“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.

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

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

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

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

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

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

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

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

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

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

‘I Was Scared’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“No problem I understand,” Marsh wrote back.

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

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

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

Pregnancy Criminalization

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

‘I Found My Strength’

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

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

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

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

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

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

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

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An art deco sign still marks the main entrance, but the front doors are locked, and the parking lot is empty. These days, a convenience store across North Edwards Avenue is far busier than the old Taborian Hospital, which first shut down more than 40 years ago.

Myrna Smith-Thompson, who serves as executive director of the civic group that owns the property, lives 100 miles away in Memphis, Tennessee, and doesn’t know what’s to become of the deteriorating building.

“I am open to suggestions,” said Smith-Thompson, whose grandfather led a Black fraternal organization now called the Knights and Daughters of Tabor. In 1942, that group established Taborian Hospital, a place staffed by Black doctors and nurses that exclusively admitted Black patients, during a time when Jim Crow laws barred them from accessing the same health care facilities as white patients.

“This is a very painful conversation,” said Smith-Thompson, who was born at Taborian Hospital in 1949. “It’s a part of my being.”

A similar scenario has played out in hundreds of other rural communities across the United States, where hospitals have faced closure over the past 40 years. In that regard, the story of Mound Bayou’s hospital isn’t unique.

But there’s more to this hospital closure than the loss of inpatient beds, historians say. It’s also a tale of how hundreds of Black hospitals across the U.S. fell casualty to social progress.

The Civil Rights Act of 1964 and the enactment of Medicare and Medicaid in 1965 benefited millions of people. The federal campaign to desegregate hospitals, culminating in a 1969 court case out of Charleston, South Carolina, guaranteed Black patients across the South access to the same health care facilities as white patients. No longer were Black doctors and nurses prohibited from training or practicing medicine in white hospitals. But the end of legal racial segregation precipitated the demise of many Black hospitals, which were a major source of employment and a center of pride for Black Americans.

“And not just for physicians,” said Vanessa Northington Gamble, a medical doctor and historian at George Washington University. “They were social institutions, financial institutions, and also medical institutions.”

In Charleston, staff members at a historically Black hospital on Cannon Street started publishing a monthly journal in 1899 called The Hospital Herald, which focused on hospital work and public hygiene, among other topics. When Kansas City, Missouri, opened a hospital for Black patients in 1918, people held a parade. Taborian Hospital in Mound Bayou included two operating rooms and state-of-the-art equipment. It’s also where famed civil rights activist Fannie Lou Hamer died in 1977.

“There were Swedish hospitals. There were Jewish hospitals. There were Catholic hospitals. That’s also part of the story,” said Gamble, author of “Making a Place for Ourselves: The Black Hospital Movement, 1920-1945.”

“But racism in medicine was the main reason why there was an establishment of Black hospitals,” she said.

By the early 1990s, Gamble estimated, there were only eight left.

“It has ripple effects in a way that affect the fabric of the community,” said Bizu Gelaye, an epidemiologist and program director of Harvard University’s Mississippi Delta Partnership in Public Health.

Researchers have largely concluded that hospital desegregation improved the health of Black patients over the long term.

One 2009 study focusing on motor vehicle accidents in Mississippi in the ’60s and ’70s found that Black people were less likely to die after hospital desegregation. They could access hospitals closer to the scene of a crash, reducing the distance they would have otherwise traveled by approximately 50 miles.

An analysis of infant mortality, published in 2006 by economists at the Massachusetts Institute of Technology, found that hospital desegregation in the South substantially helped close the mortality gap between Black and white infants. That’s partly because Black infants suffering from illnesses such as diarrhea and pneumonia got better access to hospitals, the researchers found.

A new analysis, recently accepted for publication in the Review of Economics and Statistics, suggests that racism continued to harm the health of Black patients in the years after hospital integration. White hospitals were compelled to integrate starting in the mid-1960s if they wanted to receive Medicare funding. But they didn’t necessarily provide the same quality of care to Black and white patients, said Mark Anderson, an economics professor at Montana State University and co-author of the paper. His analysis found that hospital desegregation had “little, if any, effect on Black postneonatal mortality” in the South between 1959 and 1973.

Nearly 3,000 babies were born at Taborian Hospital before it closed its doors in 1983. The building remained vacant for decades until 10 years ago, when a $3 million federal grant helped renovate the facility into a short-lived urgent care center. It closed again only one year later amid a legal battle over its ownership, Smith-Thompson said, and has since deteriorated.

“We would need at least millions, probably,” she said, estimating the cost of reopening the building. “Now, we’re back where we were prior to the renovation.”

In 2000, the hospital was listed as one of the most endangered historic places in Mississippi by the Mississippi Heritage Trust. That’s why some people would like to see it reopened in any capacity that ensures its survival as an important historical site.

Hermon Johnson Jr., director of the Mound Bayou Museum, who was born at Taborian Hospital in 1956, suggested the building could be used as a meeting space or museum. “It would be a huge boost to the community,” he said.

Meanwhile, most of the hospital’s former patients have died or left Mound Bayou. The city’s population has dropped by roughly half since 1980, U.S. Census Bureau records show. Bolivar County ranks among the poorest in the nation and life expectancy is a decade shorter than the national average.

A community health center is still open in Mound Bayou, but the closest hospital is in Cleveland, Mississippi, a 15-minute drive.

Mound Bayou Mayor Leighton Aldridge, also a board member of the Knights and Daughters of Tabor, said he wants Taborian Hospital to remain a health care facility, suggesting it might be considered for a new children’s hospital or a rehabilitation center.

“We need to get something back in there as soon as possible,” he said.

Smith-Thompson agreed and feels the situation is urgent. “The health care services that are available to folks in the Mississippi Delta are deplorable,” she said. “People are really, really sick.”

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The annual event is one way the medical school is trying to recruit more Black students in a state where almost 4 in 10 people, but only 1 in 10 doctors, are Black.

The University of Mississippi isn’t alone. Medical schools around the country are trying to enroll more Black, Hispanic and Native American students, all of whom remain underrepresented in the field of medicine. Research has shown that patients of color prefer seeing doctors of their own race — and some studies have shown health outcomes for Black patients are better when they see Black doctors.

But a recent swell of Republican opposition threatens to upend those efforts, school administrators say, and could exacerbate deep health disparities experienced by people of color.

Several states, including Alabama, Florida and Texas, have restricted diversity, equity and inclusion efforts in higher education. Republican lawmakers in Mississippi have so far failed to enact such a law, though two were introduced during the most recent legislative session. Both died in committee.

“I don’t expect this movement of anti-DEI legislation to slow down or stop at all,” said Anton Gunn, a health-care consultant and former head of the Office of External Affairs at the U.S. Department of Health and Human Services.

Angela Burks Hill, a Mississippi state senator and former science teacher who introduced one of the bills, said she thinks focusing on race contributes to division. “Can’t we just be happy with more highly qualified doctors no matter their skin color? I thought a color-blind society was the goal,” she said. “The millions spent on DEI salaries and programs should be reallocated to something that benefits all students.”

Demondes Haynes, associate dean of medical school admissions at the University of Mississippi Medical Center, graduated from the medical school in 1999 as one of only four Black students in his class. Today, he estimated, more than 80 students across the four-year program are Black.

“We absolutely are not saying every Black patient has to have a Black doctor,” Haynes said. But because the patient population in Mississippi is diverse, “they should at least have the right to say, ‘This is what I want,’” he added.

On African American Visit Day, I spoke with several medical school students at the University of Mississippi who said they wouldn’t have enrolled if not for one of the university’s DEI outreach efforts.

Jerrian Reedy, an African American student from Hattiesburg, Miss., who recently finished his first year of medical school at the University of Mississippi, said when he was applying, the fact that several of the school’s top administrators were Black made him feel the institution was committed to diversity.

“It just made me think, ‘Hey, well, you — we — are welcome here,’” Reedy said.

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“Just seeing him laid up in bed, in a hospital bed, it was traumatizing, to say the least,” Reedy said.

His father died within a week of being admitted, in the middle of a nine-month span when Reedy also lost an aunt and a grandmother. “They say death comes in threes,” he said.

That chain of events prompted him to pursue a career in medicine, one that might help him spare other children from losing loved ones too soon.

Fifteen years later, Reedy has completed his first year at the University of Mississippi School of Medicine — a remarkable feat, and not only because his career path was born of grief and trauma. Reedy is among a small share of Black medical school students in a state where nearly 4 in 10 people — but only 1 in 10 doctors — identify as Black or African American. Of the 660 medical school students enrolled in the same four-year program as Reedy, 82 students, or about 12%, are Black.

Medical schools around the country are trying to recruit Black, Hispanic, and Native American students, all of whom remain disproportionately underrepresented in the field of medicine. Research has shown that patients of color prefer seeing doctors of their own race — and some studies have shown health outcomes are better for Black patients seeing Black doctors.

But a recent swell of Republican opposition threatens to upend those efforts, school administrators say, and could exacerbate deep health disparities already experienced by people of color.

Since 2023 — the year the Supreme Court voted to outlaw affirmative action in higher education — more than two dozen states, including Alabama, Florida, Mississippi, North Carolina, and Texas, have introduced or passed laws to restrict or ban diversity, equity, and inclusion, or DEI, programs.

“I don’t expect this movement of anti-DEI legislation to slow down or stop at all,” said Anton Gunn, a health care consultant and former head of the Office of External Affairs at the U.S. Department of Health and Human Services. “And it likely will exacerbate if Donald Trump gets the opportunity to be president of the United States again.”

Diversity Programs Face Pushback

In 2023, Florida and Texas became the first states to pass laws that banned DEI efforts in higher education. Several other states, including Idaho, North Carolina, and Wyoming, passed laws targeting such programs this year.

In Mississippi, state Rep. Becky Currie and state Sen. Angela Burks Hill, both Republicans, introduced separate bills that would have restricted how colleges and universities could spend money on DEI initiatives. Both bills died in legislative committees and were not brought before the 2024 legislature for a vote.

In a statement, Hill said that Mississippi needs more doctors of all kinds, not just more Black doctors, and that she thinks money spent on DEI salaries and programs should be reallocated to initiatives benefiting all students.

“Qualifications should determine who gets into medical school not color or socioeconomic status,” she said. “Can’t we just be happy with more highly qualified doctors no matter their skin color? I thought a color blind society was the goal.”

Nationally, the movement to ban DEI programs has broad conservative support.

Jay Greene, a senior research fellow at the Heritage Foundation, a conservative think tank, said he believes diversity programs “fail for a hundred reasons.” He cited research he conducted with a conservative medical advocacy group called Do No Harm refuting the premise that access to Black doctors improves health outcomes among Black patients.

“That doesn’t mean there’s no potential benefits for having greater diversity in the doctor workforce,” Greene said. Having more Black doctors, for example, might encourage more Black children to consider a career in health care, he said. “But that benefit is not health outcomes.”

Meanwhile, school administrators are closely watching the progress of such laws.

In March, the University of Florida eliminated all DEI programs and terminated jobs related to those efforts. In Alabama, lawyers and school leaders are grappling with a bill signed the same month by Republican Gov. Kay Ivey that bans DEI programs in public schools, state agencies, and universities starting Oct. 1.

“We have to be very, very careful,” said Richard deShazo, who teaches at the University of Alabama’s Marnix E. Heersink School of Medicine in Birmingham and used to chair a committee that raised money for Black medical school students.

“You cannot raise money for Black kids. You have to raise money for medical students,” he said.

A Bitter History

A shortage of Black doctors isn’t unique to Mississippi. The same story could be told in many other places, especially across the South, where more than half of all Black Americans live and where health outcomes regularly rank among the worst in the United States.

But a look at Mississippi, one of the unhealthiest states in the country, shows how the roots of systemic racism continue to shape the nation’s health care workforce.

“A lot of the Black physicians in the state have a bitter taste in their mouth about our medical school,” said Demondes Haynes, associate dean of medical school admissions at the University of Mississippi Medical Center, where he graduated in 1999 as one of four Black students in his class.

An estimated 1.1 million Black people live in Mississippi, where there are fewer than 600 Black doctors. Research suggests health outcomes would improve if there were more. One study published last year in the medical journal JAMA Network Open found that life expectancy was longer among Black patients in counties with higher ratios of Black primary care physicians.

In a study based in Oakland, California, that involved more than 1,300 Black men, those who were assigned a Black doctor were more likely to agree to screening tests for diabetes, cholesterol, and other health concerns, according to the findings published in 2018 by the National Bureau of Economic Research.

“We absolutely are not saying every Black patient has to have a Black doctor,” Haynes said. But because the patient population in Mississippi is diverse, “they should at least have the right to say, ‘This is what I want,’” he added.

However, most Black patients aren’t afforded that choice. Nearly two dozen of Mississippi’s 82 counties have no Black doctors, while four counties claim no doctors at all, according to a physician workforce report published by the state in 2019.

For more than a century, dating to its founding in the mid-1800s, the University of Mississippi didn’t admit Black students — and that policy applied to its medical school. In 1972, nearly 10 years after the Civil Rights Act of 1964 banned racial segregation in higher education, the first Black physician graduated from the medical school in Jackson. Even then, very few Black students were admitted to study medicine there each year.

Before the federal government banned the school from rejecting Black applicants because of their race, aspiring Black doctors who applied were diverted to one of the historically Black colleges and universities, or HBCUs, such as Meharry Medical College in Nashville, Haynes said.

Many older Black physicians in Mississippi still remember getting those rejection letters, he said, pointing out composite photographs of physician graduates that line the walls of the medical school building in Jackson. Many of the earliest composites, dating to the 1950s, showcase classes of all-white, and almost all-male, students.

“Mississippi history — everybody remembers it,” Haynes said. “And those people who experienced it, it’s hard for them.”

‘Shaping the Possibilities’

On a damp Saturday morning in mid-April, 17-year-old Dorothy Gray, a high school junior, stepped up to a hospital bed at the medical school in Jackson to intubate a mock patient in a simulation lab.

Gray was one of more than 100 high school and college students who attended the University of Mississippi School of Medicine’s annual African American Visit Day, established more than 10 years ago to foster interest among prospective Black students. The administrators, who also host special visiting days for Hispanic and Native American students, said anyone, regardless of race or ethnicity, may attend. They acknowledge that most attendees won’t become doctors, and their purpose isn’t to extend preferential treatment to minority applicants.

“This is about shaping the possibilities of what could be,” said Loretta Jackson-Williams, the school’s vice dean for medical education. “These kids are at that precipice where they can choose to do something that’s really hard for their future or they can choose an easier pathway. That choice doesn’t come about overnight.”

Besides African American Visit Day, medical school leaders in Mississippi also offer a test prep program for applicants from underrepresented backgrounds who have been rejected from medical school.

The school recently identified 16 applicants, 12 of whom are Black, who were not accepted to the medical school during the last admissions cycle because their MCAT scores were too low. This year, those applicants will receive a test prep course designed by The Princeton Review — free of charge — and will have a chance to meet with administrators to learn how their medical school applications might be strengthened.

“So many students have never had someone tell them, ‘You can do this. I believe you can do this,’” said Dan Coleman, the medical school’s outreach director.

For Jerrian Reedy, who wants to become an orthopedic surgeon, the path to medical school was years in the making. He took advantage of the University of Mississippi Medical Center’s PROMISE program — short for Promoting Recruitment Opportunities in Medicine with Individual Study Experiences — which assures acceptance to students from disadvantaged backgrounds who meet certain eligibility requirements, including a 3.0 GPA in their undergraduate science classes.

During his sophomore year as an undergraduate, Reedy saw an opportunity to learn more about medical school when Haynes, the assistant dean, visited the Ole Miss campus in Oxford to interview students.

“I saw some open slots, put my name down,” he said. “The rest is history.”

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But that’s not the case in the American South. And especially not for Black women.

In South Carolina, Black women were more than four times as likely to die of a pregnancy-related cause in 2020 than White women. And discrimination was a factor in more than a third of the state’s 18 pregnancy-related deaths of women of all races, according to a recently published legislative report by the state’s Department of Health and Environmental Control.

Discrimination was the most common circumstance associated with South Carolina maternal deaths from 2018 to 2020, the report found, topping obesity, substance use disorders and mental health conditions.

It’s a problem across the South. Arkansas had the highest maternal mortality rate in the United States from 2018 to 2021, according to data compiled by KFF — 43.5 deaths per 100,000 live births, about four times the rate in California. Mississippi had the second-highest rate: 43 deaths per 100,000 live births. The top eight states are all below the Mason-Dixon Line.

South Carolina’s overall pregnancy-related mortality rate dropped by 16 percent from 2019 to 2020, but improvement was observed only among White patients. The pregnancy-related mortality rate among Black women increased year over year, and the gap in pregnancy-related deaths between Black and White people widened, according to the state’s report.

A spokesperson for South Carolina Gov. Henry McMaster, a Republican, did not respond to questions about the report, and no one from the state health department was made available to be interviewed about its findings. Via email, agency spokesperson Casey White highlighted that the report recommends hospitals and health providers across the state mandate cultural competency training for employees to address discrimination.

“When you say racism, people think of the worst of the worst — a Klansman or something of that level,” said Lesley Rathbun, a certified nurse-midwife who sits on the state’s Maternal Morbidity and Mortality Review Committee, which produced the report. But racism in health care, she said, is often so pervasive that many providers don’t even recognize it.

For example, some nurses and doctors still believe Black patients have a different tolerance for pain than White patients.

“That’s the kind of thing that’s been entrenched in health care for a very long time,” she said. “We have a very long history of racism.”

The review committee first convened in 2016. Rathbun said the group meets quarterly to review pregnancy-related deaths.

Members consider evidence including medical records, autopsy reports and interviews that health department nurses conduct with surviving family members to determine if a death is pregnancy-related.

The group examined 79 deaths in 2020 and determined that 18 were pregnancy-related. Seventeen of those deaths, the panel determined, were preventable.

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The key word there is “diverse.” So far, the program has collected more than 560,000 DNA samples, and nearly half of participants identify as being part of a racial or ethnic minority group.

NIH researchers strategically partnered with community health centers, faith-based groups, and Black fraternities and sororities to recruit people who have been historically underrepresented in biomedical research.

“We are actually looking to overrepresent” these previously marginalized groups, explained Martin Mendoza, director of health equity for All of Us, which will continue to enroll participants through at least 2026, when researchers intend to evaluate the next phases of the project.

Their success to date is remarkable for a few reasons. Participation in biomedical research is typically low in diversity. And when it comes to genetics research specifically, diversity has been nearly nonexistent.

Since the completion more than 20 years ago of the Human Genome Project, which mapped most human genes for the first time, nearly 90 percent of genomics studies have been conducted using DNA from participants of European descent, research shows.

Humans of all races and ethnicities are 99 percent genetically identical. But even small differences in our DNA can have a profound impact on our health.

Here’s an example: A few years ago, researchers found that some Black patients had been misdiagnosed with a potentially fatal heart condition called hypertrophic cardiomyopathy because they’d tested positive for genetic variants that were thought to be harmful. But it turns out the variants, more common among Black Americans than among White Americans, are likely harmless. The diagnosis, though, is life-altering — patients with hypertrophic cardiomyopathy have traditionally been discouraged from competing in sports, for example.

Such misdiagnoses can be avoided if “even modest numbers of people from diverse populations are included in sequence databases,” NIH wrote.

Easier said than done. A genetics research project underway in South Carolina called In Our DNA SC is struggling to recruit enough Black participants. The scientists behind the project said two years ago they aimed to collect samples reflecting the diversity of the state, where 27 percent of residents identify as Black or African American.

“We’d like to be a lot more diverse,” said Daniel Judge, principal investigator for the study and a cardiovascular genetics specialist at the Medical University of South Carolina.

To date, only about 12 percent of participants who provided socio-demographic data identify as Black. An additional 5 percent identify as belonging to another racial minority.

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“It’s a walking billboard,” said Moultrie, a health care advocate who serves on the community advisory board for In Our DNA SC, a study underway at the university that aims to enroll 100,000 South Carolinians — including a representative percentage of Black people — in genetics research. The goal is to better understand how genes affect health risks such as cancer and heart disease.

Moultrie, who is Black and has participated in the research project himself, used the opportunity at the dental clinic to encourage the women to sign up and contribute their DNA. He keeps brochures about the study in his car and at the barbershop he visits weekly for this reason. It’s one way he wants to help solve a problem that has plagued the field of genetics research for decades: The data is based mostly on DNA from white people.

Project leaders in Charleston told KFF Health News in 2022 that they hoped to enroll participants who reflect the demographic diversity of South Carolina, where just under 27% of residents identify as Black or African American. To date, though, they’ve failed to hit that mark. Only about 12% of the project’s participants who provided sociodemographic data identify as Black, while an additional 5% have identified as belonging to another racial minority group.

“We’d like to be a lot more diverse,” acknowledged Daniel Judge, principal investigator for the study and a cardiovascular genetics specialist at the Medical University of South Carolina.

Lack of diversity in genetics research has real health care implications. Since the completion more than 20 years ago of the Human Genome Project, which mapped most human genes for the first time, close to 90% of genomics studies have been conducted using DNA from participants of European descent, research shows. And while human beings of all races and ancestries are more than 99% genetically identical, even small differences in genes can spell big differences in health outcomes.

“Precision medicine” is a term used to describe how genetics can improve the way diseases are diagnosed and treated by considering a person’s DNA, environment, and lifestyle. But if this emerging field of health care is based on research involving mostly white people, “it could lead to mistakes, unknowingly,” said Misa Graff, an associate professor in epidemiology at the University of North Carolina and a genetics researcher.

In fact, that’s already happening. In 2016, for example, research found that some Black patients had been misdiagnosed with a potentially fatal heart condition because they’d tested positive for a genetic variant thought to be harmful. That variant is much more common among Black Americans than white Americans, the research found, and is considered likely harmless among Black people. Misclassifications can be avoided if “even modest numbers of people from diverse populations are included in sequence databases,” the authors wrote.

The genetics research project in Charleston requires participants to complete an online consent form and submit a saliva sample, either in person at a designated lab or collection event or by mail. They are not paid to participate, but they do receive a report outlining their DNA results. Those who test positive for a genetic marker linked to cancer or high cholesterol are offered a virtual appointment with a genetics counselor free of charge.

Some research projects require more time from their volunteers, which can skew the pool of participants, Graff said, because not everyone has the luxury of free time. “We need to be even more creative in how we obtain people to help contribute to studies,” she said.

Moultrie said he recently asked project leaders to reach out to African American media outlets throughout the Palmetto State to explain how the genetics research project works and to encourage Black people to participate. He also suggested that when researchers talk to Black community leaders, such as church pastors, they ought to persuade those leaders to enroll in the study instead of simply passing the message along to their congregations.

“We have new ideas. We have ways we can do this,” Moultrie said. “We’ll get there.”

Other ongoing efforts are already improving diversity in genetics research. At the National Institutes of Health, a program called “All of Us” aims to analyze the DNA of more than 1 million people across the country to build a diverse health database. So far, that program has enrolled more than 790,000 participants. Of these, more than 560,000 have provided DNA samples and about 45% identify as being part of a racial or ethnic minority group.

“Diversity is so important,” said Karriem Watson, chief engagement officer for the All of Us research program. “When you think about groups that carry the greatest burden of disease, we know that those groups are often from minoritized populations.”

Diverse participation in All of Us hasn’t come about by accident. NIH researchers strategically partnered with community health centers, faith-based groups, and Black fraternities and sororities to recruit people who have been historically underrepresented in biomedical research.

In South Carolina, for example, the NIH works with Cooperative Health, a network of federally qualified health centers near the state capital that serve many patients who are uninsured and Black, to recruit patients for All of Us. Eric Schlueter, chief medical officer of Cooperative Health, said the partnership works because their patients trust them.

“We have a strong history of being integrated into the community. Many of our employees grew up and still live in the same communities that we serve,” Schlueter said. “That is what is part of our secret sauce.”

So far, Cooperative Health has enrolled almost 3,000 people in the research program, about 70% of whom are Black.

“Our patients are just like other patients,” Schlueter said. “They want to be able to provide an opportunity for their children and their children’s children to have better health, and they realize this is an opportunity to do that.”

Theoretically, researchers at the NIH and the Medical University of South Carolina may be trying to recruit some of the same people for their separate genetics studies, although nothing would prevent a patient from participating in both efforts.

The researchers in Charleston acknowledge they still have work to do. To date, In Our DNA SC has recruited about half of the 100,000 people it hopes for, and of those, about three-quarters have submitted DNA samples.

Caitlin Allen, a program investigator and a public health researcher at the medical university, acknowledged that some of the program’s tactics haven’t succeeded in recruiting many Black participants.

For example, some patients scheduled to see providers at the Medical University of South Carolina receive an electronic message through their patient portal before an appointment, which includes information about participating in the research project. But studies show that racial and ethnic minorities are less likely to engage with their electronic health records than white patients, Allen said.

“We see low uptake” with that strategy, she said, because many of the people researchers are trying to engage likely aren’t receiving the message.

The study involves four research coordinators trained to take DNA samples, but there’s a limit to how many people they can talk to face-to-face. “We’re not necessarily able to go into every single room,” Allen said.

That said, in-person community events seem to work well for enrolling diverse participants. In March, In Our DNA SC research coordinators collected more than 30 DNA samples at a bicentennial event in Orangeburg, South Carolina, where more than 60% of residents identify as Black. Between the first and second year of the research project, Allen said, In Our DNA SC doubled the number of these community events that research coordinators attended.

“I would love to see it ramp up even more,” she said.

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En ese entonces tenía 36 y trabajaba como médica de enlace para un sistema hospitalario de la costa de Carolina del Sur ayudando a fortalecer los vínculos entre los médicos.

Desde sus 20 años, había estado luchando en secreto contra el consumo excesivo de alcohol, convencida de que la ayudaba a calmar sus ansiedades.

Adkins comprendió que ese color amarillento de sus ojos era producto de la ictericia. Aun así, no imaginó que fuera posible que le diagnosticaran una enfermedad hepática relacionada con el abuso de alcohol.

“Sinceramente, mi mayor temor era que alguien me dijera que no podía volver a beber”, contó Adkins, que hoy vive en Pawleys Island, una ciudad costera a unas 30 millas al sur de Myrtle Beach.

Pero la bebida ya había afectado su salud y, menos de 48 horas después de su descubrimiento en el espejo retrovisor, Adkins fue hospitalizada por una falla hepática. “Fue muy rápido”, recordó.

Históricamente, las enfermedades vinculadas al abuso del alcohol han afectado más a los hombres. Pero datos actuales de los Centros para el Control y Prevención de Enfermedades (CDC) muestran que las tasas de muerte por esta causa están aumentando más rápido entre las mujeres que entre los hombres.

La administración Biden considera alarmante esta tendencia. Una estimación reciente predice que, en Estados Unidos, para 2040, las mujeres representarán casi la mitad de los costos de las enfermedades hepáticas asociadas al alcohol; lo que supone un gasto total de $66,000 mil millones.

Se trata de un tema prioritario para el Departamento de Salud y Servicios Humanos (HHS) y el Departamento de Agricultura (USDA), que el año próximo publicarán juntos directrices dietéticas nacionales actualizadas.

Pero dado que el marketing de las bebidas alcohólicas se dirige cada vez más a las mujeres y que el consumo social de alcohol es ya una parte importante de la cultura estadounidense, no es un cambio que apoye todo el mundo.

“Se trata de un tema delicado”, opina Rachel Sayko Adams, investigadora asociada de la Escuela de Salud Pública de la Universidad de Boston. “No existe un nivel seguro de consumo de alcohol, y esa es una información novedosa que probablemente alguna gente prefiere ignorar”, explica.

En los últimos 50 años, las mujeres se han incorporado cada vez más al mercado laboral y han retrasado la maternidad. Es probable que estos factores hayan contribuido al cambio de hábitos porque, tradicionalmente, las mujeres que se convertían en madres bebían menos.

Adams, estudiosa de las adicciones, explica que “la maternidad solía ser un factor protector”, pero ya no siempre es así.

Más de 600,000 personas murieron en Estados Unidos por causas relacionadas con el abuso de alcohol entre 1999 y 2020, según una investigación publicada en JAMA Network Open en julio de 2023. Esto lo sitúa entre las principales causas de muerte evitable en el país, detrás del tabaco, la mala alimentación y la inactividad física, y las drogas ilegales.

La Organización Mundial de la Salud y varios estudios han llegado a la conclusión de que ninguna cantidad de alcohol es segura para la salud. Incluso beber en forma moderada se ha relacionado con problemas como la hipertensión y las enfermedades coronarias y, también, con un mayor riesgo de cáncer de mama, entre otros.

Según George Koob, director del Instituto Nacional sobre el Abuso del Alcohol y el Alcoholismo, la pandemia de covid-19 “exacerbó significativamente” el consumo de alcohol, porque la gente lo utilizaba para soportar el estrés. Esto es especialmente cierto en el caso de las mujeres, más propensas a beber por estrés que los hombres.

Pero, además, las mujeres también suelen ser el foco de la publicidad de bebidas alcohólicas. En los últimos años se ha disparado, por ejemplo, la venta de vinos rosados y vinos de bajas calorías. Según un nuevo estudio publicado en marzo en el International Journal of Drug Policy, “el color rosado de los productos es una táctica utilizada por la industria del alcohol para dirigirse al mercado femenino”.

También influye la aparición de un fenómeno impulsado en gran medida por mujeres en las redes sociales, que minimiza el hecho de consumir alcohol como una forma de lidiar con las dificultades de la maternidad. “La percepción errónea de la ‘cultura del vino para mamás’ —según Adams —, es que ‘si puedes beber de manera normal, moderada, si puedes controlar tu alcohol, estás bien’”.

No está claro hasta qué punto los memes y los videos en línea influyen en el consumo femenino de alcohol, explica Adams, que opina que el tema merece un estudio más profundo. Sin embargo, en 2023, el equipo de investigación que integra descubrió que la franja de mujeres de 35 años sin hijos es la que tiene el mayor riesgo de beber en exceso y presentar síntomas asociados a esta conducta, comparado con las mujeres de otros grupos de edad. Sin embargo, esa investigación concluyó que, en las dos últimas décadas, el riesgo está aumentando para todas las mujeres, sean o no madres.

Estos factores, unidos a la presión por ser aceptada, hacen difícil abordar el problema. “Es una cuestión tabú”, explica Adams.

Cuando surge —cuenta Stephanie Garbarino, hepatóloga especializada en trasplantes de Duke Health—, sorprende la cantidad de pacientes que no son conscientes de cómo beber alcohol afecta su salud. “A menudo, no saben que puede hacerles daño”, explica.

Garbarino atiende cada vez con mayor frecuencia a pacientes más jóvenes con enfermedad hepática, incluidos hombres y mujeres de entre 20 y 30 años.

Expertos en salud pública y adicciones temen que la enfermedad hepática relacionada con el alcohol entre las mujeres se convierta en un problema costoso para la nación.

En 2022, las mujeres representaron el 29% de todos los costos asociados con la atención médica en Estados Unidos. Un nuevo estudio publicado en febrero de 2024 por el American Journal of Gastroenterology prevé que en 2040 ese índice trepe al 43%.

Las National Dietary Guidelines, que establecen pautas alimentarias para promover la salud y prevenir enfermedades, aconsejan a las mujeres que no beban más de una copa de bebida alcohólica al día.

Esas pautas serán revisadas el próximo año por el HHS y USDA como parte de un proceso de revisión quinquenal. Se ha convocado a un comité especial para examinar, entre otras cuestiones, la relación entre el consumo de alcohol y los riesgos de cáncer. El informe se conocerá en 2025.

En 2023, Canadá publicó una guía que advertía que consumir más de dos copas de bebidas alcohólicas por semana acarreaba riesgos para la salud. En ese momento, cuando Koob sugirió en el Daily Mail que las directrices estadounidenses podrían avanzar en el mismo sentido se generó una reacción negativa.

El informe de los CDC, publicado en febrero de este año, sugirió que un aumento en los impuestos al alcohol podría ayudar a reducir su consumo excesivo y las muertes que genera. La oficina de Koob prefirió no comentar esa propuesta.

Este tema toca el corazón de Adkins, que ahora trabaja como entrenadora ayudando a otras personas, en su mayoría mujeres, a dejar de beber.  Adkins contó que la pandemia la impulsó a publicar un libro sobre su experiencia cercana a la muerte por insuficiencia hepática. Vive con cirrosis, pero este septiembre se cumplirán 10 años desde su último trago.

“Lo increíble es que no se puede estar mucho peor del punto al que llegué”, dijo Adkins. “Mi esperanza, de verdad, es cambiar la narrativa”.

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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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