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.

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.”

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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.

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!

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

When Dani Yuengling felt a lump in her right breast last summer, she tried to ignore it.

She was 35, the same age her mother had been when she received a breast cancer diagnosis in 1997. The disease eventually killed Yuengling’s mom in 2017.

“It was the hardest experience, seeing her suffer,” said Yuengling, who lives in Conway, South Carolina.

After a mammogram confirmed the lump needed further investigation, Yuengling scheduled a breast biopsy for Valentine’s Day this year at Grand Strand Medical Center in Myrtle Beach.

Among many concerns she had ahead of that appointment — the first being a potential cancer diagnosis — Yuengling needed to know how much the biopsy would cost. She has a $6,000 annual deductible — the amount her health plan requires she pay before its contribution kicks in — and she wasn’t close to hitting that. Whatever the procedure cost, Yuengling knew she’d be on the hook for most of it.

But the hospital wouldn’t give her a price. She was told her providers wouldn’t know what type of biopsy needle they needed until the procedure was underway and that would impact the price.

The hospital’s online “Patient Payment Estimator” showed Yuengling an uninsured patient would owe about $1,400 for the procedure.

“That’s fine. No big deal,” she thought to herself, confident it would be cheaper for her because she did have insurance. A Google search indicated it could be closer to $3,000, but Yuengling thought that price seemed reasonable, too. She wasn’t fretting too much about money as she underwent the procedure.

It soon brought the good news that she didn’t have cancer.

Then the bill came.

The Patient: Dani Yuengling, now 36, who is covered by Cigna through her employer, a human resources contractor for the Mayo Clinic.

Medical Service: An ultrasound-guided breast biopsy.

Service Provider: Grand Strand Medical Center, a 403-bed, for-profit hospital in Myrtle Beach, South Carolina. It is one of 182 hospitals owned by Nashville-based HCA Healthcare, which generated $58.7 billion in revenue last year.

Total Bill: $17,979 for the procedure, including lab work, pharmacy charges, and sterile supplies. Cigna’s in-network negotiated rate was $8,424.14, of which the insurance company paid the hospital $3,254.47. Yuengling was billed $5,169.67, the balance of her deductible.

What Gives: It’s not uncommon for uninsured patients — or any patient willing to pay a cash price — to be charged far less for a procedure than patients with health insurance. For the nearly 30% of American workers with high-deductible plans, like Yuengling, that means using insurance can lead to a far bigger expense than if they had been uninsured or just pulled out a credit card to pay in advance.

Ge Bai, an associate professor at Johns Hopkins Bloomberg School of Public Health, recently published research on this topic and said hospitals in the U.S. often set their cash prices lower than the prices they charge to treat commercially insured patients.

“We can very confidently say this is very common,” said Bai, who advised that all patients, regardless of their insurance status, inquire about the cash price before undergoing a procedure. “It should be a norm.”

Grand Strand charged Yuengling’s insurance an extraordinarily high price for her procedure. By comparison, according to the federal government’s website, Medicare patients who need an ultrasound-guided biopsy similar to the one Yuengling received would pay only about $300 — their required 20% coinsurance for outpatient care. Medicare would pay the hospital the remainder of the bill, about $1,200. The hospital expected more than five times the Medicare price from Yuengling and her insurer.

Patients in Conway with private health insurance who are treated at other hospitals also typically are charged less than what Yuengling paid for the same procedure — on average about $3,500, according to Fair Health Consumer, an organization that analyzes health insurance claims.

And uninsured patients who pay cash prices and need an ultrasound-guided breast biopsy at the nearby Conway Medical Center are likely to owe even less — about $2,100, according to Allyson Floyd, a spokesperson for the hospital.

Meanwhile, Grand Strand Medical Center spokesperson Caroline Preusser blamed “a glitch” involving the hospital’s online calculator for the inaccurate information Yuengling received and said the correct estimate for the cash price for a breast biopsy at the hospital is between $8,000 and $11,500 “depending on the exact procedure and equipment used.”

The hospital removed certain procedures from the payment estimator until they can be corrected, Preusser wrote. She did not say how long that would take.

Resolution: Yuengling tried disputing the charges with the hospital. She called the billing department and was offered a 36% discount, lowering the amount she needed to pay to $3,306.29. Grand Strand Medical Center allows patients to set up payment plans, but Yuengling decided to charge the full amount to a credit card because she wanted the whole thing to go away.

“I could not sleep. It was driving me crazy. I was having migraines. I was sick to my stomach,” she said. “I hate having debt. I didn’t want to think about it. Obviously, that didn’t work because I’m still thinking about it.”

She said she requested on multiple occasions to speak to the hospital’s patient advocate and was eventually connected with an outside company, Parallon, which conducted an audit of her bill. She eventually received a letter dated May 26 from the hospital’s Revenue Integrity Department. It stated: “After a review of the charges in question and your medical record, the following was identified; The charges on your account were appropriate.”

“I don’t know why I actually expected a different outcome,” she said.

The hospital has requested that Yuengling return for a follow-up appointment related to the biopsy. She has refused.

Harlow Sumerford, a spokesperson for HCA Healthcare, told KHN in an email that the hospital system apologizes for any confusion caused by the payment estimator “and we are working to fix the issue.”

The Takeaway: With a family history of breast cancer, Yuengling was right to follow up with her doctor after feeling a lump. After failing to get a clear answer on her costs from Grand Strand Medical Center, she could have taken an additional step to explore what other hospitals in the area charge. Although her physician referred her to Grand Strand, she was not obligated to use that hospital. She could have saved a significant amount of money by opting to undergo the procedure elsewhere.

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Furthermore, patients like Yuengling who have a high-deductible insurance plan should consider paying cash prices for certain procedures and not involving their insurance company at all.

Jacqueline Fox, a health care attorney and a professor at the University of South Carolina School of Law, said she isn’t aware of any law that would prohibit a patient from doing that. After all, she pointed out, patients with health insurance pay cash prices for prescription medications all the time. It stands to reason they could do the same for medical procedures.

But some facilities make this difficult. Grand Strand Medical Center, for example, offers “self-pay” patients an “uninsured discount,” but that discount is limited to people who have “no third party payer source of payment or do not qualify for Medicaid, Charity or any other discount program the facility offers,” according to the hospital’s website. Only patients confirmed to have no health insurance are offered information about the discount.

In some cases, paying a cash price for a procedure might not make financial sense in the long run because none of it would be applied toward the deductible. Patients might save money on one procedure but end up paying their full deductible if unexpected medical expenses mount later during the calendar year.

Insured patients should reach out to their health plan for a good-faith estimate before a procedure. Under the No Surprises Act, health plans are supposed to give members an idea of their total out-of-pocket costs upon request. Ask for an “Advanced Explanation of Benefits,” said Sabrina Corlette, a research professor at the Georgetown University McCourt School of Public Policy, though she points out this part of the law isn’t being enforced yet.

The No Surprises Act also allows patients to file complaints with the federal government regarding their medical bills — whether or not they carry health insurance.

Yuengling filed her complaint in June.

Stephanie O’Neill contributed the audio portrait with this article.

Bill of the Month is a crowdsourced investigation by KHN and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!

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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, 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!

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When Karla Adkins looked in the rearview mirror of her car one morning nearly 10 years ago, she noticed the whites of her eyes had turned yellow.

She was 36 at the time and working as a physician liaison for a hospital system on the South Carolina coast, where she helped build relationships among doctors. Privately, she had struggled with heavy drinking since her early 20s, long believing that alcohol helped calm her anxieties. She understood that the yellowing of her eyes was evidence of jaundice. Even so, the prospect of being diagnosed with alcohol-related liver disease wasn’t her first concern.

“Honestly, the No. 1 fear for me was someone telling me I could never drink again,” said Adkins, who lives in Pawleys Island, a coastal town about 30 miles south of Myrtle Beach.

But the drinking had caught up with her: Within 48 hours of that moment in front of the rearview mirror, she was hospitalized, facing liver failure. “It was super fast,” Adkins said.

Historically, alcohol use disorder has disproportionately affected men. But recent data from the Centers for Disease Control and Prevention on deaths from excessive drinking shows that rates among women are climbing faster than they are among men. The Biden administration considers this trend alarming, with one new estimate predicting women will account for close to half of alcohol-associated liver disease costs in the U.S. by 2040, a $66 billion total price tag.

It’s a high-priority topic for the Department of Health and Human Services and the Department of Agriculture, which together will release updated national dietary guidelines next year. But with marketing for alcoholic beverages increasingly geared toward women, and social drinking already a huge part of American culture, change isn’t something everyone may be ready to raise a glass to.

“This is a touchy topic,” said Rachel Sayko Adams, a research associate professor at the Boston University School of Public Health. “There is no safe level of alcohol use,” she said. “That’s, like, new information that people didn’t want to know.”

Over the past 50 years, women have increasingly entered the workforce and delayed motherhood, which likely has contributed to the problem as women historically drank less when they became mothers.

“Parenthood tended to be this protective factor,” but that’s not always the case anymore, said Adams, who studies addiction.

More than 600,000 people in the U.S. died from causes related to alcohol from 1999 to 2020, according to research published in JAMA Network Open last year, positioning alcohol among the leading causes of preventable death in this country behind tobacco, poor diet and physical inactivity, and illegal drugs.

The World Health Organization and various studies have found that no amount of alcohol is safe for human health. Even light drinking has been linked to health concerns, like hypertension and coronary artery disease and an increased risk of breast and other cancers.

More recently, the covid-19 pandemic “significantly exacerbated” binge-drinking, said George Koob, director of the National Institute on Alcohol Abuse and Alcoholism at the National Institutes of Health, as people used alcohol to cope with stress. That is particularly true of women, who are more likely to drink alcohol because of stress than men, he said.

But women are also frequently the focus of gender-targeted advertising for alcoholic beverages. The growth of rosé sales and low-calorie wines, for example, has exploded in recent years. New research published by the International Journal of Drug Policy in February found that the “pinking of products is a tactic commonly used by the alcohol industry to target the female market.”

Also at play is the emergence of a phenomenon largely perpetuated by women on social media that makes light of drinking to deal with the difficulties of motherhood. The misperception of “mommy wine culture,” said Adams, is that “if you can drink in a normal way, a moderate way, if you can handle your alcohol, you’re fine.”

And while it’s unclear to what extent memes and online videos influence women’s drinking habits, the topic merits further study, said Adams, who with colleagues last year found that women without children at age 35 are still at the highest risk for binge-drinking and alcohol use disorder symptoms among all age groups of women. But over the past two decades, the research concluded, the risk is escalating for both childless women and mothers.

These factors at play, coupled with the pressure to fit in, can make excessive drinking a difficult conversation to broach.“It’s a very taboo topic,” Adams said.

And when it does come up, said Stephanie Garbarino, a transplant hepatologist at Duke Health, it’s often surprising how many patients are unaware how their drinking affects their health.

“Often, they didn’t know there was anything wrong with what they’re doing,” she said. She is more frequently seeing younger patients with liver disease, including men and women in their 20s and 30s.

And public health and addiction experts fear that alcohol-related liver disease among women will become a costly issue for the nation to address. Women accounted for 29% of all costs associated with the disease in the U.S. in 2022 and are expected to account for 43% by 2040, estimated a new analysis published in the American Journal of Gastroenterology in February.

National dietary guidelines advise women to drink no more than one alcoholic drink a day. Those guidelines are up for a five-year review next year by the USDA and HHS, which has called a special committee to examine, among other questions, the relationship between alcohol consumption and cancer risks. The report will be made public in 2025.

When Canada published guidance in 2023 advising that drinking any more than two alcoholic beverages a week carried health risks, Koob sparked backlash when his comments to the Daily Mail suggested that U.S. guidelines might move in the same direction. The CDC report published in February suggested that an increase in alcohol taxes could help reduce excessive alcohol use and deaths. Koob’s office would not comment on such policies.

It’s a topic close to Adkins’ heart. She now works as a coach to help others — mostly women — stop drinking, and said the pandemic prompted her to publish a book about her near-death experience from liver failure. And while Adkins lives with cirrhosis, this September will mark 10 years since her last drink.

“The amazing thing is, you can’t get much worse from where I got,” said Adkins. “My hope is really to change the narrative.”

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Warning: Some readers may find graphic details in this article to be offensive or disturbing.

CAMDEN, S.C. — Three ongoing federal lawsuits filed in South Carolina accuse the state of forcing boys and girls to undergo traumatic genital exams during child abuse investigations, even when no allegations of sexual abuse have been raised.

One 14-year-old plaintiff — who goes by “Jane Doe” to protect her privacy — was placed into foster care in 2021 after she disclosed to a social services caseworker that her mother had spanked her with a belt and a tree branch.

“I never, ever mentioned sexual abuse,” said Jane, who was 12 when the South Carolina Department of Social Services launched its investigation and scheduled her to undergo a forensic medical exam at a hospital in Columbia. “I felt like I was kind of getting legally abused by someone that had the permission to do it,” she told KFF Health News during an interview at her attorney’s office.

During the exam, Jane was instructed to undress and open her legs in front of medical providers she’d never met before who took photos of her genital area, touched her breasts, and placed “fingers and/or instruments” in her vagina, according to her lawsuit.

“I felt like I had no right to say no,” she told KFF Health News. “Something inside me told me that wasn’t what they were supposed to do.”

Connelly-Anne Ragley, a spokesperson for the department, would not discuss the ongoing lawsuits. Court filings show the agency denies the allegations and argues that its employees are protected by “qualified immunity,” a type of court-created rule that often shields law enforcement officers and government officials from being sued. The department also asserts that forensic exams are “standard procedure” during abuse and neglect cases.

Investigating child abuse is notoriously complex. The investigations usually involve forensic interviews, which are typically recorded and involve a professional asking questions of a child to elicit information. And they sometimes include forensic full-body medical examinations that include a visual check of the child’s private parts and are designed to be noninvasive, meaning medical tools that can break the skin or enter the body are not used.

Together, the interview and the exam are considered effective tools for gathering information and evidence from underage victims, who may be reluctant to describe or disclose how they’ve been hurt. Often, these interviews and exams are conducted at children’s advocacy centers by social workers, doctors, and nurses who are specially trained to treat young patients with sensitivity and care — and learn to read between the lines.

Federal guidelines advise that the mere suspicion of child sexual abuse should be sufficient to trigger a forensic medical exam. Even so, there’s a growing consensus in medicine that genital and pelvic exams can be embarrassing, uncomfortable, and even traumatic.

The South Carolina lawsuits — which involve children who live in different parts of the state and who were assigned to different social services caseworkers — aren’t the first to raise red flags about the potentially harmful effects of forensic medical exams on children. Since the 1990s, federal courts from New York to California have ruled that government agencies violate children’s and parents’ civil rights when the exams are conducted without a court order or parental consent.

Claims that the exams are comparable to normal pediatric checkups are “garbage,” said Donnie Cox, a civil rights attorney in Carlsbad, California.

“At the time they’re happening, they’re scary as hell and it really does traumatize children on top of the trauma of being removed from their homes,” said Cox, who has represented plaintiffs in similar lawsuits. “They’re using these kids, basically, as pieces of evidence, and you can’t do that.”

‘A Fishing Expedition’

In one South Carolina lawsuit, a 16-year-old girl claims she was subjected to painful vaginal exams against her will, even after she denied being sexually abused. She felt as if she was “being raped” during the forensic medical exam, her complaint asserts.

In another lawsuit, a couple living in the north-central part of the state allege their sons were subjected to genital and rectal exams, without the parents’ knowledge or consent, more than a month after the children had been removed from their home in 2021. Their oldest son bruised his arms on playground equipment, they contend, instigating a child abuse investigation that resulted in all three boys temporarily moving in with their grandparents. Their youngest son was 6 months old at the time.

No one alleged during the investigation that the boys had been sexually abused, the lawsuit states, and yet the boys’ “penises were held and touched by strangers” during the forensic exam and “fingers and/or instruments were placed in their anus,” the lawsuit states.

The parents, whose names KFF Health News chose to withhold to protect the identity of their children, said their middle child suffers from night terrors because of the forensic examination. The oldest doesn’t talk about what happened in the exam room, his mother said.

“Because we didn’t know” what was going to happen, she said, “nobody could prepare him.”

Attorneys Deborah and Robert Butcher of the Foster Care Abuse Law Firm, who represent plaintiffs in all three South Carolina cases, have likened these forensic medical exams to “a fishing expedition.” One lawsuit they filed against the Department of Social Services argues the agency is financially motivated to find evidence of any form of child abuse so that it qualifies for more money from the federal government.

“They’re going to use every means possible to build a case,” Robert Butcher said. He estimated “easily thousands” of children in South Carolina have been forced to get unnecessary exams during child abuse investigations in recent years — an approximation he made based on child protective services intake data.

Ragley, the Department of Social Services spokesperson, said the agency is required by state law to follow the South Carolina Child Abuse Response Protocol to determine when children should be referred for a forensic medical evaluation, which includes “a complete and thorough medical history from the child (if verbal) and caregivers and a head to toe physical examination, including the anogenital area.”

In response to a Freedom of Information Act request filed by KFF Health News, the department said it couldn’t estimate how many forensic medical exams are conducted on children of any age in South Carolina each year.

“That is not a question SCDSS can answer,” Kaitlin Stout, the agency’s manager of policy and practice standards with the Office of Strategic Planning and Innovation, replied via email. “We do not track or tally how many forensic exams are ‘ordered/conducted’ in open DSS cases and would have no way to know how many are conducted on children who are not involved with the agency.”

But children’s advocacy centers, where many of these exams are conducted, do keep track, and national data shows that about 1 in 4 child abuse victims who are served by a children’s advocacy center get a forensic medical exam, said Teresa Huizar, chief executive officer of the National Children’s Alliance, which represents nearly 1,000 children’s advocacy centers in the U.S.

These numbers don’t capture all forensic medical exams, though, which may also be conducted in emergency departments and private clinics, Huizar said.

“I would say that they tend to be under-utilized,” she said. “Often, children who would very much benefit from an exam don’t get them because there simply isn’t enough money in the public pool.”

The cost of these exams varies by location. But in Georgia, for example, a pediatric anogenital exam with a colposcope, a medical tool used for magnification, is about $280, exclusive of lab fees, according to the Georgia Crime Victims Compensation Program.

The Right to Refuse

Child welfare experts agree that forensic medical evaluations can be worthwhile outside the strict scope of child sexual abuse investigations.

South Carolina’s Child Abuse Response Protocol indicates these exams should be conducted during investigations if children have witnessed violence or been exposed to an environment where drugs are used. An overt allegation or disclosure of child sexual abuse isn’t considered a prerequisite for a forensic medical exam, said Thomas Knapp, executive director of the South Carolina Network of Children’s Advocacy Centers.

“Children are often poly-victimized, so the head-to-toe exam is intended to ensure general well-being and pick up on evidence of any form of abuse,” Knapp explained. “There are also some children where there may be no disclosure, but we have digital images of their abuse. So, disclosure is not the only precipitating reason to request an exam.”

Like Huizar, he agreed that forensic medical exams are under-utilized. In South Carolina, specifically, more than 4,500 children passed through a children’s advocacy center with a report of sexual abuse in 2023. Only about half as many had received a forensic medical exam through mid-October, Knapp said.

State rules allow the Department of Social Services to request a forensic medical evaluation without consent from a child’s parent or legal guardian. But the rules don’t address the issue of obtaining the child’s permission before proceeding with an exam. Knapp explained that children’s advocacy centers allow patients to refuse. Federal Justice Department recommendations published in 2016 explicitly advise that children should be allowed to refuse participation in all or part of the process.

“If a patient refuses, we don’t do it,” said Anne-Marie Amies Oelschlager, a pediatric and adolescent gynecologist in Seattle. Genital exams for girls should be conducted only externally, in most cases, she said, even when sexual abuse is suspected. Internal exams and Pap smears to screen for cervical cancer aren’t recommended until age 21, according to the American College of Obstetricians and Gynecologists.

“You really want to teach kids to say no,” Oelschlager said. “This is an area that’s private and if they say no, I’ve got to respect that.”

One South Carolina lawsuit contends a 16-year-old girl was visibly “terrified and emotionally upset concerning the forensic medical exam” and that she told the medical examiner to stop. The medical examiner allegedly ignored the request.

Antoinette Laskey, a Utah pediatrician and member of the American Academy of Pediatrics’ Council on Child Abuse and Neglect, had no knowledge of the South Carolina cases but explained that a child’s wishes must be respected in the exam room, where the “inherent power differential” between a doctor and patient should be recognized.

“I would never force the issue,” she said.

In 2022, Laskey co-authored a policy statement for the American Academy of Pediatrics acknowledging that children are “especially vulnerable” to being exploited in health care settings because of their age, development level, any disability, race, ethnicity, or English language proficiency. The paper cited flagrant examples of abuse inflicted by doctors like Larry Nassar, who pleaded guilty in 2017 to sexually abusing child gymnasts under the guise of legitimate medical care.

The policy statement explained that pediatricians are responsible for assessing children’s health, including their genital health, from birth through puberty. To that end, the academy advises doctors to use sensitivity and care during anogenital exams. Children should be afforded privacy when disrobing, providers should wear gloves, and doctors should obtain permission from the child by discussing the need for the examination and what it will entail.

These exams “should never be traumatic,” said Megan Lechner, chief operating officer of the International Association of Forensic Nurses, a group that trains nurses to conduct sexual assault exams on adults and children. More than anything else, they are designed “to tell the child they’re OK,” she said. “If they’re traumatic, you’re doing it wrong.”

‘A Needle in a Haystack’

And yet courts have recognized the potentially traumatic impact of these exams before. In 2019, an Alabama judge rejected a motion that would have required child victims who were raped and abused by adults to undergo court-ordered vaginal examinations. One of the prosecutors successfully argued that the exams would “victimize the children all over again,” the Montgomery Advertiser reported.

Like many victims, the children in that case had delayed reporting the abuse. Shame and fear often prevent child victims from reporting sexual abuse right away. Some wait years before disclosing they were abused — if they ever disclose the abuse at all.

Children’s advocacy centers across the U.S. investigated nearly 250,000 cases involving child sexual abuse allegations in 2022, the National Children’s Alliance reported, but historical data shows that physical evidence is present in fewer than 5% of all reported cases.

Finding proof “is a needle in the haystack,” Laskey said.

Attorney Robert Butcher said the federal lawsuits in South Carolina may eventually be consolidated for the sake of efficiency. He doubted they would be resolved this year, but said cases already decided in favor of children and their parents in other parts of the country bolster his clients’ arguments.

In 1994, for example, a federal judge in New York found that a kindergartner who had been separated from her parents during a child abuse investigation “almost certainly did, in fact, experience psychological injury” during a forensic medical exam, when she was “subjected to intrusive bodily examinations by two strangers, in a strange location, in the absence of a parent or other reassuring figure.”

More recently, a panel of federal appeals court judges in California ruled in 2018 that the County of San Diego violated the constitutional rights of a family by failing to inform the parents that their children would undergo “significantly intrusive” and “potentially painful” forensic medical exams.

“This is as traumatic for the parents as it is for the children,” said Cox, the California attorney who represented the family in that case.

Jane Doe, who filed the first of the three South Carolina lawsuits, doesn’t know what the outcome of her case will be, and she doesn’t talk about it at middle school.

“I have a couple of close friends,” she said. “I don’t tell anybody about what happened. I just want this to be an example so that never happens to another person.”

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