SACRAMENTO, Calif. — Nearly two years into Gov. Gavin Newsom's $12 billion experiment to transform California's Medicaid program into a social services provider for the state's most vulnerable residents, the institutions tasked with providing the new services aren't effectively doing so, according to a survey released Tuesday.
As part of the ambitious five-year initiative, called CalAIM, the state is supposed to offer the sickest and costliest patients a personal care manager and new services ranging from home-delivered healthy meals to help paying rental security deposits.
But a quarter of the health care insurers, nonprofit organizations, and others responsible for implementing the program don't know enough about it to serve those in need, and many are not equipped to refer and enroll vulnerable patients, according to research by the California Health Care Foundation. (KFF Health News publishes California Healthline, an editorially independent service of the California Health Care Foundation.)
The survey found that only about half of primary care providers and hospital discharge planners are very or somewhat familiar with the initiative, even though they are essential to identifying patients and referring them for services.
"These workers are on the front lines and if they don't know about it, that's a pretty easy win to educate them so they can help more people," said Melora Simon, an associate director at the foundation, which conducted the survey between July 21 and Sept. 12. The initiative debuted in January 2022.
"These workers are most likely to see people in the hospital, in crisis," she added, and "have the opportunity to do something about it."
The roughly two dozen managed care insurance companies serving patients in Medi-Cal, California's Medicaid program for low-income people, are responsible for identifying and enrolling patients into the program, and providing the new services. To make this happen, they contract with local government agencies, community nonprofit groups, social service organizations, hospitals, community clinics, and more. Those organizations can also make referrals and link patients to new services. The foundation surveyed 1,196 of these so-called implementers.
Most of the respondents said state payment rates do not cover the cost of providing expensive social services, and half say the workforce they need to deliver them is "tapped out and overwhelmed."
About 44% also cited inconsistencies and different rules imposed by managed care plans, making participation very or somewhat challenging. For example, some insurers provide on-the-spot Uber rides for doctor appointments while others offer only a bus pass. Plus, not all plans offer the same services.
The survey did pinpoint some early successes. For instance, about half of respondents said the initiative has enabled them to serve more people, and that their ability to manage the comprehensive needs of patients has gotten better.
Tony Cava, a spokesperson for the state Department of Health Care Services, which administers Medi-Cal, acknowledged that the survey findings "resonate" and said the state is working to streamline and standardize patient referrals and authorizations.
"Implementers are on board with the core goals, and we are seeing improvements. But there is room to increase familiarity with CalAIM and broaden and deepen networks," Cava said.
He said CalAIM represents a major shift in how Medi-Cal delivers care, and that the "kind of seismic system change that we are undergoing takes time."
"Rather than reactive, we are moving toward a system that is proactive and considers all factors affecting health — the social drivers of health — and not simply what may happen inside of a medical facility," he added.
The department provides financial and technical assistance to implementers, though only about one-third of survey respondents have found the training, technical guidance, and other resources adequate.
Van Do-Reynoso, chief healthy equity officer for CenCal Health, the Medi-Cal health insurer serving Santa Barbara and San Luis Obispo counties, acknowledged that it has been difficult to provide a full complement of CalAIM services. She cited a variety of obstacles such as inadequate reimbursement, lack of housing, and working with social services agencies unfamiliar with the health care system.
Nearly 3,000 CenCal enrollees are receiving CalAIM services, she said, many of them housing- and homelessness-related.
"We are working hard to better engage with hospital CEOs, community providers, and medical providers," Do-Reynoso said. "People are getting housed. They're practicing sobriety. It has only whetted our appetite to continue doing this work."
When Newsom launched CalAIM, the Democratic governor promised it would transform Medi-Cal. The goal, his administration said, is to improve health and prevent people from winding up in costly institutions like the emergency room and jail, and to help move homeless people into housing.
It's unclear how many of the 15.2 million Californians enrolled in Medi-Cal are eligible for new services and benefits, but several large populations qualify, including homeless Californians, people leaving jail or prison, foster children, people with severe mental illness or addiction, and older nursing home residents who want to transition home.
So far, about 141,000 Medi-Cal patients have a personal care manager through CalAIM, according to Cava, though hundreds of thousands more likely qualify. About 76,000 patients are receiving other social services, which are optional for plans to offer, he said.
In some cases, qualified Medi-Cal enrollees are turning down new services because they are being offered at the wrong time or by the wrong person, Simon said. For instance, a homeless person might not accept services from a police or code enforcement officer.
Insurers say they want to do more but need more help from the state.
"I am very hopeful that a year from now, we are going to be able to demonstrate even greater strides," Do-Reynoso said. "What we hear often is what is reflected in the survey. We need higher rates, more communication, a more streamlined approval process."
It's a good day when Frank Lee, a retired chef, can slip out to the hardware store, fairly confident that his wife, Robin, is in the hands of reliable help. He spends nearly every hour of every day anxiously overseeing her care at their home on the Isle of Palms, a barrier island near Charleston, South Carolina.
Robin Lee, 67, has had dementia for about a decade, but the couple was able to take overseas trips and enjoy their marriage of some 40 years until three years ago, when she grew more agitated, prone to sudden outbursts, and could no longer explain what she needed or wanted. He struggled to care for her largely on his own.
"As Mom's condition got more difficult to navigate, he was just handling it," said Jesse Lee, the youngest of the couple's three adult children. "It was getting harder and harder. Something had to change, or they would both perish."
Frank Lee's search for trustworthy home health aides — an experience that millions of American families face — has often been exhausting and infuriating, but he has persisted. He didn't entirely trust the care his wife would get in an assisted living facility. Last August, when a respite program paid for her brief stay in one so Frank, 69, could take a trip to the mountains, she fell and fractured her sacrum, the bone that connects the spine to the pelvis.
There is precious little assistance from the government for families who need a home health aide, unless they are poor. The people working in these jobs are often woefully underpaid and unprepared to help a frail, older person with dementia bathe and use the bathroom, or to defuse an angry outburst.
Usually, it is family that steps into the breach — grown children who cobble together a fragile chain of visitors to help an ailing father; a middle-aged daughter who returns to her childhood bedroom; a son-in-law working from home who keeps a watchful eye on a confused parent; a wife who can barely manage herself looking after a faltering husband.
Frank Lee finally found two aides on his own, with no help from an agency. Using the proceeds from the sale of his stake in a group of restaurants, including the popular Charleston bistro Slightly North of Broad, he pays them the going rate of about $30 an hour. Between his wife's care and medical expenses, he estimates he's spending between $80,000 and $100,000 a year.
"Who the hell can afford this?" he asked. "There's no relief for families unless they have great wealth or see their wealth sucked away." He worries that he will run out of money and be forced to sell their home of more than three decades. "Funds aren't unlimited," he said.
Credited with emphasizing local ingredients and mentoring young chefs in Charleston, Lee retired in 2016, a few years after his wife's diagnosis.
In an interview at the time, he said, "My wife has given up her life to help me in my career, and now I need to pay attention to her."
In 2020, he contacted a half-dozen home care agencies. Some couldn't fill the position. Others sent aides who were quickly overwhelmed by his wife's behavior. Doctors told the family they believed she has frontotemporal dementia, which appeared to affect her language and how she behaved.
One woman seemed promising, only to quit after a week or two. "We never saw her again," Lee said. He tried a friend of the family for a time, but she left when her grandmother developed liver cancer.
"It was the whole year of going through different caregivers," said son Jesse.
Finally, Frank found two women to help. One of them, Ronnie Smalls, has more than a dozen years of experience and is trained in dementia care. She has developed a rapport with Robin, who seems reassured by a quick touch. "We have a really good bond," Smalls said. "I know her language, her expression."
One day at the Lees' cozy one-story house, decorated with furniture made by Robin, and with a yard overflowing with greenery, Smalls fed her lunch at the kitchen table with her husband and daughter. Robin seemed to enjoy the company, murmuring in response to the conversation.
At other times, she seemed oblivious to the people around her. She can no longer walk on her own. Two people are often needed to help her get up from a chair or go to the bathroom, transitions she often finds upsetting. A day without an aide — out because of illness or a family emergency — frays the tenuous links that hold the couple's life together.
Lee said his wife barely resembles the woman he married, the one who loved hiking, skiing, and gardening, and who started a neighborhood preschool while raising their three children. A voracious reader, she is now largely silent, staring into space.
The prognosis is bleak, with doctors offering little to hang onto. "What's the end game look like?" Lee asks, wondering if it would be better if his wife had the right to die rather than slowly disappear before his eyes. "As she disintegrates, I disintegrate," he said. She recently qualified for hospice care, which will involve weekly visits from a nurse and a certified nursing assistant paid under Medicare.
Charleston is flush with retirees attracted by its low taxes and a warm climate, and it boasts of ways to care for them with large for-profit home health chains and a scattering of small agencies. But many families in Charleston and across the nation can't find the help they need. And when they do, it's often spotty and far more expensive than they can afford.
Most Americans want to remain in their own homes, living independently, for as long as possible. They want to avoid nursing homes, which they see as providing poor care, polls have found. And the ranks of older people who need such help will grow. By 2030, 1 in 5 Americans will be at least 65 as millions in the baby boomer generation retire.
In dozens of interviews, families described a desperate and sometimes fruitless search for aides to help loved ones with simple tasks on a predictable schedule at an hourly rate they can afford.
Roughly 8 million people 65 and older had dementia or needed help with two or more activities of basic daily life, like getting out of bed, according to an analysis of a federally funded survey of older Americans by KFF Health News and The New York Times. Only a million received paid help outside of a nursing home, and nearly 3 million had no help at all.
Most families can't afford what agencies charge — about $27 an hour, according to Genworth, a long-term care insurance company. So, many take their chances on untrained caregivers found through word-of-mouth, Craigslist, or other resources.
A Scarcity of Workers
One of the main obstacles to finding paid help is the chronic shortage of workers. Some 3.7 million people had jobs as aides in home health or personal care in 2022, with half of them earning less than $30,000 year, or $14.51 an hour, according to the Bureau of Labor Statistics. The number of people needed is expected to increase by more than 20% over the next decade. But the working conditions are hard, the pay is usually bad, and the hours are inconsistent.
About 3 million people are working in private homes, according to a 2023 analysis by PHI, a nonprofit that studies and acts as an advocate for the workforce, although official estimates may not count many workers paid off the books or hired outside of an agency by a family. Eighty-five percent of home care workers are women, two-thirds are people of color, and roughly a third are immigrants. The pay is often so low that more than half qualify for public assistance like food stamps or Medicaid.
Dawn Geisler, 53, has made only $10 an hour working as a home health aide in the Charleston area for the past four years, without ever getting a raise. She declined to name the agency that employs her because she doesn't want to lose her job.
Geisler discovered she liked the work after caring for her mother. Unlike an office job, "every day is just a little bit different," she said. She now juggles two clients. She might accompany one to the doctor and keep the other one company. "I'm taking care of them like they were my own family," she said.
The agency provides no guarantee of work and doesn't always tell her what to expect when she walks through the door, except to say someone has Alzheimer's or is in a wheelchair. Her supervisors often fail to let her know if her client goes to the hospital, so families know to call her cellphone. She has waited weeks for a new assignment without getting paid a penny. She herself has no health insurance and sometimes relies on food banks to put meals on the table.
"I'm not making enough to pay all the bills I have," said Geisler, who joined an advocacy group called the Fight for $15, which is pushing to raise the minimum wage in South Carolina and across the country. When her car broke down, she couldn't afford to get it fixed. Instead, she walked to work or borrowed her fiancé's bicycle.
Most home health agencies nationwide are for-profit and are often criticized for ignoring the needs of workers in favor of the bottom line.
"The business models are based on cheap labor," said Robyn Stone, senior vice president of research for LeadingAge, which represents nonprofit agencies. The industry has historically tolerated high turnover but now can't attract enough workers in a strong, competitive job market. "I think there has been a rude awakening for a lot of these companies," she said.
Many agencies have also refused to pay overtime or travel costs between jobs, and many have been accused of wage theft in lawsuits filed by home care workers or have been sanctioned by state and federal agencies.
Medicaid, the federal-state program that provides health care for the poor, is supposed to provide home aides but faces shortages of workers at the rates it pays workers. At least 20 states pay less than $20 an hour for a personal care aide, according to a recent state survey by KFF. Aides are often paid less under Medicaid than if they care for someone paying privately.
With low pay and few benefits, many people would rather work the checkout line in a supermarket or at a fast-food chain than take on the emotionally demanding job of caring for an older person, said Ashlee Pittmann, the chief executive of Interim HealthCare of Charleston, a home health agency. She said that she recently raised wages by $2 an hour and had had more success keeping employees, but that she still worried that "we may not be able to compete with some larger companies."
The Biden administration failed to obtain an additional $400 billion from Congress for home- and community-based services to shift emphasis away from institutional care. President Joe Biden signed an executive order this year to encourage some reforms, and federal officials have proposed requiring home health agencies to spend 80 cents of every government dollar on paying workers under Medicaid. But so far, little has changed.
Falling Through the ‘Doughnut Hole‘
Long-term care coverage for most Americans is a yawning gap in government programs. And the chasm is widening as more Americans age into their 70s, 80s, and 90s.
The government's main program for people 65 and older is Medicare, but it pays for a home aide only when a medical condition, like recovery from a stroke, has made a person eligible for a nurse or therapist to come to the home. And the aide is usually short-term. Medicare doesn't cover long-term care.
Medicaid, which does pay for long-term care at home, is limited to serving the poor or those who can demonstrate they have hardly any assets. But, again, the worker shortage is so pervasive that waiting lists for aides are years long, leaving many people without any option except a nursing home.
So millions of Americans keep trying to hang in and stay home as long as they can. They're not poor enough to qualify for Medicaid, but they can't afford to hire someone privately.
Many fall through what April Abel, a former home health nurse from Roper St. Francis Healthcare in Charleston, described as "the doughnut hole."
"I feel so bad for them because they don't have the support system they need," she said.
She tried fruitlessly for months to find help for Joanne Ganaway, 79 and in poor health, from charities or state programs while she visited her at home. Ganaway had trouble seeing because of a tear in her retina and was often confused about her medications, but the small pension she had earned after working nearly 20 years as a state employee made her ineligible for Medicaid-sponsored home care.
So Ganaway, who rarely leaves her house, relies on friends or family to get to the doctor or the store. She spends most of her day in a chair in the living room. "It has been difficult for me, to be honest," she said.
Turning to Respite Services
With no hope of steady help, there is little left to offer overstretched wives, husbands, sons, and daughters other than a brief respite. The Biden administration has embraced the idea of respite services under Medicare, including a pilot program for the families of dementia patients that will begin in 2024.
One nonprofit, Respite Care Charleston, provides weekday drop-off sessions for people with dementia for almost four hours a day.
Lee's wife went for a couple of years, and he still makes use of the center's support groups, where caregivers talk about the strain of watching over a loved one's decline.
On any given morning, nearly a dozen people with dementia gather around a table. Two staff members and a few volunteers work with the group as they play word games, banter, bat balls around, or send a small plastic jumping frog across the table.
Their visits cost $50 a session, including lunch, and the organization's brief hours keep it under the minimum state requirements for licensing.
"We're not going to turn someone away," Sara Perry, the group's executive director, said. "We have some folks who pay nothing."
The service is a godsend, families say. Parkinson's disease and a stroke have left Dottie Fulmer's boyfriend, Martyn Howse, mentally and physically incapacitated, but he enjoys the sessions.
"Respite Care Charleston has been a real key to his keeping going," she said, "to both of us, quite frankly, continuing to survive."
A recent Federal Trade Commission civil lawsuit accusing one of the nation's largest anesthesiology groups of monopolistic practices that sharply drove up prices is a warning to private equity investors that could temper their big push to snap up physician groups.
Over the past three years, FTC andDepartment of Justice officials have signaled they would apply more scrutiny to private equity acquisitions in healthcare, including roll-up deals in which larger provider groups buy smaller groups in a local market.
Nothing happened until September, when the FTC sued U.S. Anesthesia Partners and the private equity firm Welsh, Carson, Anderson & Stowe in federal court in Houston, alleging they had rolled up nearly all large anesthesiology practices in Texas. In the first FTC legal challenge against a private equity purchase of medical practices, the federal agency targeted one of the most aggressive private equity firms involved in building large, market-dominating medical groups.
In an interview, FTC Chair Lina Khan confirmed that her agency wants to send a message with this suit. Welsh Carson and USAP "bought up the largest anesthesiology practices, then jacked up prices and entered into price-setting and market-allocation schemes," said Khan, who was appointed by President Joe Biden in 2021 to head the antitrust enforcement agency, with a mandate to combat healthcare consolidation. "This action puts the market on notice that we will scrutinize roll-up schemes."
The large and growing volume of private equity acquisitions of physician groups in recent years has raised mounting concerns about the impact on health costs, quality of care, and providers' clinical autonomy. A JAMA Internal Medicine study published last year found that prices charged by anesthesiology groups increased 26% after they were acquired by private equity firms.
"Now we're seeing that scrutiny with this suit," said Ambar La Forgia, an assistant professor of business management at the University of California-Berkeley, who co-authored the JAMA article. "This suit will cause companies to be more careful not to create too much local market power."
The FTC's lawsuit alleges that USAP and Welsh Carson engaged in an anti-competitive scheme to gain market power and drive up prices for hospital anesthesiology services. The FTC also accuses USAP and Welsh Carson — which established the medical group in 2012 and has expanded it to eight states — of cutting deals with competing anesthesiology groups to raise prices and stay out of one another's markets.
USAP now controls 60% of Texas' hospital anesthesia market, and its prices are double the median rates of other anesthesia providers in the state, according to the lawsuit. Learning that USAP would boost rates following one acquisition, a USAP executive wrote, "Awesome! Cha-ching," the civil complaint said.
In a written statement, Welsh Carson, which also holds sizable ownership shares in radiology, orthopedic, and primary care groups, called the FTC lawsuit "without merit in fact or law." It said USAP's commercial rates "have not exceeded the rate of medical cost inflation for close to 10 years."
The New York firm also said its investment in USAP "has allowed independent anesthesiologists to deliver superior clinical outcomes to underserved populations" and that the FTC's action will harm clinicians and patients. Welsh Carson declined a request for interviews with its executives.
"This is a pretty common roll-up strategy, and some of the big private equity companies must be wondering if more FTC complaints are coming," said Loren Adler, associate director of the Brookings Schaeffer Initiative on Health Policy. "If the FTC is successful in court, it will have a chilling effect."
Since the FTC filed the USAP lawsuit, Khan said, the agency has received information from people in other health fields about roll-ups it should scrutinize. "We have limited resources, but it's an area we are interested in," she said. "We want to focus on where we see the most significant harm."
In physician acquisition deals, PE firms typically use mostly borrowed money to acquire a controlling interest in a large medical group, pay the physician owners a substantial upfront sum in exchange for sharply cutting their future compensation, and install a management team. Then they seek to acquire smaller groups in the same geographic market and bolt them onto the original medical group for more bargaining clout and operating efficiencies.
The PE firm's goal is to garner at least 20% dividends a year and then sell the group to another investor for at least three times the purchase price in three to seven years. Critics say this short-term investment model spurs the investors and medical groups to boost prices and cut staffing to generate large profits as fast as possible.
"Private equity is trying to extract value quickly and sell the company for a profit, so there's a lot more incentive to increase prices quickly and extract higher revenue," La Forgia said.
In the two years after a sale, PE-owned practices in dermatology, gastroenterology, and ophthalmology charged insurers 20% more per claim on average than did practices not owned by private equity, according to a JAMA study published last year.
There are similar concerns about hospital systems acquiring physician practices, which also have raised prices. "The evidence shows that both private equity and hospital acquisitions of physician practices are bad for consumers, and scrutiny should be applied to all acquirers," Adler said.
Critics warn that private equity roll-ups of medical groups can jeopardize quality of care, too. Chris Strouse, a Denver anesthesiologist who served on USAP's national board of directors but left the company's Colorado group out of disapproval in 2020, cited patient safety issues arising from short staffing and mismanagement. He said USAP would schedule shifts so that three or four providers would hand off to each other a single surgical procedure, which he said is risky. In addition, USAP frequently asked anesthesiologists to work the day after working a 24-hour on-call shift, he said. "The literature shows that's outside the safety range," he said. As a result, many providers have left USAP, he added.
The FTC has long been lax in monitoring roll-ups of physician groups, in part because federal law does not require public reporting of these deals unless they exceed $111.4 million in value, a threshold adjusted over time. Lowering the threshold would require congressional action. As a result, regulators may be unaware of many deals that lead to gradual market concentration, which allows providers to demand higher prices from insurers and employer health plans.
Recognizing that problem, the FTC proposed in June to beef up its reporting requirements for companies planning mergers, in hopes of spotting previous acquisitions of smaller groups that could lead to excessive market power and higher prices. In addition, in a draft of their merger review guidelines, issued in July, the FTC and the Department of Justice said they would consider the cumulative effect of a series of smaller acquisitions.
"The ways PE firms are making serial acquisitions, each individual acquisition is under the radar, but in aggregate they roll up the whole market," Khan said. "Between the merger reporting form and the new merger guidelines, we want to be able to better catch unlawful roll-up schemes. … This would enable us to stop roll-ups earlier."
But Brian Concklin, a lawyer with the law firm Clifford Chance, whose clients include private equity firms, said the FTC's proposed reporting requirements would hamper many legitimate mergers. "The notion that they need all that information to catch deals that lessen competition seems overblown and false, given that the vast majority of these deals do not lessen competition," he said. "It will be a substantial burden on most if not all clients to comply."
Researchers and employer groups, however, were encouraged by the FTC's action, though they fear it's too little, too late, because consolidation already has reduced competition sharply. Some even say the market has failed and price regulation is needed.
"Providers have been able to extort higher prices on services with no improvement in quality or value or access," said Mike Thompson, CEO of the National Alliance of Healthcare Purchaser Coalitions. "The FTC stepping up its game is a good thing. But this horse is out of the barn. If we don't have better enforcement, we won't have a marketplace."
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."