a meditation app on her phone. It was recommended by her psychologist to help with the depression associated with a stressful and painful medical disorder.

In 2023, Ekirch was diagnosed with small fiber neuropathy, a condition that makes her limbs and muscles feel as if they’re on fire. Now she takes more than a dozen prescriptions to manage chronic pain and other symptoms, including insomnia.

“I don’t feel like I am the person I was a year and a half ago,” said Ekirch, who was on the cusp of launching her law career before getting sick. “Like, my body isn’t my own.”

Ekirch said specialists have suggested that a series of infusions made from blood plasma called intravenous immunoglobulin — IVIG, for short — could ease, or potentially eradicate, her near-constant pain. But Ekirch’s insurance company has repeatedly denied coverage for the treatment, according to documents provided by the patient.

Patients with Ekirch’s condition don’t always respond to IVIG, but she said she deserves to try it, even though it could cost more than $100,000.

“I’m paying a lot of money for health insurance,” said Ekirch, who pays more than $600 a month in premiums. “I don’t understand why they won’t help me, why my life means so little to them.”

For patient advocates and health economists, cases like Ekirch’s illustrate why prior authorization has become such a chronic pain point for patients and doctors. For 50 years, insurers have employed prior authorization, they say, to reduce wasteful health care spending, prevent unnecessary treatment, and guard against potential harm.

The practice differs by insurance company and plan, but the rules often require patients or their doctors to request permission from the patient’s health insurance company before proceeding with a drug, treatment, or medical procedure.

The insurance industry provides little information about how often prior authorization is used. Transparency requirements established by the federal government to shed light on the use of prior authorization by private insurers haven’t been broadly enforced, said Justin Lo, a senior researcher for the Program on Patient and Consumer Protections at KFF, a health information nonprofit that includes KFF Health News.

Yet it’s widely acknowledged that prior authorization tends to disproportionately impact some of the sickest people who need the most expensive care. And despite bipartisan support to reform the system, as well as recent attempts by health insurance companies to ease the burden for patients and doctors, some tactics have met skepticism.

Some insurers’ efforts to improve prior authorization practices aren’t as helpful as they would seem, said Judson Ivy, CEO of Ensemble Health Partners, a revenue cycle management company.

“When you really dive deep,” he said, these improvements don’t seem to touch the services and procedures, such as CT scans, that get caught up in prior authorization so frequently. “When we started looking into it,” he said, “it was almost a PR stunt.”

The ‘Tipping Point’

When Arman Shahriar’s father was diagnosed with follicular lymphoma in 2023, his father’s oncologist ordered a whole-body PET scan to determine the cancer’s stage. The scan was denied by a company called EviCore by Evernorth, a Cigna subsidiary that makes prior authorization decisions.

Shahriar, an internal medicine resident, said he spent hours on the phone with his father’s insurer, arguing that the latest medical guidelines supported the scan. The imaging request was eventually approved. But his father’s scan was delayed several weeks — and multiple appointments were scheduled, then canceled during the time-consuming process — while the family feared the cancer would continue to spread.

EviCore by Evernorth spokesperson Madeline Ziomek wrote in an emailed statement that incomplete clinical information provided by physicians is a leading cause of such denials. The company is “actively developing new ways to make the submission process simpler and faster for physicians,” Ziomek said.

In the meantime, Shahriar, who often struggles to navigate prior authorization for his patients, accused the confusing system of “artificially creating problems in people’s lives” at the wrong time.

“If families with physicians are struggling through this, how do other people navigate it? And the short answer is, they can’t,” said Shahriar, who wrote about his father’s case in an essay published last year by JAMA Oncology. “We’re kind of reaching a tipping point where we’re realizing, collectively, something needs to be done.”

The fatal shooting of UnitedHealthcare CEO Brian Thompson on a New York City sidewalk in December prompted an outpouring of grief among those who knew him, but it also became a platform for public outrage about the methods insurance companies use to deny treatment.

An Emerson College poll conducted in mid-December found 41% of 18- to 29-year-olds thought the actions of Thompson’s killer were at least somewhat acceptable. In a NORC survey from the University of Chicago conducted in December, two-thirds of respondents indicated that insurance company profits, and their denials for health care coverage, contributed “a great deal/moderate amount” to the killing. Instagram accounts established in support of Luigi Mangione, the 26-year-old Maryland suspect accused of murder and terrorism, have attracted thousands of followers.

“The past several weeks have further challenged us to even more intensely listen to the public narrative about our industry,” Cigna Group CEO David Cordani said during an earnings call on Jan. 30. Cigna is focused on “making prior authorizations faster and simpler,” he added.

The first Trump administration and the Biden administration put forth policies designed to improve prior authorization for some patients by mandating that insurers set up electronic systems and shortening the time companies may take to issue decisions, among other fixes. Hundreds of House Democrats and Republicans signed on to co-sponsor a bill last year that would establish new prior authorization rules for Medicare Advantage plans. In January, Republican congressman Jefferson Van Drew of New Jersey introduced a federal bill to abolish the use of prior authorization altogether.

Meanwhile, many states have passed legislation to regulate the use of prior authorization. Some laws require insurers to publish data about prior authorization denials with the intention of making a confusing system more transparent. Reform bills are under consideration by state legislatures in Hawaii, Montana, and elsewhere. A bill in Virginia approved by the governor March 18 takes effect July 1. Other states, including Texas, have established “gold card” programs that ease prior authorization requirements for some physicians by allowing doctors with a track record of approvals to bypass the rules.

No one from AHIP, an insurance industry lobbying group formerly known as America’s Health Insurance Plans, was available to be interviewed on the record about proposed prior authorization legislation for this article.

But changes wouldn’t guarantee that the most vulnerable patients would be spared from future insurance denials or the complex appeals process set up by insurers. Some doctors and advocates for patients are skeptical that prior authorization can be fixed as long as insurers are accountable to shareholders.

Kindyl Boyer, director of advocacy for the nonprofit Infusion Access Foundation, remains hopeful the system can be improved but likened some efforts to playing “Whac-A-Mole.” Ultimately, insurance companies are “going to find a different way to make more money,” she said.

‘Unified Anger’

In the weeks following Thompson’s killing, UnitedHealthcare was trying to refute an onslaught of what it called “highly inaccurate and grossly misleading information” about its practices when another incident landed the company back in the spotlight.

On Jan. 7, Elisabeth Potter, a breast reconstruction surgeon in Austin, Texas, posted a video on social media criticizing the company for questioning whether one of her patients who had been diagnosed with breast cancer and was undergoing surgery that day needed to be admitted as an inpatient.

The video amassed millions of views.

In the days following her post, UnitedHealthcare hired a high-profile law firm to demand a correction and public apology from Potter. In an interview with KFF Health News, Potter would not discuss details about the dispute, but she stood by what she said in her original video.

“I told the truth,” Potter said.

The facts of the incident remain in dispute. But the level of attention it received online illustrates how frustrated and vocal many people have become about insurance company tactics since Thompson’s killing, said Matthew Zachary, a former cancer patient and the host of “Out of Patients,” a podcast that aims to amplify the experiences of patients.

For years, doctors and patients have taken to social media to shame health insurers into approving treatment. But in recent months, Zachary said, “horror stories” about prior authorization shared widely online have created “unified anger.”

“Most people thought they were alone in the victimization,” Zachary said. “Now they know they’re not.”

Data published in January by KFF found that prior authorization is particularly burdensome for patients covered by Medicare Advantage plans. In 2023, virtually all Medicare Advantage enrollees were covered by plans that required prior authorization, while people enrolled in traditional Medicare were much less likely to encounter it, said Jeannie Fuglesten Biniek, an associate director at KFF’s Program on Medicare Policy. Furthermore, she said, Medicare Advantage enrollees were more likely to face prior authorization for higher-cost services, including inpatient hospital stays, skilled nursing facility stays, and chemotherapy.

But Neil Parikh, national chief medical officer for medical management at UnitedHealthcare, explained prior authorization rules apply to fewer than 2% of the claims the company pays. He added that “99% of the time” UnitedHealthcare members don’t need prior authorization or requests are approved “very, very quickly.”

Recently, he said, a team at UnitedHealthcare was reviewing a prior authorization request for an orthopedic procedure when they discovered the surgeon planned to operate on the wrong side of the patient’s body. UnitedHealthcare caught the mistake in time, he recounted.

“This is a real-life example of why prior authorization can really help,” Parikh said.

Even so, he said, UnitedHealthcare aims to make the process less burdensome by removing prior authorization requirements for some services, rendering instant decisions for certain requests, and establishing a national gold card program, among other refinements. Cigna also announced changes designed to improve prior authorization in the months since Thompson’s killing.

“Brian was an incredible friend and colleague to many, many of us, and we are deeply saddened by his passing,” Parikh said. “It’s truly a sad occasion.”

The Final Denial

During the summer of 2023, Ekirch was working full time and preparing to take the bar exam when she noticed numbness and tingling in her arms and legs. Eventually, she started experiencing a burning sensation throughout her body.

That fall, a Richmond-area neurologist said her symptoms were consistent with small fiber neuropathy, and, in early 2024, a rheumatologist recommended IVIG to ease her pain. Since then, other specialists, including neurologists at the University of Virginia and Virginia Commonwealth University, have said she may benefit from the same treatment.

There’s no guarantee it will work. A randomized controlled trial published in 2021 found pain levels in patients who received IVIG weren’t significantly different from the placebo group, while an older study found patients responded “remarkably well.”

“It’s hard because I look at my peers from law school and high school — they’re having families, excelling in their career, living their life. And most days I am just struggling, just to get out of bed,” said Ekirch, frustrated that Anthem continues to deny her claim.

In a prepared statement, Kersha Cartwright, a spokesperson for Anthem’s parent company, Elevance Health, said Ekirch’s request for IVIG treatment was denied “because it did not meet the established medical criteria for effectiveness in treating small fiber neuropathy.”

On Feb. 17, her treatment was denied by Anthem for the final time. Ekirch said her patient advocate, a nurse who works for Anthem, suggested she reach out to the drug manufacturer about patient charity programs.

“This is absolutely crazy,” Ekirch said. “This is someone from Anthem telling me to plead with a pharmacy company to give me this drug when Anthem should be covering it.”

Her only hope now lies with the Virginia State Corporation Commission Bureau of Insurance, a state agency that resolves prior authorization disputes between patients and health insurance companies. She found out through a Facebook group for patients with small fiber neuropathy that the Bureau of Insurance has overturned an IVIG denial before. In late March, Ekirch was anxiously waiting to hear the agency’s decision about her case.

“I don’t want to get my hopes up too much, though,” she said. “I feel like this entire process, I’ve been let down by it.”

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.

Subscribe to KFF Health News' free Morning Briefing.

This article first appeared on KFF Health News and is republished here under a Creative Commons license.

ORANGEBURG, S.C. — Amari Marsh had just finished her junior year at South Carolina State University in May 2023 when she received a text message from a law enforcement officer.

“Sorry it has taken this long for paperwork to come back,” the officer wrote. “But I finally have the final report, and wanted to see if you and your boyfriend could meet me Wednesday afternoon for a follow up?”

Marsh understood that the report was related to a pregnancy loss she’d experienced that March, she said. During her second trimester, Marsh said, she unexpectedly gave birth in the middle of the night while on a toilet in her off-campus apartment. She remembered screaming and panicking and said the bathroom was covered in blood.

“I couldn’t breathe,” said Marsh, now 23.

The next day, when Marsh woke up in the hospital, she said, a law enforcement officer asked her questions. Then, a few weeks later, she said, she received a call saying she could collect her daughter’s ashes.

At that point, she said, she didn’t know she was being criminally investigated. Yet three months after her loss, Marsh was charged with murder/homicide by child abuse, law enforcement records show. She spent 22 days at the Orangeburg-Calhoun Regional Detention Center, where she was initially held without bond, facing 20 years to life in prison.

This August, 13 months after she was released from jail to house arrest with an ankle monitor, Marsh was cleared by a grand jury. Her case will not proceed to trial.

Her story raises questions about the state of reproductive rights in this country, disparities in health care, and pregnancy criminalization, especially for Black women like Marsh. More than two years after the U.S. Supreme Court issued its Dobbs v. Jackson Women’s Health Organization decision, which allowed states to outlaw abortion, the climate around these topics remains highly charged.

Marsh’s case also highlights what’s at stake in November. Sixty-one percent of voters want Congress to pass a federal law restoring a nationwide right to abortion, according to a recent poll by KFF, the health policy research, polling, and news organization that includes KFF Health News. These issues could shape who wins the White House and controls Congress, and will come to a head for voters in the 10 states where ballot initiatives about abortion will be decided.

Current Mississippi law bans abortions “except in the case where necessary for the preservation of the mother’s life” or where the pregnancy was caused by rape and reported to law enforcement. Doctors who perform abortions outside of those parameters face up to 10 years in prison, in addition to the loss of their license.

OB-GYNs in the state told Mississippi Today the lack of clarity around the law worries them. Life-threatening conditions during pregnancy often occur on a spectrum and can develop over time – calling into question what does and does not constitute a threat to the life of the mother, one Jackson area physician told Mississippi Today after the Dobbs ruling in 2022.

The South Carolina case shows how pregnancy loss is being criminalized around the country, said U.S. Rep. James Clyburn, a Democrat whose congressional district includes Orangeburg, and an alumnus of the same university Marsh was attending.

“This is not a slogan when we talk about this being an ‘election about the restoration of our freedoms,’” Clyburn said.

‘I Was Scared’

When Marsh took an at-home pregnancy test in November 2022, the positive result scared her. “I didn’t know what to do. I didn’t want to let my parents down,” she said. “I was in a state of shock.”

She didn’t seek prenatal care, she said, because she kept having her period. She thought the pregnancy test might have been wrong.

An incident report filed by the Orangeburg County Sheriff’s Office on the day she lost the pregnancy stated that in January 2023 Marsh made an appointment at a Planned Parenthood clinic in Columbia to “take the Plan-C pill which would possibly cause an abortion to occur.” The report doesn’t specify whether she took — or even obtained — the drug.

During an interview at her parents’ house, Marsh denied going to Planned Parenthood or taking medicine to induce abortion.

“I’ve never been in trouble. I’ve never been pulled over. I’ve never been arrested,” Marsh said. “I never even got written up in school.”

Zipporah Sumpter, Amari Marsh, Herman Marsh, and Regina Marsh at the Marshes’ home in Orangeburg, South Carolina. Herman and Regina Marsh hired Sumpter, an attorney, the same day their daughter Amari was arrested in 2023. The college student was charged with murder/homicide by child abuse after losing a pregnancy. A grand jury cleared her in August. (Sam Wolfe for KFF Health News)

She played clarinet as section leader in the marching band and once performed at Carnegie Hall. In college, she was majoring in biology and planned to become a doctor.

South Carolina state Rep. Seth Rose, a Democrat in Columbia and one of Marsh’s attorneys, called it a “really tragic” case. “It’s our position that she lost a child through natural causes,” he said.

On Feb. 28, 2023, Marsh said, she experienced abdominal pain that was “way worse” than regular menstrual cramps. She went to the emergency room, investigation records show, but left after several hours without being treated. Back at home, she said, the pain grew worse. She returned to the hospital, this time by ambulance.

Hospital staffers crowded around her, she said, and none of them explained what was happening to her. Bright lights shone in her face. “I was scared,” she said.

According to the sheriff’s department report, hospital staffers told Marsh that she was pregnant and that a fetal heartbeat could be detected. Freaked out and confused, she chose to leave the hospital a second time, she said, and her pain had subsided.

In the middle of the night, she said, the pain started again. She woke up, she recalled, feeling an intense urge to use the bathroom. “And when I did, the child came,” she said. “I screamed because I was scared, because I didn’t know what was going on.”

Her boyfriend at the time called 911. The emergency dispatcher “kept telling me to take the baby out” of the toilet, she recalled. “I couldn’t because I couldn’t even keep myself together.”

First medical responders detected signs of life and tried to perform lifesaving measures as they headed to Regional Medical Center in Orangeburg, the incident report said. But at the hospital, Marsh learned that her infant, a girl, had not survived.

“I kept asking to see the baby,” she said. “They wouldn’t let me.”

The following day, a sheriff’s deputy told Marsh in her hospital room that the incident was under investigation but said that Marsh “was currently not in any trouble,” according to the report. Marsh responded that “she did not feel as though she did anything wrong.”

More than 10 weeks later, nothing about the text messages she received from an officer in mid-May implied that the follow-up meeting about the final report was urgent.

“Oh it doesn’t have to be Wednesday, it can be next week or another week,” the officer wrote in an exchange that Marsh shared with KFF Health News. “I just have to meet with y’all in person before I can close the case out. I am so sorry”

“No problem I understand,” Marsh wrote back.

She didn’t tell her parents or consider hiring a lawyer. “I didn’t think I needed one,” she said.

Marsh arranged to meet the officer on June 2, 2023. During that meeting, she was arrested. Her boyfriend was not charged.

Her father, Herman Marsh, the band director at a local public school in Orangeburg, thought it was a bad joke until reality set in. “I told my wife, I said, ‘We need to get an attorney now.’”

Herman and Regina Marsh at their home in Orangeburg, South Carolina. The Marshes’ daughter Amari experienced a pregnancy loss last year during her junior year in college and was later charged with murder/homicide by child abuse. While Amari was cleared of the charge in August, the Marsh family is still processing the ordeal. (Sam Wolfe for KFF Health News)

Pregnancy Criminalization

When Marsh lost her pregnancy on March 1, 2023, women in South Carolina could still obtain an abortion until 20 weeks beyond fertilization, or the gestational age of 22 weeks.

Later that spring, South Carolina’s Republican-controlled legislature passed a ban that prohibits providers from performing abortions after fetal cardiac activity can be detected, with some exceptions made for cases of rape, incest, or when the mother’s life is in jeopardy. That law does not allow criminal penalties for women who seek or obtain abortions.

Solicitor David Pascoe, a Democrat elected to South Carolina’s 1st Judicial Circuit whose office handled Marsh’s prosecution, said the issues of abortion and reproductive rights weren’t relevant to this case.

“It had nothing to do with that,” he told KFF Health News.

The arrest warrant alleges that not moving the infant from the toilet at the urging of the dispatcher was ultimately “a proximate cause of her daughter’s death.” The warrant also cites as the cause of death “respiratory complications” due to a premature delivery stemming from a maternal chlamydia infection. Marsh said she was unaware of the infection until after the pregnancy loss.

Pascoe said the question raised by investigators was whether Marsh failed to render aid to the infant before emergency responders arrived at the apartment, he said. Ultimately, the grand jury decided there wasn’t probable cause to proceed with a criminal trial, he said. “I respect the grand jury’s opinion.”

Marsh’s case is a “prime example of how pregnancy loss can become a criminal investigation very quickly,” said Dana Sussman, senior vice president of Pregnancy Justice, a nonprofit that tracks such cases. While similar cases predate the Supreme Court’s Dobbs decision, she said, they seem to be increasing.

“The Dobbs decision unleashed and empowered prosecutors to look at pregnant people as a suspect class and at pregnancy loss as a suspicious event,” she said.

Local and national anti-abortion groups seized on Marsh’s story when her name and mug shot were published online by The Times and Democrat of Orangeburg. Holly Gatling, executive director of South Carolina Citizens for Life, wrote a blog post about Marsh titled, in part, “Orangeburg Newborn Dies in Toilet” that was published by National Right to Life. Gatling and National Right to Life did not respond to interview requests.

Marsh said she made the mistake of googling herself when she was released from jail.

“It was heartbreaking to see all those things,” she said. “I cried so many times.”

Amari Marsh tears up during an interview. She was jailed without bond for 22 days, then placed under house arrest for more than a year, before being cleared of a charge of murder/homicide by child abuse after losing a pregnancy at home in 2023. Marsh says she is still processing how the ordeal has changed her life. (Sam Wolfe for KFF Health News)

Some physicians are also afraid of being painted as criminals. The nonprofit Physicians for Human Rights published a report on Sept. 17 about Florida’s six-week abortion ban that included input from two dozen doctors, many of whom expressed fear about the criminal penalties imposed by the law.

“The health care systems are afraid,” said Michele Heisler, medical director for the nonprofit. “There’s all these gray areas. So everyone is just trying to be extra careful. Unfortunately, as a result, patients are suffering.”

Chelsea Daniels, a family medicine doctor who works for Planned Parenthood in Miami and performs abortions, said that in early September she saw a patient who had a miscarriage during the first trimester of her pregnancy. The patient had been to four hospitals and brought in the ultrasound scans performed at each facility.

“No one would touch her,” Daniels said. “Each ultrasound scan she brought in represents, on the other side, a really terrified doctor who is doing their best to interpret the really murky legal language around abortion care and miscarriage management, which are the same things, essentially.”

Florida is one of the 10 states with a ballot measure related to abortion in November, although it is the only Southern state with one. Others are Montana, Missouri, and Maryland.

‘I Found My Strength’

Zipporah Sumpter, one of Marsh’s lawyers, said the law enforcement system treated her client as a criminal instead of a grieving mother. “This is not a criminal matter,” Sumpter said.

It was not just the fraught climate around pregnancy that caused Marsh to suffer; “race definitely played a factor,” said Sumpter, who does not believe Marsh received compassionate care when she went to the hospital the first or second time.

Zipporah Sumpter, Amari Marsh’s attorney, says law enforcement treated her client as a criminal instead of a grieving mother. “This is not a criminal matter,” Sumpter says. (Sam Wolfe for KFF Health News)

The management of Regional Medical Center, where Marsh was treated, changed shortly after her hospitalization. The hospital is now managed by the Medical University of South Carolina, and its spokesperson declined to comment on Marsh’s case.

Historically, birth outcomes for Black women in Orangeburg County, where Marsh lost her pregnancy, have ranked among the worst in South Carolina. From 2020 through 2022, the average mortality rate for Black infants born in Orangeburg County was more than three times as high as the average rate for white infants statewide.

Today, Marsh is still trying to process all that happened. She moved back in with her parents and is seeing a therapist. She is taking classes at a local community college and hopes to reenroll at South Carolina State University to earn a four-year degree. She still wants to become a doctor. She keeps her daughter’s ashes on a bookshelf in her bedroom.

“Through all of this, I found my strength. I found my voice. I want to help other young women that are in my position now and will be in the future,” she said. “I always had faith that God was going to be on my side, but I didn’t know how it was going to go with the justice system we have today.”

KFF Health News Florida correspondent Daniel Chang contributed to this article. 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.

Mississippi Today's Kate Royals contributed to this report.

This article first appeared on Mississippi Today and is republished here under a Creative Commons license.

When Preston Nafz was 12, he asked his dad for permission to play lacrosse.

“First practice, he came back, he said, ‘Dad, I love it,’” recalled his father, Lothar Nafz, of Hoover, Alabama. “He lives for lacrosse.”

But years of youth sports took a toll on Preston’s body. By the time the teenager limped off the field during a lacrosse tournament last year, the pain in his left hip had become so intense that he had trouble with simple activities, such as getting out of a car or turning over in bed. Months of physical therapy and anti-inflammatory drugs didn’t help.

Not only did he have to give up sports, but “I could barely do anything,” said Preston, now 17.

The Medical Procedure

A doctor recommended Preston undergo a procedure called a sports hernia repair to mend damaged tissue in his pelvis, believed to be causing his pain.

The sports medicine clinic treating Preston told Lothar that the procedure had no medical billing code — an identifier that providers use to charge insurers and other payers. It likely would be a struggle to persuade their insurer to cover it, Lothar was told, which is why he needed to pay upfront.

With his son suffering, Lothar said, the surgery “needed to be done.” He paid more than $7,000 to the clinic and the surgery center with a personal credit card and a medical credit card with a zero-interest rate.

Preston underwent surgery in November, and his father filed a claim with their insurer, hoping for a full reimbursement. It didn’t come.

The Final Bill

$7,105, which broke down as $480 for anesthesia, a $625 facility fee, and $6,000 for the surgery.

The Billing Problem: No CPT Code

Before the surgery, Lothar said, he called Blue Cross and Blue Shield of Alabama and was encouraged to learn that his policy typically covers most medical, non-cosmetic procedures.

But during follow-up phone calls, he said, insurance representatives were “deflecting, trying to wiggle out.” He said he called several times, getting a denial just before the surgery.

Lothar said he trusted his son’s doctor, who showed him research indicating the surgery works. The clinic, Andrews Sports Medicine and Orthopaedic Center, has a good reputation in Alabama, he said.

Other medical providers not involved in the case called the surgery a legitimate treatment.

A sports hernia — also known as an “athletic pubalgia” — is a catchall phrase to describe pain that athletes may experience in the lower groin or upper thigh area, said David Geier, an orthopedic surgeon and sports medicine specialist in Mount Pleasant, South Carolina.

“There’s a number of underlying things that can cause it,” Geier said. Because of that, there isn’t “one accepted surgery for that problem. That’s why I suspect there’s not a uniform CPT.”

CPT stands for “Current Procedural Terminology” and refers to the numerical or alphanumeric codes for procedures and services performed in a clinical or outpatient setting. There’s a CPT code for a rapid strep test, for example, and different codes for various X-rays.

The lack of a CPT code can cause reimbursement headaches, since insurers determine how much to pay based on the CPT codes providers use on claims forms.

More than 10,000 CPT codes exist. Several hundred are added each year by a special committee of the American Medical Association, explained Leonta Williams, director of education at AAPC, previously known as the American Academy of Professional Coders.

Codes are more likely to be proposed if the procedure in question is highly utilized, she said.

Not many orthopedic surgeons in the U.S. perform sports hernia repairs, Geier said. He said some insurers consider the surgery experimental.

Preston said his pain improved since his surgery, though recovery was much longer and more painful than he expected.

By the end of April, Lothar said, he’d finished paying off the surgery.

The Resolution: A billing statement from the surgery center shows that the CPT code assigned to Preston’s sports hernia repair was “27299,” which stands for “a pelvis or hip joint procedure that does not have a specific code.”

After submitting more documentation to appeal the insurance denial, Lothar received a check from the insurer for $620.26. Blue Cross and Blue Shield didn’t say how it came up with that number or which costs it was reimbursing.

Lothar said he has continued to receive confusing messages from the insurer about his claim.

Both the insurer and the sports medicine clinic declined to comment.

The Takeaway

Before you undergo a medical procedure, try to check whether your insurer will cover the cost and confirm it has a billing code.

Williams of the AAPC suggests asking your insurer: “Do you reimburse this code? What types of services fall under this code? What is the likelihood of this being reimbursed?”

Persuading an insurer to pay for care that doesn’t have its own billing code is difficult but not impossible, Williams said. Your doctor can bill insurance using an “unlisted code” along with documentation explaining what procedure was performed.

“Anytime you’re dealing with an unlisted code, there’s additional work needed to explain what service was rendered and why it was needed,” she said.

Some patients undergoing procedures without CPT codes may be asked to pay upfront. You can also offer a partial upfront payment, which may motivate your provider to team up to get insurance to pay.

Bill of the Month is a crowdsourced investigation by KFF Health News and The Washington Post’s Well+Being that dissects and explains medical bills. Since 2018, this series has helped many patients and readers get their medical bills reduced, and it has been cited in statehouses, the U.S. Capitol, and at the White House. Do you have a confusing or outrageous medical bill you want to share? Tell us about it!

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.

ORANGEBURG, S.C. — Amari Marsh had just finished her junior year at South Carolina State University in May 2023 when she received a text message from a law enforcement officer.

“Sorry it has taken this long for paperwork to come back,” the officer wrote. “But I finally have the final report, and wanted to see if you and your boyfriend could meet me Wednesday afternoon for a follow up?”

Marsh understood that the report was related to a pregnancy loss she’d experienced that March, she said. During her second trimester, Marsh said, she unexpectedly gave birth in the middle of the night while on a toilet in her off-campus apartment. She remembered screaming and panicking and said the bathroom was covered in blood.

“I couldn’t breathe,” said Marsh, now 23.

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The next day, when Marsh woke up in the hospital, she said, a law enforcement officer asked her questions. Then, a few weeks later, she said, she received a call saying she could collect her daughter’s ashes.

At that point, she said, she didn’t know she was being criminally investigated. Yet three months after her loss, Marsh was charged with murder/homicide by child abuse, law enforcement records show. She spent 22 days at the Orangeburg-Calhoun Regional Detention Center, where she was initially held without bond, facing 20 years to life in prison.

This August, 13 months after she was released from jail to house arrest with an ankle monitor, Marsh was cleared by a grand jury. Her case will not proceed to trial.

Her story raises questions about the state of reproductive rights in this country, disparities in health care, and pregnancy criminalization, especially for Black women like Marsh. More than two years after the U.S. Supreme Court issued its Dobbs v. Jackson Women’s Health Organization decision, which allowed states to outlaw abortion, the climate around these topics remains highly charged.

Marsh’s case also highlights what’s at stake in November. Sixty-one percent of voters want Congress to pass a federal law restoring a nationwide right to abortion, according to a recent poll by KFF, the health policy research, polling, and news organization that includes KFF Health News. These issues could shape who wins the White House and controls Congress, and will come to a head for voters in the 10 states where ballot initiatives about abortion will be decided.

This case shows how pregnancy loss is being criminalized around the country, said U.S. Rep. James Clyburn, a Democrat and graduate of South Carolina State University whose congressional district includes Orangeburg.

“This is not a slogan when we talk about this being an ‘election about the restoration of our freedoms,’” Clyburn said.

‘I Was Scared’

When Marsh took an at-home pregnancy test in November 2022, the positive result scared her. “I didn’t know what to do. I didn’t want to let my parents down,” she said. “I was in a state of shock.”

She didn’t seek prenatal care, she said, because she kept having her period. She thought the pregnancy test might have been wrong.

An incident report filed by the Orangeburg County Sheriff’s Office on the day she lost the pregnancy stated that in January 2023 Marsh made an appointment at a Planned Parenthood clinic in Columbia to “take the Plan-C pill which would possibly cause an abortion to occur.” The report doesn’t specify whether she took — or even obtained — the drug.

During an interview at her parents’ house, Marsh denied going to Planned Parenthood or taking medicine to induce abortion.

“I’ve never been in trouble. I’ve never been pulled over. I’ve never been arrested,” Marsh said. “I never even got written up in school.”

She played clarinet as section leader in the marching band and once performed at Carnegie Hall. In college, she was majoring in biology and planned to become a doctor.

South Carolina state Rep. Seth Rose, a Democrat in Columbia and one of Marsh’s attorneys, called it a “really tragic” case. “It’s our position that she lost a child through natural causes,” he said.

On Feb. 28, 2023, Marsh said, she experienced abdominal pain that was “way worse” than regular menstrual cramps. She went to the emergency room, investigation records show, but left after several hours without being treated. Back at home, she said, the pain grew worse. She returned to the hospital, this time by ambulance.

Hospital staffers crowded around her, she said, and none of them explained what was happening to her. Bright lights shone in her face. “I was scared,” she said.

According to the sheriff’s department report, hospital staffers told Marsh that she was pregnant and that a fetal heartbeat could be detected. Freaked out and confused, she chose to leave the hospital a second time, she said, and her pain had subsided.

In the middle of the night, she said, the pain started again. She woke up, she recalled, feeling an intense urge to use the bathroom. “And when I did, the child came,” she said. “I screamed because I was scared, because I didn’t know what was going on.”

Her boyfriend at the time called 911. The emergency dispatcher “kept telling me to take the baby out” of the toilet, she recalled. “I couldn’t because I couldn’t even keep myself together.”

First medical responders detected signs of life and tried to perform lifesaving measures as they headed to Regional Medical Center in Orangeburg, the incident report said. But at the hospital, Marsh learned that her infant, a girl, had not survived.

“I kept asking to see the baby,” she said. “They wouldn’t let me.”

The following day, a sheriff’s deputy told Marsh in her hospital room that the incident was under investigation but said that Marsh “was currently not in any trouble,” according to the report. Marsh responded that “she did not feel as though she did anything wrong.”

More than 10 weeks later, nothing about the text messages she received from an officer in mid-May implied that the follow-up meeting about the final report was urgent.

“Oh it doesn’t have to be Wednesday, it can be next week or another week,” the officer wrote in an exchange that Marsh shared with KFF Health News. “I just have to meet with y’all in person before I can close the case out. I am so sorry”

“No problem I understand,” Marsh wrote back.

She didn’t tell her parents or consider hiring a lawyer. “I didn’t think I needed one,” she said.

Marsh arranged to meet the officer on June 2, 2023. During that meeting, she was arrested. Her boyfriend was not charged.

Her father, Herman Marsh, the band director at a local public school in Orangeburg, thought it was a bad joke until reality set in. “I told my wife, I said, ‘We need to get an attorney now.’”

Pregnancy Criminalization

When Marsh lost her pregnancy on March 1, 2023, women in South Carolina could still obtain an abortion until 20 weeks beyond fertilization, or the gestational age of 22 weeks.

Later that spring, South Carolina’s Republican-controlled legislature passed a ban that prohibits providers from performing abortions after fetal cardiac activity can be detected, with some exceptions made for cases of rape, incest, or when the mother’s life is in jeopardy. That law does not allow criminal penalties for women who seek or obtain abortions.

Solicitor David Pascoe, a Democrat elected to South Carolina’s 1st Judicial Circuit whose office handled Marsh’s prosecution, said the issues of abortion and reproductive rights weren’t relevant to this case.

“It had nothing to do with that,” he told KFF Health News.

The arrest warrant alleges that not moving the infant from the toilet at the urging of the dispatcher was ultimately “a proximate cause of her daughter’s death.” The warrant also cites as the cause of death “respiratory complications” due to a premature delivery stemming from a maternal chlamydia infection. Marsh said she was unaware of the infection until after the pregnancy loss.

Pascoe said the question raised by investigators was whether Marsh failed to render aid to the infant before emergency responders arrived at the apartment, he said. Ultimately, the grand jury decided there wasn’t probable cause to proceed with a criminal trial, he said. “I respect the grand jury’s opinion.”

Marsh’s case is a “prime example of how pregnancy loss can become a criminal investigation very quickly,” said Dana Sussman, senior vice president of Pregnancy Justice, a nonprofit that tracks such cases. While similar cases predate the Supreme Court’s Dobbs decision, she said, they seem to be increasing.

“The Dobbs decision unleashed and empowered prosecutors to look at pregnant people as a suspect class and at pregnancy loss as a suspicious event,” she said.

Local and national anti-abortion groups seized on Marsh’s story when her name and mug shot were published online by The Times and Democrat of Orangeburg. Holly Gatling, executive director of South Carolina Citizens for Life, wrote a blog post about Marsh titled, in part, “Orangeburg Newborn Dies in Toilet” that was published by National Right to Life. Gatling and National Right to Life did not respond to interview requests.

Marsh said she made the mistake of googling herself when she was released from jail.

“It was heartbreaking to see all those things,” she said. “I cried so many times.”

Some physicians are also afraid of being painted as criminals. The nonprofit Physicians for Human Rights published a report on Sept. 17 about Florida’s six-week abortion ban that included input from two dozen doctors, many of whom expressed fear about the criminal penalties imposed by the law.

“The health care systems are afraid,” said Michele Heisler, medical director for the nonprofit. “There’s all these gray areas. So everyone is just trying to be extra careful. Unfortunately, as a result, patients are suffering.”

Chelsea Daniels, a family medicine doctor who works for Planned Parenthood in Miami and performs abortions, said that in early September she saw a patient who had a miscarriage during the first trimester of her pregnancy. The patient had been to four hospitals and brought in the ultrasound scans performed at each facility.

“No one would touch her,” Daniels said. “Each ultrasound scan she brought in represents, on the other side, a really terrified doctor who is doing their best to interpret the really murky legal language around abortion care and miscarriage management, which are the same things, essentially.”

Florida is one of the 10 states with a ballot measure related to abortion in November, although it is the only Southern state with one. Others are Montana, Missouri, and Maryland.

‘I Found My Strength’

Zipporah Sumpter, one of Marsh’s lawyers, said the law enforcement system treated her client as a criminal instead of a grieving mother. “This is not a criminal matter,” Sumpter said.

It was not just the fraught climate around pregnancy that caused Marsh to suffer; “race definitely played a factor,” said Sumpter, who does not believe Marsh received compassionate care when she went to the hospital the first or second time.

The management of Regional Medical Center, where Marsh was treated, changed shortly after her hospitalization. The hospital is now managed by the Medical University of South Carolina, and its spokesperson declined to comment on Marsh’s case.

Historically, birth outcomes for Black women in Orangeburg County, where Marsh lost her pregnancy, have ranked among the worst in South Carolina. From 2020 through 2022, the average mortality rate for Black infants born in Orangeburg County was more than three times as high as the average rate for white infants statewide.

Today, Marsh is still trying to process all that happened. She moved back in with her parents and is seeing a therapist. She is taking classes at a local community college and hopes to reenroll at South Carolina State University to earn a four-year degree. She still wants to become a doctor. She keeps her daughter’s ashes on a bookshelf in her bedroom.

“Through all of this, I found my strength. I found my voice. I want to help other young women that are in my position now and will be in the future,” she said. “I always had faith that God was going to be on my side, but I didn’t know how it was going to go with the justice system we have today.”

KFF Health News Florida correspondent Daniel Chang contributed to this article.

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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