“Dedicated to the Future of Health Care in the Tri-State Area,” the sign declares. “May 11, 1981.”

More recent placards posted at the facility’s entryways are ominous, however. “Closed,” they say. “No Trespassing.”

The Keokuk hospital, which served rural areas of Iowa, Illinois, and Missouri, closed in October 2022. But new owners plan to reopen the hospital with the help of a new federal payment system. The Rural Emergency Hospital program guarantees hospitals extra cash if they provide emergency and outpatient services but end inpatient care.

“We’ve been without a hospital for over a year — and I don’t think anybody in Keokuk or the surrounding areas will be picky in any way, shape, or form,” said Kathie Mahoney, mayor of the town of about 9,800 people. She said residents would prefer to have a full-service hospital with inpatient beds, even though those types of beds had been used sparingly in recent years.

The revival of the Keokuk hospital would mark a small victory in the nationwide struggle to save rural hospitals, which continue to close due to staffing shortages, low reimbursement rates, and declining patient numbers. The new federal program, which went into effect in January 2023, is meant to stem the closures. But there have been growing pains, said George Pink, deputy director of the North Carolina Rural Health Research Program, which tracks hospital closures and conversions.

Just 18 of the more than 1,700 eligible rural hospitals nationwide have applied for and won the new designation. Many hospitals are reluctant to give up inpatient services entirely, and some are concerned about how other payment streams could be affected, rural health leaders say. The new designation’s unclear definition of “rural” has also caused confusion.

“We are still in an era of rural hospital closures,” Pink said. Nine hospitals closed in 2023, and that number could rise in 2024, he said. An influx of federal relief funds during the pandemic kept struggling hospitals afloat, but now that money is largely gone.

The Rural Emergency Hospital program is the first new federal payment model for hospitals since 1997. Dora Hughes, acting chief medical officer of the Centers for Medicare & Medicaid Services, said the new model’s criteria are outlined by statute and “hospitals should consider specific circumstances before making the decision to apply.”

The federal agency is providing outreach to rural communities and welcomes feedback, Hughes wrote in an email to KFF Health News.

Now, rural health leaders and federal lawmakers are working quickly to tweak the new program to attract more applicants, said Carrie Cochran-McClain, chief policy officer of the National Rural Health Association.

Currently, facilities that convert to rural emergency hospitals receive a 5% increase in Medicare payments, plus an average annual payment of about $3.2 million, in exchange for giving up their expensive inpatient beds and focusing solely on emergency and outpatient care. Rural hospitals with no more than 50 beds, like Keokuk’s, that closed after the law was signed on Dec. 27, 2020, are eligible to apply for the program and reopen with emergency and outpatient services.

More than 100 rural hospitals nationwide have inquired about converting, said Janice Walters, interim executive director for the Rural Health Redesign Center, which has a federal grant to provide technical assistance to hospitals that want to apply.

But only about a quarter of those inquiries are likely to become a rural emergency hospital, and persuading more troubled hospitals to make the leap would require regulators to make changes, Walters said.

Her advice? “Give them 10 beds to just take care of their community.”

In a journal article published last year, general surgeon Sara Schaefer worried about the unintended consequences of getting rid of rural inpatient beds. Schaefer, who spent six months of medical school at a small rural Idaho hospital, said she saw firsthand how difficult it was for the hospital to transfer patients to bigger facilities, which were often too full to take them.

“There has to be a better way,” said Schaefer, who is also a research fellow at the Center for Healthcare Outcomes & Policy at the University of Michigan.

The rural health association’s Cochran-McClain said lawmakers are considering changes that could allow the hospitals to:

• Keep overnight beds for patients who need moderate levels of care, such as those with pneumonia or in need of physical therapy after surgery.
• Allow participation in a federal drug discount program called 340B, which provides hospitals with extra revenue.
• Keep inpatient psychiatric or rehabilitation units open.
• Clarify eligibility, including which facilities qualify under the definition of “rural” and whether the hospitals that closed before the 2020 date in the law can apply.

Updates to the law could affect communities nationwide. In Fort Scott, Kansas, where the hospital closed in late 2018, Mayor Matthew Wells said the community wants the eligibility date pushed back. U.S. Sen. Jerry Moran (R-Kan.) introduced a bill in December that, if passed, would push eligibility back to 2015.

“This is a matter of life and death to my community,” Wells said. “I see a clear path, but the federal regulations in particular make that path nearly impossible.”

In Holly Springs, Mississippi, hospital chief executive Kenneth Williams said he doesn’t understand the federal definition of “rural.” His hospital, Alliance Healthcare Hospital, was one of the first to win the new Rural Emergency Hospital designation in early 2023. He laid off staff and shut down his inpatient beds. Then, CMS officials called to tell him they had made a mistake.

“And I said, ‘Wait a minute,’” Williams said. The hospital, which is about an hour south of Memphis, Tennessee, doesn’t meet the current criteria of rural, they told him. Williams, an internal medicine doctor, bought the hospital in 1999 and has been trying to keep it running since.

Federal regulators are now asking Williams to convert the facility into another type of Medicare payment model, such as the sole community hospital with inpatient beds that it was before. Williams said that would be difficult: “What kind of transition can I make, especially with reduced services?”

In Keokuk, the hospital fits the current requirements. Insight Health Group, the Michigan company that bought the shuttered facility last March, plans to apply for the new federal designation as soon as it obtains state permits under new Iowa regulations tailored to rural emergency hospitals. It would be the first such hospital in the state.

Like many other rural hospitals struggling to survive, Keokuk’s shuttered several key departments years ago, including its birthing and inpatient psychiatric units. In 2021, the last full year it was open, the hospital averaged fewer than three inpatients per night, according to data posted by the Iowa Hospital Association.

More than half of the three-story building would remain mothballed if the facility reopened under the new designation, but the emergency department could serve patients again as soon as late summer, said Atif Bawahab, Insight’s chief strategy officer.

Bruce Mackie has worked 32 years at the hospital, including 10 years as director of plant operations. The new owners kept him on to watch over the building. Beds, high-tech scanners, and lab equipment remain, but most of the clocks have stopped. “It’s spooky,” he said.

Even if the services are more limited than before, Mackie said, “everybody wants the hospital to reopen. This city needs an ER.”

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Azar made the historic declaration in September 2020, just two months before his boss, former President Donald Trump, lost reelection.

Now, Azar’s involved in the business of making importation happen. He is chairman of the board of LifeScience Logistics, a Dallas-based company that Florida is paying as much as $39 million to help manage its Canadian drug importation program, not including the cost of drugs.

LifeScience officials confirmed Azar’s position but didn’t respond to questions about how much he is paid or whether he’s involved in the Florida work. Azar didn’t return messages left with his employers or sent to a personal email address.

The revolving door between government and private sector jobs is well documented. It’s common for top U.S. officials in both parties to leave government service for what are often far better-paid jobs or board seats at companies in the industries they formerly regulated.

About 57% of presidential Cabinet-level officials later served on corporate boards of directors, according to a 2019 study by researchers at Boston and Harvard universities in The Journal of Politics, which examined 84 Cabinet members who served from 1992 to 2014.

“In general, we favor Cabinet secretaries not going into industries which they once regulated, because the possibility of conflicts of interest are unavoidable,” said Robert Weissman, president of Public Citizen, a government watchdog group.

He called Azar’s case atypical because his approval of drug importation was opposed by the pharmaceutical industry, in which Azar was formerly employed. Drugmakers argue the policy puts patients at risk of consuming counterfeit medicines. Azar joined the LifeScience board in January 2022, one year after the end of Trump’s term and about a year after Florida contracted with LifeScience in late 2020.

Katie Hernandez, a spokesperson for LifeScience Logistics, said in a statement that the company, which manages nearly 6 million square feet of warehouse storage across 11 states, signed its deal with Florida before Azar joined the board.

Ivana Katic, assistant professor of organizational behavior at the Yale School of Management, said that Azar’s position at LifeScience “can appear as a conflict of interest” because his policy decision as HHS secretary later benefited him professionally.

Azar was a deputy secretary at HHS during the George W. Bush administration before joining pharmaceutical giant Eli Lilly and Co. as a top executive in 2007, remaining there until months before joining the Trump administration.

Weissman, who supports drug importation, said he doubts Azar had any personal benefit in mind before his decision. Florida Gov. Ron DeSantis had pushed Trump to authorize importation from Canada, and the former president had said he supported importation before Azar certified it was safe.

Canadian drug importation has been the subject of decades of debate. While the U.S. does not regulate most drug costs, Canada does, generally resulting in lower prices than across the border.

In 2018, Azar called importation a “gimmick” because Canada’s pharmaceutical market isn’t large enough to meet U.S. demand. Indeed, the Canadian government has repeatedly warned the U.S. against importation, promising to block any plan that poses a risk of causing shortages in Canada.

The country has implemented regulations “to prohibit certain drugs intended for the Canadian market from being sold for consumption outside of Canada if that sale could cause, or worsen, a drug shortage in Canada,” Health Canada, which regulates drug safety, said in a Jan. 8 statement after the FDA’s approval of Florida’s plan. “This includes all drugs that are eligible for bulk importation to the U.S., including those identified in Florida’s bulk importation plan, or any other US state’s future importation programs.”

Under its contract with Florida, LifeScience Logistics must buy drugs from Canadian suppliers, contract with a lab to verify their authenticity, store the medicines, and ship them to state agencies for distribution. LifeScience built a 100,000-square-foot facility in Lakeland, Florida, to warehouse drugs imported from Canada.

President Joe Biden supported drug importation during his 2020 campaign, but after the election his administration moved slowly to advance the process. Colorado has an importation application pending with the FDA, while several other states have passed laws allowing for importation. DeSantis has accused the Biden administration of slow-walking a decision, and his administration filed a lawsuit over the FDA’s delay.

Florida’s importation plan will save the state up to $180 million in the first year of the program, the state said. The importation program wouldn’t aid consumers directly. It’s instead aimed at helping state agencies, including its prisons, health department, and Medicaid program, obtain lower-cost drugs for HIV and AIDS, diabetes, and other conditions.

Florida’s plan still faces many hurdles. On top of Canada’s reluctance to participate in U.S. importation programs, some drug manufacturers have deals with Canadian wholesalers preventing them from exporting medicines, and the FDA decision is likely to face a legal challenge by drugmakers.

The drug industry’s major lobbying group, the Pharmaceutical Research and Manufacturers of America, or PhRMA, previously sued to stop Azar’s importation decision. It’s expected to file suit to block Florida’s program as well.

A PhRMA spokesperson declined to comment on Azar’s role.

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CHARLESTON, S.C. — Republican presidential hopeful Nikki Haley will learn how her campaign is resonating with voters after the Jan. 15 Iowa caucuses, the first presidential nominating contest of this election year.

Already, the former South Carolina governor — who became well known as one of the Affordable Care Act’s loudest critics during her tenure in office from 2011 to 2017 — has raised questions about what her presidency could mean for the nation’s health care policy.

“I would be very concerned,” said Sue Berkowitz, policy director and special counsel for the South Carolina Appleseed Legal Justice Center. “South Carolina is at the bottom of so many things in rankings in our country because of a number of the decisions she made while governor.”

While politicians from both parties rallied behind Haley when she urged lawmakers to remove the Confederate battle flag from statehouse grounds following the 2015 church shooting in this coastal city, her politics diverged sharply from those of her Democratic colleagues when it came to most health care issues.

Haley’s campaign did not respond to multiple requests for comment, but statements she’s made during recent debates offer clues about her health care positions.

She has criticized the Biden administration for high federal spending on covid relief and for the number of people on Medicaid, a program she has argued the federal government should give states more flexibility in funding and administering.

She has also emphasized the need to find consensus on banning abortions late in pregnancy. And on Jan. 10, during her heated sound-off with Florida Gov. Ron DeSantis in the final debate before the Iowa caucuses, she reiterated her critical stance on gender-affirming care.

“I have always said that boys need to go into boys’ bathrooms, girls need to go into girls’ bathrooms, that we shouldn’t have any gender transitions before the age of 18,” she said. “Just like we don’t have tattoos before the age of 18, we shouldn’t have gender transformation or puberty blockers.”

On the campaign trail, she’s addressed reforming Medicare and Social Security. But her tenure as governor, which overlapped with several tumultuous years of national health care reform, offers an even clearer picture of how a Haley presidency might look.

Former South Carolina Medicaid Director Anthony Keck pointed out that one of her early achievements as governor was fixing a $228 million Medicaid deficit.

“People forget what dire straits the Medicaid program was in when she came into office and how it took us a couple years to right the ship,” said Keck, now executive vice president for system innovation at Ballad Health in Tennessee.

Beyond that, Keck said Haley understood that the cost of health care was “growing faster than most people’s paychecks,” adding that affordability and access were “really important to her.”

As Haley eyes the White House, here’s a recap of her health care record as South Carolina governor, a post she left in 2017 after Trump appointed her as ambassador to the United Nations.

Affordable Care Act

In 2011, Haley convened an advisory committee to decide if South Carolina should build its own health insurance marketplace instead of participating in the federal one established under the Affordable Care Act.

But before the group gathered for its first meeting, Haley wrote in an email to her advisers that the “whole point of this commission should be to figure out how to opt out and how to avoid a federal takeover, NOT create a state exchange,” according to a report published by The Post and Courier.

When that email was made public, then-Sen. Tom Harkin (D-Iowa) requested a federal investigation to find out if Haley had predetermined the outcome of the committee. She was eventually cleared of any wrongdoing.

Throughout her time in office, Haley repeatedly advocated for the repeal and replacement of the ACA, but she has not given a definitive answer on the campaign trail about whether she’d try to repeal the law if elected president, The New York Times has reported.

Medicaid

In 2012, when the U.S. Supreme Court upheld the constitutionality of the ACA and made Medicaid expansion an option for every state, Haley declined to expand it in South Carolina. Christian Soura, one of her former cabinet members, estimated in 2019 that “several hundred” people in the Palmetto State had died because of the decision.

On the presidential campaign trail, Haley’s stance on Medicaid expansion has remained unchanged, even as people who live in nonexpansion states broadly support it, according to KFF polling.

South Carolina remains one of 10 states that have not expanded Medicaid eligibility under the ACA, leaving more than 90,000 residents in a health insurance coverage gap, according to a 2023 KFF report.

Even so, Medicaid enrollment and spending in South Carolina during Haley’s tenure grew substantially, drawing criticism from some conservatives.

In 2012, her administration chose to implement a federal program that automatically issued new Medicaid coverage to children from low-income families based on data from welfare assistance and the Supplemental Nutrition Assistance Program, formerly known as food stamps. A 2013 case study found that the Express Lane Eligibility initiative grew Medicaid enrollment in South Carolina by more than 92,000 children in less than a year and that the simplified process “resulted in large enrollment and retention improvements.”

Haley’s administration was also widely applauded for establishing a coalition of health insurers, hospitals, and health care providers to improve birth outcomes in a state where Medicaid pays for more than 60% of all deliveries. Infant and maternal death rates in South Carolina have long ranked among the worst in the nation.

Recent research suggests, however, that some of the policies Haley’s administration prioritized, such as a home visiting program and a campaign to prevent early elective deliveries, didn’t improve maternal or infant health outcomes.

Abortion

On the one-year anniversary of the U.S. Supreme Court’s Dobbs v. Jackson Women’s Health Organization ruling, which allowed state legislatures to outlaw abortion, Haley called the decision a “victory for life and democracy.”

Her position aligned with a controversial bill she signed into state law in 2016 that banned the procedure in South Carolina 20 weeks after the probable date of fertilization — slightly past the midpoint of a woman’s pregnancy.

When she signed the law, it affected only hospitals because the state’s three outpatient abortion clinics already didn’t administer abortions after 15 weeks of gestation. The bill, which she championed, made exceptions for if the fetus were diagnosed with an “anomaly” and would die or if the mother’s life were threatened. But no exceptions were made for rape or incest.

During the recent debate in Iowa, Haley called herself “unapologetically pro-life.”

“Not because the Republican Party tells me to be, but because my husband is adopted, and I’ve got my two sweet children sitting in front of me, and I had trouble having both of them,” she said. “Our goal should be how do we save as many babies as possible and support as many moms as possible.”

On the campaign trail, Haley has tried to thread the needle between being pro-life and recognizing the difficulty of enacting a national abortion ban. She has spoken of finding areas that are winnable for Republicans, including increasing access to contraception and supporting adoption. That said, Haley indicated she would sign a national abortion ban as president if such a bill reached the Oval Office.

Certificate of Need

During her first term, Haley vetoed more than $1 million from the state budget that had been allocated to administer the health department’s long-standing “certificate of need” program. The program required hospitals and health care providers to apply for permission from the state before building new facilities or purchasing expensive equipment, with the goal of controlling health care costs and avoiding duplication of available health care services.

At the time, Haley called the rules “intensely political” and said they allowed “bureaucratic policymakers” to block health care providers from offering treatment. “We should allow the market to work rather than politics,” she said.

Nevertheless, the state Supreme Court ruled in 2014 that a budget veto wasn’t sufficient to eliminate the regulations.

The South Carolina Legislature ultimately repealed the state’s certificate of need rules last year.

During the Jan 10. debate, Haley said she would eliminate certificate of need across the country. The rules still exist in about two-thirds of states.

Rural Hospitals

During Haley’s second year in the governor’s office, the hospital where she was born in 1972 closed its doors. After a failed attempt to merge with other hospitals in the area, it became financially unfeasible for that hospital in the rural town of Bamberg to remain open.

In 2013, Haley announced her administration would reimburse rural hospitals across the state for all their uncompensated care costs, amounting to tens of millions of dollars over her time in office. The policy is still in effect.

Essentially, hospitals lose money when uninsured patients don’t pay their bills. Federal law offers some support. For example, it requires state Medicaid programs to make “disproportionate share” payments to hospitals that serve large numbers of low-income and uninsured people.

But programs like those don’t necessarily cover all of the losses.

Haley prompted the South Carolina Legislature to support rural hospitals by increasing their disproportionate share payments because, without an infusion of cash, several of them faced the same fate as Bamberg County Memorial Hospital.

“I certainly don’t think it’s a bailout,” Haley told The Post and Courier in 2014. “We’re allowing solid footing for these hospitals to make the changes that they need to make.”

But her plan wasn’t fail-safe. Two more rural hospitals closed during Haley’s tenure as governor.

Vaccine Mandates

As a member of the state House of Representatives in 2007, Haley co-sponsored a bill that would have made the vaccine for HPV, the virus that causes nearly all cases of cervical cancer, mandatory for girls entering seventh grade. It was ultimately killed by evangelical lobbyists, who have historically associated the HPV vaccine with encouraging underage sex, KFF Health News reported.

Several years later, Haley called her support of that bill a mistake.

In 2012, Haley vetoed a bill that would have provided free, voluntary HPV vaccines to seventh graders in South Carolina.

During the pandemic, Haley, whose sister-in-law died from covid, said she received a covid vaccine, though she has said she firmly opposes covid vaccine mandates.

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“I was just trying to make a living,” said Brady, 56, a dealer and supervisor at Borgata in that New Jersey resort city. “You don’t think, you know, that you’re going to get sick at your job.”

Some casinos continue to allow indoor smoking even as the share of Americans who smoke fell from about 21% in 2005 to 12% in 2021 and smoking is banned in at least some public spaces in 35 states, the District of Columbia, and U.S. territories. Still, 13 of the 22 states and territories that allow casino gambling permit smoking in at least part of their facilities.

Brady is among the casino employees, anti-smoking advocates, and public health experts who argue it is long past time to snuff out casino exemptions from smoking bans, given the dangers of secondhand smoke. But they’ve faced stiff pushback from some gambling industry leaders, including in Missouri, Louisiana, Kentucky, and New Jersey, who argue that smoking bans drive gamblers away — especially in places where patrons can go instead to a casino in a nearby jurisdiction that allows them to light up.

The covid-19 pandemic renewed this fight and sharpened the arguments on both sides — on the dangers of particulate matter for the anti-smoking side and the vulnerability of revenues for the casino industry, even as the American Gaming Association reported record-breaking revenues in 2022 for in-person casino gambling beyond the growth of sports betting and online gambling.

Casinos were shut down for several months in spring 2020 as part of the nationwide effort to mitigate the spread of the coronavirus. Rules governing reopening, including masking and physical distancing requirements and bans on smoking, varied by state and, in some cases, by casino operator and community.

After suffering pandemic-era losses, some casino executives, and at least one union representing workers, leaned into a 2021 report commissioned by the Casino Association of New Jersey to combat efforts to ban or restrict smoking at their properties. Using data from 2019, the report suggests that as many as 2,500 Atlantic City casino workers could lose their jobs and tax revenue could fall by as much as $44 million in the first year if smoking is banned in New Jersey but not in neighboring Pennsylvania. Both states considered prohibitions on casino smoking in 2023; New Jersey lawmakers didn’t pass their bill and Pennsylvania’s remains in limbo.

Brian Christopher, a social media influencer specializing in casinos and gambling, said he has heard the arguments about lost business before — and is unconvinced. “People are not driving or flying to a casino to have a cigarette,” he said.

Still, officials in some places are persuaded by arguments about depressed tax revenue. Last spring, Shreveport, Louisiana, officials repealed a 2020 ban on smoking in casinos. Those pushing the repeal said local gambling taxes fell when gamblers left for nearby casinos where they could smoke. The new ordinance allows smoking on 75% of the casino floor.

And Churchill Downs Inc. announced in June it was moving a gambling facility planned for empty mall space in Owensboro, Kentucky, to a location outside the city limits. Though the company declined to comment for this article, the city’s mayor told the Messenger-Inquirer newspaper that a primary reason for the move was the city’s long-standing voter-approved smoking restrictions, which do not exempt casinos.

Kanika Cunningham, director of the St. Louis County Department of Public Health in Missouri, was part of an effort last year to end a casino loophole in her county’s 2011 indoor smoking ban. But after pushback from the gambling company Penn Entertainment, a compromise was reached allowing smoking on 50% of a casino’s floor.

“It’s a balance and one that we feel the marketplace should determine, particularly in such a competitive environment with other gaming facilities nearby and in neighboring states,” said Jeff Morris, Penn Entertainment’s vice president of public affairs and government relations.

Penn Entertainment employs “state of the art ventilation systems, extremely high ceilings,” and “adequate separation of smoking and non-smoking areas,” he wrote in an email to KFF Health News.

The problem, Cunningham said, is that secondhand smoke cannot be contained to a single location in a big room.

“There’s no safe amount, and trying to restrict it to a certain area isn’t going to work,” she said.

Filtration systems can remove much of the visible smoke, as well as the odor, from indoor spaces even when lots of people are smoking, creating the impression of clean air. But existing technology does not eliminate the dangerous particulates in cigarette smoke, according to a 2023 report from the American Society of Heating, Refrigerating and Air-Conditioning Engineers, or ASHRAE.

A study published in 2023 for the National Institutes of Health evaluated particulate matter at eight Las Vegas casinos that allowed smoking and one that did not. In casinos where smoking is allowed, particulate levels were significantly higher — even in areas designated as nonsmoking — than at the nonsmoking casino.

And in ventilated casinos where indoor smoking is allowed, one study showed, workers can have nicotine levels as much as 600% higher than employees exposed to smoking in other workplaces.

Secondhand smoke can cause coronary heart disease, stroke, lung cancer, and other diseases. Some studies have shown a link to breast cancer, although more research is needed, according to the National Cancer Institute.

The pandemic raised awareness of the dangers of airborne particulates, giving smoking bans fresh momentum, said Andrew Klebanow, co-founder of the independent industry consulting group C3 Gaming, which produced a report in 2022 largely refuting the economic risk of casinos going smoke-free.

Indeed, more than 1,000 U.S. casinos and other gambling properties now ban smoking, including more than 140 tribal casinos, according to Americans Nonsmokers’ Rights Foundation.

New Mexico’s tribal leaders collectively agreed to maintain smoking bans when pandemic restrictions were lifted, said Denis Floge, chief executive of Acoma Business Enterprises and Sky City Casino in North Acomita Village. Employee health has improved, he said, qualifying the casino for rebates on its insurance premium. Cleaning and replacement costs for carpets and equipment fell, he said, and the tribes “haven’t missed a beat” on revenues.

Some guests have grumbled about having to go outside to smoke, Floge said, but that’s about it. “We don’t have anybody who jumps up and down, or throws a fit and says, ‘I’m leaving and never coming back!’” he said.

Casino executives who oppose smoking restrictions overlook people who want to enjoy the “great food and the great entertainment, but won’t step foot in a casino because they get hit by a blast of smoke as soon as they step in,” said Pete Naccarelli, a Borgata dealer and one of three co-founders of the advocacy organization Casino Employees Against Smoking’s Effects.

He said they founded the group, which has chapters in New Jersey, Kansas, Pennsylvania, Rhode Island, and Virginia, after his casino put out ashtrays at 12:01 a.m. the day the pandemic-related smoking ban officially ended. Borgata did not answer requests for comment.

The industry-commissioned report on New Jersey suggests that while more nonsmokers might frequent casinos once smoking is banned, they probably would not make up for the revenue lost if smokers choose other venues or when smokers take breaks from gambling to light up.

But Brady, now cancer-free after chemotherapy and a full mastectomy, believes that if policymakers spent some time breathing the same air she and her co-workers do they’d act more quickly to ban smoking in casinos, rather than prioritize tax revenues. “Our lives are more important,” she said.

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Her commitment to becoming a maternal health care provider was sparked early on when she witnessed the discrimination and judgment leveled against her older sister, who became a mother as a teen. When the Supreme Court overturned Roe v. Wade in 2022, Peacock was already in her residency program in California, and her thoughts turned back to women like her sister.

“I knew that the people — my people, my community back home — was going to be affected in a dramatic way, because they’re in the South and because they’re Black,” she said.

But even though Peacock attended the Medical College of Georgia, she’s doing her obstetrics and gynecology residency at the University of California-San Francisco, where she has gotten comprehensive training in abortion care.

“I knew as a trainee that’s what I needed,” said Peacock, who plans to return to her home state after her residency.

Ever since the Supreme Court decision, California has worked to become a sanctuary for people from states where abortion is restricted. In doing so, it joins 14 other states, including Colorado, New Mexico, and Massachusetts. Now, it’s addressing the fraught issue of abortion training for medical residents, which most doctors believe is crucial to comprehensive OB-GYN training.

A law enacted in September makes it easier for out-of-state trainees to get up to 90 days of in-person training under the supervision of a California-licensed doctor. The law eliminated the requirement for a training license and also permitted training at programs such as Planned Parenthood that are affiliated with accredited medical schools.

“By allowing physician residents to come to California, where there are more opportunities for abortion training, and by allowing them to be reimbursed for this work, we’re sending a message that abortion care is health care and an essential part of physician training,” said Lisa Folberg, CEO of the California Academy of Family Physicians, which supported the bill.

The question of how to provide complete OB-GYN training promises to become more urgent as the effects of abortion bans on medical education become clear: 18 states restrict or ban abortion to the point of effectively stripping 20% of OB-GYN medical residents of the opportunity to get abortion training, according to the Ryan Residency Training Program in Abortion and Family Planning. That’s 1,354 residents this year out of 5,962 OB-GYN residents nationwide.

The restrictions in some cases aim to reach beyond state borders, spooking medical students and residents who fear hostility from anti-abortion groups and right-wing legislators.

One OB-GYN resident in a state with abortion restrictions, who asked to remain anonymous for fear of reprisals, said she’s keen on getting comprehensive abortion care training in California — but can’t.

“My program will not allow us to perform abortions in other states,” she said.

She said administrators worry that doing so would subject residents to litigation because the program is state-funded.

“That is how my program is interpreting the law,” she said. “They’re being very conservative in order to protect us.”

Pamela Merritt, executive director of Medical Students for Choice, pointed to a Kansas law that requires repayment of state medical school scholarships — with 15% interest — if residents perform abortions or work in clinics that perform them, except in cases of rape, incest, or a medical emergency.

Doctors point out that abortion training is not just about ending pregnancies. Peacock recalled a patient who started hemorrhaging badly shortly after a healthy delivery. Peacock and her team at UCSF performed a dilation and curettage — a procedure commonly used to terminate pregnancy.

“If we did not have that skill set, and the patient continued to bleed, it could have been life-taking,” said Peacock, chief OB-GYN resident at UCSF.

It’s not yet clear how many spots will be available in California to train out-of-state medical residents as demand ratchets up. “Many sites were already at their training maximums and are unable to expand opportunities to others,” said Michael Belmonte, a fellow with the American College of Obstetricians and Gynecologists.

Between June 2022, when Roe was overturned, and the end of June 2023, 125 out-of-state doctors did residencies in programs that use the Ryan Residency Training Program model, according to Kristin Simonson, director of programs and operations. Ryan helps OB-GYN residency programs integrate comprehensive abortion care training.

Even when opportunities to learn abortion care are available, those seeking training are proceeding with caution. “Residents arranging to travel for abortion training, like patients who travel for abortion care, are making arrangements quietly so they do not draw unwanted attention or repercussions,” said Janet Jacobson, medical director and senior vice president of clinical services at Planned Parenthood of Orange and San Bernardino Counties, which just trained its first resident from a state with an abortion ban.

Statistics on harassment and attacks against abortion providers or disruption of their work back up such concerns, even in states where abortions are allowed. From 2021 to 2022, for example, there were upticks in stalking of personnel, bomb threats, assault and battery, and obstruction, according to the latest data from the National Abortion Federation.

Jessica Mecklosky, a pediatric resident at UCSF, said she hopes to focus on adolescent medicine, including reproductive health, where she can offer young patients choices about their futures. Her medical school experience in Louisiana, she said, is a prime example of why abortion training in California and other states is so crucial.

She initially wanted to specialize in obstetrics and gynecology but switched to pediatrics, which also would involve reproductive health care. Although she knew Louisiana had abortion restrictions, she didn’t realize how much those restrictions would interfere with her ability to learn: There were just three abortion clinics in the entire state, and as she soon found out, none were available for her training.

“I was actually not going to be able to see any elective abortion procedures throughout medical school, because we don’t rotate through any abortion clinics,” she said. There was an opportunity for a day’s training in her third year, “but, unfortunately, Roe fell before I was able to do that.”

Through Medical Students for Choice, a group that provides stipends of up to $1,200, Mecklosky got an abortion care rotation at Montefiore Medical Center in New York during her summer break.

Mecklosky is torn about where she’ll land after her residency. She may return to Louisiana and advocate for legislative changes in reproductive health while attending to patients and making forays to other states to provide abortions.

She recounts an experience in New Orleans when the Dobbs v. Jackson Women’s Health Organization decision, which undid Roe, was imminent that is etched into her memory. “I had actually seen a few patients who were minors, were pregnant, and wanted to terminate their pregnancies,” she said, noting that they could not afford to travel for an abortion. “And I just remember having this sense of dread, just knowing that if we couldn’t get them into an appointment in the next 24 or 48 hours, it was possible that they would not be able to do it.”

Peacock, for her part, is adamant about returning to Georgia, where abortions are banned after six weeks. “I’m still going to provide abortions, whether that’s in Georgia or I need to fly to a different state and work in abortion clinics for a week out of the month,” she said. “It would definitely be a big part of my work.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

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They all have something in common, aside from a nightmare diagnosis. Their insurance companies, at some point, denied doctor-recommended care through a process called prior authorization — a set of rules, unique to every health insurance plan, requiring preapproval for some tests, procedures and prescriptions. Sometimes it’s called preauthorization; sometimes precertification. Regardless, prior authorization is almost universally despised by doctors and patients. 

In 2021, Medicare Advantage insurers processed an average of 1.5 prior authorization requests for every enrolled patient.

Legislation to regulate prior authorization for Advantage patients has strong support from lawmakers, but a bill hasn’t yet passed Congress. The Centers for Medicare & Medicaid Services is weighing a proposed rule that could help millions more — including anyone enrolled in Medicare Advantage, Medicaid or an Obamacare marketplace policy. 

The CMS rule, if implemented, would require some insurers to automate their prior authorization processes, respond to expedited prior authorization requests within 72 hours and standard requests within seven calendar days, and provide more information when they issue denials. 

But CMS closed the public comment period on the rule 10 months ago and has said nothing since then about when, or if, it will be finalized. “There are no updates at this time,” a CMS spokesperson told me last Friday.

The American Hospital Association issued a statement in October urging CMS to act quickly. Jesse Ehrenfeld, president of the American Medical Association, told KFF Health News on Monday that he hopes the proposed rule, if finalized, would “move the needle a little bit” — but he said it won’t be enough. 

“I think we’re going to have to have regulatory relief from Congress,” said Ehrenfeld, an anesthesiologist. “Unfortunately, I hear from colleagues every week who are just at their wits’ end and it’s frustrating. I see it with my own parents.”

Insurers, he said, “continue to just harass patients, really, to improve their bottom line.” 

David Allen, a spokesperson for AHIP, the insurance industry’s main lobbying group, argued health insurers use prior authorization selectively to ensure “the right care is delivered at the right time in the right setting— and covered at a cost that patients can afford. That’s what prior authorization helps deliver.”

He added: “We make every effort to ease the burden on patients and providers.”

Meanwhile, patients across the country are stuck navigating a system rife with roadblocks, red tape and appeals.

“For them to take weeks — up to months — to provide an authorization is ridiculous,” said Marine Corps veteran Ron Winters, who blames the Department of Veterans Affairs for delaying his cancer treatment. “It doesn’t matter if it’s cancer or not.”

The proposed federal reforms wouldn’t apply to veterans such as Winters who receive their care through Veterans Affairs or the estimated 153 million Americans covered by private, employer-sponsored plans. 

Even so, in anticipation of new regulations, many insurers already have started updating prior authorization processes for their private plans.

“It’s not clear to me that CMS is ‘leading’ the way here, so to speak,” Robert Hartwig, director of the Center for Risk and Uncertainty Management at the Darla Moore School of Business at the University of South Carolina, said in an email. “I do think, however, that CMS sees that widespread adoption of electronic PA processes are on the near-horizon and is willing to use its heft as a major payer to expedite the transition.”

This article is not available for syndication due to republishing restrictions. If you have questions about the availability of this or other content for republication, please contact NewsWeb@kff.org.

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The added services would provide care to patients who live in largely rural eastern Iowa, including some of the hundreds previously treated at a University of Iowa clinic, saving them half-day drives to clinics in larger cities like Chicago and Minneapolis.

By June, The Project of the Quad Cities, as the Illinois clinic is called, had hired a provider who specializes in transgender health care. So, Andy Rowe, The Project’s health care operations director, called the clinic’s insurance broker to see about getting the new provider added to the nonprofit’s malpractice policy.

“I didn’t anticipate that it was going to be a big deal,” Rowe said. Then the insurance carriers’ quotes came. The first one specifically excluded gender-affirming care for minors. The next response was the same. And the one after that. By early November, more than a dozen malpractice insurers had declined to offer the clinic a policy.

Rowe didn’t know it at the time, but he wasn’t alone in his frustrating quest.

Nearly half the states have banned medication or surgical treatment for transgender youth. Independent clinics and medical practices located in states where such care is either allowed or protected have moved to fill that void for patients commuting or relocating across state lines. But as the risk of litigation rises for clinics, obtaining malpractice insurance on the commercial marketplace has become a quiet barrier to offering care, even in states with legal protections for health care for trans people. In extreme cases, lawmakers have deployed malpractice insurance regulations against gender-affirming care in states where courts have slowed or blocked anti-trans legislation.

Five months after starting his search for malpractice insurance, Rowe said, he received a quote for a policy that would allow The Project to treat trans youth. That’s when he realized finding a policy was only the first hurdle. He expected the coverage to cost $8,000 to $10,000 a year, but he was quoted $50,000.

Rowe said he hadn’t experienced anything like it in his 20 years working in health care administration.

Insurance industry advocates argue that higher premiums are justified because the rise in legislation surrounding gender-affirming care for minors means clinics are at increased risk of being sued.

“If state laws increase the risk of civil liability for health professionals, premiums will be adjusted accordingly and appropriately to reflect the level of financial risk incurred by the insured,” Mike Stinson, vice president of public policy and legal affairs at the Medical Professional Liability Association, an insurance trade association, said in an emailed statement. If state laws make an activity illegal, then insurance will not cover it at all, he said.

Only a few states have passed laws preventing malpractice insurers from treating gender-affirming care differently than other care. Massachusetts was the first, when lawmakers there passed legislation that says insurers could not increase rates for health care providers for offering services that are illegal in other states.

Since then, five other states have passed laws requiring malpractice insurers to treat gender-affirming health care as they do any other legally protected health activity: Colorado, Vermont, New York, Oregon, and California (similar legislation is pending in Hawaii).

“This was a preventative measure, and it was met with full acceptance by both the insured and the insurers,” said Vermont state Sen. Virginia “Ginny” Lyons, a Democrat who co-sponsored the state’s law. She said lawmakers consulted with both physicians and malpractice insurance companies to make sure the language was accurate. Insurers just wanted to be able to clearly assess the risk, she said.

Lyons said she hadn’t heard of any providers in Vermont who had trouble with their malpractice insurance before the law was enacted, but she was concerned politics might get in the way of doctors’ ability to offer care. In March 2022, The Texas Tribune reported that one Texas doctor had stopped offering care because his malpractice provider had stopped covering hormone therapy for minors.

Lawmakers in some states have gone further and revised malpractice provisions to restrict access to gender-affirming care, often while bans on offering that care to trans youth are stalled in court. In 2021, Arkansas became the first state to ban gender-affirming care for trans children. When that ban was held up in court last year, the governor signed a new law allowing anyone who received gender-affirming care as a minor to file a malpractice lawsuit up to 15 years after they turn 18.

Similar laws followed in Tennessee, Florida, and Missouri, all extending the statute of limitations on filing a malpractice claim anywhere from 15 to 30 years. (Another was introduced but not passed in Texas that would have stretched the statute of limitations to the length of the patient’s life.) Typically, malpractice suits must be filed within one to three years of injury.

The civil liability that those laws created has forced at least one clinic to stop offering some treatments. The Washington University Transgender Center in Missouri said the law subjected the clinic to “unacceptable level of liability.”

Alejandra Caraballo, a civil rights attorney and clinical instructor at the Harvard Law School Cyberlaw Clinic, said there has been “a concerted effort on the part of anti-trans activists to utilize malpractice insurance as a means of eliminating care.”

She likens the strategy to laws that have long targeted abortion providers by increasing “legal liability to chill a certain type of conduct.”

Anti-trans activists have drawn attention to a small number of “detransitioners,” who have filed lawsuits against the doctors who provided them with gender-affirming care, she said. She believes those lawsuits, filed in such states as California, Nebraska, and North Carolina, will be used to lobby for longer statutes of limitations and to create the perception that liability for providers is increasing.

For independent clinics, like The Project in the Quad Cities, and small medical practices that purchase their malpractice insurance on the commercial marketplace, those tactics are restricting their ability to offer care. Many providers of gender-affirming care are protected from rising premiums such as health centers that receive federal funding, which are covered under the Federal Tort Claims Act, or academic medical centers and Planned Parenthood clinics, which are self-insured. But a small number of independent clinics have been priced out.

In Albuquerque, New Mexico, a state that, like Illinois, has protected access to gender-affirming care, family medicine physician Anjali Taneja said the clinic where she works is running into the same trouble getting coverage.

Casa de Salud, where Taneja is the executive director, has provided gender-affirming care to adults for years, but when the clinic decided to start offering that care to younger patients, insurers wouldn’t issue a malpractice policy. The clinic was quoted “double what we paid a few years ago,” just to cover the gender-affirming care it offers to adults, Taneja said.

The red tape both Casa de Salud and The Project are encountering has prevented treatment for patients. When Iowa’s ban on gender-affirming care took effect Sept. 1, officials at The Project had hoped to offer services to the transgender youth who previously sought care an hour west at the University of Iowa’s LGBTQ Clinic. Instead, Rowe said, patients are making the difficult decision between going without treatment or commuting four hours to Chicago or Minneapolis.

After months of fundraising, The Project has almost enough money to pay for the $50,000 malpractice policy. But, Rowe said, “it’s a tough swallow.”

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Deroze, a 31-year-old English professor at the time, was confused about which images were meant to depict her. Initially, she was diagnosed with Type 2 diabetes, as shown on the pamphlet with older adults. It would be eight years before she learned she had a different form of diabetes — one that didn’t fit neatly on either pamphlet.

The condition is often called latent autoimmune diabetes of adults, or LADA for short. Patients with it can be misdiagnosed with Type 2 diabetes and spend months or years trying to manage the wrong condition. As many as 10% of patients diagnosed with Type 2 diabetes might actually have LADA, said Jason Gaglia, an endocrinologist at the Joslin Diabetes Center in Boston.

Deroze and three other LADA patients who spoke with KFF Health News, all Black women, are among those who were initially misdiagnosed. Without the correct diagnosis — which can be confirmed through blood tests — they described being denied the medicines, technology, and tests to properly treat their diabetes. Three of them wonder if their race played a role.

“That does seem to happen more frequently for African American patients and for other minoritized groups,” said Rochelle Naylor, a pediatric endocrinologist at the University of Chicago who researches atypical forms of diabetes. “Doctors, like any other person walking this planet, we all have implicit biases that impact our patient experiences and our patient care delivery.”

Black patients have long struggled with bias across the U.S. health care system. In a recent KFF survey, for example, 55% of Black adults said they believed they needed to be careful at least some of the time about their appearances to be treated fairly during medical visits. Hospital software used to treat patients has been investigated for discrimination. Even a common test used to manage diabetes can underestimate blood sugar levels for patients who have sickle cell trait, which is present in nearly 1 in 10 African Americans.

LADA ostensibly has nothing to do with race, but misconceptions about race, weight, and age can all lead doctors to misdiagnose LADA patients with Type 2 diabetes, said Kathleen Wyne, an endocrinologist who leads the adult Type 1 diabetes program at Ohio State University.

Type 2 diabetes develops in people, often over age 45, whose bodies cannot properly regulate their blood sugar levels. Type 2 accounts for at least 90% of diabetes cases in the U.S. and has a high prevalence among African Americans, Native Americans, and Hispanic populations. It can often be managed with lifestyle changes and oral medications.

LADA is more akin to, or even thought to be another form of, Type 1 diabetes, an autoimmune condition once dubbed “juvenile diabetes” because it was most often diagnosed in children. Type 1 occurs when the body attacks its cells that produce insulin — the naturally occurring hormone that regulates blood sugar by helping turn food into energy. Without insulin, humans can’t survive.

LADA is difficult to diagnose because it progresses slowly, Gaglia said. Typical LADA patients are over 30 and don’t require injectable insulin for at least six months after diagnosis. But, like Type 1 patients, most will eventually depend on injections of pharmaceutical insulin for the rest of their lives. That delay can lead physicians to believe their patients have Type 2 diabetes even as treatment becomes less effective.

“If you have someone who comes into your office who is obese and/or overweight and may have a family history of Type 2 diabetes — if you’re a betting person, you bet on them having Type 2 diabetes,” Gaglia said. “But that’s the thing with LADA: It unmasks itself over time.”

Mila Clarke, who lives in Houston, finally saw an endocrinologist in November 2020, more than four years after being diagnosed with Type 2 diabetes. During that visit, she recounted her struggles to manage her blood sugar despite taking oral medications and making significant changes to her diet and exercise regimens.

“‘What you just explained to me, I believe, is a classic case of LADA,’” Clarke recalled being told. “‘Has anybody ever tested you for Type 1 antibodies?’”

Because both Type 1 diabetes and LADA are autoimmune conditions, patients will have antibodies that Type 2 patients typically don’t. But, as Clarke recounted, getting tested for those various antibodies isn’t always easy.

Clarke, now 34, had leaned into her Type 2 diagnosis when she received it in 2016 at age 26. She started a blog with nutrition and lifestyle tips for people with diabetes called “Hangry Woman,” and garnered tens of thousands of followers on Instagram. Clarke said she wanted to fight the stigma around Type 2 diabetes, which stereotypes often associate with being overweight.

“Some of the harshest comments that I had gotten were from people with Type 1 who were like, ‘We’re not the same. I didn’t cause this. I didn’t do this to myself,’” Clarke said. “Well, neither did I.”

Clarke also felt her initial doctor thought she just wasn’t working hard enough.

When she learned about continuous glucose monitors, wearable electronic devices that allow patients to track their blood sugar around the clock, she asked her primary care doctor to prescribe one. The monitors are recommended for patients with Type 1 and, more recently, some with Type 2. “He flat-out told me, ‘No. It’s going to be too much information, too much data for you,’” she recalled.

Clarke switched to a different primary care doctor who she felt listened better and who prescribed a continuous glucose monitor. (Clarke later became a paid ambassador for the company that manufactures her device.) The new doctor eventually referred Clarke to the endocrinologist who asked if she’d been tested for antibodies. The test came back positive. Clarke had LADA.

“In the health care system, it’s really hard to vocalize your needs when you are a woman of color because you come off as aggressive, or you come off as a know-it-all, or you come off as disrespectful,” Clarke said. “My intuition was right this whole time, but nobody believed me.”

Immediately, Clarke noticed an “eye-opening” difference in how she was treated. She started insulin injections and was referred to a dietitian and a diabetes educator. She wondered: Why wasn’t it easier to get tested for antibodies?

Those tests are imperfect and can have false positives, said Gaglia of the Joslin center. Still, Ohio State’s Wyne argued that every diabetes patient should be tested for at least the most common antibody associated with Type 1.

“Aren’t you saving lives if you’re identifying the Type 1 before they come in with DKA and die?” Wyne asked, referring to diabetic ketoacidosis, a serious complication of diabetes most commonly associated with Type 1.

Deroze started asking her doctor for antibodies tests in 2017 after reading about a Type 2 blogger’s experience being newly diagnosed with LADA.

Her endocrinologist denied her requests. She thinks the doctor thought it was impossible for her to have an autoimmune form of diabetes because of her race and weight. She sought a second opinion from a different endocrinologist, who also refused to test her.

“I just felt unseen,” Deroze said.

After a bout with diabetic ketoacidosis in 2019, Deroze finally persuaded her gynecologist to test her for antibodies. The results came back positive. One of the endocrinologists apologetically prescribed insulin and, later, an insulin pump, another ubiquitous piece of technology for people with Type 1.

And for the first time, she encountered the words “diabetes is not your fault” while reading about Type 1 diabetes. It felt like society was caring for her in a way it hadn’t when she was misdiagnosed with Type 2. That’s troubling, she said, and so is how long it took to get what she needed.

“My PhD didn’t save me,” said Deroze, who now lives in the Miami area. “You just see the color of my skin, the size of my body, and it negates all of that.”

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That’s because, after KFF Health News sent questions to Nix’s insurance company, Blue Cross Blue Shield of Illinois, it retroactively approved $36,000 worth of treatments she thought she owed. Even better, she also learned she would qualify for the infusions moving forward.

Good news all around — except it didn’t last for long. After all, this is the U.S. health care system, where even patients with good insurance aren’t guaranteed affordable care.

To recap: For more than a decade, Nix, of Statesville, North Carolina, has suffered from autoimmune diseases, chronic pain, and fatigue, as well as a condition called trigeminal neuralgia, which is marked by bouts of electric shock-like pain that’s so intense it’s commonly known as the “suicide disease.”

“It is a pain that sends me to my knees,” Nix said in October. “My entire family’s life is controlled by the betrayal of my body. We haven’t lived normally in 10 years.”

Late in 2022, Nix started receiving intravenous immunoglobulin infusions to treat her diseases. She started walking two miles a day with her service dog. She could picture herself celebrating, free from pain, at her daughter’s summer 2024 wedding.

“I was so hopeful,” she said.

But a few months after starting those infusions, she found out that her insurance company wouldn’t cover their cost anymore. That’s when she started “raising Cain about it” on Instagram and Facebook.

You probably know someone like Sally Nix — someone with a chronic or life-threatening illness whose doctor says they need a drug, procedure, or scan, and whose insurance company has replied: No.

Prior authorization was conceived decades ago to rein in health care costs by eliminating duplicative and ineffective treatment. Not only does overtreatment waste billions of dollars every year, but doctors acknowledge it also potentially harms patients.

However, critics worry that prior authorization has now become a way for health insurance companies to save money, sometimes at the expense of patients’ lives. KFF Health News has heard from hundreds of people in the past year relating their prior authorization horror stories.

When we first met Nix, she was battling her insurance company to regain authorization for her infusions. She’d been forced to pause her treatments, unable to afford $13,000 out-of-pocket for each infusion.

Finally, it seemed like months of her hard work had paid off. In July, Nix was told by staff at both her doctor’s office and her hospital that Blue Cross Blue Shield of Illinois would allow her to restart treatment. Her balance was marked “paid” and disappeared from the insurer’s online portal.

But the day after the KFF Health News story was published, Nix said, she learned the message had changed. After restarting treatment, she received a letter from the insurer saying her diagnoses didn’t actually qualify her for the infusions. It felt like health insurance whiplash.

“They’re robbing me of my life,” she said. “They’re robbing me of so much, all because of profit.”

Dave Van de Walle, a spokesperson for Blue Cross Blue Shield of Illinois, said the company would not discuss individual patients’ cases.

“Prior authorization is often a requirement for certain treatments,” Van de Walle said in a written statement, “and BCBSIL administers benefits according to medical policy and the employer’s benefit.”

But Nix is a Southern woman of the “Steel Magnolia” variety. In other words, she’s not going down without a fight.

In September, she called out her insurance company’s tactics in a Change.org campaign that has garnered more than 21,000 signatures. She has also filed complaints against her insurance company with the U.S. Department of Health and Human Services, U.S. Department of Labor, Illinois Department of Insurance, and Illinois attorney general.

Even so, Nix said, she feels defeated.

Not only is she still waiting for prior authorization to restart her immunoglobulin infusions, but her insurance company recently required Nix to secure preapproval for another treatment — routine numbing injections she has received for nearly 10 years to treat the nerve pain caused by trigeminal neuralgia.

“It is reprehensible what they’re doing. But they’re not only doing it to me,” said Nix, who is now reluctantly taking prescription opioids to ease her pain. “They’re doing it to other patients. And it’s got to stop.”

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She had taken afternoon naps since she was a teenager to accommodate her “work hard, play hard” attitude, but when she was in her mid-20s the sleepiness became more severe.

Menial computer tasks put her to sleep, and a 20-minute drive across her city, St. Petersburg, Florida, brought on a drowsiness so intense that her eyelids would flutter, forcing her to pull over. She knew something was really wrong when she no longer felt safe behind the wheel.

In 2021, she received a diagnosis: narcolepsy, a rare disorder that causes excessive daytime sleepiness.

Her doctor prescribed her Adderall, the brand-name version of the amphetamine-powered medication commonly known for treating attention-deficit/hyperactivity disorder.

It worked. For the first time in years, Shand, now 28, felt energized. She was no longer struggling at work, sneaking naps, or downing coffees to trick her body into staying awake. She felt hope.

But by 2022, a national Adderall shortage meant pharmacies were no longer able to fill her prescription. Shand and countless others across the country were being turned away, left to piece together a new — and often less effective — treatment plan with doctors scrambling to meet their needs.

More than a year later, the shortage continues. In October, Democrats in the U.S. House of Representatives implored the FDA and Drug Enforcement Administration to work with drug manufacturers to ensure better supply.

“We cannot allow this to be the continuing reality for Americans,” read their letter, led by Rep. Abigail Spanberger (D-Va.).

But for now, it is.

Each month is accompanied by familiar anxieties as patients navigate a web of messy logistics and uncertainty while trying to get the medication they need to live normally.

Media coverage of the shortage — and even the House Democrats’ letter — has focused primarily on the harms to people with ADHD. But for those with sleep disorders, like Shand, the effects may be even more consequential.

Basic tasks — like driving — become dangerous or impossible without medication. Job and school performances are threatened by the onset of sudden sleep and sometimes even paralysis. Hobbies and social lives can fall by the wayside, too.

“Adderall gave me my life back,” said Shand. “Going from having a medication to not, it’s like a roller coaster you desperately want to get off.”

The resulting challenges, she said, have made particularly clear the loneliness of living with a rare and misunderstood disorder.

What Is Narcolepsy?

An estimated 1 in 2,000 people in the United States live with narcolepsy — more than 160,000 people nationwide. The disorder is part of a broader group known as hypersomnolence disorders, or conditions characterized by difficulty staying awake during the day.

There are two major types of narcolepsy.

Both types affect one’s ability to stay awake, but Type 2 is typically less severe. In addition to sleep disturbance, most people with Type 1 narcolepsy experience sudden, temporary loss of muscle control or paralysis, called cataplexy.

Cataplexy attacks are typically triggered by emotion — like laughter or surprise. For one person living with narcolepsy, an attack might look like a slack jaw or limp hand. For another, it could trigger full-body paralysis.

Causes of Type 1 narcolepsy can include autoimmune disorders and brain injuries, but the underlying issue is believed to be low levels of hypocretin, a hormone that is thought to affect REM sleep — the dream state.

“Narcolepsy is due to a faulty switch in the brain for REM sleep,” said Muhammad Ali Syed, a physician and the medical director of the University of Florida Health Sleep Center.

People with narcolepsy go into REM extremely quickly, Syed said. A person without a sleep disorder will enter REM around an hour or 90 minutes after falling asleep. But a person with narcolepsy may go into REM almost immediately and could have a fully fleshed-out dream in just minutes, Syed said.

In some circumstances, symptoms can also include sleep paralysis and hallucinations.

Increased Demand

Every week since the Adderall shortage began, Fareeha Hussaini, a sleep medicine specialist at University of South Florida Health, has had calls to her office from patients struggling to access their medication.

College students are worried about plummeting grades and final exams. Patients in their 70s, who have managed symptoms with Adderall for decades, are now forced to switch to other medications, like Ritalin.

Hussaini and her staff at USF Health have worked to help patients adjust treatment plans, but there’s no denying the added stress. Some patients worry what a new plan may mean for their quality of life as shortages continue.

Drug shortages in the U.S. aren’t new, but the past couple of years have brought an all-time high, said Michael Ganio, who directs pharmacy practice and quality for the American Society of Health-System Pharmacists, which represents pharmacists nationwide.

The Adderall shortage, Ganio said, is linked to increased demand.

The covid-19 pandemic brought on a flood of new ADHD diagnoses. Studies have found absence of routine and increased screen time may have played a role. With those diagnoses came an increase in stimulant prescriptions, Ganio said — often via telehealth.

Adderall is a Schedule II controlled substance. It’s highly regulated because of the potential for being diverted for recreational use. Prior to the pandemic, patients were required to have an in-person doctor appointment to get a prescription. But that requirement was waived during the public health emergency, and telehealth appointments were allowed. The telehealth allowance has since been extended.

“There’s a broad group of patients who never had access, or suddenly have easier access, to providers who can make that diagnosis and prescribe,” Ganio said.

Another reason for the shortage are production limitations put in place by the DEA. Each drug manufacturer is effectively given quotas of how much of the drug they can produce. But because manufacturers are shielded by trade secret protections, it can be hard to know whether the DEA quotas are too low or if the manufacturers just aren’t producing to full capacity.

In a joint letter in August, the leaders of the FDA and DEA called on manufacturers to work together to increase production and confirm they are working to produce up to their quotas.

A Logistical Nightmare

From the parking lot of a Pinellas County, Florida, Walgreens in November, Nadine Dixon, 50, waited anxiously to have her Adderall prescription filled. It was the third time she’d sat in a pharmacy parking lot that day.

For Dixon, who gets her prescription through monthly in-person visits with a neurologist, the past year has been a logistical nightmare. The effects of the shortage, she said, have been compounded by the layers of red tape around Schedule II drugs.

Unlike, say, blood pressure medication — which can be dispensed to patients in a 90-day supply — Dixon can get enough Adderall only for 30 days, and automatic refills are not allowed.

As the end of each month approaches and her pill bottle empties, her anxiety spikes.

At her doctor appointment, she picks up her prescription, commencing a cumbersome routine.

Some months, she has had to drive to upward of 10 pharmacies to find her medication. Sometimes she calls in advance to ask if they have it, but she rarely gets answers.

When she finds a pharmacy that has Adderall, a new challenge hits. Minuscule details — like a number written with numerals instead of being spelled out, or a doctor’s signature that looks slightly different than it did the month before — can result in the pharmacy turning her away. Her only option then is to drive back to the doctor’s office and ask for the paperwork to be adjusted.

Doctors can send electronic prescriptions to a pharmacy to avoid the issues with handwriting, but those pose their own complications: They can be sent to only one pharmacy at a time, and can’t be transferred.

If the receiving pharmacy is out of medication, patients have to go back to their doctor to ask that they send the prescription elsewhere. And often only the doctor — not a nurse, nor a physician assistant, nor a staff member — is allowed to address that call for help.

Luis Enrique Ortiz, a sleep medicine specialist at Johns Hopkins All Children’s Hospital, said that’s put a strain on doctors, who are juggling efforts to rewrite prescriptions, guide patients, and handle appointments and research.

The result is often a delayed response.

“It can be really nerve-wracking,” Ortiz said. “Their time is running out, and they need this medication to function normally. When they finally do get it, they don’t know what the next month will hold. They have to go through it all again.”

Dixon, who was diagnosed with narcolepsy with cataplexy in 2010, estimated she’s spent up to eight hours a month trying to get her medication since the shortages began. In three of the past six months, her prescription hasn’t been filled on time. She’s experienced delays of four or five days.

The results are terrible migraines, mood swings, muscle weakness, and — of course — sudden sleep, she said.

“It feels like you’ve been awake for four days straight and are trying to keep your eyes open,” Dixon said. “The second I sit down, I fall asleep.”

Dixon described herself as an energetic person when she’s on medication. She’s a single mom and a caregiver for an older woman, and she works an online job for extra money. She has a full social life, too.

But without medication, she said, her life comes to a standstill. She can’t go have drinks with friends. She can’t go for walks. Simple conversations about stressful topics can trigger cataplexy attacks, which cause her limbs to go numb.

“It’s really horrible,” Dixon said. “Irregularities with the medication are hard on your body.”

Almost an hour after she arrived at the pharmacy that November day, she got a phone call asking her to come in from where she’d been waiting in the parking lot. They couldn’t fill her prescription, the pharmacist told her. The prescription had an error.

They sent her away with a sticky note spelling out the necessary adjustments.

She drove back to her doctor’s office, but when she got there, she learned the doctor had left for the day.

She would have to try again the next day.

Stigma and Hope

Adderall isn’t the only treatment used for narcolepsy. Other stimulants, as well as newer drugs made specifically for treating sleep disorders, can help, but those can come with hefty price tags and insurance battles.

And when a patient finds a drug that works, any change can be scary, Shand said.

Since her diagnosis, Shand said, she’s tried at least three other treatments.

“Adderall has been the only stimulant that really keeps me awake and feeling like I can go through my entire day without having to sleep,” she said.

She’s been able to get her prescription refilled since fall began, she said, but she’s learned not to get comfortable. She never knows what the next month will hold — what stock local pharmacies will have available.

For Shand, who has narcolepsy with cataplexy, the years since her diagnosis have brought waves of frustration and grief but also a sense of loneliness.

In television and movies, narcoleptics are often the butt of a joke, she said. Most people, she’s found, don’t really know what narcolepsy is.

“It’s not actually all that funny,” Shand said. “It’s genuinely debilitating. It’s life-altering.”

This article was produced in partnership with the Tampa Bay Times.

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

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