Persistent Problem: High C-Section Rates Plague the South

KFF Health News, April 14, 2022

High C-section rates have persisted — and in some states, such as Alabama and Kentucky, even grown slightly — despite continual calls to reduce them.

This article was published on Thursday, April 14, 2022 in Kaiser Health News.

By Lauren Sausser

All along, Julia Maeda knew she wanted to have her baby naturally. For her, that meant in a hospital, vaginally, without an epidural for pain relief.

This was her first pregnancy. And although she is a nurse, she was working with cancer patients at the time, not with laboring mothers or babies. "I really didn't know what I was getting into," said Maeda, now 32. "I didn't do much preparation."

Her home state of Mississippi has the highest cesarean section rate in the U.S. — nearly 4 in 10 women who give birth there deliver their babies via C-section. Almost two weeks past her due date in 2019, Maeda became one of them after her doctor came to her bedside while she was in labor.

"'You're not in distress, and your baby is not in distress — but we don't want you to get that way, so we need to think about a C-section,'" she recalled her doctor saying. "I was totally defeated. I just gave in."

C-sections are sometimes necessary and even lifesaving, but public health experts have long contended that too many performed in the U.S. aren't. They argue it is major surgery accompanied by significant risk and a high price tag.

Overall, 31.8% of all births in the U.S. were C-sections in 2020, just a slight tick up from 31.7% the year before, according to the latest data from the Centers for Disease Control and Prevention. But that's close to the peak in 2009, when it was 32.9%. And the rates are far higher in many states, especially across the South.

These high C-section rates have persisted — and in some states, such as Alabama and Kentucky, even grown slightly — despite continual calls to reduce them. And although the pandemic presented new challenges for pregnant women, research suggests that the U.S. C-section rate was unaffected by COVID. Instead, obstetricians and other health experts say the high rate is an intractable problem.

Some states, such as California and New Jersey, have reduced their rates through a variety of strategies, including sharing C-section data with doctors and hospitals. But change has proved difficult elsewhere, especially in the South and in Texas, where women are generally less healthy heading into their pregnancies and maternal and infant health problems are among the highest in the U.S.

"We have to restructure how we think about C-sections," said Dr. Veronica Gillispie-Bell, an OB-GYN who is medical director of the Louisiana Perinatal Quality Collaborative, a group of 43 birthing hospitals focused on lowering Louisiana's C-section rate. "It's a lifesaving technique, but it's also not without risks."

She said C-sections, like any operation, create scar tissue, including in the uterus, which may complicate future pregnancies or abdominal surgeries. C-sections also typically lead to an extended hospital stay and recovery period and increase the chance of infection. Babies face risks, too. In rare cases, they can be nicked or cut during an incision. 

Although C-sections are sometimes necessary, public health leaders say these surgeries have been overused in many places. Black women, particularly, are more likely to give birth by C-section than any other racial group in the country. Often, hospitals and even regions have wide, unexplained variations in rates.

"If you were delivering in Miami-Dade County, you had a 75% greater chance of having a cesarean than in northern Florida," said Dr. William Sappenfield, an OB-GYN and epidemiologist at the University of South Florida who has studied the state's high C-section rate.

Some physicians say their rates are driven by mothers who request the procedure, not by doctors. But Dr. Rebekah Gee, an OB-GYN and former secretary of the Louisiana Department of Health, said she saw C-section rates go dramatically up at 4 and 5 p.m. — around the time when doctors tend to want to go home.

She led several initiatives to improve birth outcomes in Louisiana, including leveling Medicaid payment rates to hospitals for vaginal deliveries and C-sections. In most places, C-sections are significantly more expensive than vaginal deliveries, making high C-section rates not only a concern for expectant mothers but also for taxpayers.

Medicaid pays for 60% of all births in Louisiana, according to KFF, and about half of all births in most Southern states, compared with 42% nationally. That's one reason some states — including Louisiana, Tennessee, and Minnesota — have tried to tackle high C-section rates by changing how much Medicaid pays for them. But payment reform alone isn't enough, Gee said.

"There was a guy in central Louisiana who was doing more C-sections and early elective deliveries than anyone in the U.S.," she said. "When you have a culture like that, it's hard to shift from it."

Linda Schwimmer, president and CEO of the New Jersey Healthcare Quality Institute, said many hospitals and doctors don't even know their C-section rates. Sharing this data with doctors and hospitals — and making it public — made some providers uncomfortable, she said, but it ultimately worked. New Jersey's C-section rate among first-time, low-risk mothers dropped from 33.1% in 2013 to 26.7% six years later once the state began sharing this data, among other initiatives.

The New Jersey Healthcare Quality Institute, and other groups like it around the country, focuses on reducing a subset of C-sections called "nulliparous, term, singleton, vertex" C-sections, or surgeries on first-time, full-term moms giving birth to a single infant who is positioned head-down in the uterus.

NTSV C-sections are important to track because women who have a C-section during their first pregnancy face a 90% chance of having another in subsequent pregnancies. Across the U.S., the rate for these C-sections was 25.9% in 2020 and 25.6% in 2019.

Dr. Elliott Main, a maternal-fetal specialist at Stanford University and the medical director of the California Maternal Quality Care Collaborative, co-authored a paper, published in JAMA last year, that outlines interventions the collaborative took that lowered California's NTSV C-Section rate from 26.0% in 2014 to 22.8% in 2019. Nationally, the rate was unchanged during that period.  

Allowing women to labor for longer stretches of time before resorting to surgery is important, he said.

The cervix must be 10 centimeters dilated before a woman gives birth. The threshold for "active labor" used to be when the cervix was dilated at least 4 centimeters. In more recent years, though, the onset of active labor has been changed to 5 to 6 centimeters.

"People show up at the hospital too early," said Toni Hill, president of the Mississippi Midwives Alliance. "If you show up to the hospital at 2 to 3 centimeters, you can be at 2 to 3 centimeters for weeks. I don't even consider that labor."

Too often, she said, women at an early stage of labor end up being induced and deliver via C-section.

"It's almost like, at this point, C-sections are being handed out like lollipops," said LA'Patricia Washington, a doula based in Jackson, Mississippi. Doulas are trained, nonmedical workers who help parents before, during, and after delivery.

Washington works with a nonprofit group, the Jackson Safer Childbirth Experience, that pays for doulas to help expectant mothers in the region. Some state Medicaid programs, such as New Jersey's, reimburse for services by doulas because research shows they can reduce C-section rates. California has been trying to roll out the same benefit for its Medicaid members.

In 2020, when Julia Maeda became pregnant again, she paid out-of-pocket for a doula to attend the birth. The experience of having her son via C-section the previous year had been "emotionally and psychologically traumatic," Maeda said.

She told her OB-GYN that she wanted a VBAC, short for "vaginal birth after cesarean." But, she said, "he just shook his head and said, 'That's not a good idea.'"

She had VBAC anyway. Maeda credits her doula with making it happen. 

"Maybe just her presence relayed to the nursing staff that this was something I was serious about," Maeda said. "They want you to have your baby during business hours. And biology doesn't work that way."

Lauren Sausser: lsausser@kff.org, @laurenmsausser

A Travel Nurse Leaves Fears of Hospital Drug Tampering Across Three States

KFF Health News, April 14, 2022

The travel nurse, Jacqueline Brewster, 52, of Belfry, Kentucky, was arrested by her local sheriff's this week office on undisclosed charges.

This article was published on Thursday, April 14, 2022 in Kaiser Health News.

By Brett Kelman

Health officials in at least three states are investigating a travel nurse suspected of tampering with and potentially contaminating vials and syringes of opioid painkillers in two hospitals, then returning the vials to medication cabinets where they could be unknowingly given to patients.

One hundred patients who may have been exposed to contaminated syringes last year at Johnson City Medical Center in Tennessee were urged to get tested for hepatitis and HIV, according to state documents obtained by KHN through a public records request.

The documents also reveal that Raleigh General Hospital in West Virginia this year gave vials to law enforcement to test for evidence of tampering. Those results haven't been made public.

The travel nurse, Jacqueline Brewster, 52, of Belfry, Kentucky, was arrested by her local sheriff's office on undisclosed charges Tuesday in response to a fugitive warrant from Washington County, Tennessee, where the allegations of tampering began, according to jail and court records. Brewster was released Wednesday with orders to report to Tennessee within 10 days.

"I didn't run away from anything," Brewster said in court. "I don't know how I'm a fugitive."

According to documents filed by Tennessee and West Virginia health authorities with their respective nursing boards, Brewster is suspected of repeatedly opening hospital medication cabinets to withdraw vials or syringes of an opioid painkiller, Dilaudid, allegedly removing some of the drug to either use or steal, and then returning the vials or syringes, possibly after gluing a cap back on. The CEO of one of the affected hospital systems alleged in an interview with KHN that the travel nurse added another liquid to syringes ⁠— possibly in an attempt to cover her tracks.

The allegations against Brewster, which have not been previously reported, come at a time when the coronavirus pandemic forced many U.S. hospitals to rely more than ever on travel nurses, who often cross state lines to work months-long stints in short-staffed hospitals. As the virus flooded hospitals with patients and worsened nursing shortages, many hospitals turned to travel nurses to fill the gaps, often at a dramatically increased cost.

But "desperation" to recruit nurses also exacerbated existing flaws in the government infrastructure intended to hold nurses accountable, said John Benson, co-founder of Verisys, a data management company that researches potential employees for healthcare systems.

Nurses and other medical professionals are licensed, investigated, and disciplined at the state level. But investigators don't communicate well across state lines, Benson said, so as more nurses began to travel during the pandemic, it became easier to "outrun" investigations by getting a new job in another state long before allegations of wrongdoing became public.

"The system was broken before COVID," Benson said. "It just got more broken during COVID."

Brewster, a registered nurse, has been licensed in Kentucky since 2004 and holds a license permitting her to work in more than 30 states that participate in the Nurse Licensure Compact. After she was accused of tampering at Raleigh General last month, the West Virginia nursing board suspended Brewster's ability to practice in the state. Days later, Tennessee health officials acted on a complaint they received from Johnson City Medical Center last July, launching a professional disciplinary proceeding that could revoke Brewster's ability to work in that state later this year.

As of Wednesday, Brewster's multistate license was "under investigation" in Kentucky but otherwise unrestricted, meaning she could still work as a nurse in most of the country. It is unknown where else Brewster might have worked as a travel nurse, including in the seven months after she was first accused of tampering in Tennessee.

Brewster could not be reached for comment and it is unclear whether she has an attorney. A Knoxville lawyer listed as Brewster's attorney in records filed with the Tennessee Board of Nursing denied representing the nurse.

One hospital that became heavily dependent on travel nurses during the pandemic was Johnson City Medical Center. Ballad Health, which owns the hospital, said last summer the pandemic increased the number of travel nurses the company employed from about 150 to 400.

Brewster was among those hired. She was employed by Jackson Nurse Professionals, a travel nurse company in Orlando, Florida, and worked at the Johnson City Medical Center for three months before the alleged tampering was discovered, according to the records.

Ballad Health CEO Alan Levine told KHN another nurse flagged a suspicious vial in the hospital's medical cabinet, and an internal investigation linked the vial to Brewster.

"She was removing the Dilaudid and replacing it with another substance that looked clear like Dilaudid, and replacing the vials in the Omnicell system," Levine said. "One of our other nurses noticed that something looked different in one of the vials and notified the pharmacy immediately."

Ballad Health fired Brewster and alerted law enforcement and the Tennessee Department of Health, according to a statement from the company. It sent five Dilaudid syringes to the Tennessee Bureau of Investigation's crime lab, which confirmed the amount of medication within was "inconsistent with the manufacturer's label," according to the nursing board documents.

The hospital reported that it also tried to give Brewster a drug test. She initially provided an insufficient urine sample, the documents allege, and then after providing a second sample Brewster "accused the lab technician of being corrupt," grabbed the sample out of his hand, and dumped it down the sink.

"This is my *** [sic]," Brewster said as she took back the sample, according to the documents.

The Tennessee Department of Health filed the professional disciplinary case against Brewster with the Board of Nursing on March 31. She is scheduled to appear Aug. 24 at a board hearing and risks losing her nursing license.

At some point, after she was fired from Johnson City Medical Center, Brewster began to work at Raleigh General, an unrelated hospital about 120 miles to the north in Beckley, West Virginia.

Last month, the hospital reported to the West Virginia nursing board that Dilaudid vials in its medicine cabinets appeared to have been tampered with, according to a board order suspending Brewster's license. Some vials were missing tops and others had tops marked with a residue that "looked like glue," the board alleges.

Once again, an internal investigation "led directly" to Brewster, according to the board order.

Raleigh General "disposed of many vials of Dilaudid in order to protect patients from contamination" and provided some vials to law enforcement for testing. Results have not been disclosed.

Jackson Nurse Professionals did not respond to requests for comment. It is unclear whether Brewster still works for the company.

Raleigh General Hospital in West Virginia released a statement that it was still investigating Brewster and cooperating with authorities but declined to answer questions about the case.

Brett Kelman: bkelman@kff.org, @BrettKelman

A Shortfall of ECMO Treatment Cost Lives During the Delta Surge

KFF Health News, April 7, 2022

While the odds of survival with critical COVID patients are still roughly 50-50, a Vanderbilt study shows what happens if the therapy is unavailable.

This article was published on Thursday, April 7, 2022 in Kaiser Health News.

By Blake Farmer, Nashville Public Radio

Speaking from his hospital bed at Vanderbilt University Medical Center in Nashville, Tennessee, James Perkinson's voice was raspy. In February, he'd just been taken off ECMO, the last-ditch life support treatment in which a machine outside the body does the work of the heart and lungs.

Full recovery is expected to take a year or more for Perkinson.

"If it wasn't for the ECMO and the doctors that were put in place at the right time with the right knowledge, I would not be here," he said, with his wife, Kacie, by his side.

"Could there have been a miracle and he could have lived if he hadn't gotten [ECMO]? Maybe. But the chances were absolutely slim to none," Kacie said.

A new study from Vanderbilt shows she's probably right about those chances.

During the surge of the delta variant of COVID-19 late last summer, ECMO therapy was in short supply across the South. Vanderbilt's unit was taking 10 to 15 calls a day from hospitals without ECMO looking for an open bed. Even patients' families were calling on behalf of dying loved ones.

"'There's no beds. There's no nurses. There's no machines. There's just not enough. We just physically can't,'" nurse practitioner Whitney Gannon said she would tell people calling from hospitals around the South. "It's the worst feeling in the world."

But Gannon grew curious about what happened to the patients she had to turn down — especially those who were young and healthy, like Perkinson, who was 28. She started checking back, informally.

Many of them had died, including a pregnant woman.

So, within a matter of weeks, she helped launch an official study. And Gannon's team started taking every call, even when no beds were available.

"We wanted to know: Is this patient truly medically eligible for ECMO? Would we provide ECMO? And if we didn't, we wanted to know what happened to that patient," Gannon said.

The results, published in the American Journal of Respiratory and Critical Care Medicine, are grim. Nearly 90% who couldn't find a spot at an ECMO center died. And these patients were under 60 and previously healthy, with a median age of 40.

Over the course of the pandemic, hospitals have had difficulty deciding who gets priority when ECMO, which stands for extracorporeal membrane oxygenation, is in short supply. It's not an exact science. And there are precious few ECMO beds, especially when some patients linger for months on the machine, only to die.

Perkinson was a good candidate since he's young and — before falling ill with COVID — relatively healthy. A machinist from Greenbrier, Tennessee, and a father of two, he caught COVID after making an appointment to get his first dose of vaccine, he said.

Without vaccine protection, he didn't fare well against the virus. He was put on a ventilator just after Christmas and within days stepped up to an available ECMO bed as his blood oxygen levels dropped.

For nearly two months, his blood flowed through a tube in his neck to the ECMO unit, which infused it with oxygen, took out the carbon dioxide, and sent it back into his body. He was sedated the entire time, increasing his risk of long-term organ damage and disability.

The use of ECMO spiked during the pandemic. Never has it been used so widely, but the data remains limited. And a study published in The Lancet in September 2021 found that the number of COVID patients dying while on ECMO had increased 15% since the beginning of the pandemic.

Even early on, only half were surviving. And as the pandemic dragged on, more hospitals with less experience were using ECMO, and some expanded criteria to include older patients or those with risk factors like obesity who do not do as well.

Hospital capacity crunches have been central to the debate because ECMO requires a small village of nurses and respiratory therapists. And sometimes the patients stay on the therapy for months, not just weeks.

One patient currently at Vanderbilt, which has just seven ECMO beds, has been there since last year's delta surge, said Dr. Jonathan Casey.

"So you can imagine how it doesn't take much to fill this resource even during a small wave," Casey said.

Even during the omicron surge, Casey said, Vanderbilt has turned down some transfer requests for ECMO.

While the odds of survival with critical COVID patients are still roughly 50-50, the Vanderbilt study shows what happens if the therapy is unavailable.

"I'm trying to convince people that this is a resource worth investing in and then hoping people invest in those resources over time," said Casey, the study's senior author.

Until there is broader access to ECMO, Casey said, the country also needs to find a better way to decide who is prioritized for treatment, similar to how organ transplant allocation works. There is a national ECMO organization called the Extracorporeal Life Support Organization, but it doesn't get involved with triaging patients yet.

Some hospitals will agree to try ECMO on someone over 70, if the family pushes hard enough. Others turn down patients over 50, especially if they have underlying diabetes or heart disease.

Small-scale cooperative efforts are underway. In Minnesota, hospitals have agreed to use the same strict patient criteria and a statewide referral process.

The decisions are still "ethically nuanced," said Dr. Matthew Prekker, who helped set up the consortium before the pandemic emerged. Cooperation could mean giving an ECMO bed to a patient from across the state instead of someone in your own hospital.

The goal is simply for more patients to survive.

"It takes a lot of cooperation among health systems and state leadership," he said. "But I think doctors and communities have more appetite for that now than they did before."

This story is part of a partnership that includes WPLN, NPR, and KHN.

Blake Farmer, Nashville Public Radio: bfarmer@wpln.org, @flakebarmer

The Pandemic Exacerbates the 'Paramedic Paradox' in Rural America

KFF Health News, April 7, 2022

Paramedics are hard to come by, and a long-standing workforce shortage has been exacerbated by turnover and resignations related to pandemic burnout.

This article was published on Thursday, April 7, 2022 in Kaiser Health News.

By Katheryn Houghton

Even after she's clocked out, Sarah Lewin keeps a Ford Explorer outfitted with medical gear parked outside her house. As one of just four paramedics covering five counties across vast, sprawling eastern Montana, she knows a call that someone had a heart attack, was in a serious car crash, or needs life support and is 100-plus miles away from the nearest hospital can come at any time.

"I've had as much as 100 hours of overtime in a two-week period," said Lewin, the battalion chief for the Miles City Fire and Rescue department. "Other people have had more."

Paramedics are often the most highly skilled medical providers on emergency response crews, and their presence can make a lifesaving difference in rural areas where health services are scarce. Paramedics are trained to administer specialized care from the field, such as placing a breathing tube in a blocked airway or decompressing a collapsed lung. Such procedures are beyond the training of emergency medical technicians.

But paramedics are hard to come by, and a long-standing workforce shortage has been exacerbated by turnover and resignations related to pandemic burnout.

Larger departments are trying to attract paramedics by boosting pay and offering hefty signing bonuses. But small teams in underserved counties across the U.S. don't have the budgets to compete. Instead, some rural crews are trying to train existing emergency responders for the roles, with mixed results.

Miles City is among the few communities in rural eastern Montana to have paramedic-level services, but the department doesn't have enough paramedics to offer that care 24/7, which is why medics like Lewin take calls on their time off. The team received a federal grant so four staffers could become paramedics, but it could fill only two slots. Some prospects turned down the training because they couldn't balance the intense program with their day jobs. Others didn't want the added workload that comes with being a paramedic.

"If you're the only paramedic on, you end up taking more calls," Lewin said.

What's happening in Miles City is also happening nationwide. People who work in emergency medical care have long had a name for the problem: the paramedic paradox.

"The patients who need the paramedics the most are in the more rural areas," said Dia Gainor, executive director of the National Association of State EMS Officials. But paramedics tend to gravitate to dense urban areas where response times are faster, the drives to hospitals are shorter, and the health systems are more advanced.

"Nationally, throw a dart at the map, the odds are that any rural area is struggling with staffing, with revenue, with access to training and education," Gainor said. "The list goes on."

The Michigan Association of Ambulance Services has dubbed the paramedic and EMT shortage "a full-blown emergency" and called on the state legislature this year to spend $20 million to cover the costs of recruiting and training 1,000 new paramedics and EMTs.

At the beginning of this year, Colorado reactivated its crisis standard of care for short-staffed emergency medical service crews experiencing mounting demand for ambulances during a surge in COVID cases. The shortage is such a problem that in Denver a medical center and high school teamed up to offer courses through a paramedic school to pique students' interest.

In Montana, 691 licensed paramedics treat patients in emergency settings, said Jon Ebelt, a spokesperson for the Montana Department of Public Health and Human Services. More than half are in the state's five most-populous counties — Yellowstone, Gallatin, Missoula, Flathead, and Cascade — covering a combined 11% of the state's 147,000 square miles. Meanwhile, 21 of Montana's 56 counties don't have a single licensed EMS paramedic.

Andy Gienapp, deputy executive director of the National Association of State EMS Officials, said a major problem is funding. The federal Medicaid and Medicare reimbursements for emergency care often fall short of the cost of operating an ambulance service. Most local teams rely on a patchwork of volunteers and staffers, and the most isolated places often survive on volunteers alone, without the funding to hire a highly skilled paramedic.

If those rural groups do find or train paramedics in-house, they're often poached by larger stations. "Paramedics get siphoned off because as soon as they have those skills, they're marketable," Gienapp said.

Gienapp wants to see more states deem emergency care an essential service so its existence is guaranteed and tax dollars chip in. So far, only about a dozen states have done so.

But action at the state level doesn't always guarantee the budgets EMS workers say they need. Last year, Utah lawmakers passed a law requiring municipalities and counties to ensure at least a "minimum level" of ambulance services. But legislators didn't appropriate any money to go with the law, leaving the added cost — estimated to be up to $41 per resident each year — for local governments to figure out.

Andy Smith, a paramedic and executive director of the Grand County Emergency Medical Services in Moab, Utah, said at least one town that his crew serves doesn't contribute to the department's costs. The team's territory includes 6,000 miles of roads and trails, and Smith said it's a constant struggle to find and retain the staffers to cover that ground.

Smith said his team is lucky — it has several paramedics, in part because the nearby national park draws interest and the ambulance service has helped staffers pay for paramedic certification. But even those perks haven't attracted enough candidates, and he knows some of those who do come will be lured away. He recently saw a paramedic job in nearby Colorado starting at $70,000, a salary he said he can't match.

"The public has this expectation that if something happens, we always have an ambulance available, we're there in a couple of minutes, and we have the highest-trained people," Smith said. "The reality is that's not always the case when the money is rare and it's hard to find and retain people."

Despite the staffing and budget crunches, state leaders often believe emergency crews can fill gaps in basic healthcare in rural areas. Montana is among the states trying to expand EMS work to nonemergency and preventive care, such as having medical technicians meet patients in their homes for wound treatment.

A private ambulance provider in Montana's Powder River County agreed to provide those community services in 2019. But the owner has since retired, and the company closed. The county picked up emergency services last year, and County Commissioner Lee Randall said that providing basic healthcare is on the back burner. The top priority is hiring a paramedic.

Advancing the care that EMT crews can do without paramedics is possible. Montana's EMS system manager, Shari Graham, said the state has created certifications for basic EMTs to provide some higher levels of care, such as starting an IV line. The state has also increased training in rural communities so volunteers can avoid traveling for it. But those steps still leave gaps in advanced life support.

"Realistically, you're just not going to have paramedics in those rural areas where there's no income available," Graham said.

Back in Miles City, Lewin said her department may get an extension to train additional paramedics next year. But she's not sure she'll be able to fill the spots. She has a few new EMT hires, but they won't be ready for paramedic certification by then.

"I don't have any people interested," Lewin said. For now, she'll keep that emergency care rig in her driveway, ready to go.

Katheryn Houghton: khoughton@kff.org, @K_Hought

Never-Ending Costs: When Resolved Medical Bills Keep Popping Up

KFF Health News, April 7, 2022

Patients receive bills for claims their insurers already paid.

This article was published on Thursday, April 7, 2022 in Kaiser Health News.

By Aneri Pattani April 7, 2022

Every now and then, Suzanne Rybak and her husband, Jim, receive pieces of mail addressed to their deceased son, Jameson. Typically, it's junk mail that requires little thought, Suzanne said.

But on March 5, an envelope for Jameson came from McLeod Health.

Jim saw it first. He turned to his wife and asked, "Have you taken your blood pressure medication today?"

He knew showing her the envelope would resurface the pain and anger their family had experienced since taking Jameson to McLeod Regional Medical Center two years ago.

As KHN previously reported, Jameson was experiencing withdrawal symptoms from quitting opioids. Suzanne feared for her son's life and took him to the emergency room near their home in Florence, South Carolina, on March 11, 2020.

There, they encountered a paucity of addiction treatment and the potential for high medical costs — two problems that plague many families affected by the opioid crisis and often lead to missed opportunities to save lives.

Jameson was not offered medications to treat opioid use disorder in the ER, nor was he given referrals to other treatment facilities, Suzanne said. The hospital wanted to admit him, but, being uninsured, Jameson feared a high bill. The hospital didn't inform him of its financial assistance policy, Suzanne said. And he decided to leave.

Three months later, Jameson, 30, died of an overdose in his childhood bedroom.

In the following months, the Rybaks received bills from the McLeod Health system addressed to Jameson. He owed $4,928, it said. Suzanne called and wrote to hospital administrators until September 2020, when the bill was resolved under the system's financial assistance program.

That was the last they had heard from McLeod Health until the new envelope arrived March 5 — one week before the two-year anniversary of his ER visit. That visit was what Suzanne calls "the beginning of the end for my son."

When the Rybaks opened the envelope, they found a strikingly familiar bill for $4,928.

"I can't even describe my anger and sadness," Suzanne said. "It's always present, but when we received that statement, we were just stunned."

There's no national data to indicate how often patients or their families receive medical bills that were previously paid or forgiven, but hospital billing experts say they frequently see it happen. Patients receive bills for claims their insurers already paid. A reminder statement arrives even after a patient submitted payment.

Unlike "surprise bills," which often result from policy gaps when a provider is out of network, these are bills that were resolved but continue to pop up anyway. They can carry financial consequences — patients wind up paying for something they don't truly owe or bills get passed on to debt collection agencies, triggering more phones calls and red tape. But often it's the emotional toll that wears on patients most, spending hours on the phone with customer service each time the bill resurfaces or reliving the situations that led to the bill in the first place. For families like the Rybaks, the cost can feel never-ending.

Suzanne Rybak refused to engage with the McLeod hospital again but told KHN about the new bill.

In response to questions from KHN, McLeod Health determined the bill the Rybaks received was a mistake.

"Unfortunately our software system regenerated this statement due to a technical issue," wrote spokesperson Jumana Swindler. "We are checking to ensure that it has not happened to any other patients and we are sorry this family was impacted by the error."

A week after KHN's inquiry, the Rybaks received a letter from the hospital explaining and apologizing for the error.

Many medical billing cases like this "boil down to human error," said Michael Corbett, director of healthcare consulting for LBMC, a Tennessee-based firm that consults with health systems nationally on issues like billing and revenue. "Facilities don't have a lack of tools [to avoid this]. It's a breakdown in their processes."

A billing agent may forget to mark the account as paid, he said. Or the hospital might contract its billing to an outside company and fail to inform them that this bill was covered under the hospital's financial assistance program.

As hospitals and medical practices increasingly consolidate under large health systems, the chances for errors increase. Even hospitals and clinics within the same system may have different backend software, and within each hospital there can be separate programs for billing and electronic health records, Corbett explained.

Larger health systems may also have more people processing any given bill. If responsibilities are not clearly defined, multiple employees could unknowingly act on the same patient account.

The COVID-19 pandemic has exacerbated potential errors, Corbett said. New medical billing employees may have received quick, virtual training and are working remotely with little interaction with team members or oversight. Some billing departments are understaffed, leading to delays in patients receiving bills or follow-up notices, he added.

To curb mistakes, Corbett said, hospitals need to invest in more comprehensive training and supervision for billing employees; enact consistent processes for anything from how patients' financial information is collected at registration to when they're sent bills; and, perhaps most important, track whether those processes are being followed.

For patients who find themselves in a situation like the Rybak family's, Corbett advises calling the hospital billing department and asking to speak with a senior leader in its revenue cycle division. Unlike an account representative, this person could make decisions, Corbett said.

At the end of the conversation, ask to get the explanation in writing, he added.

"You'd anticipate and hope those notes are being recorded," Corbett said, but that may not be the case. Or notes might get recorded in a section of hospital files that are excluded from a patient's legal medical record, making it difficult for patients to access later.

For Suzanne Rybak, the idea of calling McLeod Health to straighten out yet another bill was too much. Instead, she added the statement to a binder of paperwork, in which she's documented all her billing struggles with McLeod Health over the past two years.

Still, out of sight hardly means out of mind. The binder sits in her craft room, where she remembers Jameson encouraging her as she made beach bags and other items. He'd say to use "fruity colors," Suzanne recalled — his way of describing tropical colors. Now she makes candles in that room, focusing on tropical fragrances she knows Jameson would have loved.

"I want hospitals to realize that you're not just sending this bill to an address," Suzanne said. "There are people who live in that house, who are going to open that mail and have feelings. … It's a disaster to bring all that up again."

Aneri Pattani: apattani@kff.org, @aneripattani

Doctors Trying to Prescribe Abortion Pills Across State Lines Stymied by Legislation

KFF Health News, April 6, 2022

Legislation pushed by anti-abortion rights lawmakers claims that the pill is too risky to be prescribed without an in-person exam.

This article was published on Wednesday, April 6, 2022 in Kaiser Health News.

By Rachel Bluth

Soon after Dr. Mai Fleming finished her medical residency in the San Francisco Bay Area, she got to work on her Texas medical license. The family medicine doctor had no intention of moving there but invested nine months to master Texas medical law, submit to background checks, get fingerprinted, and pay hundreds of dollars in licensing fees.

It's a process she has since completed for more than a dozen other states — most recently New Mexico, in February.

"Where I live is an area where abortion is really readily accessible," said Fleming, who practices in San Francisco, California. "My approach has been to broaden access beyond my geographic bubble."

Fleming is among a wave of doctors, nurse practitioners, and other healthcare providers who are getting licensed in multiple states so they can use telemedicine and mail-order pharmacies to help more women get medication abortions.

But they're increasingly being stymied by state regulations. Many states already restrict doctors' ability to consult with patients online or by phone and/or dispense abortion pills through mail-order pharmacies. A crop of new legislation could shut them out, pushed by lawmakers who oppose abortion and argue the medication is too risky to be prescribed without a thorough, in-person examination.

So far this year, 22 states have introduced a combined 104 proposals attempting to restrict medication abortions, such as by prohibiting the mailing of abortion pills and/or requiring them to be dispensed in person, according to the Guttmacher Institute, an organization that researches and advocates for abortion rights. Four of those proposals have already been enacted by South Dakota.

In Georgia, lawmakers are considering a measure that would require the pills to be dispensed in person and would prohibit anyone from sending them through the mail. The bill, which has passed one of two chambers of the Georgia legislature, also requires pregnant patients to appear in person for tests to check for rare complications and gather other information, a common strategy anti-abortion lawmakers have used to make medication abortion more difficult to obtain.

"We wouldn't have a telemedicine visit and teach a woman how to perform a surgical abortion," said Bruce Thompson (R-White), the Georgia state senator who introduced the measure. "Why would we do that with pills when, frankly, we have plenty of physicians or medical clinics around the state?"

If it passes, Georgia will join the 19 other states that prohibit telemedicine for medication abortions.

In a medication abortion, people who are up to 10 weeks pregnant can terminate their pregnancies by ingesting two pills over 48 hours: mifepristone, which terminates the pregnancy, and misoprostol, which expels it. The method has become increasingly popular, and more than half of abortions in the U.S. in 2020 were medication abortions.

Last year, the FDA made it easier for health professionals to prescribe the drugs used in medication abortions by removing the requirement that they be dispensed inside a clinic or hospital. That opened the door for patients to consult with a certified doctor online or over the phone and get a prescription mailed by a licensed pharmacy.

Dr. Lester Ruppersberger, a retired OB-GYN and president of the Catholic Medical Association in 2016, opposes telemedicine abortion, saying patients should make the decision face-to-face with a doctor.

Women need testing beforehand, he said, as well as access to surgeons or OB-GYNs in case of complications afterward.

"If somebody really wants an abortion, whether it's surgical or it's medical, and the closest facility where you can safely get access to that particular procedure is three hours away, then you'll get in your car, perfectly healthy, and drive three hours to take advantage of the medical system," said Ruppersberger, who is the medical director of two crisis pregnancy centers in Pennsylvania that provide pregnancy care while discouraging abortion.

But some abortion providers saw the FDA's regulatory change as an opportunity to expand access for people in states that are restricting abortion procedures and/or medication abortions.

For nearly two years, Fleming flew to Texas a few days a month to perform abortion procedures, but that ended in September 2021, when SB 8, a Texas law banning almost all abortions after about six weeks, went into effect. Since then, similar laws have been introduced or passed in Idaho and Oklahoma.

This summer, the U.S. Supreme Court likely will rule on Mississippi's proposed 15-week abortion ban, a case that could end the national right to abortion enshrined by Roe v. Wade and leave the question up to states.

Now, Fleming primarily uses telemedicine to try to bring abortions to more people, despite the crackdowns. Many of her patients are from states with permissive abortion rules but live in rural or other areas where abortions are hard to find.

"Ultimately this kind of work does broaden access to folks who have no other options," Fleming said. "But it's not actually solving the root issue and the restrictions that shouldn't exist in the first place."

At the crux of Fleming's argument: No matter how many providers get licensed in states that allow telemedicine and mail-order abortion prescriptions, they can't provide those services in the growing number of states that don't.

"We're reaching a point where the states with favorable regulatory situations are already served," said Elisa Wells, the co-founder and co-director of Plan C, which helps patients get medication abortions.

Once the FDA adopted the new regulations last year, Wells awarded research grants to some providers to get their telemedicine practices up and running. They used the money for malpractice insurance, licensing, and other costs.

One of those doctors, Dr. Razel Remen, based in the Detroit area, has since obtained licenses in multiple states. Remen performs abortions at a Michigan clinic and can serve patients in Colorado, Illinois, Minnesota, and New York and through telemedicine.

Remen said she was inspired to get into telemedicine when she saw the work of Dr. Rebecca Gomperts, who founded a group called Aid Access.

Aid Access relies on nine U.S.-based clinicians to provide medication abortions in the states that allow it via telemedicine. To serve patients in the remaining states, the group works through a doctor and pharmacy based outside the U.S.; neither is subject to U.S. regulations. Gomperts practices in Austria and prescribes abortion medication through an Indian pharmacy.

Joanne Spetz, director of the Philip R. Lee Institute for Health Policy Studies at the University of California-San Francisco, said doctors interested in providing medication abortions across state lines can only do so much as more states shut down the practice.

"These efforts to credential and train and educate more clinicians certainly can help to reduce the pressure on the system," Spetz said. But "unless somebody wants to try to flout those state laws, it doesn't necessarily help."

This story was produced by KHN, which publishes California Healthline, an editorially independent service of the California Healthcare Foundation.

Rachel Bluth: rbluth@kff.org, @RachelHBluth

Why nurses are raging and quitting after the RaDonda Vaught verdict

KFF Health News, April 5, 2022

Nurses warn that the fallout will ripple through their profession, demoralizing and depleting the ranks of nurses already stretched thin by the pandemic. Ultimately, they say, it will worsen healthcare for all.

This article was published on Tuesday, April 5, 2022 in Kaiser Health News.

By Brett Kelman and Hannah Norman

Emma Moore felt cornered. At a community health clinic in Portland, Oregon, the 29-year-old nurse practitioner said she felt overwhelmed and undertrained. Coronavirus patients flooded the clinic for two years, and Moore struggled to keep up.

Then the stakes became clear. On March 25, about 2,400 miles away in a Tennessee courtroom, former nurse RaDonda Vaught was convicted of two felonies and facing eight years in prison for a fatal medication mistake.

Like many nurses, Moore wondered if that could be her. She'd made medication errors before, although none so grievous. But what about the next one? In the pressure cooker of pandemic-era healthcare, another mistake felt inevitable.

Four days after Vaught's verdict, Moore quit. She said Vaught's verdict contributed to her decision.

"It's not worth the possibility or the likelihood that this will happen," Moore said, "if I'm in a situation where I'm set up to fail."

In the wake of Vaught's trial ― an extremely rare case of a healthcare worker being criminally prosecuted for a medical error ― nurses and nursing organizations have condemned the verdict through tens of thousands of social media posts, shares, comments, and videos. They warn that the fallout will ripple through their profession, demoralizing and depleting the ranks of nurses already stretched thin by the pandemic. Ultimately, they say, it will worsen healthcare for all.

Statements from the American Nurses Association, the American Association of Critical-Care Nurses, and the National Medical Association each said Vaught's conviction set a "dangerous precedent." Linda Aiken, a nursing and sociology professor at the University of Pennsylvania, said that although Vaught's case is an "outlier," it will make nurses less forthcoming about mistakes.

"One thing that everybody agrees on is it's going to have a dampening effect on the reporting of errors or near misses, which then has a detrimental effect on safety," Aiken said. "The only way you can really learn about errors in these complicated systems is to have people say, 'Oh, I almost gave the wrong drug because …'

"Well, nobody is going to say that now."

Fear and outrage about Vaught's case have swirled among nurses on Facebook, Twitter, and Reddit. On TikTok, a video platform increasingly popular among medical professionals, videos with the "#RaDondaVaught" hashtag totaled more than 47 million views.

Vaught's supporters catapulted a plea for her clemency to the top of Change.org, a petition website. And thousands also joined a Facebook group planning to gather in protest outside Vaught's sentencing hearing in May.

Ashley Bartholomew, 36, a Tampa, Florida, nurse who followed the trial through YouTube and Twitter, echoed the fear of many others. Nurses have long felt forced into "impossible situations" by mounting responsibilities and staffing shortages, she said, particularly in hospitals that operate with lean staffing models.

"The big response we are seeing is because all of us are acutely aware of how bad the pandemic has exacerbated the existing problems," Bartholomew said. And "setting a precedent for criminally charging [for] an error is only going to make this exponentially worse."

Vaught, who worked at Vanderbilt University Medical Center in Nashville, was convicted in the death of Charlene Murphey, a 75-year-old patient who died from a drug mix-up in 2017. Murphey was prescribed a dose of a sedative, Versed, but Vaught accidentally withdrew a powerful paralyzer, vecuronium, from an automated medication-dispensing cabinet and administered it to the patient.

Prosecutors argued that Vaught overlooked many obvious signs she'd withdrawn the wrong drug and did not monitor Murphey after she was given a deadly dose. Vaught owned up to the error but said it was an honest mistake ― not a crime.

Some of Vaught's peers support the conviction.

Scott Shelp, a California nurse with a small YouTube channel, posted a 26-minute self-described "unpopular opinion" that Vaught deserves to serve prison time. "We need to stick up for each other," he said, "but we cannot defend the indefensible."

Shelp said he would never make the same error as Vaught and "neither would any competent nurse." Regarding concerns that the conviction would discourage nurses from disclosing errors, Shelp said "dishonest" nurses "should be weeded out" of the profession anyway.

"In any other circumstance, I can't believe anyone ― including nurses ― would accept 'I didn't mean to' as a serious defense," Shelp said. "Punishment for a harmful act someone actually did is justice."

Vaught was acquitted of reckless homicide but convicted of a lesser charge, criminally negligent homicide, and gross neglect of an impaired adult. As outrage spread across social media, the Nashville district attorney's office defended the conviction, saying in a statement it was "not an indictment against the nursing profession or the medical community."

"This case is, and always has been, about the one single individual who made 17 egregious actions, and inactions, that killed an elderly woman," said the office's spokesperson, Steve Hayslip. "The jury found that Vaught's actions were so far below the protocols and standard level of care, that the jury (which included a longtime nurse and another healthcare professional) returned a guilty verdict in less than four hours."

The office of Tennessee Gov. Bill Lee confirmed he is not considering clemency for Vaught despite the Change.org petition, which had amassed about 187,000 signatures as of April 4.

Lee spokesperson Casey Black said that outside of death penalty cases the governor relies on the Board of Parole to recommend defendants for clemency, which happens only after sentencing and a board investigation.

But the controversy around Vaught's case is far from over. As of April 4, more than 8,200 people had joined a Facebook group planning a march in protest outside the courthouse during her sentencing May 13.

Among the event's planners is Tina Visant, the host of "Good Nurse Bad Nurse," a podcast that followed Vaught's case and opposed her prosecution.

"I don't know how Nashville is going to handle it," Visant said of the protest during a recent episode about Vaught's trial. "There are a lot of people coming from all over."

Hannah Norman: hannahn@kff.org, @hnorms

Why nurses are raging and quitting after the RaDonda Vaught verdict

KFF Health News, April 5, 2022

Nurses warn that the fallout will ripple through their profession, demoralizing and depleting the ranks of nurses already stretched thin by the pandemic. Ultimately, they say, it will worsen healthcare for all.

 

As U.S. Nears 1M COVID Deaths, One Hard-Hit County Grapples with Unthinkable Loss

KFF Health News, April 3, 2022

Pennsylvania's Mifflin County offers a snapshot into how one hard-hit community, with more than 300 dead, is coping.

This article was published on Friday, April 1, 2022 in Kaiser Health News.

McVEYTOWN, PA — Connie Houtz didn't think COVID would be that bad.

She'd seen many people in this rural hamlet in central Pennsylvania get infected yet recover within a few days. She did not get vaccinated because she worried about how a new vaccine, developed in record time, might affect her heart condition.

Last October, her youngest son, 45-year-old Eric Delamarter, developed a chest cold. He put off going to the doctor because he had customers waiting at his shop where he repaired cars, she said. When he finally went to the emergency room at Geisinger Lewistown Hospital, he was diagnosed with pneumonia and COVID.

Within a few days, Houtz's oldest son, 50-year-old Toby Delamarter, had also been admitted to the hospital with the virus and shortness of breath.

Less than two weeks later, both of her sons were dead. Neither had been vaccinated.

"Even though it does not seem fair and does not seem right, down the road we will find a reason for why things happen," said Houtz, 71, as she sat at her kitchen table.

Eric and Toby Delamarter are two of the roughly 300 people who have died of COVID in Mifflin County, where cows grazing in pastures and Amish horse and buggies are frequent sights. The county 60 miles northwest of Harrisburg leans heavily Republican — 77% of votes cast in 2020 were for Donald Trump — and the former president's downplaying of COVID-19 found fertile ground there.

Mifflin has one of the highest COVID death rates among U.S. counties with at least 40,000 people, according to government data compiled by Johns Hopkins University — 591 deaths per 100,000 residents as of mid-March, compared with 298 deaths nationally.

The United States is nearing 1 million deaths from COVID — a number that few thought possible when the pandemic began.

In March 2020, Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, said that based on modeling of the pace of the coronavirus's spread in the U.S. at that time, "between 100,000 and 200,000" people may die from COVID.

Reaching a million deaths seemed even more improbable when safe and effective vaccines came onto the market in December 2020. More than 60% of the 977,000 deaths have occurred since then.

Mifflin County offers a snapshot into how one hard-hit community moved from skepticism about the scientific reality of the COVID virus, and then about the vaccine, to coping with unbearable loss and processing the trauma. Roughly 8 in 10 deaths nationwide from April to December 2021 were among the unvaccinated, according to the latest analysis of data from 23 states and New York City and Seattle by the Centers for Disease Control and Prevention.

Mifflin County Coroner Daniel Lynch isn't over the stress of COVID even as deaths have declined this year. As of mid-March, his office had counted 337 COVID deaths in the county — about 60 more than the official tally kept by the state. That's because the coroner counts anyone who dies in the county, including those who lived in other counties. Among the people in the coroner's count, 311 hadn't received even one COVID shot. Few residents wore masks even when cases were high nationally and locally.

"It was pure hell," Lynch said. "I have been a coroner since 1996 and never got calls from nurses reporting deaths crying on the phone or facilities reporting two or three deaths at one time."

In Lewistown, the county seat, finding people who knew some of the dead is easy.

At the Corner Lunchbox on a recent afternoon, hands of all five employees and customers quickly shot up when asked whether they knew anyone killed by COVID. Sheila Saurbeck, 65, a manager, said she had lost two friends. And she had COVID herself last year, recovering after a couple of weeks.

Behind the counter was owner Lorrie Sirgey, 56. She said she was hospitalized with COVID for four days last spring before she got vaccinated. "It's been a scary time," she said.

As elsewhere in the country, Mifflin County has seen COVID cases fall dramatically since January. It's unusual to see anyone wearing masks. Health experts point to several factors behind Mifflin County's high death rate:

  • A large older population — 22% of residents are 65 or older.
     
  • A low COVID vaccination rate (51% of residents are fully vaccinated, compared with 63% statewide).
     
  • The prominent Amish and Mennonite populations; Amish people make up over 8% of county residents. Members of those communities largely did not get vaccinated and often gathered for large weddings and funerals during the past two years, according to county officials. Amish, in particular, have low rates of vaccination because they are leery of government intervention and rely on family traditions for preventive medicine.

Mifflin County Commissioner Kevin Kodish also blames politics.

"We are very rural here," he said. "It's heavy Republican and heavy in Trump support, so in the beginning people were skeptical of COVID because he downplayed the disease. And I think that carried over with skepticism with vaccines."

Having so many deaths in the county of about 45,000 people is difficult to comprehend, he added. His 94-year-old mother, who was living in a nursing home, died last year not long after her own bout with COVID.

Kodish, the only Democrat on the three-member County Commission, said COVID split the community, between people who took the disease seriously and got vaccinated, practiced physical distancing, and wore masks and others who just wanted to live their regular lives.

Although COVID has been devastating to many families, the Republican mayor of Lewistown, Deborah Bargo, acknowledged the death toll but focused on how her town's economy is improving.

"It's been hard for those who have lost loved ones, and that pain never goes away," said Bargo, who has been mayor for 15 years. "But, economically, we've bounced back."

Bargo pointed out that nearly every storefront in the downtown square is occupied, a century-old theater is being restored, and a young Mennonite entrepreneur has recently opened a cafe-bakery.

She said she is worried that many older people who stayed in their homes because of fears about COVID have been forever changed by the isolation. In her church, she said, people who wear masks still sit away from everyone else.

Noah Wise, 59, a road supervisor in Burnham, just north of Lewistown, said he's not coping well. His wife, Lisa, a nurse at Geisinger's outpatient care department, died of COVID in December. She was 58 and not vaccinated because she was worried how the vaccine would affect a chronic health condition — even though health experts say people with chronic health issues are more likely to suffer severe consequences and death from COVID.

Wise said Lisa likely caught the virus from him after he was infected in October. "She had no regrets about not being vaccinated," Wise said. "She thought she would pull through."

His wife's death has not persuaded him to get vaccinated because he believes his earlier infection has given him immunity. Natural immunity does confer some resistance to catching the disease but is highly variable in strength, so health experts urge those who have been infected to get vaccinated.

Jenny Barron Landis, executive director of the Juniata River Valley Visitors Bureau, which covers Mifflin County, said many community members were not interested in taking orders from government scientists. "We have a lot of independent farmers and business owners that didn't agree with or honor the mandates, and that has played a big role here in the number of deaths and the number of cases," she said.

Against that backdrop, Geoff Burke, a local funeral director, recalled weeks when his Lewistown funeral home would handle up to 17 deaths, many of them from COVID — triple its average. "We were overwhelmed," he said. "COVID just ravaged our town as it went from nursing home to nursing home."

On March 15, Geisinger Lewistown, a 133-bed hospital, had just two COVID patients, down from 50 earlier this winter, said Dr. Michael Hegstrom, chief medical officer for the region of Geisinger that includes Mifflin County. Geisinger refused to disclose what percentage of its employees at the Lewistown hospital have been vaccinated for COVID. It would say only that all its employees are either vaccinated or received an exemption. Geisinger also refused to disclose how many of its employees in Lewistown died of COVID.

Yet the hospital is still being affected by the virus. It is running above capacity because of high numbers of patients with medical issues such as heart disease and cancer who put off care during the pandemic, Hegstrom said.

Connie Houtz said that the deaths of Eric and Toby — two of her three children — had been hard but that she was thankful for family and friends and strong faith. She remembers Toby — who had some health problems, including cancer of the small intestine a few years ago — as "easygoing and a big teddy bear." Eric, who had high blood pressure, loved spending time with his daughter and taking the teenager fishing, Houtz said.

Both brothers rode Harley-Davidson motorcycles and would hang out with friends at a bar near her house. "It still hits you at times that they are really gone," she said.

Phil Galewitz: pgalewitz@kff.org, @philgalewitz

Pandemic Funding Is Running Out for Community Health Workers

KFF Health News, March 31, 2022

Hundreds of millions of dollars were supposed to go to building a community health workforce after the American Rescue Plan Act was signed into law last March, but much of the money is being quickly spent on health departments or national initiatives, not local, community-based organizations.

This article was published on Thursday, March 31, 2022 in Kaiser Health News.

By Lauren Weber

GRANITE CITY, Ill. — As a community health worker, 46-year-old Christina Scott is a professional red-tape cutter, hand-holder, shoulder to cry on, and personal safety net, all wrapped into one.

She works in an office in the shadow of the steel mill that employed her grandfather in this shrinking city in the Greater St. Louis area. Gone with many of the steel jobs is some of the area’s stability — almost a fifth of Granite City’s residents live in poverty, far higher than the national average.

Then another destabilizer — covid-19 — hit. And so Scott stepped in: She knows how to access rental assistance for those out of work as they isolate at home with covid. She can bring people cleaning supplies or food from a local food bank. She’ll stay on the phone with clients, helping them budget their finances to keep the lights on. And the calls keep coming because people know she understands.

“I’ve been hungry. I’ve not had a car,” Scott said. “I’ve been through those things.”

Scott is one of the over 650 community health workers the Illinois Department of Public Health hired through local, community-based organizations starting last March. This Pandemic Health Navigator Program workforce was made possible by a nearly $55 million grant from the Centers for Disease Control and Prevention through the federal pandemic relief passed by Congress. The team has completed at least 45,000 assistance requests, which were referred to them through contact tracing of covid cases.

As the workers have gained the community’s trust, Scott said, new requests have poured in from people who have heard about the catch-all program, which does more than what many people may think of as public health work.

But the money is set to run out at the end of June. Workers such as Scott are uncertain about their futures and those of the people they help each day. Dr. Georges Benjamin, executive director of the American Public Health Association, said that’s the tragedy of the boom-bust nature of public health funding in the United States.

“As the dollars go away, we’re going to see some people falling off the cliff,” he said. The problem, as Benjamin sees it, is the country’s lack of a systematic vision for public health. “If you did this with your army, with your military, you could never have a sound security system.”

Community health workers were positioned as key to President Joe Biden’s public health agenda. Ideally, they are one and the same as those they serve — like a neighbor who can be trusted when help is needed. Popular in countries such as Costa Rica, Liberia, and Brazil, community health workers have been difficult to maintain in the United States without consistent ways to pay them.

Hundreds of millions of dollars were supposed to go to building a community health workforce after the American Rescue Plan Act was signed into law last March, said Denise Smith, the founding executive director of the National Association of Community Health Workers. But, she said, much of the money is being quickly spent on health departments or national initiatives, not local, community-based organizations. And a lot of it has been going to AmeriCorps workers who may not be from the communities they work in — and make poverty-line salaries, Smith said.

“For bills and a car note, rent, or children, that’s just not sustainable,” she said. “We can’t do it for free.”

By contrast, Illinois’ program tries to hire workers from within communities. Two-thirds of its workers identify as Latino/Hispanic or Black. About 40% were previously unemployed, and hiring them injects money into the communities they serve. The jobs pay $20 to $30 an hour, and almost half include health insurance or a stipend toward it.

That’s by design, said Tracey Smith, who oversees the Pandemic Health Navigator Program for the Illinois Department of Public Health and is not related to Denise Smith. She believes paying for such workers is a necessity, not a luxury, in helping people navigate the nation’s broken health care system and disjointed government assistance programs.

Angelia Gower, a vice president of the NAACP in Madison, Illinois, is now one of those paid community health workers. “They see you out there week after week and month after month and you’re still there, they start trusting,” she said. “You’re making a connection.”

But as covid cases have waned, the number of Illinois’ pandemic health workers has decreased by nearly a third, to roughly 450, in part because they have found other opportunities.

Smith is optimistic the program will secure money to keep an estimated 300 community health workers on staff and then use the goodwill they’ve built up in communities to focus on disease prevention. The fragmented American health care system — and its systemic inequities — won’t disappear with covid, she said. Plus, millions of people are poised to lose their Medicaid coverage as pandemic benefits run out, Benjamin said, creating a hole in their safety net.

Part of the long-term funding challenge is quantifying what workers like Scott do in a day, especially if it doesn’t relate directly to covid or another communicable disease. How do you tabulate the difference made in a client’s life when you’re securing beds for their children, laptops for them to go to school, or tapping into Federal Emergency Management Agency funds to pay funeral costs after a loved one dies of covid? How do you put a dollar amount on wraparound services that may keep a family afloat, especially when a public health emergency isn’t occurring?

As Scott likes to point out, most of the time she’s helping people use resources already available to them.

The National Association of Community Health Workers’ Denise Smith is worried that even though programs like Illinois’ are doing the work to help with health inequities, they may go the way that many Affordable Care Act grants did. In 2013, she was working as a community health worker in Connecticut, helping cut the uninsured rate in her area by 50%. But the money ran dry, and the program disappeared.

She said North Carolina is an example of a state that has designed its pandemic-inspired community health worker program to be more permanent. But, nationally, Congress has yet to approve more money for covid testing and vaccines — much less for longer-term public health investments.

Meanwhile, Scott can’t help but worry about people such as 40-year-old Christina Lewis.

As she leaves Lewis’ mobile home after dropping off a load of groceries, Scott reminds Lewis to keep wearing her mask even as other people are shedding theirs. Scott used her own family as an example, saying they all wear their masks in public even though people “look at me like I’ve got five heads.”

Lewis said Scott’s help — bringing over groceries, talking through budgeting — has been invaluable. Lewis has stayed home throughout the pandemic to protect her 5-year-old daughter, Briella, who was born prematurely and has chronic lung disease. The struggle to make ends meet is far from over amid rising inflation. Briella knows to turn off the lights as soon as she’s out of a room. And now they are eyeing rising gasoline prices.

“I already know I’m going to have to get a bike,” Lewis said.

Over the past months, Scott has listened and consoled Lewis as she cried over the stress of staying afloat and losing family members to covid. Scott isn’t sure what will happen to all her clients if her support disappears.

“What happens to people when it goes away?” Scott asked.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

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