CLARKESVILLE, Ga. — Last September, Alton Fry went to the doctor concerned he had high blood pressure. The trip would result in a prostate cancer diagnosis.

So began the stress of trying to pay for tens of thousands of dollars in treatment — without health insurance.

“I’ve never been sick in my life, so I’ve never needed insurance before,” said Fry, a 54-year-old self-employed masonry contractor who restores old buildings in the rural Appalachian community he’s called home nearly all his life.

Making sure he had insurance was the last thing on his mind, until recently, Fry said. He had been rebuilding his life after a prison stay, maintaining his sobriety, restarting his business, and remarrying his wife. “Things got busy,” he said.

Now, with a household income of about $48,000, Fry and his wife earn too much to qualify for Georgia’s limited Medicaid expansion. And he said he found that the health plans sold on the state’s Affordable Care Act exchange were too expensive or the coverage too limited.

In late April, a friend launched a crowdfunding campaign to help Fry cover some of the costs. To save money, Fry said, he’s taking a less aggressive treatment route than his doctor recommended.

“There is no help for middle-class America,” he said.

More than 26 million Americans lacked health insurance in the first six months of 2024, according to the Centers for Disease Control and Prevention.

The uninsured are mostly low-income adults under age 65, and people of color, and most live in the South and West. The uninsured rate in the 10 states that, like Georgia, have not expanded Medicaid to nearly all low-income adults was 14.1% in 2023, compared with 7.6% in expansion states, according to KFF, a health information nonprofit that includes KFF Health News.

Health policy researchers expect the number of uninsured to swell as the second Trump administration and a GOP-controlled Congress try to enact policies that explicitly roll back health coverage for the first time since the advent of the modern U.S. health system in the early 20th century.

Under the “One Big Beautiful Bill Act” — budget legislation that would achieve some of President Donald Trump’s priorities, like extending tax cuts mainly benefiting the wealthy — some 10.9 million Americans would lose health insurance by 2034, according to estimates by the nonpartisan Congressional Budget Office based on a House version of the budget bill.

A Senate version of the bill could result in more people losing Medicaid coverage, with reductions in federal spending and rules that would make it harder for people to qualify. But that bill suffered a major blow June 26 when the Senate parliamentarian, a nonpartisan official who enforces the chamber’s rules, rejected several health provisions — including the proposal to gradually reduce provider taxes, a mechanism that nearly every state uses to increase its federal Medicaid funding.

The number could rise to 16 million if proposed rule changes to the ACA take effect and tax credits that help people pay for ACA plans expire at the end of the year, according to the CBO. In KFF poll results released in June, nearly two-thirds of people surveyed viewed the bill unfavorably and more than half said they were worried federal funding cuts would hurt their family’s ability to obtain and afford health care.

Like Fry, more people would be forced to pay for health expenses out-of-pocket, leading to delays in care, lost access to needed doctors and medications, and poorer physical and financial health.

“The effects could be catastrophic,” said Jennifer Tolbert, deputy director of KFF’s Program on Medicaid and the Uninsured.

The House-passed bill would represent the largest reduction in federal support for Medicaid and health coverage in history, she said. If the Senate approves it, it would be the first time Congress moved to eliminate coverage for millions of people.

“This would take us back,” Tolbert said.

A Patchwork System

The United States is the only wealthy country where a substantial number of citizens lack health insurance, due to nearly a century of pushback against universal coverage from doctors, insurance companies, and elected officials.

“The complexity is everywhere throughout the system,” said Sherry Glied, dean of New York University’s Wagner School of Public Service, who worked in the George H.W. Bush, Clinton, and Obama administrations. “The big bug is that people fall between the cracks.”

This year, KFF Health News is speaking to Americans about the challenges they face in finding health insurance and the effects on their ability to get care; to providers who serve the uninsured; and to policy experts about why, even when the nation hit its lowest recorded uninsured rate in 2023, nearly a tenth of the U.S. population still lacked health coverage.

So far, the reporting has found that despite decades of policies designed to increase access to care, the very structure of the nation’s health insurance system creates the opposite effect.

Government-backed universal coverage has eluded U.S. policymakers for decades.

After lobbying from physician groups, President Franklin D. Roosevelt abandoned plans to include universal health coverage in the Social Security Act of 1935. Then, because of a wage and salary cap used to control inflation during World War II, more employers offered health insurance to lure workers. In 1954, health coverage was formally exempted from income tax requirements, which led more employers to offer the benefit as part of compensation packages.

Insurance coverage offered by employers came to form the foundation of the U.S. health system. But eventually, problems with linking health insurance to employment emerged.

“We realized, well, wait, not everybody is working,” said Heidi Allen, an associate professor at the Columbia School of Social Work who studies the impact of social policies on access to care. “Children aren’t working. People who are elderly are not working. People with disabilities are not working.”

Yet subsequent efforts to expand coverage to all Americans were met with backlash from unions who wanted health insurance as a bargaining chip, providers who didn’t want government oversight, and those who had coverage through their employers.

That led policymakers to add programs piecemeal to make health insurance accessible to more Americans.

There’s Medicare for older adults and Medicaid for people with low incomes and disabilities, both created in 1965; the Children’s Health Insurance Program, created in 1997; the ACA’s exchange plans and Medicaid expansion for people who can’t access job-based coverage, created in 2010.

As a result, the U.S. has a patchwork of health insurance programs with numerous interest groups vying for dollars, rather than a cohesive system, health policy researchers say.

Falling Through the Cracks

The lack of a cohesive system means that, even though Americans are eligible for health insurance, they struggle to access it, said Mark Shepard, an associate professor of public policy at the Harvard Kennedy School of Government. No central entity exists in the U.S. to ensure that all people have a plan, he said.

Over half of the uninsured might qualify for Medicaid or subsidies that can help cover the costs of an ACA plan, according to KFF. But many people aren’t aware of their options or can’t navigate overlapping programs — and even subsidized coverage can be unaffordable.

Those who have fallen through the cracks said it feels like the system has failed them.

Yorjeny Almonte of Allentown, Pennsylvania, earns about $2,600 a month as an inspector in a cabinet warehouse. When she started her job in December 2023, she didn’t want to spend nearly 10% of her income on health insurance.

But, last year, her uninsured mom chose to fly to the Dominican Republic to get care for a health concern. So Almonte, 23, who also needed to see a doctor, investigated her employer’s health offerings. By then she had missed the deadline to sign up.

“Now I have to wait another year,” she said.

In January, Camden, Alabama, resident Kiana George, who’s uninsured, landed in an intensive care unit months after she stopped seeing a nurse practitioner and taking blood pressure medications — an ordeal that saddled her with nearly $7,000 in medical bills.

George, 30, was kicked off Medicaid in 2023 after she got hired by an after-school program. It pays $800 a month, an income too high to qualify her for Medicaid in Alabama, which hasn’t expanded to cover most low-income adults. She also doesn’t make enough for a free or reduced-cost ACA plan.

George, who has a 9-year-old daughter, said she “has no idea” how she can repay the debt from the emergency room visit. And because she fears more bills, she has given up on treatment for ovarian cysts.

“It hurts, but I’m just gonna take my chances,” she said.

Widening the Gaps

Health insurance is fundamentally a financial product, intended to protect the policyholder’s pocketbook from accidents or illnesses.

Researchers have known for decades that a lack of insurance coverage leads to poor access to health care, said Tom Buchmueller, a health economist at the University of Michigan Ross School of Business.

“It’s only more recently we’ve had really good, strong evidence that shows that health insurance really does improve health outcomes,” Buchmueller said.

Research released this spring by the National Bureau of Economic Research found that expanding Medicaid reduced low-income adults’ chances of dying by 2.5%. In 2019, a separate study published by that nonpartisan think tank provided experimental evidence that health insurance coverage reduced mortality among middle-aged adults.

In late May, the House narrowly advanced the budget legislation that independent government analysts said would result in millions of Americans losing health insurance coverage and reduce federal spending on programs like Medicaid by billions of dollars.

A key provision would require some Medicaid enrollees to work, volunteer, or complete other qualifying activities for 80 hours a month, starting at the end of 2026. Most Medicaid enrollees already work or have some reason they can’t, such as a disability, according to KFF.

House Speaker Mike Johnson has defended the requirement as “moral.”

“If you are able to work and you refuse to do so, you are defrauding the system. You’re cheating the system,” he told CBS News in the wake of the bill’s passage.

A Senate version of the bill also includes work requirements and more frequent eligibility checks for Medicaid recipients.

Fiscal conservatives argue a solution is needed to curb health care’s rising costs.

The U.S. spends about twice as much per capita on health care as other wealthy nations, and that spending would grow under the GOP’s budget bill, said Michael Cannon, director of health policy studies at the Cato Institute, a think tank that supports less government spending on health care.

But the bill doesn’t address the root causes of administrative complexity or unaffordable care, Cannon said. To do that would entail, for instance, doing away with the tax break for employer-sponsored care, which he said fuels excessive spending, raises prices, and ties health insurance to employment. He said the bill should cut federal funding for Medicaid, not just limit its growth.

The bill would throw more people into a high-cost health care landscape with little protection, said Aaron Carroll, president and CEO of AcademyHealth, a nonpartisan health policy research nonprofit.

“There’s a ton of evidence that shows that if you make people pay more for health care, they get less health care,” he said. “There’s lots of evidence that shows that disproportionately affects poor, sicker people.”

Labon McKenzie, 45, lives in Georgia, the only state that requires some Medicaid enrollees to work or complete other qualifying activities to obtain coverage.

He hasn’t been able to work since he broke multiple bones after he fell through a skylight while on the job three years ago. He got fired from a county road and bridge crew after the accident and hasn’t been approved for Social Security or disability benefits.

“I can’t stand up too long,” he said. “I can’t sit down too long.”

In February, McKenzie started seeing double, but canceled an appointment with an ophthalmologist because he couldn’t come up with the $300 the doctor wanted in advance. His cousin gave him an eye patch to tide him over, and, in desperation, he took expired eye drops his daughter gave him. “I had to try something,” he said.

McKenzie, who lives in rural Fort Gaines, wants to work again. But without benefits, he can’t get the care he needs to become well enough.

“I just want my body fixed,” he said.

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One evening last December, Tieqiao Zhang felt severe stomach pain.

After it subsided later that night, he thought it might be food poisoning. When the pain returned the next morning, Zhang realized the source of his pain might not be as “simple as bad food.”

He didn’t want to wait for an appointment with his regular doctor, but he also wasn’t sure if the pain warranted emergency care, he said.

Zhang, 50, opted to visit Parkland Health’s Urgent Care Emergency Center, a clinic near his home in Dallas where he’d been treated in the past. It’s on the campus of Parkland, the city’s largest public hospital, which has a separate emergency room.

He believed the clinic was an urgent care center, he said.

A CT scan revealed that Zhang had a kidney stone. A physician told him it would pass naturally within a few days, and Zhang was sent home with a prescription for painkillers, he said.

Five days later, Zhang’s stomach pain worsened. Worried and unable to get an immediate appointment with a urologist, Zhang once again visited the Urgent Care Emergency Center and again was advised to wait and see, he said.

Two weeks later, Zhang passed the kidney stone.

Then the bills came.

The Patient: Tieqiao Zhang, 50, who is insured by BlueCross and BlueShield of Texas through his employer.

Medical Services: Two diagnostic visits, including lab tests and CT scans.

Service Provider: Parkland Health & Hospital System. The hospital is part of the Dallas County Hospital District.

Total Bills: The in-network hospital charged $19,543 for the two visits. BlueCross and BlueShield of Texas paid $13,070.96. Zhang owed $1,000 to Parkland — a $500 emergency room copay for each of his two visits.

What Gives: Parkland’s Urgent Care Emergency Center is what’s called a freestanding emergency department.

The number of freestanding emergency rooms in the United States grew tenfold from 2001 to 2016, drawing attention for sending patients eye-popping bills. Most states allow them to operate, either by regulation or lack thereof. Some states, including Texas, have taken steps to regulate the centers, such as requiring posted notices identifying the facility as a freestanding emergency department.

Urgent care centers are a more familiar option for many patients. Research shows that, on average, urgent care visits can be about 10 times cheaper than a low-acuity — or less severe — visit to an ER.

But the difference between an urgent care clinic and a freestanding emergency room can be tough to discern.

Generally, to bill as an emergency department, facilities must meet specific requirements, such as maintaining certain staff, not refusing patients, and remaining open around the clock.

The freestanding emergency department at Parkland is 40 yards away from its main emergency room and operates under the same license, according to Michael Malaise, the spokesperson for Parkland Health. It is closed on nights and Sundays.

(Parkland’s president and chief executive officer, Frederick Cerise, is a member of KFF’s board of trustees. KFF Health News is an editorially independent program of KFF.) The hospital is “very transparent” about the center’s status as an emergency room, Malaise told KFF Health News in a statement.

Malaise provided photographs of posted notices stating, “This facility is a freestanding emergency medical care facility,” and warning that patients would be charged emergency room fees and could also be charged a facility fee. He said the notices were posted in the exam rooms, lobby, and halls at the time of Zhang’s visits.

Zhang’s health plan required a $500 emergency room copay for each of the two visits for his kidney stone.

When Zhang visited the center in 2021 for a different health issue, he was charged only $30, his plan’s copay for urgent care, he said. (A review of his insurance documents showed Parkland also used emergency department billing codes then. BCBS of Texas did not respond to questions about that visit.)

One reason “I went to the urgent care instead of emergency room, although they are just next door, is the copayment,” he said.

The list of services that Parkland’s freestanding emergency room offers resembles that of urgent care centers — including, for some centers, diagnosing a kidney stone, said Ateev Mehrotra, a health care policy professor at Harvard Medical School.

Having choices leaves patients on their own to decipher not only the severity of their ailment, but also what type of facility they are visiting all while dealing with a health concern. Self-triage is “a very difficult thing,” Mehrotra said.

Zhang said he did not recall seeing posted notices identifying the center as a freestanding emergency department during his visits, nor did the front desk staff mention a $500 copay. Plus, he knew Parkland also had an emergency room, and that was not the building he visited, he said.

The name is “misleading,” Zhang said. “It’s like being tricked.”

Parkland opened the center in 2015 to reduce the number of patients in its main emergency room, which is the busiest in the country, Malaise said. He added that the Urgent Care Emergency Center, which is staffed with emergency room providers, is “an extension of our main emergency room and is clearly marked in multiple places as such.”

Malaise first told KFF Health News that the facility isn’t a freestanding ER, noting that it is located in a hospital building on the campus. Days later, he said the center is “held out to the public as a freestanding emergency medical care facility within the definition provided by Texas law.”

The Urgent Care Emergency Center name is intended to prevent first responders and others facing life-threatening emergencies from visiting the center rather than the main emergency room, Malaise said.

“If you have ideas for a better name, certainly you can send that along for us to consider,” he said.

Putting the term “urgent” in the clinic’s name while charging emergency room prices is “disingenuous,” said Benjamin Ukert, an assistant professor of health economics and policy at Texas A&M University.

When Ukert reviewed Zhang’s bills at the request of KFF Health News, he said his first reaction was, “Wow, I am glad that he only got charged $500; it could have been way worse” — for instance, if the facility had been out-of-network.

The Resolution: Zhang said he paid $400 of the $1,000 he owes in total to avoid collections while he continues to dispute the amount.

Zhang said he first reached out to his insurer, thinking his bills were wrong, before he reached out to Parkland several times by phone and email. He said customer service representatives told him that, for billing purposes, Parkland doesn’t differentiate its Urgent Care Emergency Clinic from its emergency department.

More from Bill of the Month

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BlueCross and BlueShield of Texas did not respond to KFF Health News when asked for comment.

Zhang said he also reached out to a county commissioner’s office in Dallas, which never responded, and to the Texas Department of Health, which said it doesn’t have jurisdiction over billing matters. He said the staff for his state representative, Morgan Meyer, contacted the hospital on his behalf, but later told him the hospital would not change his bill.

As of mid-May, his balance stood at $600, or $300 for each visit.

The Takeaway: Lawmakers in Texas and around the country have tried to increase price transparency at freestanding emergency rooms, including by requiring them to hand out disclosures about billing practices.

But experts said the burden still falls disproportionately on patients to navigate the growing menu of options for care.

It’s up to the patient to walk into the right building, said Mehrotra, the Harvard professor. It doesn’t help that most providers are opaque about their billing practices, he said.

Mehrotra said that some freestanding emergency departments in Texas use confusing names like “complete care,” which mask the facilities’ capabilities and billing structure.

Ukert said states could do more to untangle the confusion patients face at such centers, like banning the use of the term “urgent care” to describe facilities that bill like emergency departments.

Bill of the Month is a crowdsourced investigation by KFF Health News 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!

Emily Siner reported the audio story.

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

In April, just 12 weeks into her pregnancy, Kathleen Clark was standing at the receptionist window of her OB-GYN’s office when she was asked to pay $960, the total the office estimated she would owe after she delivered.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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It was about midnight in June 2022 when police officers showed up at Angela Collier’s door and told her that someone anonymously requested a welfare check because they thought she might have had a miscarriage.

Standing in front of the concrete steps of her home in Midway, Texas, Collier, initially barefoot and wearing a baggy gray T-shirt, told officers she planned to see a doctor in the morning because she had been bleeding.

Police body camera footage obtained by KFF Health News through an open records request shows that the officers then told Collier — who was 29 at the time and enrolled in online classes to study psychology — to turn around.

Instead of taking her to get medical care, they handcuffed and arrested her because she had outstanding warrants in a neighboring county for failing to appear in court to face misdemeanor drug charges three weeks earlier. She had missed that court date, medical records show, because she was at a hospital receiving treatment for pregnancy complications.

Despite her symptoms and being about 13 weeks pregnant, Collier spent the next day and a half in the Walker County Jail, about 80 miles north of Houston. She said her bleeding worsened there and she begged repeatedly for medical attention that she didn’t receive, according to a formal complaint she filed with the Texas Commission on Jail Standards.

“There wasn’t anything I could do,” she said, but “just lay there and be scared and not know what was going to happen.”

Collier’s experience highlights the limited oversight and absence of federal standards for reproductive care for pregnant women in the criminal justice system. Incarcerated people have a constitutional right to health care, yet only a half-dozen states have passed laws guaranteeing access to prenatal or postpartum medical care for people in custody, according to a review of reproductive health care legislation for incarcerated people by a research group at Johns Hopkins School of Medicine. And now abortion restrictions might be putting care further out of reach.

Collier’s arrest was “shocking and disturbing” because officers “blithely” took her to jail despite her miscarriage concerns, said Wanda Bertram, a spokesperson for the Prison Policy Initiative, a nonprofit organization that studies incarceration. Bertram reviewed the body cam footage and Collier’s complaint.

“Police arrest people who are in medical emergencies all the time,” she said. “And they do that regardless of the fact that the jail is often not equipped to care for those people in the way an emergency room might be.”

After a decline during the first year of the pandemic, the number of women in U.S. jails is once again rising, hitting nearly 93,000 in June 2022, a 33% increase over 2020, according to the Department of Justice. Tens of thousands of pregnant women enter U.S. jails each year, according to estimates by Carolyn Sufrin, an associate professor of gynecology and obstetrics at Johns Hopkins School of Medicine, who researches pregnancy care in jails and prisons.

The health care needs of incarcerated women have “always been an afterthought,” said Dana Sussman, deputy executive director at Pregnancy Justice, an organization that defends women who have been charged with crimes related to their pregnancy, such as substance use. For example, about half of states don’t provide free menstrual products in jails and prisons. “And then the needs of pregnant women are an afterthought beyond that,” Sussman said.

Researchers and advocates worry that confusion over recent abortion restrictions may further complicate the situation. A nurse cited Texas’ abortion laws as one reason Collier didn’t need care, according to her statement to the standards commission.

Texas law allows treatment of miscarriage and ectopic pregnancies, a life-threatening condition in which a fertilized egg implants outside the uterus. However, different interpretations of the law can create confusion.

A nurse told Collier that “hospitals no longer did dilation and curettage,” Collier told the commission. “Since I wasn’t hemorrhaging to the point of completely soaking my pants, there wasn’t anything that could be done for me,” she said.

Collier testified that she saw a nurse only once during her stay in jail, even after she repeatedly asked jail staffers for help. The nurse checked her temperature and blood pressure and told her to put in a formal request for Tylenol. Collier said she completed her miscarriage shortly after being released.

Collier’s case is a “canary in a coal mine” for what is happening in jails; abortion restrictions are “going to have a huge ripple effect on a system already unequipped to handle obstetric emergencies,” Sufrin said.

‘There Are No Consequences’

Jail and prison health policies vary widely around the country and often fall far short of the American College of Obstetricians and Gynecologists’ guidelines for reproductive health care for incarcerated people. ACOG and other groups recommend that incarcerated women have access to unscheduled or emergency obstetric visits on a 24-hour basis and that on-site health care providers should be better trained to recognize pregnancy problems.

In Alabama, where women have been jailed for substance use during pregnancy, the state offers pregnancy tests in jail. But it doesn’t guarantee a minimum standard of prenatal care, such as access to extra food and medical visits, according to Johns Hopkins’ review.

Policies for pregnant women at federal facilities also don’t align with national standards for nutrition, safe housing, and access to medical care, according to a 2021 report from the Government Accountability Office.

Even when laws exist to ensure that incarcerated pregnant women have access to care, the language is often vague, leaving discretion to jail personnel.

Since 2020, Tennessee law has required that jails and prisons provide pregnant women “regular prenatal and postpartum care, as necessary.” But last August a woman gave birth in a jail cell after seeking medical attention for more than an hour, according to the Montgomery County Sheriff’s Office.

Pregnancy complications can quickly escalate into life-threatening situations, requiring more timely and specialized care than jails can often provide, said Sufrin. And when jails fail to comply with laws on the books, little oversight or enforcement may exist.

In Louisiana, many jails didn’t consistently follow laws that aimed to improve access to reproductive health care, such as providing free menstrual items, according to a May 2023 report commissioned by state lawmakers. The report also said jails weren’t transparent about whether they followed other laws, such as prohibiting the use of solitary confinement for pregnant women.

Krishnaveni Gundu, as co-founder of the Texas Jail Project, which advocates for people held in county jails, has lobbied for more than a decade to strengthen state protections for pregnant incarcerated people.

In 2019, Texas became one of the few states to require that jails’ health policies include obstetrical and gynecological care. The law requires jails to promptly transport a pregnant person in labor to a hospital, and additional regulations mandate access to medical and mental health care for miscarriages and other pregnancy complications.

But Gundu said lack of oversight and meaningful enforcement mechanisms, along with “apathy” among jail employees, have undermined regulatory protections.

“All those reforms feel futile,” said Gundu, who helped Collier prepare for her testimony. “There are no consequences.”

Before her arrest, Collier had been to the hospital twice that month experiencing pregnancy complications, including a bladder infection, her medical records show. Yet the commission found that Walker County Jail didn’t violate minimum standards. The commission did not consider the police body cam footage or Collier’s personal medical records, which support her assertions of pregnancy complications, according to investigation documents obtained by KFF Health News via an open records request.

In making its determination, the commission relied mainly on the jail’s medical records, which note that Collier asked for medical attention for a miscarriage once, in the morning on the day she was released, and refused Tylenol.

“Your complaint of no medical care is unfounded,” the commission concluded, “and no further action will be taken.”

Collier’s miscarriage had ended before she entered the jail, argued Lt. Keith DeHart, jail lieutenant for the Walker County Sheriff’s Office. “I believe there was some misunderstanding,” he said.

Brandon Wood, executive director of the commission, wouldn’t comment on Collier’s case but defends the group’s investigation as thorough. Jails “have a duty to ensure that those records are accurate and truthful,” he said. And most Texas jails are complying with heightened standards, he said.

Bertram disagrees, saying the fact that care was denied to someone who was begging for it speaks volumes. “That should tell you something about what these standards are worth,” she said.

Last year, Chiree Harley spent six weeks in a Comal County, Texas, jail shortly after discovering she was pregnant and before she could get prenatal care, she said.

I was “thinking that I was going to be well taken care of,” said Harley, 37, who also struggled with substance use.

Jail officials put her in the infirmary, Harley said, but she saw only a jail doctor and never visited an OB-GYN, even though she had previous pregnancy complications including losing multiple pregnancies at around 21 weeks. This time she had no idea how far along she was.

She said that she started leaking amniotic fluid and having contractions on Nov. 1, but that jail officials waited nearly two days to take her to a hospital. Harley said officers forced her to sign papers releasing her from jail custody while she was having contractions in the hospital. Harley delivered at 23 weeks; the baby boy died less than a day later in her arms.

The whole experience was “very scary,” Harley said. “Afterwards we were all very, very devastated.”

Comal County declined to send Harley’s medical and other records in response to an open records request. Michael Shaunessy, a partner at McGinnis Lochridge who represents Comal County, said in a statement that, “at all times, the Comal County Jail provided Chiree Harley with all appropriate and necessary medical treatment for her and her unborn child.” He did not respond to questions about whether Harley was provided specialized obstetric care.

‘I Trusted Those People’

In states like Idaho, Mississippi, and Louisiana that installed near-total abortion bans after the Supreme Court eliminated the constitutional right to abortion in 2022, some patients might have to wait until no fetal cardiac activity is detected before they can get care, said Kari White, the executive and scientific director of Resound Research for Reproductive Health.

White co-authored a recent study that documented 50 cases in which pregnancy care deviated from the standard because of abortion restrictions even outside of jails and prisons. Health care providers who worry about running afoul of strict laws might tell patients to go home and wait until their situations worsen.

“Obviously, it’s much trickier for people who are in jail or in prison, because they are not going to necessarily be able to leave again,” she said.

Advocates argue that boosting oversight and standards is a start, but that states need to find other ways to manage pregnant women who get caught in the justice system.

For many pregnant people, even a short stay in jail can cause lasting trauma and interrupt crucial prenatal care.

Collier remembers being in “disbelief” when she was first arrested but said she was not “distraught.”

“I figured I would be taken care of, that nothing bad was gonna happen to me,” she said. As it became clear that she wouldn’t get care, she grew distressed.

After her miscarriage, Collier saw a mental health specialist and started medication to treat depression. She hasn’t returned to her studies, she said.

“I trusted those people,” Collier said about the jail staff. “The whole experience really messed my head up.”

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