A hospital system in Georgia. Two medical groups in San Diego. Another in Louisville, Kentucky, and nearly one-third of Nebraska hospitals. Across the country, healthcare providers are refusing to accept some Medicare Advantage plans — even as the coverage offered by commercial insurers increasingly displaces the traditional government program for seniors and people with disabilities.
As of this year, commercial insurers have enticed just over half of all Medicare beneficiaries — or nearly 31 million people — to sign up for their plans instead of traditional Medicare. The plans typically include drug coverage as well as extras like vision and dental benefits, many at low or even zero additional monthly premiums compared with traditional Medicare.
But even as enrollment soars, so too has friction between insurers and the doctors and hospitals they pay to care for beneficiaries. Increasingly, according to experts who watch insurance markets, hospital and medical groups are bristling at payment rates Medicare Advantage plans impose and at what they say are onerous requirements for preapproval to deliver care and too many after-the-fact denials of claims.
The insurers say they're just trying to control costs and avoid inappropriate care. The disputes are drawing more attention now, during the annual open enrollment period for Medicare, which runs until Dec. 7.
Stuck in the middle are patients. People whose preferred doctors or hospitals refuse their coverage may have to switch Medicare Advantage plans or revert to the traditional program, although it can be difficult or even impossible when switching back to obtain what is called a "Medigap" policy, which covers some of the traditional plan's cost-sharing requirements.
For example, more than 30,000 San Diego-area residents are looking for new doctors after two large medical groups affiliated with Scripps Health said they would no longer contract with Medicare Advantage insurers.
"The insurance companies running the Medicare Advantage plans are pushing physicians and hospitals to the edge," said Chip Kahn, president and CEO of the Federation of American Hospitals, which represents the for-profit hospital sector.
The insurance industry's lobbying arm, AHIP, said in a February letter to the Centers for Medicare & Medicaid Services that prior approvals and other similar reviews protect patients by reducing "inappropriate care by catching unsafe or low-value care, or care not consistent with the latest clinical evidence."
AHIP spokesperson David Allen said in an email that Medicare Advantage plans are growing in enrollment because people like them, citing surveys conducted by an AHIP-backed coalition.
The vast majority, he wrote, said they were satisfied with their plans and the access to care they provide.
The disputes so far don't appear to center on any particular insurer, region, or medical provider, although both UnitedHealthcare and Humana Inc. — the two largest Medicare Advantage insurers — are among those that have had contracts canceled.
"Many Medicare Advantage plans routinely deny or delay approval or payment for medical care recommended by a patient's physician," Baptist Health said in its statement.
The system's medical group, with nearly 1,500 physicians and other providers, left Humana's network in September.
In a similar move, Brunswick, Georgia-based Southeast Georgia Health System, which includes two hospitals, two nursing homes, and a physician network, warned this fall that it would end its contract with Centene Corp.'s Wellcare Medicare Advantage plans in December, citing what it said was years of "inappropriate payment of claims and unreasonable denials."
In some cases, health systems' threats to abandon Advantage plans — as well as insurers' threats not to include providers in their networks — are negotiating tactics, intended as leverage to win concessions on payment rates or other issues. And some have been resolved. Ohio's Adena Regional Medical Center, for example, said in September it would drop Medicare Advantage plans offered by Elevance Health, formerly known as Anthem Inc., but reinstated them following additional negotiations.
Still, some hospital and policy experts say the conflicts may be the beginning of a trend.
"This seems different," said David Lipschutz, associate director and senior policy attorney at the Center for Medicare Advocacy, who said hospitals and doctors are becoming "much more vocal" about their frustration with some cost-control efforts by Medicare Advantage insurers.
"There have been serious problems with payment suspensions and reviews that annoy the providers. I would not be surprised if we start to see more of this pushback" as the Medicare market becomes more concentrated among a handful of insurers, said Don Berwick, president emeritus and senior fellow at the Institute for Healthcare Improvement and a former CMS administrator.
While availability varies from county to county, Medicare beneficiaries can choose on average among 43 plans, according to KFF. UnitedHealthcare and Humana account for about half of the nationwide enrollment in Advantage plans.
Studies show that Medicare Advantage costs taxpayers more per beneficiary than the traditional program. But the plans enjoy the backing of many lawmakers, especially Republicans, because of their popularity.
The Health and Human Services Department's inspector general reported last year that some Advantage plans have denied coverage for care that should have been provided under Medicare's rules.
The report examined prior authorization requests — a requirement to seek insurers' OK before certain treatments, procedures, or hospital stays — and claims denials, where insurers refuse to pay for all or part of care that's already been performed.
Lawmakers have recently demanded additional information from Advantage insurers about the factors they use to make such determinations.
CMS proposed a rule this month to cap commissions for brokers who sell Medicare Advantage plans and require more detail on how the plans' prior approval programs affect certain low-income enrollees and people with disabilities.
Lipschutz said the HHS inspector general's study may have encouraged hospitals and doctors to be more outspoken.
The inspector general's office found that 13% of the denied requests for treatment it reviewed and 18% of denied claims were for care that should have been covered. Responding in part to that report, the Biden administration issued a rule set to take effect in January that requires Medicare Advantage plans to provide "the same medically necessary care" as the traditional program. Every Advantage insurer must also annually review its own policies to make sure they match those in the traditional program.
The American Hospital Association, while lauding the administration's action, questioned whether it would be enough. In a letter sent last month to CMS, the hospital lobbying group said its members "have heard from some [insurers] that they either do not plan to make any changes to their protocols" or "have made changes to their denial letter terminology or procedures in a way that appears to circumvent the intent of the new rules." The letter urged "rigorous oversight" by CMS.
Allen, the AHIP spokesperson, did not respond to a request to comment on the AHA letter.
MISSOULA, Mont. — An hour before sunrise, Shelly Brost walked a mile in freezing rain to the public assistance office. She was running out of time to prove she still qualified for food aid after being stymied by a backlogged state call center.
Twice, she'd tried to use Montana's public assistance help line to complete an interview required to recertify her Supplemental Nutrition Assistance Program, or SNAP, benefits. Each time, the call dropped after more than an hour on hold.
"I was ready to cry," Brost said as she stood in line with about a dozen other people waiting for the office to open on a recent November morning. "I've got a hungry 13-year-old kid."
Low-income families that need safety-net services, such as food and cash assistance, have become collateral damage in the bureaucratic scramble to determine whether tens of millions of people still qualify for Medicaid after a pandemic-era freeze on disenrollment ended this spring. These are people whose applications and renewal forms have been delayed or lost, or who, like Brost, can't reach overwhelmed government call center workers.
The impact on services for low-income families is an overlooked consequence of the Medicaid "unwinding," which has led to coverage being terminated for millions of people since April, with millions more expected to lose coverage in the coming months.
"The Medicaid unwinding has created huge problems for administrative staff," said Leighton Ku, director of the Center for Health Policy Research at George Washington University's Milken Institute School of Public Health.
Most states rely on the same workers and computer systems to sort eligibility for Medicaid and SNAP, according to the Center on Budget and Policy Priorities, a left-leaning think tank in Washington, D.C. The difficulty of signing up for other public assistance benefits varies, depending on how each state sets up its programs and how well agencies are staffed to handle extra work caused by Medicaid redeterminations.
People seeking public aid have historically encountered long call center wait times and limited options for in-person help. Those long-standing problems have worsened as record numbers of Medicaid recipients seek help with enrollment.
Attorneys and organizations assisting applicants for food benefits in Montana, Missouri, and Virginia, for example, said applications have vanished without a response and phone calls to workers determining eligibility frequently go unanswered.
"Our clients are already living on a razor's edge, and this can just knock them off," said Megan Dishong, deputy director of the Montana Legal Services Association.
SNAP enrollment is about half that of Medicaid. In April, nearly 42 million Americans received food assistance, compared with 87.4 million enrolled in the health coverage program.
SNAP itself has undergone major changes this year — a policy that increased benefits during the pandemic expired, and work requirements have been reinstated. According to the most recent federal data, SNAP enrollment dropped by 1 million from January to August, much less than the decline in Medicaid enrollment that started in April.
Still, official data sources don't capture delays and other difficulties people face in getting benefits.
In Virginia, where local offices of the state Department of Social Services handle Medicaid and SNAP applications, "I've had several clients who have submitted applications and they've just gone into the ether," said Majesta-Doré Legnini, an Equal Justice Works fellow at the Legal Aid Justice Center who works on SNAP issues.
A client applying for assistance for the first time didn't hear anything for three months and had to refile. Another got benefits after 2½ months, after having endured application processing delays, a denial letter, and an appeal. A family with mixed immigration status — the children qualified for benefits — didn't have benefits for eight months after being erroneously cut off and then experienced delays after reapplying.
Virginia is supposed to process each application within 30 days. "Most of my clients have kids that are under 15," Legnini said, and many tell her "they're having trouble getting enough food to feed their kids." The Virginia Department of Social Services did not answer questions from KFF Health News.
In Missouri, a federal lawsuit filed before the unwinding began alleges that a dysfunctional system prevents low-income residents from getting food aid. More than half of Missouri applicants were denied aid in July because they couldn't complete an interview — not because they were ineligible, according to a document filed in the case.
The application of Mary Holmes, a 57-year-old St. Louis woman with throat cancer and other chronic conditions, was denied in February 2022 because she couldn't reach a call center to complete her interview. Holmes repeatedly phoned the call center but waited for hours on hold, often with hundreds of people ahead of her. Her benefits were reinstated after the judge admonished the state for the long waits during a March 2022 hearing. The lawsuit remains open.
Now, with Missouri reassessing the Medicaid enrollment of more than 1 million recipients, advocates said those systemic flaws have escalated into a crisis for the most vulnerable.
"It's a major firestorm with both these things going on at once," said Joel Ferber, director of advocacy for Legal Services of Eastern Missouri, which represents Holmes and the other plaintiffs.
State officials said they had "made significant strides to make interviews more widely available," according to a recent case filing, such as by hiring "outside vendors to handle Medicaid calls to free up more state employees to handle SNAP interviews."
Montana officials said the Medicaid redetermination process similarly collided with an already troubled system in that state.
In September, Charlie Brereton, director of the Montana Department of Public Health and Human Services, told lawmakers the state was working to improve its public assistance help line, "which, frankly, has been plagued with some challenges and issues for many, many years."
Brereton said the agency increased the wages of client coordinators to fill in-person jobs. The state contracted about 50 workers from national agencies to supplement the call center's staff and created a separate queue on its help line for people applying for food or temporary cash assistance.
Jon Ebelt, a Montana health department spokesperson, didn't directly answer how long SNAP and cash assistance callers are waiting on hold on average, but said applications "are being processed in a timely fashion."
People trying to use the state's system said the long waits persisted in November.
Since April, nearly 5,000 fewer Montanans are receiving SNAP benefits. But that doesn't necessarily mean fewer people qualify, said Lorianne Burhop, chief policy officer for the Montana Food Bank Network. Clients without internet access, unlimited cellphone minutes, or the ability to travel to a public assistance office may not be able to jump through the hoops to keep their benefits.
"We've seen consistently high numbers at food banks, whereas SNAP, we've seen trickling down," Burhop said. "I think you have to consider access as a factor that's driving that decline."
In Missoula, DeAnna Marchand waited on hold on Montana's help line as a November deadline approached. She fell into a category of people facing multiple cutoffs: one to recertify food assistance for her and her grandson, another to prove she still qualifies for the Medicaid program that pays for her in-home caregiver, and a third to keep her grandson's Medicaid.
"I don't know what they want," Marchand said. "How am I supposed to get that if I can't talk with somebody?"
After half an hour, she followed prompts to schedule a callback. But an automated voice announced slots were full and instructed her to wait on hold again. An hour later, the call dropped.
At no point along his three-year path to earning a degree in physical therapy has Matthew Lee worried about getting a job.
Being able to make a living off that degree? That's a different question — and the answer is affecting the supply of physical therapists across the nation: The cost of getting trained is out of proportion to the pay.
"There's definitely a shortage of PTs. The jobs are there," said Lee, a student at California State University-Sacramento who is on track to receive his degree in May. "But you may be starting out at $80,000 while carrying up to $200,000 in student debt. It's a lot to consider."
As many patients seeking an appointment can attest, the nationwide shortage of PTs is real. According to survey data collected by the American Physical Therapy Association, the job vacancy rate for therapists in outpatient settings last year was 17%.
Wait times are generally long across the nation, as patients tell of waiting weeks or even months for appointments while dealing with ongoing pain or post-surgical rehab. But the crunch is particularly acute in rural areas and places with a high cost of living, like California, which has a lower ratio of therapists to residents — just 57 per 100,000, compared with the national ratio of 72 per 100,000, according to the association.
The reasons are multifold. The industry hasn't recovered from the mass defection of physical therapists who fled as practices closed during the pandemic. In 2021 alone, more than 22,000 PTs — almost a tenth of the workforce — left their jobs, according to a report by the health data analytics firm Definitive Healthcare.
And just as baby boomers age into a period of heavy use of physical therapy, and covid-delayed procedures like knee and hip replacements are finally scheduled, the economics of physical therapy are shifting. Medicare, whose members make up a significant percentage of many PT practices' clients, has cut reimbursement rates for four years straight, and the encroachment of private equity firms — with their bottom-line orientation — means many practices aren't staffing adequately.
According to APTA, 10 companies, including publicly held and private equity-backed firms, now control 20% of the physical therapy market. "What used to be small practices are often being bought up by larger corporate entities, and those corporate entities push productivity and become less satisfying places to work," said James Gordon, chair of the Division of Biokinesiology and Physical Therapy at the University of Southern California.
There's a shortage of physical therapists in all settings, including hospitals, clinics, and nursing homes, and it's likely to continue for the foreseeable future, said Justin Moore, chief executive of the physical therapy association. "Not only do we have to catch up on those shortages, but there are great indicators of increasing demand for physical therapy," he said.
The association is trying to reduce turnover among therapists, and is lobbying Congress to stop cutting Medicare reimbursement rates. The Centers for Medicare & Medicaid Services plans a 3.4% reduction for 2024 to a key metric that governs pay for physical therapy and other health care services. According to the association, that would bring the cuts to a total of 9% over four years.
Several universities, meanwhile, have ramped up their programs — some by offering virtual classes, a new approach for such a hands-on field — to boost the number of graduates in the coming years.
"But programs can't just grow overnight," said Sharon Gorman, interim chair of the physical therapy program at Oakland-based Samuel Merritt University, which focuses on training health care professionals. "Our doctoral accreditation process is very thorough. I have to prove I have the space, the equipment, the clinical sites, the faculty to show that I'm not just trying to take in more tuition dollars."
All of this also comes at a time when the cost of obtaining a physical therapy doctorate, which typically takes three years of graduate work and is required to practice, is skyrocketing. Student debt has become a major issue, and salaries often aren't enough to keep therapists in the field.
According to the APTA's most recent published data, median annual wages range from $88,000 to $101,500. The association said wages either met or fell behind the rate of inflation between 2016 and 2021 in most regions.
A project underway at the University of Iowa aims to give PT students more transparency about tuition and other costs across programs. According to an association report from 2020, at least 80% of recent physical therapy graduates carried educational debt averaging roughly $142,000.
Gordon said USC, in Los Angeles' urban core, has three PT clinics and 66 therapists on campus, several of whom graduated from the school's program. "But even with that, it's a challenge," he said. "It's not just hard to find people, but people don't stay, and the most obvious reason is that they don't get paid enough relative to the cost of living in this area."
Fewer therapists plus growing demand equals long waits. When Susan Jones, a Davis, California, resident, experienced pain in her back and neck after slipping on a wet floor in early 2020, she went to her doctor and was referred for physical therapy. About two months later, she said, she finally got an appointment at an outpatient clinic.
"It was almost like the referral got lost. I was going back and forth, asking, ‘What's going on?'" said Jones, 57. Once scheduled, her first appointment felt rushed, she said, with the therapist saying he could not identify an issue despite her ongoing pain. After one more session, Jones paid out-of-pocket to see a chiropractor. She said she'd be hesitant to try for a physical therapy referral in the future, in part because of the wait.
Universities and PT programs graduate about 12,000 therapists a year, Moore said, and representatives of several schools told KFF Health News they're studying whether and how to expand. In 2018, USC added a hybrid model in which students learn mostly online, then travel to campus twice a semester for about a week at a time for hands-on instruction and practice.
That bumped USC's capacity from 100 students a year to 150, and Gordon said many of the hybrid students' professional skills are indistinguishable from those of students on campus full time.
Natalia Barajas received her PT doctorate from USC last year and was recently hired at a clinic in nearby Norwalk, with a salary of $95,000, a signing bonus, and the opportunity to earn more in incentives.
She's also managing a lot of debt. Three years of tuition for the USC physical therapy program comes to more than $211,000, and Barajas said she owes $170,000 in student loans.
"If it were about money alone, I probably would have shifted to something else a while ago," Barajas said. "I'm OK with my salary. I chose to do this. But it might not be the perfect situation for everybody."
After years of debilitating bouts of fatigue, Beth VanOrden finally thought she had an answer to her problems in 2016 when she was diagnosed with Hashimoto's disease, an autoimmune disorder.
For her and millions of other Americans, that's the most common cause of hypothyroidism, a condition in which the thyroid, a butterfly-shaped gland in the neck, doesn't produce enough of the hormones needed for the body to regulate metabolism.
There's no cure for Hashimoto's or hypothyroidism. But VanOrden, who lives in Athens, Texas, started taking levothyroxine, a much-prescribed synthetic thyroid hormone used to treat common symptoms, like fatigue, weight gain, hair loss, and sensitivity to cold.
Most patients do well on levothyroxine and their symptoms resolve. Yet for others, like VanOrden, the drug is not as effective.
For her, that meant floating from doctor to doctor, test to test, and treatment to treatment, spending about $5,000 a year.
"I look and act like a pretty energetic person," said VanOrden, 38, explaining that her symptoms are not visible. "But there is a hole in my gas tank," she said. And "stress makes the hole bigger."
Autoimmune diseases occur when the immune system mistakenly attacks and damages healthy cells and tissues. Other common examples include rheumatoid arthritis, lupus, celiac disease, and inflammatory bowel disease. There are more than 80 such diseases, affecting up to an estimated 50 million Americans, disproportionately women. Overall, the cost of treating autoimmune diseases is estimated at more than $100 billion annually in the U.S.
Despite their frequency, finding help for many autoimmune diseases can prove frustrating and expensive. Getting diagnosed can be a major hurdle because the range of symptoms looks a lot like those of other medical conditions, and there are often no definitive identifying tests, said Sam Lim, clinical director of the Division of Rheumatology at Emory University School of Medicine in Atlanta. In addition, some patients feel they have to fight to be believed, even by a clinician. And after a diagnosis, many autoimmune patients rack up big bills as they explore treatment options.
"They're often upset. Patients feel dismissed," Elizabeth McAninch, an endocrinologist and thyroid expert at Stanford University, said of some patients who come to her for help.
Insufficient medical education and lack of investment in new research are two factors that hinder overall understanding of hypothyroidism, according to Antonio Bianco, a University of Chicago endocrinologist and leading expert on the condition.
Some patients become angry when their symptoms don't respond to standard treatments, either levothyroxine or that drug in combination with another hormone, said Douglas Ross, an endocrinologist at Massachusetts General Hospital in Boston. "We will have to remain open to the possibility that we're missing something here," he said.
Jennifer Ryan, 42, said she has spent "thousands of dollars out-of-pocket" looking for answers. Doctors did not recommend thyroid hormone medication for the Huntsville, Alabama, resident — diagnosed with Hashimoto's after years of fatigue and weight gain — because her levels appeared normal. She recently switched doctors and hopes for the best.
"You don't walk around hurting all day long and have nothing wrong," Ryan said.
And health insurers typically deny coverage of novel hypothyroidism treatments, said Brittany Henderson, an endocrinologist and founder of the Charleston Thyroid Center in South Carolina, which sees patients from all 50 states. "Insurance companies want you to use the generics even though many patients don't do well with these treatments," she said.
Meanwhile, the extent of Americans' thyroid problems can be seen in drug sales. Levothyroxine is among the five most prescribed medications in the U.S. every year. Yet research points to some overprescribing of the drug for those with mild hypothyroidism.
A recent study, paid for by AbbVie — maker of Synthroid, a brand-name version of levothyroxine — said a medical and pharmacy claims database showed that the prevalence of hypothyroidism, including milder forms, rose from 9.5% of Americans in 2012 to 11.7% in 2019.
The number of people diagnosed will rise as the population ages, said McAninch. Endocrine disruptors — natural or synthetic chemicals that can affect hormones — could account for some of that increase, she said.
In their search for answers, patients sometimes connect on social media, where they ask questions and describe their thyroid hormone levels, drug regimens, and symptoms. Some online platforms offer information that's dubious at best, but overall, social media outlets have increased patients' understanding of hard-to-resolve symptoms, Bianco said.
They also offer one another encouragement.
VanOrden, who has been active on Reddit, has this advice for other patients: "Don't give up. Continue to advocate for yourself. Somewhere out there is a doctor who will listen to you." She has started an alternative treatment — desiccated thyroid medication, an option not approved by the FDA — plus a low dose of the addiction drug naltrexone, though the data is limited. She's feeling better now.
Research of autoimmune thyroid disease gets little funding, so the underlying causes of immune dysfunction are not well studied, Henderson said. The medical establishment hasn't fully recognized hard-to-treat hypothyroid patients, but increased acknowledgment of them and their symptoms would help fund research, Bianco said.
"I would like a very clear, solid acknowledgment that these patients exist," he said. "These people are real."
For an illustrated version of this article, click here.
Republican presidential candidate Ron DeSantis and Democratic Gov. Gavin Newsom — political rivals from opposite coasts and proxies for red and blue America — are set to square off for a first-of-its-kind debate Nov. 30 in Georgia.
Newsom, a liberal firebrand in his second term as governor of California, isn't running for president in 2024. But he goaded DeSantis, in his second term as governor of Florida, to go mano a mano. "I'll bring my hair gel. You bring your hairspray," he taunted on social media.
The matchup promises to be a heated brawl between rising political stars who lead two of the nation's most populous and diverse states. And it will mark the first time the politicians meet in person even as they have very publicly traded barbs and insults, in recent weeks attacking each other in fundraising videos and campaign ads.
Front and center will be homelessness and healthcare, top priorities for voters — and issues that have largely defined the governors' policies and leadership styles. From abortion to covid-19 vaccines, Newsom and DeSantis could not be further apart.
Earlier this year, DeSantis blasted California for being too generous with public benefit programs, such as Medicaid, which the Golden State has expanded to all eligible residents regardless of immigration status. That sweeping policy takes effect in January and goes well beyond the optional expansion of Medicaid that the Affordable Care Act offered states. In Florida, one of 10 states that have refused to expand Medicaid under Obamacare, DeSantis wears the state's 11% rate of uninsured residents as a badge of honor.
"We're not going to be like California and have massive numbers of people on government programs without work requirements," DeSantis said at a presidential primary debate in Southern California earlier this year.
DeSantis has led his state to restrict abortion and gender-affirming care and to ban covid-related mask and vaccine mandates.
Newsom, a slick and brash surrogate for Democratic President Joe Biden, has slammed DeSantis for putting Floridians in danger and stripping them of their rights.
"Join us in California, where we still believe in freedom," Newsom said in a political ad earlier this year.
Newsom has earned the moniker of "healthcare governor" by catapulting the issue to the top of his policy priorities. He made California an abortion sanctuary and is dramatically expanding healthcare benefits. He had promised to bring single-payer healthcare to the nation's most populous state while campaigning for his first term, but that idea hit stiff political opposition early in his tenure. And now Newsom boasts about bringing the state's uninsured rate to an all-time low of 6.5% by expanding coverage in other ways.
These issues are expected to take center stage during the nationally televised 90-minute debate on Fox News, which could have major reverberations for the presidential contest next year and could even help shape the 2028 field of White House contenders.
In advance of the showdown, KFF Health News analyzed 10 of the governors' top healthcare positions and how their policies have improved — or hindered — the health of the residents they represent.
Obamacare
Florida
DeSantis has refused to expand Medicaid eligibility to more people under the Affordable Care Act. Partly as a result, more than 3 million Floridians had coverage through the federal Obamacare exchange as of February, more than any other state. Florida does not have a state-based exchange or offer state-sponsored subsidies.
California
The state has enthusiastically embraced the Affordable Care Act, expanding Medicaid while setting up its own insurance exchange, Covered California. Under Newsom, it has also gone well beyond the provisions of Obamacare and created a state requirement for Californians to have health insurance after the federal mandate was eliminated.
Abortion
Florida
DeSantis approved legislation in April banning abortions after six weeks of pregnancy. However, the Florida Supreme Court has taken up a challenge to the 15-week ban introduced in 2022, which will determine if the six-week ban can take effect.
California
Newsom spearheaded the effort in 2022 to amend the state constitution to enshrine the right to abortion and birth control. He also approved $60 million to help uninsured patients and people from out of state pay for abortions in California, and signed reproductive healthcare laws, including one protecting doctors who mail abortion pills to other states.
Transgender Care
Florida
Under DeSantis, Florida passed a law this year banning gender-affirming healthcare for trans minors and mandating that adult patients sign informed consent forms before starting or continuing hormone treatment. The law also restricts who can order hormone therapy to physicians and prohibits the use of telehealth for new prescriptions. A federal lawsuit challenging the law is set to go to trial in mid-December.
California
Newsom and other state leaders have amended state law to ensure all California adults and children are entitled to gender-affirming healthcare services. And insurance companies doing business in California must include information on in-network providers for gender-affirming services by 2025. State healthcare agencies are designing "enforceable quality standards" to ensure trans patients have access to comprehensive care.
Homelessness
Florida
DeSantis has not declared homelessness a priority. In a video filmed on the streets of San Francisco and posted to social media in June, DeSantis used the topic as a campaign cudgel to criticize what he called "leftist policies" in California. Florida is experimenting with using Medicaid funds to address homelessness, but the program is limited. Nearly 26,000 people are homeless in Florida, or 12 of every 10,000 residents.
California
Newsom has plowed more than $20 billion into the homelessness crisis, with billions more for health and social services. For example, some homeless Californians can get social services through the state's Medicaid program, such as money for rental security deposits, utility payments, and first and last month's rent. Newsom also led a new state initiative that could force some homeless people into mental health or addiction treatment. More than 171,000 people are homeless in California, or 44 of every 10,000 residents.
Mental Health
Florida
DeSantis has kept his pledge to advocate for mental health treatment programs as governor, although Florida still ranks 43rd nationally in access to mental healthcare and has the fourth-highest rate of adults with mental illness who are uninsured, according to the Miami Center for Mental Health and Recovery. Under DeSantis, Florida has increased state funding for mental health programs in schools and peer-to-peer mental health services for first responders, and directed funding to suicide prevention.
California
Newsom in 2020 signed one of the nation's strongest mental health parity laws, which requires insurance companies to cover mental health and substance use disorders just as they would physical health conditions. He is funding a $4.7 billion initiative to provide mental health treatment in schools. Newsom is also leading the campaign for a statewide, $6.4 billion bond measure in 2024 to revamp and expand community-based behavioral health programs, including thousands of new treatment beds.
Addiction
Florida
Florida's drug overdose death rate was 37.5 per 100,000 people in 2021. In August, DeSantis announced a new statewide addiction recovery program billed as a "first of its kind" in the United States, using peer counselors, medication-assisted treatment, and a coordinated network of support services. DeSantis also authorized Florida counties to adopt needle exchange programs in 2019 to reduce the spread of blood-borne diseases and encourage addiction treatment.
California
California's drug overdose rate was 26.6 per 100,000 people in 2021. Newsom is sending the state Highway Patrol and National Guard into San Francisco to combat the open-air fentanyl trade and is boosting addiction recovery programs statewide. But he vetoed legislation last year that would have allowed Los Angeles, San Francisco, and Oakland to establish safe injection sites.
Prescription Drugs
Florida
A DeSantis proposal submitted to the FDA in 2020 includes allowing imported medications from Canada. A new state law also sets price limits for pharmacy benefit managers — intermediaries between insurers, pharmacies, and manufacturers — and creates new rules for them around pricing transparency. The law also requires pharmaceutical companies to disclose significant price hikes.
California
Newsom is spearheading a $100 million, first-in-the-nation initiative that puts California in the generic drugmaking business, beginning with insulin and the opioid reversal drug naloxone. California already had a pricing transparency law when Newsom took office. This year, he signed a law that tightens state regulations for pharmacy benefit managers.
Healthcare Affordability
Florida
In 2019, DeSantis signed the Patient Savings Act, which allows health insurers to share cost savings with enrollees who shop for healthcare services, such as imaging and diagnostic tests. Under his leadership, Florida lawmakers have also allowed short-term health plans lasting less than a year and direct healthcare agreements between a patient and a healthcare provider that are not considered insurance and are not subject to Florida's insurance code.
California
One of Newsom's first healthcare initiatives was to fund state-financed health insurance subsidies for low- and middle-income residents who purchase insurance through Covered California. Newsom this year also agreed to lower copays and get rid of some deductibles for plans sold through the exchange. California's newly created Office of healthcare Affordability is capping industry cost increases and could potentially regulate health industry consolidation. California bans short-term health plans.
Public Health
Florida
DeSantis signed legislation in 2021 banning government, schools, and private employers from requiring covid vaccinations. In 2023, he pushed legislators to adopt laws prohibiting certain vaccine and mask requirements. He also formed a Public Health Integrity Committee led by his hand-picked surgeon general, Joseph Ladapo, whose official guidance on covid vaccines contradicts the CDC's recommendations. The Sunshine State's covid-19 vaccine booster rate for residents age 5 and older is 12.4%.
California
Newsom became the first U.S. governor to issue a statewide stay-at-home order at the start of the covid-19 pandemic. He pushed strong vaccination and mask mandates and accused DeSantis of being weak on public health. Newsom has also signed laws strengthening childhood vaccination mandates, including a measure that cracks down on bogus medical exemptions granted by doctors. The Golden State's covid-19 vaccine booster rate for residents ages 5 and older is 21.9%.
Immigrant healthcare
Florida
With DeSantis making immigration a priority, legislators passed a state law requiring all Florida hospitals to ask on their admission forms whether a patient is a U.S. citizen or lawfully present in the country. Doctors, nurses, and health policy experts say the law targets marginalized people who already have difficulty navigating the healthcare system and will further deter them from seeking care.
California
Beginning in January, all immigrants who meet income qualifications will be eligible for the state's Medicaid program. Before Newsom took office, California had already expanded eligibility to immigrant children through age 18 living in the state without authorization. Newsom then signed laws expanding the program to young adults up to age 26, adults 50 and older, and, later, immigrants of any age who otherwise meet eligibility requirements.
On the presidential campaign trail, Republican Ron DeSantis touts himself as a champion of medical freedom, outlawing vaccine mandates and protecting doctors who refuse to provide certain medical treatments on moral grounds.
His record as Florida's governor suggests a presidency that would prioritize individual freedom over public health, but his push for such freedoms ends when it comes to abortion and treatment for gender dysphoria. In Florida, he has pushed restrictions on those medical services.
Critics contend those were the wrong priorities in a state where 7.4% of children had no medical insurance as of 2022. Since then more than 250,000 Florida children have lost the health insurance they had through Medicaid.
The DeSantis campaign did not return multiple requests for comment on the governor's health policy campaign plans.
As he sets his sights on the White House, here's a recap of his healthcare record:
Public Health
At campaign stops, DeSantis talks often of his handling of the COVID-19 pandemic even as the issue has largely disappeared from the public's radar.
DeSantis initially followed federal health guidance and ordered a statewide lockdown in April 2020. But the governor quickly changed course, beginning a phased reopening of Florida just one month later. Around then, Florida's then-surgeon general, Scott Rivkees, was hustled out of a news conference and hardly seen for months after he said residents might have to socially distance themselves from others and wear masks until vaccines became available.
DeSantis did initially champion COVID-19 vaccines, especially for Florida's older adults. That changed in 2021, when DeSantis appointed Joseph Ladapo as his next surgeon general. A Harvard-trained doctor, Ladapo had gained prominence as a skeptic of the scientific consensus on how to treat and prevent the spread of the virus.
Subsequently, Florida was the only state not to preorder COVID-19 vaccine doses for children under 5 when those became available in 2022. At news conferences, DeSantis publicized COVID-19 treatments such as monoclonal antibodies but didn't urge residents to get vaccinated.
Later, DeSantis' health department recommended against vaccines for young men and against people under 65 getting updated vaccines, guidance that contradicted that of the U.S. Centers for Disease Control and Prevention.
DeSantis as president would likely downplay the importance of the CDC, which is an advisory body, and instead might require states to invest more in public health infrastructure, said Jay Wolfson, a public health professor at the University of South Florida.
The pandemic exposed that Florida's public health system had been underfunded and largely ignored by successive administrations, including DeSantis', Wolfson said. Having led Florida through hurricanes Ian and Idalia, DeSantis may want a similar response to public health emergencies like COVID-19, where states take the lead and the federal government's role is to support them, he said.
Abortion
DeSantis has said he supports a "culture of life." As governor, he's signed the most anti-abortion modern-day legislation Florida has seen. But he has faced pushback from the anti-abortion crowd for his initial reluctance to endorse a federal ban and from other anti-abortion Republicans for signing a ban on most abortions after six weeks of pregnancy, which some have said is too extreme.
That bill, which DeSantis signed this year, has exceptions for rape, incest, and human trafficking up to 15 weeks into the pregnancy if the woman seeking an abortion has documentation proving her circumstances.
That bill has not taken effect, because of a pending court challenge over Florida's current 15-week abortion ban, which DeSantis signed in 2022. That law does not have any exceptions for victims of rape or incest but does have exceptions for the health of the mother.
Opponents of Florida's abortion restrictions say the threat of a felony arrest for violating the law makes it difficult for a doctor to provide an abortion they think is necessary.
After months of declining to directly answer whether he would support a nationwide abortion ban, DeSantis said during the second GOP presidential primary debate that he would sign a 15-week federal abortion ban.
The issue remains a difficult one for Republicans. A recent successful ballot measure in Ohio suggests that preserving abortion rights remains an effective issue for Democrats to drive turnout.
With Florida's ban held up in legal challenges, the state continues to be one of the biggest providers of abortions in the Southeast. About 65,000 abortions have been recorded by the Florida Agency for healthcare Administration so far this year. Almost 6,000 were for out-of-state residents.
Medicaid
Even as states long opposed to Medicaid expansion such as South Dakota and North Carolina have recently reversed course, Florida remains in a group of 10 holdout states that refuse to expand the program as part of the Affordable Care Act.
The act provides extra federal funding to states that increase eligibility. In Florida's case, doing so would help an estimated 514,000 residents gain health coverage, according to an October analysis by the Urban Institute.
Florida has had one of the highest child uninsured rates for many years, higher than poorer states such as neighboring Alabama, another state that has refused to expand Medicaid, said Joan Alker, executive director at the Georgetown University Center for Children and Families.
Almost 823,000 Floridians have lost Medicaid coverage since April, when states could remove recipients for the first time since the pandemic began. That includes at least 250,000 children. It's unknown how many of those children are now covered through their parents' insurance. But despite the state's reassurance that kids who lose coverage would be referred to child health insurance programs like KidCare, Democratic state and federal lawmakers point to enrollment in the state program rising by only 25,000 children.
Florida is also the only state that has not taken advantage of federal waivers that would enable the state to keep more people on Medicaid while it transitions back to normal Medicaid operation.
Wolfson said Florida's position reflects DeSantis' belief that the program has become "an expensive and overextended giveaway" that discourages people from working hard to better their lives.
"We're not going to be like California and have massive numbers of people on government programs without work requirements," DeSantis said during the second Republican debate when asked why Florida's uninsured rate — 11.2% in 2022, according to U.S Census Bureau estimates — was higher than the national average, which was 8%.
DeSantis has, however, approved bills that expanded Medicaid coverage based on needs, an approach that may be more illustrative of his handling of the health insurance program should he end up in the White House.
In 2021, DeSantis signed a bill to extend postpartum Medicaid coverage to up to 12 months. This year, he approved legislation for Medicaid to cover glucose monitors and for family members who are 18 or older to be able to be trained and paid under Medicaid as home health aides for medically fragile child relatives.
DeSantis also signed a bill to make more lower-income families eligible for KidCare, a set of child health insurance programs.
Gender Dysphoria Care
Like other GOP-led states, Florida has restricted the rights of transgender minors to access treatments such as puberty blockers and hormone therapy.
Florida health officials in 2022 approved rules prohibiting minors from accessing treatment for gender dysphoria. They then in 2023 prohibited minors from accessing that treatment even in clinical trials.
This past legislative session, Florida lawmakers passed a bill codifying that rule, which DeSantis signed into law. The decision runs counter to recommendations from major medical organizations. The legislation also requires that, for adults, gender dysphoria care, which the state calls "sex-reassignment prescriptions or procedures," can be administered only by a physician.
In 2022, DeSantis' administration published a report that created the foundation for a rule that prohibited Medicaid from covering gender dysphoria treatments for both minors and adults. To create the report, the Florida health agency veered from its standard protocol and brought in consultants who had known views that ran counter to major medical organizations' guidance.
A judge has since struck that Medicaid ban down, but lawyers are arguing in court that DeSantis' administration has been willfully defying the order and has continued to implement the Medicaid ban.
Medical Freedom
Earlier this year, DeSantis declared Florida the "medical freedom" state as he signed into law protections for medical providers who turn away patients on "conscience" grounds.
The law provides similar protections for insurance companies.
Opponents of the legislation worry it will allow doctors to discriminate against LGBTQ+ people or other groups. The legislation does not allow someone to opt out of providing care because of "race, color, religion, sex, or national origin."
Federal laws protect healthcare workers from having to provide abortions if doing so goes against their personal beliefs. Florida's new law is much broader, allowing a medical professional to deny nearly any procedure if it goes against their conscience.
This article was produced in partnership with the Tampa Bay Times.
For 35 years, Angela Jemmott and her five brothers paid premiums on a long-term care insurance policy for their 91-year-old mother. But the policy does not cover home health aides whose assistance allows her to stay in her Sacramento, California, bungalow, near the friends and neighbors she loves. Her family pays $4,000 a month for that.
"We want her to stay in her house," Jemmott said. "That's what's probably keeping her alive, because she's in her element, not in a strange place."
The private insurance market has proved wildly inadequate in providing financial security for most of the millions of older Americans who might need home health aides, assisted living, or other types of assistance with daily living.
For decades, the industry severely underestimated how many policyholders would use their coverage, how long they would live, and how much their care would cost.
And as Jemmott belatedly discovered, the older generation of plans — those from the 1980s — often covered only nursing homes.
Only 3% to 4% of Americans 50 and older pay for a long-term care policy, according to LIMRA, an insurance marketing and research association. That stands in stark contrast to federal estimates that 70% of people 65 and older will need critical services before they die.
Repeated government efforts to create a functioning market for long-term care insurance — or to provide public alternatives — have never taken hold. Today, most insurers have stopped selling stand-alone long-term care policies: The ones that still exist are too expensive for most people. And they have become less affordable each year, with insurers raising premiums higher and higher. Many policyholders face painful choices to pay more, pare benefits, or drop coverage altogether.
"It's a giant bait-and-switch," said Laura Lunceford, 69, of Sandy, Utah, whose annual premium with her husband leaped to more than $5,700 in 2019 from less than $3,800. Her stomach knots up a couple of months before the next premium is due, as she fears another spike. "They had a business model that just wasn't sustainable from the get-go," she said. "Why they didn't know that is beyond me, but now we're getting punished for their lack of foresight."
The glaring gaps in access to coverage persist despite steady increases in overall payouts. Last year, insurers paid more than $13 billion to cover 345,000 long-term care claims, according to industry figures. Many policyholders and their relatives reported that their plans helped them avert financial catastrophes when they faced long-term care costs that would have otherwise eviscerated their savings.
But others have been startled to learn that policies they paid into over decades will not fully cover the escalating present-day costs of home health aides, assisted living facilities, or nursing homes. And in other cases, people entitled to benefits confront lengthy response times to coverage requests or outright denials, according to records kept by the National Association of Insurance Commissioners, the organization of state regulators.
Jesse Slome, executive director of the American Association for Long-Term Care Insurance, an industry trade group, said long-term care was the most challenging type of insurance to manage. "You need multiple crystal balls," Slome said. "And you have to look 20 years into the future and be right."
The Pandemic Paused a Long-Term Decline
The industry's wobbly finances haven't steadied despite a brief profitable surge during the coronavirus pandemic. Earnings rose because thousands of people who were drawing benefits, many in nursing homes or assisted living facilities, died from covid-19, and other policyholders died before using their insurance. Others stopped tapping their benefits because they fled facilities and went to live with their families, who provided unpaid care.
Overall, earnings went from $2.3 billion in losses in 2019 to two years of profits totaling $1.1 billion, before receding into the red in 2022 by losing $304 million, according to Fitch Ratings.
Still, none of that was enough to reverse the industry's long-term decline. Doug Baker, a director in Fitch's U.S. life insurance group, said long-term care insurance "is one of the riskiest in our universe" because of the lingering financial burden from underestimating the number of people who would tap their policies.
More insurers now offer hybrid plans that combine life insurance with long-term care. Those policies are less generous than the ones offered a decade ago — and using the long-term care benefit drains some or all of the money policyholders hoped to leave to their heirs.
"I don't think people will offer unlimited again," said Tom McInerney, the chief executive of Genworth Financial, which suspended selling plans through brokers in 2019. "One way or another, taxpayers are going to have to pay more for long-term care needs of the baby boomers."
Many experts believe it's untenable to expect that a private insurance market can protect most people from the growing burden of long-term care costs.
"The whole situation is poorly suited to that kind of insurance offering," said Robert Saldin, a political science professor at the University of Montana who studies the industry.
Falling Profits and Skyrocketing Premiums
Starting in the 1970s, long-term care insurance was touted as a way to keep older people from eroding their retirement savings or resorting to Medicaid, the state-federal program for the poor and disabled. Early plans were limited to nursing home care but later expanded to cover in-home care and assisted living centers. Sales of the policies doubled from 1990 to 2002.
As demand grew, however, there were signs the industry had vastly miscalculated the cost of its products. Insurers set early policy prices competitively low, based on actuarial models that turned out to be markedly inaccurate. Forecasters' estimates of policyholders' longevity were wrong. U.S. life expectancy increased to nearly 77 years in 2000 from about 68 years in 1950, federal records show. And as people lived longer, their need for care increased.
Industry officials also failed to account for the behavior of savvy consumers determined to keep their long-term care coverage. Insurers counted on policy lapse rates — people giving up their policies or defaulting on payments — of about 4% annually. The actual lapse rate was closer to 1%.
As the miscalculations sent profits plummeting, insurers raised premiums or exited the market. By 2020, sales of traditional policies had dropped to 49,000 and the number of carriers offering plans had fallen to fewer than a dozen from more than 100.
Premiums for some consumers doubled in just a year or two. Three class-action lawsuits accused Genworth of failing to disclose to policyholders that it had planned multiyear rate increases, leaving them without information they needed to decide whether to keep their policies. Genworth settled the lawsuits with offers to allow customers to adjust their policies, and in some cases it paid cash damage to those who accepted reduced benefits. The company did not admit wrongdoing.
The increases continue. AM Best, a rating agency, said in a report last November that Genworth "will continue to need annual rate increases for at least several more years to reach economic break-even."
Prices for new policies have jumped, too. A decade ago, a couple aged 55 could expect to pay about $3,725 a year for a policy that included $162,000 in total benefits and 3% annual inflation protection, according to the American Association for Long-Term Care Insurance. Today, a policy that is virtually the same would cost $5,025, 35% more, even as rising health costs and inflation have eroded the value of the benefits.
And that's only for the people who can qualify. To limit their losses, insurers have narrowed the eligible pool of clients. In 2021, about 30% of applicants ages 60 to 64 were denied long-term care insurance. For applicants 70 to 74, the rejection rate was 47%. Even among people in their 50s, more than 1 in 5 were turned down. Chronic health conditions, a history of stroke or diabetes, or psychiatric illness may all be grounds for disqualification.
At the same time, insurers began scrutinizing claims more closely. "They tightened their belts," said Alan Kassan, a senior partner with the California law firm Kantor & Kantor, which represents clients challenging denials. "Then they tightened their claim administration and started denying claims more and more."
Despite efforts to limit liability, financial problems forced several high-profile insurance providers to drastically revise policy terms and premiums or go into insolvency, affecting the investments of thousands of clients.
They included Alice Kempski, a retired nurse who, after her husband died, bought a policy from the insurance company Penn Treaty and American Network in 2004 on the advice of a financial adviser, paying premiums of $180 a month for 16 years. By 2017, she was hobbled by osteoporosis and was struggling to manage her multiple medications, according to her daughter, Ann Kempski. She sold the family home in Wilmington, Delaware, in 2017 and, now needing help bathing, moved to an assisted living center there. But when the family tried to file a claim, they discovered that Penn Treaty was insolvent and the policy had been taken over by the Pennsylvania state insurance guaranty fund.
The fund had frozen Kempski's benefits and increased her premiums to about $280 a month, her daughter said. Her doctor told Penn that she had "mild dementia" and osteoporosis and should be in an assisted living facility. But the insurer said that there was not enough evidence that she needed help with two daily living activities or had severe cognitive impairment, conditions that would trigger coverage, according to correspondence between Kempski and the company.
Kempski was paying roughly $5,400 a month out-of-pocket to the assisted living center. She moved in with her daughter when the pandemic hit, but she continued to pay full rent to the facility to save her spot until she returned in 2021. In March of that year, when her daughter was preparing to refile a claim for long-term care insurance and her premiums had reached $320 a month, Kempski had a massive stroke. She died the next month. The insurer never paid for any of her care.
Coverage in a Facility but Not at Home
The policy held by Angela Jemmott's mother, Jewell Thomas, went unused for a different reason: Like many older policies, it covered only skilled nursing care in a facility. Her children had purchased the policy after Thomas' husband died at 56.
But decades later, once Thomas developed dementia in her 80s, her children realized how desperately their mother wanted to stay home. Jemmott said they tried to add a rider to the policy to cover home care but were told that their mother's age (older than 75) barred add-ons. Now the siblings jointly pay about $4,000 a month for two home health aides, while still paying the insurance premium of more than $2,500 a year. "We feel like if we stop paying it, another unforeseen need will arise and cause us to wish we kept it," Jemmott said.
Not all policyholders are displeased.
Bert Minushkin, of Royal Palm Beach, Florida, paid monthly premiums for 27 years, beginning in 1993 when the policy was offered as a benefit by Westinghouse Electric Corp., where he worked as a nuclear engineer. Over time, he paid about $120,000 toward the policy, said his daughter Lisa Heffley, 61, of Louisville, Kentucky.
Diagnosed with dementia, Minushkin began declining swiftly in 2019. His wife spent $220,000 on assisted living facilities and private aides for him over three years, with about $90,000 of the cost offset by his policy, Heffley said. He died in February 2022 at age 91.
"He didn't break even, but thank God he had it," she said.
Turning to Crowdfunding
Many experts say what's needed is a government-subsidized or public program that requires people to carry long-term care insurance, as the Netherlands and Singapore have. But federal efforts to create such a system, including the CLASS Act, which was repealed in 2013, and the WISH Act, introduced in 2021, have failed to gain traction in Congress. At the state level, Washington this summer started a first-in-the-nation program that will provide long-term care benefits for residents who pay into a fund, but it is voluntary, and the maximum benefit of $36,500 will not cover a year in most assisted living facilities.
Lack of a safety net leaves some people unprotected, like Jeffrey Tanck, a real estate broker in Washington, D.C. In 2021, his mother, Sue Tanck, at 75, suffered a serious fall, leaving her with broken arms and a traumatic brain injury. She had been the primary caretaker for his father, Roger, then 77, who had rapidly worsening dementia.
Without warning, Jeffrey Tanck had to assume charge of his father's care, moving him into an assisted living center in Ocala, Florida, that now charges $4,600 a month, and had to get his mother into a skilled nursing facility paid for by Medicaid. With no money to cover his father's costs until he sold their house, Tanck resorted to a plea on the crowdfunding site GoFundMe.
Wanting to shield himself from a similar financial crisis somewhere down the road, Tanck, who is 51, applied for long-term care insurance, only to be denied. The reason? He takes antidepressants, which help him cope with the anxiety and stress of caring for his parents.
"What are people supposed to do?" Tanck asked. "I'm going to need something."
The last time I stepped on a plane for vacation, for fun, was more than three years ago. I haven't been able to visit California, whose coast I adore. Nor Rome, where my husband and I lived for some time.
And yet, I'm told, I've been on a journey. Two journeys, actually: First, a "traumatic brain injury journey," experienced at Johns Hopkins Hospital after I banged my head and developed trouble with my balance and gait. More recently, I've been a traveling companion on my husband's "cancer journey" at Memorial Sloan Kettering, in New York City.
These are two of the highest-ranked hospitals in the country. The care was excellent in both places. But neither of these journeys resembled our bike ride in Ireland or the wine-tasting trip in Sonoma a few years before.
So much of being seriously ill has been rebranded in American health care as a kind of adventure. Experts speak of stroke journeys. Hospital systems invite people on kidney transplant journeys. The language has trickled down into advertising: Take a hair loss journey or a weight loss journey (newly popular because of Wegovy and similar drugs). The heart failure journey even comes with a map.
A map? But on these journeys, you don't get to go anywhere — except maybe the hospital or doctor's office, which is likely, too, to have bought into the travel concept. In the past two decades, American hospitals have gotten into the business of hotel-like hospitality (illness can be fun!) rather than confine themselves to the business of disease (what a downer). And although the care might stay solid, the focus on luxurious amenities and the fancy new buildings that house them is one of the factors that have helped send costs for patients soaring that much higher, to prices well above those in other developed countries.
In this version of health care, I'm no longer a patient. I'm a client, a customer, or (worse) a guest, no matter that I didn't choose this journey cum illness. I appreciate a little luxury and privacy as much as the next person. But, at a time when Americans' life spans are getting shorter and 4 in 10 adults say they've delayed or gone without necessary care because of cost, is it worth it?
In recent years, tight budgets, staffing shortages, and burnout have hit American hospitals. At the same time, many health centers in the U.S. — including the most prestigious ones, and even some community hospitals — have morphed into seven-star hotels. New hospital buildings, such as recent projects at the University of Michigan hospital system and Valley Hospital in Paramus, New Jersey, offer all-private rooms, in many cases with couches and flat-screen TVs. A hospital might now boast about its views, high-thread-count sheets, or food provided by a Michelin-starred chef.
Those commissioning and designing these pavilions cite research showing that private rooms are better for healing, because they offer a better chance at sleep and a lower chance of infection. (Actually, the evidence is pretty murky.)
But we're suckers for this type of thing, and the industry knows that even small comforts can make us feel better, regardless of whether we're actually getting better. In 2008, researchers at the National Bureau of Economic Research estimated that a hospital investing in amenities would increase demand by 38%, whereas a similar investment in clinical quality would lead to only a 13% increase. More recently, hospital executives told The Boston Globe that the main reason hospitals have moved in this direction is that "people's expectations have changed," and it creates a "competitive advantage" that can be marketed to potential customers.
And so the Mayo Clinic now offers complimentary concierge services, which can help with recommending nearby restaurants and finding pet care. I think that's the hospitality version of what used to be called the hospital "help desk," whose function was merely to explain to visitors how to get to patient rooms. Cleveland Clinic, which employs a team of curators, owns one of the largest contemporary art collections in the region, and its leaders see that collection as one tool for "positively affecting patient outcomes." Patients at Cedars-Sinai can experience its "therapeutic art collection" of Chagalls, Picassos, and Oldenburgs.
Hospital food has gotten so good that in some areas people go to their local hospital forhaute cuisine rather than medical needs. And when you look at the numbers on your hospital bill, remember that all of this adds up. For the amount that American patients (or their insurers) pay for some luxury hospital journeys, they could sign up for a Virgin Galactic suborbital joy ride.
This transformation from hospital to hospitality has filled up hospital C-suites with chief experience officers, whose function is to "manage patients' experiences throughout their healthcare journey," as described by the publication HealthTech. The Cleveland Clinic was the first major academic medical center to add one, back in 2007; now some health systems hire for this and similar positions directly from the hospitality industry, picking people who'd previously been managers at a Ritz-Carlton or a Trump hotel.
The American Hospital Association acknowledges and defends the transformation. "These are not just ‘nice to haves,'" Nancy Foster, AHA's vice president of quality and patient-safety policy, wrote to me in an email. "Actions hospitals can take to reduce stress and provide other psychological support can have a meaningful impact on one's physical and behavioral health, including the ability to recover more rapidly." But pretending that illness is an Abercrombie & Kent safari is harmful. These amenities have a cost, and they are not worth nearly what we're paying for them as we're billed for $100,000 joint replacements and $9,000 CT scans. Room charges in many hospitals can exceed $1,000 a night. And "facility fees" for outpatient procedures and even office visits can reach hundreds of dollars, and simply don't exist elsewhere. A hospital's function is to diagnose and to heal, at a price that sick people can afford. I dream of a no-frills Target- or Ikea-like hospital for care.
That doesn't mean hospitals need to resemble prisons. Hospitals certainly have room to improve on breakfasts featuring Lilliputian plastic cups of orange juice and rubbery eggs. But to understand one of the many reasons Americans pay so much for health care, consider this: The best hospitals in Europe are utilitarian structures that most resemble urban high schools. When I got stitches for a deep cut in my forehead in Gemelli Hospital — where the pope gets health care — I sat on a gurney in a big, dark room with other patients.
Instead of providing free coffee and a piano in a soaring, art-filled marble lobby, how about focusing on the very basic things that health systems in the U.S. should do, but — in my experience — in many cases do not, like making it easier for patients to schedule appointments? Shortening the now lengthy wait times to see physicians who take insurance plans? Paying for adequate staffing on nights and weekends, so patients don't linger in bed pointlessly for two days until social workers return on Monday? Or ending those two-day stays in emergency rooms when all inpatient beds are full? (Hotels aspire to run at full occupancy to maximize revenue; hospitals, I'd argue, should not.)
This winter, I'm planning a journey for which I look forward to some good food and art. We haven't yet determined the exact destination, but it will not be a U.S. hospital.
The hospital charged $9,520.02 for the blood tests and pathology services. The insurer paid $4,310.38, leaving the patient with a lab bill of $2,390.12.
This article was published on Tuesday, November 21, 2023 in KFF Health News.
It was January and Ahmed was at an OB-GYN's office near her home in Venus, Texas, for her first prenatal checkup. After an ultrasound, getting anti-nausea medication, and discussing her pregnancy care plan, she said, a nurse made a convenient suggestion: Head to the lab just down the hall for a standard panel of tests.
The lab was inside Texas Health Hospital Mansfield, which opened in December 2020 in a Dallas-Fort Worth suburb. Ahmed, just eight weeks pregnant, said the doctor told her everything about the visit was routine. "Nothing really stood out," Ahmed said. "And, of course, there's just a lot of excitement, and so I really didn't think twice about anything."
Her blood tests checked for multiple sexually transmitted infections, her blood type, and various hormones. Within days, Ahmed began bleeding and her excitement turned to fear. A repeat ultrasound in early February showed no fetus.
"My heart kind of fell apart at that moment because I knew exactly what that meant," she said. She would have a miscarriage.
Then the bills came.
The Patient: Reesha Ahmed, 32, has an Anthem Blue Cross and Blue Shield policy through her employer.
Medical Services: An analysis of Pap smear results and several blood tests in tandem with Ahmed's initial prenatal visit, including complete blood count, blood type, and testing for STIs such as hepatitis B, syphilis, and HIV.
Service Provider: Ahmed got her tests at Texas Health Mansfield, a tax-exempt hospital jointly operated by Texas Health Resources, a faith-based nonprofit health system, and AdventHealth, another religious nonprofit.
Total Bill: The hospital charged $9,520.02 for the blood tests and pathology services. The insurer negotiated that down to $6,700.50 and then paid $4,310.38, leaving Ahmed with a lab bill of $2,390.12.
What Gives: Ahmed's situation reveals how hospital-based labs often charge high prices for tests. Even when providers are in network, a patient can be on the hook for thousands of dollars for common blood tests that are far cheaper in other settings. Research shows hospitals typically charge much more than physicians' offices or independent commercial labs for the same tests.
The situation was particularly difficult for Ahmed because she had lost the pregnancy.
"To come to terms with it mentally, emotionally, physically — dealing with the ramifications of the miscarriage — and then having to muster up the fighting strength to then start calling your insurance, and the billing department, the provider's office, trying to fight back a bill that you don't feel like you were correctly sent? It's just, it's a lot," she said.
In Texas, the same lab tests were at least six times as expensive in a hospital as in a doctor's office, according to research from the Health Care Cost Institute, a nonprofit that examines health spending.
The markup can be even higher depending on the test. HCCI data, based on 2019 prices, shows the median price for a complete blood count in Texas was $6.34 at an independent lab and $58.22 at a hospital. Texas Health charged Ahmed $206.69 for that test alone.
"It is convenient to get your lab done right in the same building," said Jessica Chang, a senior researcher at HCCI, but "many patients are not thinking about how highly marked up these lab tests are." Chang said she suspects many hospitals tack on their overhead costs when they bill insurance.
Anthem also charged Ahmed for at least four tests that most insurance plans would consider preventive care and therefore covered at no cost to patients under the Affordable Care Act's requirements for covering preventive care, which includes aspects of prenatal care. Her EOBs, or "explanation of benefits" notices, show she paid out-of-pocket for a test identifying her Rh factor — which detects a protein on the surface of red blood cells — as well as for tests for hepatitis B, hepatitis C, and syphilis.
Asked to review Ahmed's tests, Anthem spokesperson Emily Snooks wrote in an email to KFF Health News that the claims "were submitted as diagnostic — not preventive — and were paid according to the benefits in the member's health plan."
There "definitely shouldn't be" out-of-pocket costs for those screenings, said Sabrina Corlette, co-director of Georgetown University's Center on Health Insurance Reforms.
The Centers for Disease Control and Prevention recommends screening pregnant patients for several infectious diseases that pose major risks during pregnancy. Ina Park, a professor of family community medicine at the University of California-San Francisco and an expert on STIs, said the tests Ahmed received didn't raise red flags from a clinical perspective. "It's really more what the actual lab charged based on what the tests actually cost," Park said. "This is a really exorbitant price."
For example, Ahmed paid $71.86 in coinsurance for a hepatitis B test for which the hospital charged $418.55. The hospital charged $295.52 to screen for syphilis; her out-of-pocket cost was $50.74.
"You just wonder, is the insurance company really negotiating with this provider as aggressively as they should to keep the reimbursement to a reasonable amount?" Corlette said.
The Resolution: Ahmed refused to pay the bills and Texas Health sent the debt to collections. When she tried to get answers about the costs, she said she was bounced between the doctor's office and the hospital billing department. Ahmed submitted a complaint to the Texas attorney general's office, which passed it to the Texas Health and Human Services Commission. She never heard back.
According to Ahmed, a hospital representative suggested her bloodwork might have been coded incorrectly and agreed the charges "were really unusually high," Ahmed said, but she was told there was nothing the hospital could do to change it. The hospital did not comment on the reason behind the high charge. And in a March 7 email, an AdventHealth employee told Ahmed the doctor's office had "no control" over the hospital's billing.
Ahmed filed an appeal with Anthem, but it was denied. The insurance company stated the claims were processed correctly under her benefits, which cover 80% of what the insurer agrees to pay for in-network lab services after she meets her deductible. Ahmed has a $1,400 deductible and a $4,600 out-of-pocket maximum for in-network providers.
"We depend on health care providers to submit accurate billing information regarding what medical care was needed and delivered," Snooks said. Asked about reimbursements to the Texas Health lab, she added, "The claim was reimbursed based on the laboratory's contract with the health plan."
After a KFF Health News reporter contacted Texas Health on Oct. 9, the hospital called Ahmed on Oct. 10 and said it would zero out her bills and remove the charges from collections. Ahmed was relieved, "like a giant burden's just been lifted off my shoulders."
"It's just been fighting this for 10 months now, and it's finally gone," she said.
Texas Health Resources and AdventHealth declined to respond to detailed questions about Ahmed's charges and the tests she was directed to obtain.
"We are sorry Ms. Ahmed did not get clarity on her care with us. Our top priority is to provide our patients with safe, effective and medically appropriate care," Laura Shea, a spokesperson for the hospital, said in an emailed statement.
The Takeaway: Ahmed's problem demonstrates the pitfalls of using a hospital lab for routine testing.
For standard bloodwork "it's really hard to argue that there's a quality difference" between independent labs and hospitals that would warrant higher prices, Chang said. That holds true for other services, too, like imaging. "There's nothing special about the machines that hospitals use for a CT or MRI scan. It's the same machine."
Broadly, state and federal lawmakers are paying attention to this issue. Congress is considering legislation that would equalize payments for certain services regardless of whether they are provided in a hospital outpatient department or a doctor's office, although not lab services. Hospitals have tried to fend off such a policy, known as "site-neutral payments."
For example, the Lower Costs, More Transparency Act would require the same prices under Medicare for physician-administered drugs regardless of whether they're given in a doctor's office or an off-campus hospital outpatient department. That bill also would require labs to make public the prices they charge Medicare for tests. Another bill, the Bipartisan Primary Care and Health Workforce Act, would ban hospitals from charging commercial health plans some facility fees — which they use to cover operating or administrative expenses.
According to the National Conference of State Legislatures, Colorado, Connecticut, Ohio, New York, and Texas have limited providers' ability to charge privately insured patients facility fees for certain services. Colorado, Connecticut, Maryland, and New York require health facilities to disclose facility fees to patients before providing care; Florida instituted similar requirements for free-standing emergency departments.
Patients should keep copies of itemized bills and insurance statements. While not the only evidence, those documents can help patients avoid out-of-pocket costs for recommended preventive screenings.
For now, patients can proactively avoid such extreme bills: When your doctor says you need blood tests, ask that the requisition be sent to a commercial lab like Labcorp or Quest Diagnostics that is in your network and have the tests done there. If they can't do it electronically, ask for a paper requisition.
"Don't always just go to the lab that your doctor recommends to you," Corlette said.
Bill of the Month is a crowdsourced investigation by KFF Health News and NPR that dissects and explains medical bills. Do you have an interesting medical bill you want to share with us? Tell us about it!
Erin Kissane, a co-founder of the COVID Tracking Project, rolled up her sleeve for the Novavax COVID-19 vaccine in mid-October soon after it was finally recommended in the United States. Like many people with autoimmune diseases, she wants to protect herself from a potentially devastating COVID infection.
Kissane's autoimmune arthritis seems to make her susceptible to unusual vaccine side effects. After getting an mRNA booster last year, her joints ached so painfully that her doctor prescribed steroids to dampen the inflammation. She still considers the mRNA vaccines "miraculous," knowing COVID could be far worse than temporary aches.
Nonetheless, when the pain subsided, she pored through studies on Novavax's shot, a vaccine that is based on proteins rather than mRNA and has been used since early 2022 in other countries. Data from the United Kingdom found that people more frequently reported temporary reactions — like low fevers, fatigue, and pain — as their immune system ramped up in the days following booster vaccination with Moderna's mRNA vaccine versus the one by Pfizer. And those boosted with Novavax's had fewer complaints than either of those. That finding was corroborated in an analysis of international data published last year.
Such studies have driven people with long COVID and chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME/CFS) to seek out Novavax, too, since the FDA and the Centers for Disease Control and Prevention greenlighted Novavax's vaccine — updated to protect against recent omicron coronavirus variants — about three weeks after recommending updated mRNA vaccines in September.
Waiting paid off for Kissane, whose arm was briefly sore. "It was a dramatically different experience for me," she said. "I hope that plays out for others."
Another group who waited on Novavax are biologists who geek out over its technology. When asked why he opted for Novavax, Florian Krammer, a virologist at the Icahn School of Medicine at Mount Sinai, replied on X, formerly known as Twitter: "Because I am [a] vaccine nerd, I like insect cell produced vaccines."
Whereas mRNA vaccines direct the body to produce spike proteins from the coronavirus SARS-CoV-2, which then train a person's immune system to recognize and fight the virus, Novavax simply injects the proteins. These proteins are grown within moth cells in a laboratory, while other protein-based shots use cells from mammals. And Novavax has said that a special ingredient derived from the bark of Chilean soapbark trees enhances the vaccine's power.
Research suggests that the Novavax vaccine is about as safe and effective as the mRNA shots. Its main disadvantage is arriving late to the scene. Vaccine uptake has plummeted since the first shots became widely available in 2021. Nearly 70% of people got the primary vaccines, compared with fewer than 20% opting for the mRNA COVID boosters released last year. Numbers have dwindled further: As of Oct. 17, only 5% of people in the United States had gotten the latest COVID vaccines, according to the Department of Health and Human Services.
Daniel Park, an epidemiologist at George Washington University, said low rates might improve if people who felt lousy after their last mRNA shots gave Novavax a try. It protects against severe illness, but researchers struggle to specify just how effective this and other vaccines are, at this point, because studies have gotten tricky to conduct: New coronavirus variants continuously emerge, and people have fluctuating levels of immunity from previous vaccines and infections.
Still, a recent study in Italy suggests that Novavax is comparable to mRNA vaccines. It remained more than 50% effective at preventing symptomatic COVID four months after vaccination. Some data suggests that mixing and matching different types of vaccines confers stronger protection — although other studies have found no benefit.
Given all this, Park held out for the Novavax vaccine on account of its potentially milder side effects. "Between a demanding full-time job and two young kids at home, I wanted to stay operational," he said. His arm was sore, but he didn't have the 24-hour malaise accompanying his last mRNA shot.
Most people don't strike a fever after mRNA shots. Even when they do, it is brief and therefore far less detrimental than many cases of COVID. In fact, most reactions are so minor that they're hard to interpret. During clinical trials on mRNA vaccines, for example, up to a third of people in the placebo group reported fatigue and headaches after injection.
People with ME/CFS and long COVID — a potentially debilitating condition that persists months after a COVID infection — have responded to COVID vaccinations in a wide variety of ways. Most participants with long COVID in an 83-person Canadian study said their levels of fatigue, concentration, and shortness of breath improved following vaccination. Inflammatory proteins that have been linked to long COVID dropped as well.
However, larger studies have yet to corroborate the hopeful finding. Jennifer Curtin, a doctor who co-founded a telehealth clinic focused on long COVID and ME/CFS, called RTHM, said vaccines seem to temporarily aggravate some patients' conditions. To learn how Novavax compares, she posted polls on X in late October asking if people with long COVID or ME/CFS felt that their symptoms worsened, improved, or stayed the same after Novavax. Most replied: unchanged.
"It's not scientific, but we need to figure it out since these folks don't want to get COVID," Curtin said. "My patients are all wondering about what vaccine to get right now."
Adding to the uncertainty, the rollout of Novavax and mRNA vaccines has been bumpy as pharmacies struggle to predict demand and insurance companies figure out how to reimburse providers for the shots. Unlike previous vaccine offerings, these options are no longer fully covered by the federal government. A testament to this season's struggle to get vaccinated is that at least one do-gooder has created an online tool to find open appointments for Novavax.
Buoyed by anecdotes of relief from others with long COVID, Hayley Brown, a researcher at the Center for Economic and Policy Research who has the condition, opted for Novavax recently. Unfortunately, her symptoms have flared. She said a temporary discomfort will still be preferable to risking another infection. "As someone with long COVID, the idea of getting COVID again is terrifying."