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Abby Madore covers a lot of ground each day at work.

A staffer at a community health center in Carson City, Nevada, Madore spends her days helping low-income residents understand their health insurance options, including Medicaid. Her phone is always ringing, she said, as she fields calls from clients who dial in from the state’s remote reaches seeking help.

It’s a big job, especially this year as states work to sort through their Medicaid rolls after the end of a pandemic-era freeze that prohibited disenrollment.

A few dozen specialists work for seven navigator organizations tasked with helping Nevadans enroll in or keep their coverage. Madore said she mostly works with people who live in rural Nevada, a sprawling landmass of more than 90,000 square miles.

Katie Charleson, communications officer for Nevada’s state health marketplace, said it’s always a challenge to reach people in rural areas. Experts say this problem isn’t unique to the state and is causing concern that limited resources will throw rural Americans into jeopardy as the Medicaid unwinding continues.

KFF’s Medicaid Enrollment and Unwinding Tracker shows that 72% of people who have lost Medicaid coverage since states began the unwinding process this year were disenrolled for procedural reasons, not because officials determined they are no longer eligible for the joint state-federal health insurance program.

By late August, federal officials directed state Medicaid overseers to pause some procedural disenrollments and reinstate some recipients whose coverage was dropped.

Experts say those procedural disenrollments could disproportionately affect rural people.

A brief recently published by researchers at the Georgetown University Center for Children and Families noted that rural Medicaid recipients face additional barriers to renewing coverage, including longer distances to eligibility offices and less access to the internet.

Nationwide, Medicaid and CHIP, the Children’s Health Insurance Program, covered 47% of children and 18% of adults, respectively, in small towns and rural areas, compared with 40% of children and 15% of adults in metropolitan counties.

“As is clear from our research, rural communities rely on Medicaid to form the backbone of their health care system for children and families,” said Joan Alker, who is one of the brief’s co-authors, the executive director of the Center for Children and Families, and a research professor at Georgetown’s McCourt School of Public Policy. “So if states bungle unwinding, this is going to impact rural communities, which are already struggling to keep enough providers around and keep their hospitals.”

A lack of access to navigators in rural locales to help Medicaid enrollees keep their coverage or find other insurance if they’re no longer eligible could exacerbate the difficulties rural residents face. Navigators help consumers determine whether they’re eligible for Medicaid or CHIP, coverage for children whose families earn too much to qualify for Medicaid, and help them enroll. If their clients are not eligible for these programs, navigators help them enroll in marketplace plans.

Navigators operate separately from Nevada’s more than 200 call center staffers who help residents manage social service benefits.

Navigators are required by the federal government to provide their services at no cost to consumers and give unbiased guidance, setting them apart from insurance broker agents, who earn commissions on certain health plans. Without them, there would be no free service guiding consumers through shopping for health insurance and understanding whether their health plans cover key services, like preventive care.

Roughly 30 to 40 certified enrollment counselors like Madore work at navigator organizations helping consumers enroll in plans through Nevada Health Link, the state health marketplace, which sells Affordable Care Act plans, said Charleson. One of these groups is based in the small capital city of Carson City, 30 miles south of Reno, where fewer than 60,000 people live. The rest are in the urban centers of Reno and Las Vegas.

Availability of navigators and their outreach tactics vary from state to state.

In Montana, which is larger than Nevada but has one-third the population, six people work as navigators. They cover the entire state, reaching Medicaid beneficiaries and people seeking help with coverage by phone or in person by traveling to far-flung communities. For example, a navigator in Billings, in south-central Montana, has worked with the Crow and Northern Cheyenne Tribes, whose reservations lie relatively nearby, said Olivia Riutta, director of population health for the Montana Primary Care Association. But officials struggle to reach northeastern Montana, with its Fort Peck Reservation.

Having navigators in rural communities to help people in person is an ongoing challenge the country faces, said Alker. But the unwinding circumstances make it an especially important moment for the role navigators play in guiding people through complex insurance processes, she said.

This became clear following a recent survey regarding what consumers encounter when independently searching for health coverage on Google. “The results are really concerning,” said survey co-author JoAnn Volk, a research professor and the founder and co-director of the Georgetown University Center on Health Insurance Reforms.

The researchers found that former Medicaid enrollees looking for health plans on the private market face aggressive, misleading marketing of limited-benefit products that don’t cover important services and fail to protect consumers from high health costs.

Researchers shopped for coverage using two profiles of consumers who were losing Medicaid coverage and were eligible for a plan with no premiums or deductibles on the ACA marketplace.

The team reported, though, that none of 20 sales representatives who responded to their queries mentioned that plan, and more than half pushed the limited-benefit products. The representatives also made false and misleading statements about the plans they were touting and misrepresented the availability or affordability of the marketplace plans.

The sales reps and brokers quoted limited plans that cost $200 to $300 a month, Volk said. Such an expense could prove unaffordable for consumers who may still be low-income despite being ineligible for Medicaid.

“If they can’t get to a navigator, I would not trust that they would get to their best coverage option in the marketplace, or to the marketplace at all, frankly,” Volk said.

Making a difficult problem more challenging, the federal government does not require states to break down Medicaid disenrollment data by county, making it harder for experts and researchers to track and differentiate rural and urban concerns. The Center for Children and Families does so with data from the Census Bureau, which Alker pointed out won’t be available until next fall.

A data point that will be important to watch as states continue the redetermination process, Alker said, is call center statistics. People in rural areas rely more heavily on that method of renewing coverage.

“Call abandonment rate” is one such statistic. CMS defines it as the percentage of calls that drop from the queue in two separate measures — calls dropped up to and including 60 seconds, and calls dropped after 60 seconds. In August, the agency sent a letter to the Nevada Department of Health and Human Services about its rate: An average of 56% of calls dropped in May, the first month after Nevada’s unwinding began.

The agency “has concerns that your average call center wait time and abandonment rate are impeding equitable access to assistance and the ability for people to apply for or renew Medicaid and CHIP coverage by phone and may indicate non-compliance with federal requirements,” said Anne Marie Costello, deputy director of CMS.

In the letter, Costello also cited the 45% of Medicaid enrollees whose coverage was terminated for procedural reasons in May.

All 50 states received letters about early data, but only Idaho, South Carolina, Texas, and Utah had higher disenrollment rates than Nevada, and no state had a higher rate of call abandonment.

Officials at Nevada’s Division of Welfare and Supportive Services said its call center, staffed by 277 family service specialists, receives more than 200,000 calls a month. A spokesperson said the phone system offers self-service options whereby customers can obtain information about their Medicaid renewal date and benefit amounts by following prompts. Because those calls aren’t handled by a case manager, they are considered “abandoned,” the spokesperson said, raising the rate even though callers’ questions may have been fully addressed.

People shopping around for coverage after a lapse might go into a panic, Madore said, and the best part of her job is providing relief by helping them understand their options after disenrollment from Medicaid or CHIP.

When people find out the wide range of free services navigators like Madore offer, they’re shocked, she said.

“They’re unaware of how much support we can provide,” Madore said. “I’ve had people call me back and they say, ‘It’s my first time using insurance. Where do I go to urgent care?’”

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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Rick Jaenisch went through treatment six times before his hepatitis C was cured in 2017. Each time his doctors recommended a different combination of drugs, his insurer denied the initial request before eventually approving it. This sometimes delayed his care for months, even after he developed end-stage liver disease and was awaiting a liver transplant.

“At that point, treatment should be very easy to access,” said Jaenisch, now 37 and the director of outreach and education at Open Biopharma Research and Training Institute, a nonprofit group in Carlsbad, California. “I’m the person that treatment should be ideal for.”

But it was never easy. Jaenisch was diagnosed in 1999 at age 12, after his dad took him to a San Diego hospital because Jaenisch showed him that his urine was brown, a sign there was blood in it. Doctors determined that he likely got the disease at birth from his mom, a former dental surgical assistant who learned she had the virus only after her son’s diagnosis.

People infected with the viral disease, which is typically passed through blood contact, are often outwardly fine for years. An estimated 40% of the more than 2 million people in the U.S. who are infected don’t even know they have it, while the virus may quietly be damaging their liver, causing scarring, liver failure, or liver cancer.

With several highly effective, lower-cost treatments now on the market, one might expect that nearly everyone who knows they have hepatitis C would get cured. But a study from the Centers for Disease Control and Prevention published in June found that is far from the case. A proposal by the Biden administration to eliminate the disease in five years aims to change that.

Overall, the agency’s analysis found, during the decade after the introduction of the new antiviral treatments, only about a third of the people with an initial hepatitis C diagnosis cleared the virus, either through treatment or the virus resolving on its own. Most infected people had health insurance of some kind, whether Medicare, Medicaid, or commercial coverage. But even among commercially insured patients, who were most likely to receive treatment, only half of those age 60 or older had viral clearance by the end of the study period in 2022.

“Unlike HIV, where you have it for the rest of your life, with hepatitis C it’s a very short time frame, just eight to 12 weeks, and you’re cured,” said Carl Schmid, executive director of the HIV+Hepatitis Policy Institute. “So why aren’t we doing a better job?”

Experts point to several roadblocks that infected people encounter. When the new treatments were introduced, cost was a huge factor. Private plans and state Medicaid programs limited spending on the pricey drugs by making them tougher to get, imposing prior authorization requirements, restricting access to people whose livers were already damaged, or requiring patients to abstain from drug use to qualify, among other restrictions.

By the time Jaenisch’s case was cured at age 31, the landscape of hepatitis C treatment had changed dramatically. A groundbreaking, once-a-day pill was introduced in 2013, replacing a grueling regimen of weekly interferon injections that had uncertain success rates and punishing side effects. The first of these “direct-acting antivirals” treated the disease in eight to 12 weeks, with few side effects and cure rates exceeding 95%. As more drugs were approved, the initial eye-popping $84,000 price tag for a course of treatment has gradually dropped to about $20,000.

As drug prices have declined, and under pressure from advocates and public health experts, many states have eliminated some of those barriers that have made it difficult to get approved for treatment.

Still more barriers exist that have little to do with the price of the drug.

Ronni Marks, a former hepatitis C patient, advocates for patients who often fall through the cracks. These include rural residents and those who are uninsured, transgender people, or injection drug users. An estimated 13% of people who pass through U.S. jails and prisons each year have a chronic hepatitis C infection, but access to care there is scant.

Marks said that many disadvantaged people need help getting services. “In many cases they have no way to travel, or they’re not in a situation where they can get to testing,” she said.

Unlike the federal Ryan White HIV/AIDS Program, which for more than 30 years has provided grants to cities, states, and community-based groups to provide medication, treatment, and follow-up care for people with HIV, there’s no coordinated, comprehensive program for patients with hepatitis C.

“In a perfect world, that would have been a good model to replicate,” said Sonia Canzater, the senior project director of the infectious diseases initiative at Georgetown’s O’Neill Institute for National and Global Health Law. “That’s probably never going to happen. The closest thing we can hope for is this national plan, to systemically provide access so that people aren’t beholden to the policies in their states.”

The national plan Canzater is referring to is a $12.3 billion, five-year initiative to eliminate hepatitis C that was included in President Joe Biden’s fiscal year 2024 budget proposal. Former National Institutes of Health director Francis Collins is spearheading the initiative for the Biden administration.

The program would:

• Speed up the approval of point-of-care diagnostic tests, allowing patients to be screened and begin treatment in a single visit, rather than the current multistep process.
• Improve access to medications for vulnerable groups such as people who are uninsured, incarcerated, part of the Medicaid program, or members of American Indian and Alaska Native populations by using a subscription model. Known as the Netflix model, this approach enables the government to negotiate a set fee with drug companies that would cover treatment for all the individuals in those groups that need it.
• Build the public health infrastructure to educate, identify, and treat people who have hepatitis C, including supporting universal screening; expanded testing, provider training, and additional support for care coordination; and linking people to services.

“This is both about compassion and good financial sense,” Collins said, pointing to an analysis by Harvard researchers projecting that the program would avert 24,000 deaths and save $18.1 billion in health spending over 10 years.

Collins said legislation to implement the Biden plan, currently in draft form, was expected to be introduced now that Congress has reconvened after its summer recess. The Congressional Budget Office has not yet estimated its cost.

Until covid-19 burst on the scene in 2020, hepatitis C had the dubious distinction of killing more Americans annually — nearly 20,000 — than any other infectious disease. Advocates are pleased that the virus is finally getting the attention they believe it deserves. Still, they are not confident that Congress will support providing more than $5 billion in new funding for it. The rest would come in the form of savings from existing programs. But, they said, it’s a step in the right direction.

“I’m thrilled” that there is a federal proposal to end hepatitis C, said Lorren Sandt, executive director of the Caring Ambassadors, a nonprofit in Oregon City, Oregon, that helps people manage chronic diseases such as hepatitis C. “I’ve cried so many times in joy since that came out.”

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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LaFAYETTE, Ala. — Charity Hodge had mixed feelings when she spotted a Facebook post announcing that her longtime primary care doctor was ready to retire after decades of serving their rural community.

“I was like, ‘Oh my gosh, no!’” Hodge recalled while sitting in an exam room on a July afternoon, waiting to see the physician, Terry Vester. “Well, I’m happy for the retirement part, but that’s my favorite doctor, so I’m crying on the inside.”

Hodge, a 29-year-old customer service representative, has been seeing Vester for nine years. She had come to check in on her diabetes management and to ask for anti-nausea medication in preparation for a cruise.

LaFayette — pronounced “luh-FAY-it” by most residents — and surrounding Chambers County face high rates of disease and chronic illness. Yet Terry Vester and her husband, Al, are the only primary care doctors in the town of 2,700 residents, surrounded by farms and other small communities.

The Vesters are in their late 60s and would like to retire soon. Terry Vester wants to spend more time with her grandson and aging parents. But she can’t imagine abandoning her patients, some of whom she has cared for since they were born.

“There are people here that still need in-town doctors,” said Vester, who sometimes visits patients in their homes. “So we want to stay here to take care of them until someone else is here to take care of them.”

Terry Vester’s worry — leaving her town with no doctors — is already reality across much of rural America, where many residents have health problems but few health care professionals to turn to.

LaFayette, in east-central Alabama near the border with Georgia, is a 30-minute drive to the nearest sizable city, the college town of Auburn. Its lush, wooded neighborhoods include elegant, restored homes with wraparound porches and massive lawns. But the town also has formerly grand houses that have fallen into disrepair, plus mobile homes and public housing.

The town’s median household income is much lower than the state’s and country’s. Black residents — who make up 70% of the population — are much more likely to live in poverty than white residents. They are also more likely to attend the public high school, whose student body is 90% Black and which is scheduled to close and consolidate with a majority-white school in another community.

The Vesters have worked in LaFayette since the early 1980s and saw the local hospital close in 1988. The nearest emergency room is now in another town 20 minutes away along a rolling road. So are the nearest urgent care clinic and pediatrician’s office.

To fill that void, residents turn to the one place in LaFayette where medical professionals are always on the clock: the city fire department, staffed with full-time firefighters and emergency medics.

Fire Chief Jim Doody worked for 13 years as the fire chief at Bagram Airfield in Afghanistan. He arrived in LaFayette in 2020, just as the county was about to be hit by one of the worst covid-19 outbreaks in Alabama.

Doody said most of the station’s ambulance runs are for nonemergency situations. Other calls involve urgent issues that could have been headed off if patients had better access to preventive care.

People from LaFayette regularly walk or drive themselves to the fire station to ask for help, Doody said. The station has a makeshift exam area within its small entryway, containing a bench, defibrillator machine, and cabinet filled with medical supplies.

Firefighter Tanner Hill said people often arrive with concerns about fatigue, blood sugar levels, breathing difficulties, or heart trouble. He recalled helping a man who walked into the station after getting hit by a car.

“He was just like, ‘Hey, I just got run over.’ And I was like, ‘Oh, OK, well, let me check you out.’ And sure enough, he got run over,” Hill said.

Hill determined the man’s leg was broken and sent him by ambulance to the nearest hospital.

This de facto walk-in clinic option isn’t available in most other rural areas, where emergency medical services are often run by volunteers who aren’t posted at a station all day, Doody said. But he’s noticed fewer LaFayette residents relying on the fire department since a new telehealth service arrived in town.

Rickey Whitlow was recently driving in LaFayette when he saw a sign touting the new option.

The 61-year-old was intrigued. He parked his car and walked into a new health center that also houses an OnMed Care Station, a large booth stocked with a video screen and high-tech health monitoring equipment.

Whitlow was scheduled for his monthly diabetes checkup with physician Al Vester in a few weeks. But his feet felt like they were burning, and he needed relief now.

Whitlow stepped into the telehealth kiosk, pressed a button, and saw a nurse practitioner appear on a large vertical video screen positioned at eye level. After consulting with the provider, he left the free appointment with a prescription for a cream to relieve his foot pain.

OnMed patients use an automated blood pressure cuff and other devices to collect their vital signs, and the data is sent to the provider treating them from a distance. Patients can also hold a stethoscope to their chest to transmit the sounds of their heart and lungs. A special camera captures internal temperatures, which can be used to diagnose infections. A hand-held camera lets providers examine problems such as rashes, irritated eyes, and swollen throats. In some states, the stations can dispense medications.

OnMed, a Florida-based company, has another kiosk in rural Texas and hopes to open several dozen more in various states next year. The company wants to keep its services free for patients, with funding from universities, health systems, nonprofits, and insurance companies.

The kiosks can stay open on evenings and weekends and are much cheaper to operate than brick-and-mortar doctor’s offices, said CEO Tom Vanderheyden. They also make telehealth available to rural residents whose home internet connections are too weak for video appointments.

LaFayette’s OnMed kiosk is part of a new health center inside a building that has seen several medical facilities come and go.

The Chambers County Community Health and Wellness Center is operated by Auburn University, whose students and faculty travel there to host vaccination and diagnostic clinics, such as speech and hearing exams. They also offer health education events on topics such as healthy eating and maternal health.

The university plans to bring similar centers and OnMed kiosks to other rural Alabama towns.

Vester, the longtime primary care physician, is excited about the new health care resources in LaFayette. But she said it’s still important to have doctors in town.

“You know everyone, or you have a connection with someone,” Vester said.

Vester’s statement rang true during recent appointments as she asked about her patients’ lives and relatives.

“Deep breath,” Vester instructed as she placed a stethoscope on Hodge’s chest.  “Are you still at home with your mother? Is she doing good?”

“Yes, she’s doing very well,” Hodge said.

Earlier that day, Vester treated a patient who had throat pain and difficultly speaking after surviving a choking incident. During the appointment, the patient mentioned an upcoming funeral.

Vester knew about the funeral. It was for a woman she once treated.

“I see her daughters and then their children, and they have children — so that’s four generations right there,” Vester said. “And so, you sort of know the whole story, you know the context.”

Vester plans to reach out to Alabama medical schools to let them know she’s looking for doctors to take over for her and her husband. But she said not everyone wants to live in rural areas like LaFayette.

The doctor hopes some of the Auburn students will want to serve in LaFayette after seeing what it’s like working at the new health center. She said it’s nice to live in a small, quiet town that’s relatively close to larger cities, and to run an independent clinic rather than work for a larger health system.

Vester said the charm of LaFayette and its residents is also a selling point.

“All they have to do is pretty much come here and spend a day and go through what we do, and I think they would enjoy it,” she said.

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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Tennessee last year spent $48 million on a single drug, Humira — about $62,000 for each of the 775 patients who were covered by its employee health insurance program and receiving the treatment. So when nine Humira knockoffs, known as biosimilars, hit the market for as little as $995 a month, the opportunity for savings appeared ample and immediate.

But it isn’t here yet. Makers of biosimilars must still work within a health care system in which basic economics rarely seems to hold sway.

For real competition to take hold, the big pharmacy benefit managers, or PBMs, the companies that negotiate prices and set the prescription drug menu for 80% of insured patients in the United States, would have to position the new drugs favorably in health plans.

They haven’t, though the logic for doing so seems plain.

Humira has enjoyed high-priced U.S. exclusivity for 20 years. Its challengers could save the health care system $9 billion and herald savings from the whole class of drugs called biosimilars — a windfall akin to the hundreds of billions saved each year through the purchase of generic drugs.

The biosimilars work the same way as Humira, an injectable treatment for rheumatoid arthritis and other autoimmune diseases. And countries such as the United Kingdom, Denmark, and Poland have moved more than 90% of their Humira patients to the rival drugs since they launched in Europe in 2018. Kaiser Permanente, which oversees medical care for 12 million people in eight U.S. states, switched most of its patients to a biosimilar in February and expects to save $300 million this year alone.

Biologics — both the brand-name drugs and their imitators, or biosimilars — are made with living cells, such as yeast or bacteria. With dozens of biologics nearing the end of their patent protection in the next two decades, biosimilars could generate much higher savings than generics, said Paul Holmes, a partner at Williams Barber Morel who works with self-insured health plans. That’s because biologics are much more expensive than pills and other formulations made through simpler chemical processes.

For example, after the first generics for the blockbuster anti-reflux drug Nexium hit the market in 2015, they cost around $10 a month, compared with Nexium’s $100 price tag. Coherus BioSciences launched its Humira biosimilar, Yusimry, in July at $995 per two-syringe carton, compared with Humira’s $6,600 list price for a nearly identical product.

“The percentage savings might be similar, but the total dollar savings are much bigger,” Holmes said, “as long as the plan sponsors, the employers, realize the opportunity.”

That’s a big if.

While a manufacturer may need to spend a few million dollars to get a generic pill ready to market, makers of biosimilars say their development can require up to eight years and $200 million. The business won’t work unless they gain significant market share, they say.

The biggest hitch seems to be the PBMs. Express Scripts and Optum Rx, two of the three giant PBMs, have put biosimilars on their formularies, but at the same price as Humira. That gives doctors and patients little incentive to switch. So Humira remains dominant for now.

“We’re not seeing a lot of takeup of the biosimilar,” said Keith Athow, pharmacy director for Tennessee’s group insurance program, which covers 292,000 state and local employees and their dependents.

The ongoing saga of Humira — its peculiar appeal to drug middlemen and insurers, the patients who’ve benefited, the patients who’ve suffered as its list price jumped sixfold since 2003 — exemplifies the convoluted U.S. health care system, whose prescription drug coverage can be spotty and expenditures far more unequal than in other advanced economies.

Biologics like Humira occupy a growing share of U.S. health care spending, with their costs increasing 12.5% annually over the past five years. The drugs are increasingly important in treating cancers and autoimmune diseases, such as rheumatoid arthritis and inflammatory bowel disease, that afflict about 1 in 10 Americans.

Humira’s $200 billion in global sales make it the best-selling drug in history. Its manufacturer, AbbVie, has aggressively defended the drug, filing more than 240 patents and deploying legal threats and tweaks to the product to keep patent protections and competitors at bay.

The company’s fight for Humira didn’t stop when the biosimilars finally appeared. The drugmaker has told investors it doesn’t expect to lose much market share through 2024. “We are competing very effectively with the various biosimilar offerings,” AbbVie CEO Richard Gonzalez said during an earnings call.

How AbbVie Maintains Market Share

One of AbbVie’s strategies was to warn health plans that if they recommended biosimilars over Humira they would lose rebates on purchases of Skyrizi and Rinvoq, two drugs with no generic imitators that are each listed at about $120,000 a year, according to PBM officials. In other words, dropping one AbbVie drug would lead to higher costs for others.

Industry sources also say the PBMs persuaded AbbVie to increase its Humira rebates — the end-of-the-year payments, based on total use of the drug, which are mostly passed along by the PBMs to the health plan sponsors. Although rebate numbers are kept secret and vary widely, some reportedly jumped this year by 40% to 60% of the drug’s list price.

The leading PBMs — Express Scripts, Optum, and CVS Caremark — are powerful players, each part of a giant health conglomerate that includes a leading insurer, specialty pharmacies, doctors’ offices, and other businesses, some of them based overseas for tax advantages.

Yet challenges to PBM practices are mounting. The Federal Trade Commission began a major probe of the companies last year. Kroger canceled its pharmacy contract with Express Scripts last fall, saying it had no bargaining power in the arrangement, and, on Aug. 17, the insurer Blue Shield of California announced it was severing most of its business with CVS Caremark for similar reasons.

Critics of the top PBMs see the Humira biosimilars as a potential turning point for the secretive business processes that have contributed to stunningly high drug prices.

Although list prices for Humira are many times higher than those of the new biosimilars, discounts and rebates offered by AbbVie make its drug more competitive. But even if health plans were paying only, say, half of the net amount they pay for Humira now — and if several biosimilar makers charged as little as a sixth of the gross price — the costs could fall by around $30,000 a year per patient, said Greg Baker, CEO of AffirmedRx, a smaller PBM that is challenging the big companies.

Multiplied by the 313,000 patients currently prescribed Humira, that comes to about $9 billion in annual savings — a not inconsequential 1.4% of total national spending on pharmaceuticals in 2022.

The launch of the biosimilar Yusimry, which is being sold through Mark Cuban’s Cost Plus Drugs pharmacy and elsewhere, “should send off alarms to the employers,” said Juliana Reed, executive director of the Biosimilars Forum, an industry group. “They are going to ask, ‘Time out, why are you charging me 85% more, Mr. PBM, than what Mark Cuban is offering? What is going on in this system?’”

Cheaper drugs could make it easier for patients to pay for their drugs and presumably make them healthier. A KFF survey in 2022 found that nearly a fifth of adults reported not filling a prescription because of the cost. Reports of Humira patients quitting the drug for its cost are rife.

Convenience, Inertia, and Fear

When Sue Lee of suburban Louisville, Kentucky, retired as an insurance claims reviewer and went on Medicare in 2017, she learned that her monthly copay for Humira, which she took to treat painful plaque psoriasis, was rising from $60 to $8,000 a year.

It was a particularly bitter experience for Lee, now 81, because AbbVie had paid her for the previous three years to proselytize for the drug by chatting up dermatology nurses at fancy AbbVie-sponsored dinners. Casting about for a way to stay on the drug, Lee asked the company for help, but her income at the time was too high to qualify her for its assistance program.

“They were done with me,” she said. Lee went off the drug, and within a few weeks the psoriasis came back with a vengeance. Sores covered her calves, torso, and even the tips of her ears. Months later she got relief by entering a clinical trial for another drug.

Health plans are motivated to keep Humira as a preferred choice out of convenience, inertia, and fear. While such data is secret, one Midwestern firm with 2,500 employees told KFF Health News that AbbVie had effectively lowered Humira’s net cost to the company by 40% after July 1, the day most of the biosimilars launched.

One of the top three PBMs, CVS Caremark, announced in August that it was creating a partnership with drugmaker Sandoz to market its own cut-rate version of Humira, called Hyrimoz, in 2024. But Caremark didn’t appear to be fully embracing even its own biosimilar. Officials from the PBM notified customers that Hyrimoz will be on the same tier as Humira to “maximize rebates” from AbbVie, Tennessee’s Athow said.

Most of the rebates are passed along to health plans, the PBMs say. But if the state of Tennessee received a check for, say, $20 million at the end of last year, it was merely getting back some of the $48 million it already spent.

“It’s a devil’s bargain,” said Michael Thompson, president and CEO of the National Alliance of Healthcare Purchaser Coalitions. “The happiest day of a benefit executive’s year is walking into the CFO’s office with a several-million-dollar check and saying, ‘Look what I got you!’”

Executives from the leading PBMs have said their clients prefer high-priced, high-rebate drugs, but that’s not the whole story. Some of the fees and other payments that PBMs, distributors, consultants, and wholesalers earn are calculated based on a drug’s price, which gives them equally misplaced incentives, said Antonio Ciaccia, CEO of 46Brooklyn, a nonprofit that researches the drug supply chain.

“The large intermediaries are wedded to inflated sticker prices,” said Ciaccia.

AbbVie has warned some PBMs that if Humira isn’t offered on the same tier as biosimilars it will stop paying rebates for the drug, according to Alex Jung, a forensic accountant who consults with the Midwest Business Group on Health.

AbbVie did not respond to requests for comment.

One of the low-cost Humira biosimilars, Organon’s Hadlima, has made it onto several formularies, the ranked lists of drugs that health plans offer patients, since launching in February, but “access alone does not guarantee success” and doesn’t mean patients will get the product, Kevin Ali, Organon’s CEO, said in an earnings call in August.

If the biosimilars are priced no lower than Humira on health plan formularies, rheumatologists will lack an incentive to prescribe them. When PBMs put drugs on the same “tier” on a formulary, the patient’s copay is generally the same.

In an emailed statement, Optum Rx said that by adding several biosimilars to its formularies at the same price as Humira, “we are fostering competition while ensuring the broadest possible choice and access for those we serve.”

Switching a patient involves administrative costs for the patient, health plan, pharmacy, and doctor, said Marcus Snow, chair of the American College of Rheumatology’s Committee on Rheumatologic Care.

Doctors’ Inertia Is Powerful

Doctors seem reluctant to move patients off Humira. After years of struggling with insurance, the biggest concern of the patient and the rheumatologist, Snow said, is “forced switching by the insurer. If the patient is doing well, any change is concerning to them.” Still, the American College of Rheumatology recently distributed a video informing patients of the availability of biosimilars, and “the data is there that there’s virtually no difference,” Snow said. “We know the cost of health care is exploding. But at the same time, my job is to make my patient better. That trumps everything.”

“All things being equal, I like to keep the patient on the same drug,” said Madelaine Feldman, a New Orleans rheumatologist.

Gastrointestinal specialists, who often prescribe Humira for inflammatory bowel disease, seem similarly conflicted. American Gastroenterological Association spokesperson Rachel Shubert said the group’s policy guidance “opposes nonmedical switching” by an insurer, unless the decision is shared by provider and patient. But Siddharth Singh, chair of the group’s clinical guidelines committee, said he would not hesitate to switch a new patient to a biosimilar, although “these decisions are largely insurance-driven.”

HealthTrust, a company that procures drugs for about 2 million people, has had only five patients switch from Humira this year, said Cora Opsahl, director of the Service Employees International Union’s 32BJ Health Fund, a New York state plan that procures drugs through HealthTrust.

But the biosimilar companies hope to slowly gain market footholds. Companies like Coherus will have a niche and “they might be on the front end of a wave,” said Ciaccia, given employers’ growing demands for change in the system.

The $2,000 out-of-pocket cap on Medicare drug spending that goes into effect in 2025 under the Inflation Reduction Act could spur more interest in biosimilars. With insurers on the hook for more of a drug’s cost, they should be looking for cheaper options.

For Kaiser Permanente, the move to biosimilars was obvious once the company determined they were safe and effective, said Mary Beth Lang, KP’s chief pharmacy officer. The first Humira biosimilar, Amjevita, was 55% cheaper than the original drug, and she indicated that KP was paying even less since more drastically discounted biosimilars launched. Switched patients pay less for their medication than before, she said, and very few have tried to get back on Humira.

Prescryptive, a small PBM that promises transparent policies, switched 100% of its patients after most of the other biosimilars entered the market July 1 “with absolutely no interruption of therapy, no complaints, and no changes,” said Rich Lieblich, the company’s vice president for clinical services and industry relations.

AbbVie declined to respond to him with a competitive price, he said.

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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As Americans consider whether to take advice from federal health officials and get an updated covid vaccine, Florida Gov. Ron DeSantis is drumming the message that ignited his national political career: Ignore what the federal government tells you about covid-19.

Last week — as polling showed him running a distant second to Donald Trump for the Republican presidential nomination — DeSantis convened a virtual roundtable featuring a panel of covid vaccine skeptics. Their mission: to swat away the FDA’s findings that the new shots are safe and effective for those 6 months and older.

Instead, they advised those younger than 65 not to get vaccinated, suggesting without evidence that the shots could be harmful.

“I will not stand by and let the FDA and CDC use healthy Floridians as guinea pigs for new booster shots that have not been proven to be safe or effective,” said DeSantis, contradicting the FDA’s findings. “Once again, Florida is the first state in the nation to stand up and provide guidance based on truth, not Washington edicts.”

Backing up DeSantis was the handpicked keeper of his public health strategy: his state’s surgeon general, Joseph Ladapo.

“My judgment is that it’s not a good decision for young people and for people who are not at high risk at this point in the pandemic,” Ladapo said.

Ladapo has come under fire from public health experts since DeSantis tapped him for the role. He has been rebuked by federal health officials for promoting misinformation about covid and vaccines generally. And a report by the faculty of the University of Florida’s College of Medicine expressed “concern for research integrity violations” in a state health department study that suggested receiving an mRNA vaccine against covid increased the risk of death among young men.

Ladapo personally altered the study’s findings, Politico reported. And research has shown the risk of cardiac complications among young men is up to 5.6 times as high after covid infection as after covid vaccination.

With public health officials facing an uphill battle to persuade Americans to get one of the updated vaccines — just 17% received the 2022 booster — DeSantis’ tactic could further depress uptake by stoking doubts about the vaccines.

DeSantis is “playing with fire, and this is about life and death,” said Donna Shalala, who served as U.S. Health and Human Services secretary during the Clinton administration and later represented Florida in Congress.

“But I think people will see it for what it is: a desperate attempt at very high risk to people in Florida to reposition himself,” she said.

DeSantis trails Trump by more than 40 points, on average, in polls of GOP primary voters, a gap that has widened despite the governor’s recent efforts to reboot his campaign.

More than 90,000 people in Florida have died from covid-19.

And, while there have been a few serious side effects associated with covid vaccines, their incidence is rare and several studies have shown that vaccinated people are at no greater risk of death from non-covid causes than those who are unvaccinated. More than 600 million doses of covid vaccines have been administered in the U.S., according to Our World in Data.

That information was not mentioned in the discussion last week, when the panel — which notably included no vaccine or infectious disease experts — said without evidence that the shots might have “negative efficacy” or even cause increased infection from the virus.

DeSantis and Ladapo said they were troubled by the lack of human trials before the latest covid vaccines were authorized — though they did not address why they might be less concerned about the risks for those age 65 and older.

Annual flu vaccines also do not undergo clinical testing on humans. But Ladapo called it “sleight of hand” to compare the covid boosters to the flu vaccine, because it has been around for decades. “It is a completely different phenomenon,” he said.

The Florida Health Department did not respond to questions about whether it recommends the flu vaccine in light of its dearth of human testing.

Daniel Salmon, a vaccine expert at Johns Hopkins University who watched the roundtable, said he took issue with the claim that there wasn’t clinical data supporting the new vaccines’ safe use. Like the flu vaccine, the primary covid vaccines went through clinical trials, and there wouldn’t be time to conduct one every time a new strain emerges, he said.

The discussion was not a robust debate around scientific uncertainty among experts, Salmon said. He noted the panelists’ lack of expertise and training in vaccines and infectious disease, saying they instead leaned on their positions as physicians, academics, and the Florida surgeon general to give them credibility.

“They don’t know covid,” Salmon said. “They’re cherry-picking facts to defend their position. And they don’t have the expertise to make those decisions for a large number of people.”

“It felt to me like they were trying to sow doubt,” he said, “and that’s dangerous.”

Polling by the nonprofit health organization KFF shows that most Americans encounter health misinformation, and many are uncertain about the veracity of claims about the covid vaccines.

DeSantis built his national reputation on bucking the medical establishment and ending 2020’s pandemic lockdown earlier in Florida than many other states did. He also has gained a following — and raised money — by criticizing the federal government under President Joe Biden and guidance from the nation’s former top infectious disease expert, Anthony Fauci, who left his post at the National Institutes of Health in December.

DeSantis’ handling of the covid response helped propel him to a massive reelection victory last year and to the front of the pack of 2024 Republican presidential contenders this spring.

David Richards, chair of the International Relations and Political Science Department at Lynchburg University in Virginia, said he is not surprised by DeSantis’ approach to the updated vaccines given his polling numbers, his reputation for pushing “medical freedom,” and his general vaccine policies.

“He needs to remain relevant and set himself apart from other candidates,” he said.

Last year, DeSantis opposed providing covid vaccines to young children after Florida came under fire for being the only state not to preorder doses ahead of the federal government’s approval of vaccination for children under 5.

This year, DeSantis urged Florida’s GOP-controlled legislature to approve pandemic-related legislation that runs counter to some public health recommendations, including measures to permanently ban school mask mandates and bar businesses from firing employees who don’t get vaccinated.

Matt Dallek, a political historian at George Washington University in Washington, D.C., said DeSantis’ messaging on the new covid vaccines shows his desire to distance himself from Trump — even though Trump’s 2018 endorsement led to his winning the Florida governor’s race.

“This is a way for him to exploit the issue, though it may come at the expense of lives of anyone who would listen to him in Florida and elsewhere,” he said.

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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HHS Launches Environmental Justice Community Innovator Challenge

Nurses, researchers, and workplace safety officers worry new guidelines from the Centers for Disease Control and Prevention might reduce protection against the coronavirus and other airborne pathogens in hospitals.

A CDC advisory committee has been updating its 2007 standards for infection control in hospitals this year. Many health care professionals and scientists expressed outrage after the group released a draft of its proposals in June.

The draft controversially concluded that N95 face masks are equivalent to looser, surgical face masks in certain settings — and that doctors and nurses need to wear only surgical masks when treating patients infected by “common, endemic” viruses, like those that cause the seasonal flu.

The committee was slated to vote on the changes on Aug. 22, but it postponed action until November. Once the advice is final, the CDC begins a process of turning the committee’s assessment into guidelines that hospitals throughout the United States typically follow. After the meeting, members of the public expressed concern about where the CDC was headed, especially as covid-19 cases rise. Nationwide, hospital admissions and deaths due to covid have been increasing for several consecutive weeks.

“Health care facilities are where some of the most vulnerable people in our population have to frequent or stay,” said Gwendolyn Hill, a research intern at Cedars-Sinai Medical Center in Los Angeles, after the committee’s presentation. She said N95 masks, ventilation, and air-purifying technology can lower rates of covid transmission within hospital walls and “help ensure that people are not leaving sicker than they came.”

“We are very happy to receive feedback,” Alexander Kallen, chief of the Prevention and Response Branch in the CDC’s Division of Healthcare Quality Promotion, told KFF Health News. “It is our goal to develop a guideline that is protective of patients, visitors, and health workers.” He added that the draft guidelines are far from final.

In June, members of the CDC’s group — the Healthcare Infection Control Practices Advisory Committee — presented a draft of their report, citing studies that found no difference in infection rates among health providers who wore N95 masks versus surgical masks in the clinic. They noted flaws in the data. For example, many health workers who got covid in the trials were not infected while wearing their masks at work. But still, they concluded the masks were equivalent.

Their conclusion runs contrary to the CDC’s 2022 report, which found that an N95 mask cuts the odds of testing positive for the coronavirus by 83%, compared with 66% for surgical masks and 56% for cloth masks. It also excludes a large clinical trial published in 2017 finding that N95 masks were far superior to surgical masks in protecting health workers from influenza infections. And it contradicts an extensive evaluation by the Royal Society, the United Kingdom’s national academy of sciences, finding that N95 masks, also called N95 respirators, were more effective against covid than surgical masks in health care settings around the world.

“It’s shocking to suggest that we need more studies to know whether N95 respirators are effective against an airborne pathogen,” said Kaitlin Sundling, a physician and pathologist at the University of Wisconsin-Madison, in a comment following the June meeting. “The science of N95 respirators is well established and based on physical properties, engineered filtered materials, and our scientific understanding of how airborne transmission works.”

Her assertion is backed by the California occupational safety agency, Cal/OSHA, whose rules on protecting at-risk workers from infections might be at odds with the CDC’s if the proposals are adopted. “The CDC must not undermine respiratory protection regulation by making the false and misleading claim that there is no difference in protection” between N95 masks and surgical masks, commented Deborah Gold, an industrial hygienist at Cal/OSHA, at the August meeting.

Researchers and occupational safety experts were also perplexed by how the committee categorized airborne pathogens. A surgical mask, rather than an N95, was suggested as protection for a category they created for “common, endemic” viruses that spread over short distances, and “for which individuals and communities are expected to have some immunity.” Three committee representatives, researchers Hilary Babcock, Erica Shenoy, and Sharon Wright, were among the authors of a June editorial arguing that hospitals should no longer require all health care workers, patients, and visitors to wear masks in hospitals. “The time has come to deimplement policies that are not appropriate for an endemic pathogen,” they wrote.

However, in a call with KFF Health News, Kallen clarified that the committee put coronaviruses that cause colds in that category, but not yet the coronavirus causing covid.

The committee’s next tier consisted of viruses in a “pandemic-phase,” when the pathogen is new and little immunity through infection or vaccination exists. It recommended that health workers wear an N95 mask when treating patients infected by bugs in this category. Its third, highest tier of protection was reserved for pathogens like those causing measles and tuberculosis, which, they claimed, can spread further than lower-tier threats and require an N95.

Virologists said the committee’s categories hold little water, biologically speaking. A pathogen’s mode of spreading isn’t affected by how common it is; common viruses can still harm vulnerable populations; and many viruses, including SARS-CoV-2, can travel significant distances on microscopic droplets suspended in the air.

“Large COVID outbreaks in prisons and long-term health care facilities have demonstrated that the behavior of infectious aerosols is not easily classified, and these aerosols are not easily confined,” wrote the deputy chief of health at Cal/OSHA, Eric Berg, in a letter of concern to the CDC committee, obtained by KFF Health News.

The committee pitted its assessment of N95 masks against their drawbacks. Its draft cites a study from Singapore in which nearly a third of health care personnel, mostly nurses, said wearing such masks negatively affected their work, causing acne and other problems exacerbated by hot and humid conditions and prolonged shifts. Rather than discard the masks, the authors of that study recommend better-fitting masks and rest breaks.

Noha Aboelata, a doctor and the CEO of Roots Community Health Center in Oakland, California, agrees. “There are other strategies to bring to bear, like improved mask design and better testing,” she said, “if we decide it’s unacceptable to give a patient covid when they go to the hospital.”

Aboelata is one of hundreds of doctors, researchers, and others who signed a letter to CDC Director Mandy Cohen in July, expressing concern that the CDC committee will weaken protections in hospitals. They also warned that scaling back on N95 masks could have repercussions on emergency stockpiles, rendering doctors and nurses as vulnerable as they were in 2020 when mask shortages fueled infections. More than 3,600 health workers died in the first year of the pandemic in the United States, according to a joint investigation by KFF Health News and The Guardian.

The concerned clinicians hope the committee will reconsider its report in light of additional studies and perspectives before November. Referring to the draft, Rocelyn de Leon-Minch, an industrial hygienist for National Nurses United, said, “If they end up codifying these standards of care, it will have a disastrous impact on patient safety and impact our ability to respond to future health crises.”

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Readout of HHS Deputy Secretary Palm’s Trip to San Diego during National Recovery Month

SACRAMENTO, Calif. — A sweeping agreement between labor and the health industry would gradually raise the minimum wage for hundreds of thousands of health workers in California to a nation-leading $25 an hour while ending a years-long battle over dialysis clinics.

The pact approved by state lawmakers on Thursday, the last day of this year’s legislative session, would phase in the wage increase for hospitals, nursing homes, and other medical and psychiatric services providers. The bill now heads to the governor’s desk. A spokesperson for Democratic Gov. Gavin Newsom, Izzy Gordon, said the governor will evaluate the bill on the merits before his Oct. 14 deadline to act on the legislation.

SB 525 would raise the hourly minimum at large health facilities and dialysis clinics to $23 next year, $24 in 2025, and $25 in 2026. It would boost hourly wages at community clinics to at least $21 in 2024, $22 in 2026, and $25 in 2027. Other health facilities would go to at least $21 an hour in 2024, $23 in 2026, and $25 by 2028.

The agreement “now strikes an important balance between supporting workers and protecting jobs and access to care in some of our most vulnerable communities,” Carmela Coyle, president and CEO of the California Hospital Association, said in a statement. “The bill creates a pathway to improving wages for our lower-wage health care workers, while also recognizing the needs of our state’s most troubled hospitals.”

The deal is a significant union victory during what has been dubbed a “hot labor summer,” with picket lines formed by Hollywood writers and actors, hotel workers, and Los Angeles city employees. Thousands of nurses could be next. Labor also won a $20 minimum wage for California fast-food workers, a significant boost from the current statewide $15.50 minimum wage.

Union leaders say lower-income health workers such as certified nursing assistants, patient aides, and food service workers — many of them racial minorities — need the additional money to keep up. “Health care in California will be more accessible and equitable because workers and healthcare providers stood together and stood up for patient care,” SEIU California Executive Director Tia Orr said of the health care deal.

The phase-in would be slower at hospitals with a high percentage of patients covered by Medicare or Medicaid, rural independent hospitals, and small county facilities. The minimum hourly wage there would go to $18 next year, then increase annually by 3.5% until it reaches $25 in 2033.

Subsequently, at all sites, the $25 minimum wage would be increased annually to keep up with inflation. However, the bill allows health care facilities to apply for a temporary pause or slower phase-in if they can show state officials that providing the required minimum wage “would raise doubts about the covered health care facility’s ability to continue as a going concern.”

State Sen. María Elena Durazo, the Los Angeles Democrat who introduced the bill, called her bill “a first in the nation historic investment in our healthcare workforce.” The measure “is a critical step to ensuring that we are addressing our healthcare workforce shortage,” she said before the bill received final passage late Thursday in the Senate.

As part of the deal, in a separate memorandum of understanding, Service Employees International Union-United Healthcare Workers West would drop its effort to impose regulations on dialysis clinics through legislation and at the ballot box. Voters defeated all three ballot initiatives, most recently last year, but the fight has cost the dialysis industry hundreds of millions of dollars.

California Dialysis Council spokesperson Jaycob Bytel said in a statement that the agreement “protects patients from the ongoing threats at the ballot and in the legislature.” It bars for four years any legislation or statewide or local ballot measures by either SEIU or the dialysis industry.

The union has pushed for wage boosts in several California cities. But the agreement bars local governments from requiring higher local minimum wages for health care workers for 10 years, until 2034. Local governments could set higher local minimum wages, but they must include all workers.

The original bill cleared the Senate in May with no votes to spare amid strident opposition from employers, who said they couldn’t afford it. The California Chamber of Commerce put the proposal on its annual “job killer” list, a designation that often is enough to kill controversial legislation. The No SB 525 coalition, which included hospitals, doctors, and business and taxpayer groups, had said the bill would cost $8 billion annually, endangering services and leading to higher premiums and higher costs for state and local governments.

Republicans who opposed the bill echoed those arguments while saying the increases will harm rural health facilities. “We’ll see hospitals go out of service and we will see rural health clinics for sure be severely impacted and probably go out of business,” warned state Sen. Brian Dahle, a Republican who represents rural Northern California.

The bill’s opponents also included the California Nurses Association, which said it could prompt employers to lower wages for registered nurses. The association helped scuttle a push for a $25 hourly minimum wage for health workers a year ago. That earlier effort failed in part because it was tied to a delay in earthquake-safety upgrades at hospitals.

The University of California-Berkeley Labor Center projected that the increase would boost wages for more than 469,000 health workers. The center estimates it would most benefit workers of color, who make up 70% of those workers, and women, who represent about three-quarters.

The bump would help about 40% of California’s health workers, earning them on average an extra $10,352 a year and reducing their reliance on Medi-Cal, saving between $181 million and $363 million in the second year of the wage increase, according to a legislative analysis. The analysis said opponents’ $8 billion cost estimate is overblown because it fails to include billions in state assistance to hospitals.

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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The California Legislature passed a pair of bills greenlighting Gov. Gavin Newsom’s campaign to build 10,000 new beds and housing units and increase drug addiction treatment as part of his response to the state’s homelessness and drug crises. The Democratic governor is expected to sign the bills, which received bipartisan support.

The first bill, SB 326, is designed to transform the state’s Mental Health Services Act into the Behavioral Health Services Act, using an existing tax on millionaires to treat the most seriously mentally ill and to increase programs for substance use disorders. The second, AB 531, authorizes the state to issue $6.38 billion in bonds to build more housing for homeless people and treatment beds for those with the most severe needs.

Newsom will now ask voters to approve the changes on the March primary ballot.

“This reform will bring much needed accountability currently lacking at the local and state level, increased transparency and visibility into the whole mental health and addiction treatment system, and a modernized focus to address today’s crises,” Newsom said in a statement.

According to a June statewide study on homelessness by the University of California-San Francisco, more than 171,000 Californians experience homelessness daily, representing 30% of the nation’s homeless population. The majority of participants in the study reported high lifetime rates of mental health and substance use challenges; 82% reported a period in their life in which they experienced a serious mental health condition, and nearly two-thirds reported the use of illicit drugs or heavy drinking.

The mental health act was passed as Proposition 63 by voters in 2004 and levied a tax of 1% on income above $1 million, known as the “millionaire’s tax.” That money then flowed from the state to counties for use in five mental health areas, including community support, prevention, and facilities. Funding changes year to year, but the tax generated $3.3 billion in the 2022-23 fiscal year, according to the nonpartisan Legislative Analyst’s Office.

However, the program has been criticized over the years for falling short of its initial promise. Last year, the Los Angeles Times highlighted several reasons, including revenue swings, consistent underfunding of social and mental health programs, tension between state and county officials, and a shortage of mental health clinicians.

Newsom pledged that the newly renamed Behavioral Health Services Act would build 10,000 new beds and housing units for people experiencing homelessness who have behavioral health needs. It would also focus on diversifying the workforce and improving accountability — tracking outcomes in a more detailed way — so the government can understand what’s working and what’s not.

However, counties that administer this money at the local level have raised concerns. A letter from the California State Association of Counties and other organizations representing local government interests expressed fear that Newsom’s proposal would result in counties receiving significantly less funding for core services, little protection from fluctuation in funds, and less flexibility in spending.

The governor’s office emphasized that new requirements still provide flexibility.

Assembly member Jacqui Irwin (D-Thousand Oaks), who was the lead author of the bond bill and served for seven years as the chair of the body’s Military and Veterans Affairs Committee, is particularly proud of a provision that will reserve $1.07 billion for housing for veterans. California has the largest number of veterans experiencing homelessness — 31% of the nation’s homeless veteran population — according to a 2021 homelessness report by the U.S. Department of Housing and Urban Development.

“Getting veterans experiencing homelessness off the streets has long been a priority for California, but getting some of our most vulnerable veterans into needed treatment for behavioral health challenges will be transformative,” Irwin said.

Sen. Susan Talamantes Eggman (D-Stockton), who co-authored the bond bill and was the lead author of the other bill, said the bills are critical to the state’s continuum of care. “Together they will build out voluntary housing, reprioritize resources to those with the greatest needs, and provide a true safety net to prevent the many people falling through the cracks that we see today,” she said.

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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Medical students and residents will participate in medical language programs, learn to care for individuals with disabilities or limited English proficiency dur

Statement from HHS Secretary Xavier Becerra on National Hispanic Heritage Month

Justina Worrell, 47, works part time as a kitchen helper in an Ohio nursing home. She has cerebral palsy, an intellectual disability, and a cardiac condition that required she get an artificial heart valve at age 20.

A year ago, she was earning $862 a month and receiving about $1,065 in monthly Social Security disability benefits when a letter arrived from the federal government. The Social Security Administration had been overpaying her, the letter said, and wanted money back.

Within 30 days, it said, she should mail the government a check or money order.

For $60,175.90.

“Social Security should be to help people, not to destroy them,” said Addie Arnold, Worrell’s aunt and caregiver.

The Social Security Administration is trying to reclaim billions of dollars from many of the nation’s poorest and most vulnerable — payments it sent them but now says they never should have received.

During the 2022 fiscal year, the agency clawed back $4.7 billion of overpayments, while another $21.6 billion remained outstanding, according to a report by SSA’s inspector general.

One consequence is a costly collection effort for the government and a potentially devastating ordeal for the beneficiary.

“We have an overpayment crisis on our hands,” said Rebecca Vallas, a senior fellow at the Century Foundation think tank.

“Overpayments push already struggling beneficiaries even deeper into poverty and hardship, which is directly counterproductive to the goals” of safety-net programs.

The Social Security Administration declined an interview request from KFF Health News and Cox Media Group and would field questions only submitted by email.

The agency declined to say how many people have been asked to repay overpayments.

“We do not report on the number of debtors,” spokesperson Nicole Tiggemann said in a statement.

The agency rejected a May 2022 Freedom of Information Act request for documentation of every overpayment notice sent over several years, and a March 2023 appeal is pending.

Jack Smalligan of the Urban Institute, who has done research on Social Security, estimated that millions of people have received notices saying the agency overpaid them.

Most are on disability, and many cannot afford to repay the government, Smalligan said.

Overpayments can result from Social Security making a mistake or from beneficiaries failing to comply with requirements, intentionally or otherwise. But much of the fault lies within the system — for example:

• Rules are complex and hard to follow.
• Limits on what beneficiaries can save or own have not been adjusted for inflation in decades.
• The Social Security Administration does not have adequate staffing to keep up with its workload, much of which is done by hand.
• The system has built-in lags in checking information such as beneficiaries’ income and relies heavily on data submitted by beneficiaries themselves.

That’s the picture that emerges from agency employees, advocates for the disabled, policy research, SSA publications, reports by the inspector general, records of individual cases, and interviews with more than a dozen people in five states who received repayment notices.

The Social Security Administration is required to be a good steward of the money entrusted to it. That means keeping overpayments to a minimum — and recovering them when they happen, the inspector general has written.

When the agency determines it has overpaid, SSA can ultimately reclaim money from beneficiaries by, for instance, reducing or stopping their monthly benefit payments, garnishing wages, and intercepting federal tax refunds.

The agency tracks its overpayments through quarterly “payment integrity scorecards.” In the most recent scorecard for one Social Security program, the agency said $265 million of overpayments in the 2022 fiscal year were “within the agency’s control.” In other words, the agency blamed itself.

“We were aware of information but failed to take action, or we took incorrect action when the recipient or third-party provided requested information,” the scorecard said.

A much larger source of overpayments in that program, the agency said, was that beneficiaries did not report information, such as changes in their wages or assets.

By the time the agency catches a mistake, years can pass. In the meantime, the beneficiary is likely to have spent the money, and the amount involved can grow to overwhelming proportions.

“We understand getting notice of an overpayment may be unsettling or unclear and we work with people to navigate the overpayment process,” Tiggemann, the agency spokesperson, said by email.

The agency’s payment accuracy is high, Tiggemann said, but given the volume of payments it issues — almost $1.2 trillion in the 2021 fiscal year — “even small error rates add up to substantial improper payment amounts.”

Tiggemann noted that the SSA is developing a program to tap payroll data from outside sources. The agency plans to use that information “when appropriate” to automatically adjust the amounts it pays beneficiaries, she said.

Congress authorized that project almost eight years ago.

Tangled Safety Nets

When people hear “Social Security,” they may think of retirement benefits — the monthly payments the government issues to millions of retired workers and surviving family members under the Old-Age and Survivors Insurance program.

But the Social Security Administration does much more than issue those checks, and its clawbacks for overpayment commonly involve payments under other programs with complicated eligibility requirements.

With certain benefits, how much money — if any — beneficiaries are due each month can change as their circumstances change.

Most of the overpayments involve the Supplemental Security Income program, which provides money to people with little or no income or other resources who are disabled, blind, or at least 65.

In the 2021 fiscal year, more than 7% of that program’s outlays were overpayments, according to the agency’s most recent annual financial report.

Some overpayments involve the Disability Insurance program, which assists disabled workers and their dependents.

Lori Cochran, a beneficiary disabled by multiple sclerosis, said she got tripped up by a life insurance policy she took over from her mother.

After she reviewed her finances with a Social Security representative, she recounted, she received a letter saying she owed $27,000.

“I started having, like, heart palpitations,” she recalled.

Cochran said she didn’t know the insurance policy had a cash value of $4,000.

The agency told her that, for every month she held the policy, she wasn’t entitled to any of her $914 monthly benefit, she said. The agency said it would recoup the $27,000 by deducting $91.40 from each of her future checks. At that rate, she would be paying it back “way into my elderly age,” she said.

Cochran has asked SSA to reconsider. In the meantime, she cashed out the life insurance policy — only to learn that, instead, she could have signed a paper saying she had no intention of cashing it out.

“So now I’m left with no life insurance,” she said. “When I die, my daughter will have no money to bury me.”

A ‘Kafkaesque Minefield’

If beneficiaries believe that an overpayment wasn’t their fault, that the claim is unfair, or that paying the money back would cause hardship, they can ask the SSA to waive repayment.

They can also negotiate to repay what they owe gradually.

Cheryl Bates-Harris of the National Disability Rights Network recommended that people who receive overpayment notices appeal, because the information in the notices may be inaccurate.

But trying to resolve an overpayment involves plunging into a “Kafkaesque minefield,” said Darcy Milburn, director of Social Security and health care policy at the Arc, which advocates for people with disabilities.

Another beneficiary named Lori described her journey through the minefield on the condition that her last name be withheld. She provided a copy of an administrative law judge’s ruling in her case.

In 2017, SSA informed her that, since 2000, she had been overpaid $126,612, according to the judge’s ruling.

“I almost threw up when I opened that letter,” she said. “Myself and my husband were like, we were like frantic.”

According to the judge’s ruling, the government based its calculation on her receipt of workers’ compensation benefits as well as disability benefits. She argued that she had told the SSA about the workers’ comp. Lori worked for the U.S. Postal Service until she injured her back.

As her struggle unfolded, the government reduced her monthly benefit checks and then stopped them. She and her husband sold their car and their house and moved from Florida to Georgia, where the cost of living was lower.

She said she ran up credit card debt and called lawyer after lawyer but was told no attorney would help because there was no money to be made from a Social Security case. Then she found one through legal aid.

After six years of battling SSA, including multiple appeals, Lori prevailed. An administrative judge ruled in her favor and wiped away the debt.

Lori had spent her benefit money in the belief she was entitled to it, the judge wrote, and “requiring repayment would be against equity and good conscience.”

A family in Covington, Georgia, had a similar experience.

In 2018, Matt Cooper was shot in the face while working as a police officer there. Since then, he and his wife, Kristen, have depended on Social Security payments to help support their two young children.

“Every decision that we made for our family was based on the benefits that we were supposed to receive,” Kristen Cooper said.

But the Social Security Administration recently demanded the family pay back $30,000 and reduced the children’s benefits. Cooper said the agency failed to correctly include her husband’s workers’ compensation in its calculations.

“Situations like this come up and it just brings back a level of anger and just the need to protect my family,” she said. “The system has definitely let us down.”

Too Late

Alex Hubbard, 30, has autism and said he works in a mailroom to keep busy.

“I like to be busy because I don’t want to be bored at home,” he said.

In 2019, Hubbard received an overpayment notice for $11,111.43.

“I’m supposed to report my wages, but I just don’t know how, how it works,” said the Seattle resident.

The agency has cut off his benefits, Hubbard said, but it would have been better if it had stopped them before he owed all that money.

“They should have let me know, like, years back that I owed back that much,” Hubbard said.

Now, the agency is trying to collect the money from his mother, who is unable to manage his benefits since having a stroke, Hubbard said.

Dealing with the Social Security Administration can be exasperating, beneficiaries said.

Letters from the agency don’t provide clear explanations, and, if people on the receiving end of overpayment notices can get through to a human, agency employees give inconsistent answers, beneficiaries said.

SSA employees interviewed for this article, speaking as union leaders, said they can relate.

Beneficiaries “struggle getting through to an agency that has all but become non-responsive to the public at this point due to understaffing,” said Jessica LaPointe, a claims specialist in SSA’s Madison, Wisconsin, field office and president of a union council representing Social Security employees.

Tiggemann, the agency spokesperson, cited the challenge of “staffing losses and resource constraints” in her written statement.

In a March 2023 budget message, SSA’s acting commissioner, Kilolo Kijakazi, said SSA was “rebuilding” its workforce after ending the 2022 fiscal year “at our lowest staffing level in over 25 years.”

New workers need a long time to get up to speed, employees said. Complex rules cause trouble for employees and beneficiaries alike.

Members of the public “often struggle to really understand what they’re supposed to report,” LaPointe said.

Rules for the Beneficiaries

Disability benefits are meant for people who can’t do a lot of work.

For disabled people who aren’t blind, the government generally draws a line at earning $1,470 or more per month.

It’s not just bank balances or paycheck amounts and the like that can affect a person’s benefits. In the SSI program, if a family member gives them meals or a place to stay, that can count as “in-kind support.”

Part of the trouble with SSI, critics say, is that limits on the assets that beneficiaries are allowed to hold without forfeiting benefits haven’t been adjusted since 1989. The asset limits stand at $2,000 for individuals and $3,000 for couples.

Had the asset limits been indexed for inflation since 1972, when the program was created, they would be almost five times as much as they are today, according to a July 2023 report by researchers at the Center on Budget and Policy Priorities.

Maintaining eligibility for SSI benefits leaves people with little money to fall back on — let alone to repay a large debt to the government.

A bipartisan group of lawmakers introduced a bill on Sept. 12 to raise the limits.

The SSDI and SSI programs include rules meant to encourage people to work. However, “if beneficiaries attempt work, they are likely to be confronted with an overpayment, and it is likely to be large,” Smalligan and Chantel Boyens of the Urban Institute said in a March 2023 report commissioned by the Social Security Advisory Board.

‘In a Very Bad Place’

Justina Worrell’s aunt and caregiver Addie Arnold, 69, who took her in when she was orphaned as a child, said neither of them has $60,175.90 to repay the government.

The August 2022 letter demanding repayment of that amount was not the first or the last word they have received from the Social Security Administration about possible payment errors. The matter involves two streams of benefits — one from the account of Worrell’s deceased father, and another related to her disability, Arnold said.

“I’ve been confused ever since this started,” she said.

A February 2023 letter from the SSA claiming to explain how “we paid her [Worrell] $7,723.40 too much in benefits” includes difficult-to-decipher data going back to 1996.

The SSA has dropped its claim on some of the more than $60,000 it sought a year ago, but most remains outstanding, Arnold said.

Arnold believes part of the problem is that Worrell’s employer asked her to work additional hours at the nursing home, where she runs a dishwasher and carries trays.

“She is so afraid of losing her job that she will do whatever they ask her to do. That is part of her mental state,” Arnold wrote in a letter appealing to the Social Security Administration.

“I truly do hope and pray that she is allowed to stay on SSI,” Arnold wrote, “because she has to continue to live and without it she will be in a very bad place.”

Reporters contributing to this investigation: Josh Wade, Cox Media Group; Justin Gray, WSB-TV, Atlanta; John Bedell, WHIO-TV, Dayton, Ohio; Shannon Butler, WFTV-TV, Orlando, Florida; Amy Hudak, WPXI-TV, Pittsburgh; Jesse Jones, KIRO-TV, Seattle; Ted Daniel, WFXT-TV, Boston; Madison Carter, WSOC-TV, Charlotte, North Carolina; Ben Becker, WJAX-TV, Jacksonville, Florida

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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SYRACUSE, Neb. — Many rural communities like this one face a health care dilemma: Is it better to have a nursing home that struggles to hire workers or no nursing home at all?

The national debate over that question will heat up now that federal regulators have proposed to improve care by setting minimum staffing levels for all U.S. nursing homes.

Rural nursing homes would have five years to comply with some of the rules, versus three for their urban counterparts. Facilities also could apply for “hardship exemptions.” But industry leaders predict the rules could accelerate a wave of closures that has already claimed hundreds of rural nursing homes.

Some families that rely on the Good Samaritan Society home in Syracuse fear the regulation could hasten its demise.

The facility is the town’s lone nursing home. It is running at barely half its licensed capacity, and managers say they’ve been turning away prospective residents because they can’t find enough staff to care for more.

Lana Obermeyer, whose mother lives there, said employees take good care of residents. “Are they overworked? Probably,” she said. “Isn’t everybody these days?”

The Biden administration proposal, released Sept. 1, is intended to ensure higher-quality care by requiring a minimum number of hours of average daily staffing per resident, including 2.5 hours from certified nurse aides and 33 minutes from registered nurses.

The proposal also would require around-the-clock coverage by at least one registered nurse at every nursing home. Regulators estimate 1,358 rural nursing homes, including 58 in Nebraska, would need to add nurses to meet that standard.

Patient-safety advocates have long pressed the government to impose such standards to prevent neglect of nursing home residents. They blame the industry for letting its staffing problems fester for decades, and many hoped the federal proposal would be more stringent.

The proposal would not affect assisted living centers, which are designed to care for people with less severe health problems.

Syracuse, which has about 1,900 people, serves a farming region in southern Nebraska. Its red-brick nursing home sits near a cemetery, a hearing aid store, and a tractor dealership. It would need to hire several more aides and an overnight registered nurse to meet the requirements.

Most of the nursing home’s 46 residents are from the area. So are most employees. Staffers often care for their former teachers, coaches, and babysitters. They know each other’s families.

If the facility closed, many residents likely would be transferred to larger nursing homes in the city of Lincoln, a 40-minute drive northwest, or Omaha, which is an hour northeast. They would be placed among strangers.

“I truly think it would kill half of these people,” said Obermeyer, whose mother, Sharon Hudson, has been in the Good Samaritan home five years.

Obermeyer lives less than a block away, and she walks over to see her mom several times a week. Hudson also enjoys frequent visits from other locals, who stop by to see her after visiting their own parents in the facility.

Hudson has advanced Alzheimer’s disease. She can no longer speak many words, but she smiles and giggles often, and tries to communicate with garbled sentences. “She’s a very happy, happy person,” Obermeyer said.

Ideally, she would be served in a specialized “memory care unit,” for people with dementia. The Good Samaritan home once had one, but the unit closed several years ago for lack of staff. The wing now sits dark.

Ten Nebraska nursing homes have shut down since 2021, said Jalene Carpenter, president of the Nebraska Health Care Association. Most have been in small towns.

The state’s long-term care facilities have raised wages as much as 30% in recent years, partly because Nebraska joined most other states in substantially increasing how much its Medicaid program pays for nursing home care, Carpenter said. But many of the state’s 196 remaining nursing homes are limiting admissions because of staffing shortages, she said. “It’s unsustainable.”

Carpenter said part of the problem is that the population of seniors who need care in many rural areas outpaces the supply of working-age adults. Job seekers have plenty of choices outside of health care, many with better hours and less stress. She noted that nine rural Nebraska counties had no registered nurses in 2021.

A prominent consumer advocate scoffed at claims that rural facilities would be unable to comply with the proposed staffing rules.

“That’s always their first response: ‘We’re going to have to close,’” said Lori Smetanka, executive director of the National Consumer Voice for Quality Long-Term Care. “It’s like, ‘The sky is falling.’”

Smetanka said the industry should have improved working conditions and wages long ago, and she contends the proposed standards are too lenient.

Regulators shouldn’t offer rural nursing homes extra time to meet the staffing rule, she said. “Residents in rural facilities have the same level of needs as those in urban facilities,” she said. “Every resident deserves quality care today.”

Smetanka’s group favors offering incentives, such as pay raises and housing assistance, to employees in the long-term care industry. It also wants the government to strengthen options for care in people’s homes instead of in facilities.

Industry leaders have suggested easing immigration rules to allow more workers from other countries. Smetanka said that such workers might help ease the staffing shortage but that they shouldn’t be subjected to the poor conditions and low pay that have driven many previous employees away.

In Iowa, 27 nursing homes have closed over the past two years, according to the Iowa Health Care Association. Most were in rural areas. About 400 remain open in the state.

John Hale, an Iowa advocate for improved long-term care, said he sympathizes with rural residents who worry about facilities closing. But he said companies sometimes use staffing woes as an excuse to shutter money-losing facilities.

Hale has roamed the halls of Iowa’s Capitol for years, trying to persuade legislators to protect vulnerable seniors and people with disabilities. He said minimum staffing proposals have always been blocked by the nursing home industry, which receives millions of state and federal tax dollars from Medicaid. The industry’s message to government officials boils down to “give us more money and leave us alone,” he said.

Hale noted Iowa’s government sets minimum staffing levels for child care centers to ensure kids’ safety, but hasn’t done so for seniors in care facilities. “I just wonder what that says about our values as a government and as a people,” he said.

The longtime federal standard for nursing homes has been that they have “sufficient” staff. Hale said that vague standard is akin to replacing speed limit signs with suggestions that motorists drive “at reasonable speeds.”

Nursing homes are required to report their staffing to federal regulators, who use formulas to measure how much daily attention residents receive from various types of professionals, including registered nurses, licensed practical nurses, and certified nursing aides. Some states have set specific minimum staffing levels, but many, including Nebraska and Iowa, have not.

The Good Samaritan home in Syracuse is rated three out of five stars for overall quality on the nursing home comparison website run by Medicare. Its staffing level is rated at four stars, although its reported ratio of staff hours to residents was below national and Nebraska averages.

The Good Samaritan Society, which owns the nursing home, is one of the country’s largest nonprofit chains of care facilities. In 2021, it reported nearly $78 million in losses on nearly $1 billion in revenue. The company is owned by the giant Sanford Health system, based in South Dakota. It has closed 13 nursing homes in the past two years, mostly in rural areas.

Good Samaritan Society President Nate Schema said he fears the proposed federal staffing standards would spark more closures, forcing rural residents to seek care far from their hometowns. Family members would not be able to visit as often, he said. “Are they going to have to drive 20 or 30 or, God forbid, 100 miles?”

In a letter to federal regulators, Schema wrote that his company owns 139 nursing homes in 19 states, with nearly 1,700 open positions. At one facility in rural South Dakota, he wrote, a night-shift nursing job has been vacant for three years.

The possibility of closure is on the minds of residents and families at the Good Samaritan nursing home in Syracuse.

Resident Nellie Swale said she knows people who had to transfer to the facility from other nursing homes that closed. They were stressed and saddened by the move, she said. “Old people really depend on routines,” she said.

Certified nursing assistant Karena Cunningham tells residents she hopes the Syracuse nursing home stays open. But, she said, “we can’t make them any promises.”

Cunningham considered looking for a less stressful job, but she couldn’t leave. “It’s my family here. I love the friends I’ve made,” she said.

The facility currently has 82 employees, with 10 vacant full-time positions. The company said it spent $150,000 in the past year raising pay at the facility. The lowest starting wage for a nurse aide there has reached $18 an hour, a 30% increase from 10 months earlier.

Cunningham said that with a bigger staff, the nursing home could accept more residents, including those with complicated issues, such as addiction, mental illness, or severe obesity.

A national minimum staffing rule sounds like it would make sense, “in a perfect world,” she said.

“Bring me these people that we’re supposed to have for staff,” Cunningham said. “Where are they?”

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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The Host Emmarie Huetteman KFF Health News Emmarie Huetteman, associate Washington editor, previously spent more than a decade reporting on the federal government, most recently covering surprise medical bills, drug pricing reform, and other health policy debates in Washington and on the campaign trail.

The annual U.S. Census Bureau report this week revealed a drop in the uninsured rate last year as more working-age people obtained employer coverage. However, this year’s end of pandemic-era protections — which allowed many people to stay on Medicaid — is likely to have changed that picture quite a bit since. Meanwhile, reports show even many of those with insurance continue to struggle to afford their health care costs, and some providers are encouraging patients to take out loans that tack interest onto their medical debt.

Also, a mystery is unfolding in the federal budget: Why has recent Medicare spending per beneficiary leveled off? And the CDC recommends anyone who isat least 6 months old get the new covid booster.

This week’s panelists are Emmarie Huetteman of KFF Health News, Margot Sanger-Katz of The New York Times, Sarah Karlin-Smith of the Pink Sheet, and Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.

Panelists Sarah Karlin-Smith Pink Sheet @SarahKarlin Read Sarah's stories Joanne Kenen Johns Hopkins Bloomberg School of Public Health and Politico @JoanneKenen Read Joanne's stories Margot Sanger-Katz The New York Times @sangerkatz Read Margot's stories

Among the takeaways from this week’s episode:

• The Census Bureau reported this week that the uninsured rate dropped to 10.8% in 2022, down from 11.6% in 2021, driven largely by a rise in employer-sponsored coverage. Since then, pandemic-era coverage protections have lapsed, though it remains to be seen exactly how many people could lose Medicaid coverage and stay uninsured.
• A concerning number of people who have insurance nonetheless struggle to afford their out-of-pocket costs. Medical debt is a common, escalating problem, exacerbated now as hospitals and other providers direct patients toward bank loans, credit cards, and other options that also saddle them with interest.
• Some state officials are worried that people who lose their Medicaid coverage could choose short-term health insurance plans with limited benefits — so-called junk plans — and find themselves owing more than they’d expect for future care.
• Meanwhile, a mystery is unfolding in the federal budget: After decades of warnings about runaway government spending, why has spending per Medicare beneficiary defied predictions and leveled off? At the same time, private insurance costs are increasing, with employer-sponsored plans expecting their largest increase in more than a decade.
• And the push for people to get the new covid booster is seeking to enshrine it in Americans’ annual preventive care regimen.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Emmarie Huetteman: KFF Health News’ “The Shrinking Number of Primary Care Physicians Is Reaching a Tipping Point,” by Elisabeth Rosenthal.

Sarah Karlin-Smith: MedPage Today’s “Rural Hospital Turns to GoFundMe to Stay Afloat,” by Kristina Fiore.

Joanne Kenen: ProPublica’s “How Columbia Ignored Women, Undermined Prosecutors and Protected a Predator for More Than 20 Years,” by Bianca Fortis and Laura Beil.

Margot Sanger-Katz: Congressional Budget Office’s “Raising the Excise Tax on Cigarettes: Effects on Health and the Federal Budget.”

Also mentioned in this week’s episode:

• U.S. Census Bureau’s “Health Insurance Coverage of U.S. Workers Increased in 2022,” by Rachel Lindstrom, Katherine Keisler-Starkey, and Lisa Bunch.
• The Commonwealth Fund’s “Can Older Adults with Employer Coverage Afford Their Health Care?” by Lauren A. Haynes and Sara R. Collins.
• KFF Health News’ “What One Lending Company’s Hospital Contracts Reveal About Financing Patient Debt,” by Noam N. Levey.
• The New York Times’ “A Huge Threat to the U.S. Budget Has Receded. And No One Is Sure Why,” by Margot Sanger-Katz, Alicia Parlapiano, and Josh Katz.
• The Wall Street Journal’s “Health-Insurance Costs Are Taking Biggest Jumps in Years,” by Anna Wilde Mathews.
• The New York Times’ “The N.Y.C. Neighborhood That’s Getting Even Thinner on Ozempic,” by Joseph Goldstein.

Credits Francis Ying Audio producer Terry Byrne Copy chief Gabe Brison-Trezise Deputy copy chief

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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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When she was around 22 weeks pregnant, the patient found out that the son she was carrying didn’t have kidneys and his lungs wouldn’t develop. If he survived the birth, he would struggle to breathe and die within hours.

The patient had a crushing decision to make: continue the pregnancy — which could be a risk to her health and her ability to have children in the future — or have an abortion.

“I don’t think I stopped crying for an entire two weeks,” she said. “The whole world felt heavy. … It’s not something anybody should have to go through. It’s not easy losing somebody you love.”

KFF Health News is not disclosing the woman’s name or the name of the community where she lives, because she fears harm if her identity becomes known. She lives in Missouri, which has one of the strictest abortion bans in the nation. KFF Health News confirmed details of her experience.

After the fetal diagnosis, the patient’s Missouri doctors told her that her life wasn’t in immediate danger, but they also pointed out the risks of carrying the pregnancy to term. And in her family, there’s a history of hemorrhaging while giving birth. If she started to bleed, her doctors said, she might lose her uterus, too. The patient said this possibility was devastating. She’s a young mom who wants more children.

So she chose to get an abortion. Her Missouri doctors told her it was the safest option — but they wouldn’t provide one.

The patient had to leave Missouri and cross the border to Illinois, which has become a legal haven for abortion rights. Because of her complicated pregnancy, she received the abortion in a hospital.

Since the Dobbs decision overturned Roe v. Wade on June 24, 2022, determining who can get an abortion and where has been complicated by medically ambiguous language in new state laws that ban or restrict abortion. Doctors in those states fear they could lose their medical licenses or wind up in jail.

Amid these changes, physicians in abortion havens such as Illinois are stepping up to fill the void and provide care to as many patients as possible.

But getting each medically complex patient connected to a doctor and a hospital has been logistically complicated. In response to the growing demand, Illinois Gov. JB Pritzker, a Democrat, recently launched a state program with a goal to get patients who show up at clinics, yet need a higher level of abortion care, connected more quickly with Illinois hospitals. Providers will call a hotline to reach nurses who will handle the logistics.

There is little concrete data on how many more patients are traveling to other states for abortions at hospitals. The Centers for Disease Control and Prevention tracks some abortion data regarding out-of-state patients but doesn’t collect it based on the type of facility they’re performed in.

Hospitals are a “black box” for abortion-related data, according to Rachel Jones, a longtime researcher at the nonprofit Guttmacher Institute.

Even before Roe fell, it was hard to wade through the hospital bureaucracy to understand more comprehensively how abortion care was provided, Jones said. Guttmacher has tracked hospital-based abortions in the past but doesn’t have updated figures since Dobbs.

#WeCount, widely considered a reliable tracker of shifts in abortion care over the past year, doesn’t break out hospital data separately. #WeCount co-chair Ushma Upadhyay said the data would have gaps anyway. She said it’s been difficult to get providers in banned states to report what’s happening.

The Uncertainties Behind Life Exceptions

All 15 states that ban abortions do allow exceptions to save the life of the pregnant person, according to tracking from the health policy nonprofit KFF. But exactly when the person’s life is considered at risk is open to interpretation.

“It’s very, very difficult to get an exception,” said Alina Salganicoff, director of women’s health policy at KFF. “It’s like, ‘How imminent is this threat?’ And in many cases, patients can’t wait until they’re about to die before they get an abortion.”

The latest ban — in Indiana — took effect at the end of August.

In 2020, when Roe was still the law of the land, only 3% of abortions typically occurred in hospitals. Now, OB-GYNs in Chicago and other places across the U.S. that protect abortion rights say out-of-state patients are increasingly showing up to get abortion care at hospitals.

Those more complex procedures and hospital stays often bring higher medical bills. More patients now need help covering the expensive price tag of the procedures, according to medical providers and abortion funds that provide financial assistance.

The patient from Missouri made her way to Laura Laursen, an OB-GYN at Rush University Medical Center in Chicago, in May. The number of out-of-state abortions at Rush has quadrupled since Roe was overturned, Laursen said.

Laursen received the patient’s consent to discuss her case with NPR and KFF Health News. She recalled the patient was frustrated about having to jump through so many hoops to get the abortion, and stressed about the cost of being in a hospital.

“The biggest thing was just making space for her to express those emotions,” Laursen said. “Making sure that she felt comfortable with all the decisions she was making. And trying to make her feel as empowered as possible.”

The patient’s life wasn’t immediately threatened, but it was safer for her to have an abortion than remain pregnant, Laursen said.

“I’m constantly hearing stories from my partners across the country of trying to figure out what counts as imminent danger,” Laursen said. “We’re trying to prevent danger. We’re not trying to get to the point where someone’s an emergency.”

Sending Patients Over State Lines for Care

Jennifer McIntosh is an OB-GYN in Milwaukee who specializes in high-risk patients. Because of Wisconsin’s abortion ban, she’s referring more patients out of state.

“It’s really awful,” McIntosh said, recalling difficult conversations with patients who wanted to be pregnant, but whose babies faced dire outcomes.

She would tell them: “Yes, it’s very reasonable to get an abortion. But oh, by the way, it’s illegal in your own state. So now on top of this terrible news, I’m going to tell you that you have to figure out how to leave the state to get an abortion.”

In some cases, McIntosh can provide an abortion if the medical risk is significant enough to satisfy Wisconsin’s life-of-the-mother exception. But it feels legally risky, she said.

“Am I worried that someone might think that it doesn’t satisfy that?” McIntosh said. “Absolutely, that terrifies me.”

Jonah Fleisher‘s phone is often ringing and buzzing with texts. An OB-GYN who specializes in abortion and contraception at the University of Illinois health system, near Rush hospital in Chicago, Fleisher is frequently asked to see how quickly he can squeeze in another patient from another state.

Since Roe fell, Fleisher estimated, the health system is treating at least three times as many patients who are traveling from other states for abortion care.

He worries about the “invisible” patients who live in states with abortion bans and never make it to his hospital. They may have medical problems that complicate their pregnancies yet don’t know how to navigate the logistics required to make their way over state lines to his exam room, or don’t have the financial resources.

“I know that some number of those women are not going to make it through birth and postpartum,” Fleisher said. “More than the stress of somebody who’s actually making it to see me, that’s the thing that causes me more stress.”

Medical costs, in addition to travel, are a big obstacle for high-risk patients seeking abortion care at hospitals. The patient from Missouri owed around $6,000 for her hospital stay, Laursen said. Her bill was covered by local and national abortion funds. Some hospital bills can reach into the tens of thousands of dollars for more complicated procedures, according to the funds.

The Chicago Abortion Fund pledged to cover just over $440,000 in hospital bills for 224 patients in the year following Dobbs, according to Meghan Daniel, CAF’s director of services. Those bills were primarily for out-of-state patients. By comparison, in the year that preceded Dobbs, CAF helped cover just over $11,000 for 27 patients.

This increase in patients needing financial help for out-of-state abortion care is happening across the nation.

In many cases, patients have a hard time accessing abortion care, and the delays push them further into their pregnancies until they need to have the procedure in a hospital, said Melissa Fowler, chief program officer at the National Abortion Federation. And that costs much more.

“We’re seeing more cases right now [of] people who are later in gestation,” Fowler said. “More adolescents who are later in gestation, who are showing up at hospitals because this is really their last resort. They’ve been referred all over.”

All of this raises questions about how long these funds can afford to help.

“The current financial way in which people are paying for their abortions I fear is not sustainable,” Fleisher said.

Nonprofit hospitals could help. In return for getting tax breaks, they have financial assistance policies for people who are uninsured or can’t afford their medical bills. But the policy at UI Health in Chicago, for example, covers only Illinois residents. UI Health spokesperson Jackie Carey said that for other patients, including those who live in other states, the hospital offers discounts if they don’t have insurance, or if their insurance won’t pay.

Laursen argues out-of-state Medicaid plans and insurance companies should be picking up the tab.

“Whose responsibility is this?” she asked.

Not Ready to Let Go

Back in Missouri, the patient has a special room dedicated to her son. She brought home a recording of his heartbeat and keeps his remains in a heart-shaped casket. She talks to her son, tells him how much she loves him.

“I’m just not ready to let him go,” the patient said. “Even though they’re not here on Earth anymore, you still see them in your dreams.”

She’s working on healing emotionally and physically. And while she’s thankful that she was able to travel to Illinois for care, the experience made her angry with her home state.

“There’s a lot of good people out there who go through a lot of unfortunate situations like me who need abortion care,” the patient said. “To have that taken away by the government, it just doesn’t feel right.”

This article is from a partnership that includes WBEZ, NPR, and KFF Health News.

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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This story can be republished for free (details).

Meg Bakewell, who has cancer and cancer-related heart disease, sometimes emails her primary care physician, oncologist, and cardiologist asking them for medical advice when she experiences urgent symptoms such as pain or shortness of breath.

But she was a little surprised when, for the first time, she got a bill — a $13 copay — for an emailed consultation she had with her primary care doctor at University of Michigan Health. The health system had begun charging in 2020 for “e-visits” through its MyChart portal. Even though her out-of-pocket cost on the $37 charge was small, now she’s worried about how much she’ll have to pay for future e-visits, which help her decide whether she needs to see one of her doctors in person. Her standard copay for an office visit is $25.

“If I send a message to all three doctors, that could be three copays, or $75,” said Bakewell, a University of Michigan teaching consultant who lives in Ypsilanti, Michigan, and is on long-term disability leave. “It’s the vagueness of the whole thing. You don’t know if you’ll get into a copay or not. It just makes me hesitate.”

Spurred by the sharp rise in email messaging during the covid pandemic, a growing number of health systems around the country have started charging patients when physicians and other clinicians send replies to their messages. Health systems that have adopted billing for some e-visits include a number of the nation’s premier medical institutions: Cleveland Clinic, Mayo Clinic, San Francisco-based UCSF Health, Vanderbilt Health, St. Louis-based BJC HealthCare, Chicago-based Northwestern Medicine, and the U.S. Department of Veterans Affairs.

Billing for e-visits, however, raises knotty questions about the balance between fairly compensating providers for their time and enhancing patients’ access to care. Physicians and patient advocates fret particularly about the potential financial impact on lower-income people and those whose health conditions make it hard for them to see providers in person or talk to them on the phone or through video.

A large part of the motivation for the billing is to reduce the messaging. Soon after the pandemic hit, health systems saw a 50% increase in emails from patients, with primary care physicians facing the biggest burden, said A Jay Holmgren, an assistant professor of health informatics at UCSF, the University of California-San Francisco. System executives sought to compensate doctors and other providers for the extensive time they were spending answering emails, while prodding patients to think more carefully about whether an in-person visit might be more appropriate than a lengthy message.

After UCSF started charging in November 2021, the rate of patient messaging dipped slightly, by about 2%, Holmgren and his colleagues found.

Like UCSF, many other health systems now charge fees when doctors or other clinicians respond to patient messages that take five minutes or more of the provider’s time over a seven-day period and require medical expertise. They use three billing codes for e-visits, implemented in 2020 by the federal Centers for Medicare & Medicaid Services.

E-visits that are eligible for billing include those relating to changes in medication, new symptoms, changes or checkups related to a long-term condition, and requests to complete medical forms. There’s no charge for messages about appointment scheduling, prescription refills, or other routine matters that don’t require medical expertise.

So far, UCSF patients are being billed for only 2% to 3% of eligible e-visits, at least partly because it takes clinicians extra time and effort to figure out whether an email encounter qualifies for billing, Holmgren said.

At Cleveland Clinic, only 1.8% of eligible email visits are being billed to patients, said Eric Boose, the system’s associate chief medical information officer. There are three billing rates based on the time the clinician takes to prepare the message — five to 10 minutes, 11 to 20 minutes, and 21 minutes or more. He said patients haven’t complained about the new billing policy, which started last November, and that they’ve become “a little smarter and more succinct” in their messages, rather than sending multiple messages a week.

The doctors at Cleveland Clinic, like those at most health systems that bill for e-visits, don’t personally pocket the payments. Instead, they get productivity credits, which theoretically enables them to reduce their hours seeing patients in the office.

“Most of our physicians said it’s about time we’re getting compensated for our time in messaging,” Boose said. “We’re hoping this helps them feel less stressed and burned out, and that they can get home to their families earlier.”

“It’s been a frustration for many physicians for many years that we weren’t reimbursed for our ‘pajama-time’ work,” said Sterling Ransone, the chair of the American Academy of Family Physicians’ Board of Directors. Ransone’s employer, Riverside Health System in Virginia, started billing for e-visits in 2020. “We do it because it’s the right thing for patients. But rarely do you see other professions do all this online work for free,” he said.

“We see physicians working two to four hours every evening on their patient emails after their shift is over, and that’s not sustainable,” said CT Lin, the chief medical information officer at University of Colorado Health, which has not yet adopted billing for email visits. “But we worry that patients with complex disease will stop messaging us entirely because of this copay risk.”

Many health care professionals share the fear that billing for messages will adversely affect medically and socially vulnerable patients. Even a relatively small copay could discourage patients from emailing their clinicians for medical advice in appropriate situations, said Caitlin Donovan, a senior director at the National Patient Advocate Foundation, citing studies showing the dramatic negative impact of copays on medication adherence.

Holmgren said that while patients with minor acute conditions may not mind paying for an email visit rather than coming into the office, the new billing policies could dissuade patients with serious chronic conditions from messaging their doctors. “We don’t know who is negatively affected,” he said. “Are we discouraging high-value messages that produce a lot of health gains? That is a serious concern.”

Due to this worry, Lin said, University of Colorado Health is experimenting with an alternative way of easing the time burden of e-visits on physicians. Working with Epic, the dominant electronic health record vendor, it will have an artificial intelligence chatbot draft email replies to patient messages. The chatbot’s draft message will then be edited by the provider. Several other health systems are already using the tool.

There also are questions about price transparency — whether patients can know when and how much they’ll have to pay for an email visit, especially since much depends on their health plan’s deductibles and copays.

While Medicare, Medicaid, and most private health plans cover email visits, not all do, experts say. Coverage may depend on the contract between a health system and an insurer. Ransone said Elevance Health, a Blue Cross Blue Shield carrier, recently told his health system it would no longer pay for email or telephonic visits in its commercial or Medicaid plans in Virginia. An Elevance spokesperson declined to comment.

Another price concern is that patients who are uninsured or have high-deductible plans may face the full cost of an email visit, which could run as high as $160.

At University of Michigan Health, where Bakewell receives her care, patients receive a portal alert prior to sending a message that there may be a charge; they must click a box indicating they understand, said spokesperson Mary Masson.

But Donovan said that leaves a lot of room for uncertainty. “How is the patient supposed to know whether something will take five minutes?” Donovan said. “And knowing what you’ll be charged is impossible because of health plan design. Just saying patients could be charged is not providing transparency.”

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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Un panel federal de expertos recomendó el martes 12 de septiembre que todas las personas desde los 6 meses en adelante reciban el nuevo refuerzo contra covid-19. Estiman que la vacunación universal podría prevenir 100,000 hospitalizaciones adicionales cada año, en comparación con vacunar solo a las personas de edad avanzada.

El Comité Asesor sobre Prácticas de Inmunización (ACIP) de los Centros para el Control y Prevención de Enfermedades (CDC) votó 13-1 a favor de la moción después de meses de debate sobre si limitar los refuerzos a grupos de alto riesgo.

Un día antes, la Administración de Drogas y Alimentos (FDA) aprobó la nueva dosis de refuerzo, afirmando que era segura y eficaz para proteger contra las variantes de covid-19 que circulan actualmente en los Estados Unidos.

Después de que se lanzara el refuerzo anterior en 2022, solo el 17% de la población lo recibió, en comparación con aproximadamente la mitad de la nación que recibió la primera dosis de refuerzo en el otoño de 2021.

El cansancio pandémico y la evidencia de que las vacunas no siempre evitan las infecciones por covid-19 jugaron un rol.

Sin embargo, aquellos que se vacunaron tuvieron mucho menos riesgo de enfermarse gravemente o morir, según los datos presentados en la reunión del martes.

El virus a veces causa enfermedad grave incluso en personas sin afecciones subyacentes, provocando más muertes en niños que otras enfermedades prevenibles por vacunas como la varicela, antes de que se recomendara universalmente la vacuna contra este patógeno.

Los datos de los CDC muestran que el número de pacientes hospitalizados con covid-19 ha aumentado un poco en las últimas semanas, y los expertos en enfermedades infecciosas anticipan un alza más adelante en el otoño y el invierno.

Moderna y Pfizer junto con su socio alemán, BioNTech, fabrican las dosis, que costarán hasta $130. Han lanzado campañas de marketing nacionales para fomentar la vacunación. El comité asesor pospuso una decisión sobre una tercera dosis de refuerzo, producida por Novavax, porque la FDA aún no la ha aprobado.

Esto es lo que hay que saber:

¿Quién debe recibir la dosis de refuerzo contra covid-19?

Los CDC aconsejan que todos, desde los 6 meses, la reciban, por el beneficio común. Aquellos con mayor riesgo de enfermedad grave incluyen a bebés y niños pequeños, adultos mayores, mujeres embarazadas y personas con afecciones de salud crónicas, incluyendo la obesidad.

Los riesgos son menores, aunque no nulos, para todos los demás. Se sabe que las vacunas tienden a prevenir la infección en la mayoría de las personas solo durante unos meses. Pero hacen un buen trabajo al prevenir la hospitalización y la muerte, y, disminuyendo las infecciones, pueden frenar la propagación de la enfermedad entre los más vulnerables, cuyos sistemas inmunes pueden ser demasiado débiles para generar una buena respuesta a la vacuna.

Pablo Sánchez, profesor de pediatría en la Universidad Estatal de Ohio y el único disidente en el panel de los CDC, dijo que le preocupaba que las dosis de refuerzo no se hubieran probado lo suficiente, especialmente en niños.

La cepa de la vacuna en las nuevas dosis de refuerzo se aprobó solo en junio, por lo que casi todas las pruebas se hicieron en ratones o monos. Sin embargo, vacunas casi idénticas se han administrado de manera segura a miles de millones de personas en todo el mundo.

¿Cuándo deberías recibirlo?

Los fabricantes de la vacuna dicen que comenzarán a distribuirla la semana del 11 de septiembre. Si estás en un grupo de alto riesgo y no has sido vacunado o has tenido covid en los últimos dos meses, podrías recibirlo de inmediato, según John Moore, experto en inmunología de la Facultad de Medicina Weill Cornell.

Si planeas viajar en esta temporada de vacaciones, Moore sugiere que esperes hasta finales de octubre o principios de noviembre para maximizar el período en el que la protección inducida por la vacuna sigue siendo alta.

¿Quién pagará por las dosis?

Cuando el ACIP recomienda una vacuna para niños, el gobierno está legalmente obligado a garantizar la cobertura gratuita para los niños, y lo mismo se aplica a la cobertura de seguros comerciales para vacunas de adultos.

Para los 25 a 30 millones de adultos sin seguro, el gobierno federal creó el Bridge Access Program,  que pagará por las dosis en centros de salud rurales y comunitarios, así como en Walgreens, CVS y algunas farmacias independientes

Los fabricantes acordaron donar algunas de las dosis, según funcionarios de los CDC.

¿Funcionará esta nueva dosis de refuerzo contra las variantes actuales de covid-19?

Debería. Más del 90% de las cepas que circulan actualmente están estrechamente relacionadas con la variante seleccionada para la dosis de refuerzo a principios de este año, y los estudios mostraron que las vacunas producían suficientes anticuerpos contra la mayoría de ellas.

Las dosis también parecieron generar una buena respuesta inmune contra una cepa divergente que inicialmente preocupaba a las personas, llamada BA.2.86. En la actualidad, esa cepa representa menos del 1% de los casos.

¿Por qué algunos médicos no están entusiasmados con la dosis de refuerzo?

La experiencia con las vacunas contra covid-19 ha demostrado que su protección contra la hospitalización y la muerte dura más que su protección contra la enfermedad, que disminuye relativamente rápido, y esto ha generado escepticismo.

La mayoría de las personas en el país han tenido covid y la mayoría se vacunó al menos una vez, lo que en conjunto suele ser suficiente para prevenir enfermedades graves, si no infecciones, en la mayoría de las personas.

Además, muchos médicos creen que el enfoque debería estar en vacunar a quienes realmente están en riesgo.

Con la nueva dosis de refuerzo, más las vacunas contra la gripe y el virus respiratorio sincitial (VRS), ¿cuántas dosis debo esperar recibir este otoño?

Las personas tienden a enfermarse a finales del otoño porque pasan más tiempo en interiores y pueden viajar y reunirse en grupos familiares grandes. Este otoño, por primera vez, hay una vacuna contra el VRS para adultos mayores.

Kathryn Edwards, pediatra de 75 años de la Universidad de Vanderbilt, planea recibir las tres dosis, pero “probablemente no todas juntas”, dijo.

Covid-19 “puede tener un impacto” y algunas de las vacunas contra el VRS y la gripe recomendadas para mayores de 65 años también pueden causar dolor en el brazo y, a veces, fiebre u otros síntomas.

Un dato reciente que surgió de un análisis reveló que las personas que recibieron las vacunas contra la gripe y covid-19 juntas podrían tener un riesgo ligeramente mayor de accidente cerebrovascular. Esa conexión parece haber desaparecido después de un estudio posterior, pero aún podría ser más seguro no recibirlas juntas.

Pfizer y Moderna están probando vacunas combinadas, con la primera vacuna contra la gripe y covid-19 disponible a partir del próximo año.

¿Se ha utilizado esta versión de la dosis de refuerzo en otras partes del mundo?

No, aunque la vacuna de Pfizer ha sido aprobada en la Unión Europea, Japón y Corea del Sur, y Moderna ha obtenido la aprobación en Japón y Canadá. Los lanzamientos comenzarán en Estados Unidos y otros países esta semana.

A diferencia de períodos anteriores de la pandemia, es poco probable que haya mandatos para la dosis de refuerzo. Pero “es importante que las personas tengan acceso a la vacuna si la quieren”, dijo Beth Bell, miembro del panel y profesora de salud pública en la Universidad de Washington. “Dicho esto, está claro que el riesgo no es igual, y el mensaje debe aclarar que muchas personas mayores y personas con afecciones subyacentes están muriendo y realmente necesitan una dosis de refuerzo”, dijo.

Sarah Long, miembro del ACIP y pediatra en el Hospital Infantil de Philadelphia, votó a favor de una recomendación universal pero dijo que le preocupaba que no fuera suficiente. “Creo que la recomendaremos y nadie la recibirá”, dijo. “Las personas que más la necesitan no la recibirán”.

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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This story can be republished for free (details).