Millions of families are facing such daunting life choices — and potential financial ruin — as the escalating costs of in-home care and nursing homes devour savings.

This article was published on Tuesday, November 14, 2023 in KFF Health News.

By Reed Abelson, The New York Times and Jordan Rau

Margaret Newcomb, 69, a retired French teacher, is desperately trying to protect her retirement savings by caring for her 82-year-old husband, who has severe dementia, at home in Seattle. She used to fear his disease-induced paranoia, but now he's so frail and confused that he wanders away with no idea of how to find his way home. He gets lost so often that she attaches a tag to his shoelace with her phone number.

Sheila Littleton, 30, brought her grandfather with dementia to her family home in Houston, then spent months fruitlessly trying to place him in a nursing home with Medicaid coverage. She eventually abandoned him at a psychiatric hospital to force the system to act.

"That was terrible," she said. "I had to do it."

Millions of families are facing such daunting life choices — and potential financial ruin — as the escalating costs of in-home care, assisted living facilities, and nursing homes devour the savings and incomes of older Americans and their relatives.

"People are exposed to the possibility of depleting almost all their wealth," said Richard Johnson, director of the program on retirement policy at the Urban Institute.

The prospect of dying broke looms as an imminent threat for the boomer generation, which vastly expanded the middle class and looked hopefully toward a comfortable retirement on the backbone of 401(k)s and pensions. Roughly 10,000 of them will turn 65 every day until 2030, expecting to live into their 80s and 90s as the price tag for long-term care explodes, outpacing inflation and reaching a half-trillion dollars a year, according to federal researchers.

The challenges will only grow. By 2050, the population of Americans 65 and older is projected to increase by more than 50%, to 86 million, according to census estimates. The number of people 85 or older will nearly triple to 19 million.

The United States has no coherent system of long-term care, mostly a patchwork. The private market, where a minuscule portion of families buy long-term care insurance, has shriveled, reduced over years of giant rate hikes by insurers that had underestimated how much care people would actually use. Labor shortages have left families searching for workers willing to care for their elders in the home. And the cost of a spot in an assisted living facility has soared to an unaffordable level for most middle-class Americans. They have to run out of money to qualify for nursing home care paid for by the government.

For an examination of the crisis in long-term care, The New York Times and KFF Health News interviewed families across the nation as they struggled to obtain care; examined companies that provide it; and analyzed data from the federally funded Health and Retirement Study, the most authoritative national survey of older people about their long-term care needs and financial resources.

About 8 million people 65 and older reported that they had dementia or difficulty with basic daily tasks like bathing and feeding themselves — and nearly 3 million of them had no assistance at all, according to an analysis of the survey data. Most people relied on spouses, children, grandchildren, or friends.

The United States devotes a smaller share of its gross domestic product to long-term care than do most other wealthy countries, including Britain, France, Canada, Germany, Sweden, and Japan, according to the Organization for Economic Cooperation and Development. The United States lags its international peers in another way: It dedicates far less of its overall health spending toward long-term care.

"We just don't value elders the way that other countries and other cultures do," said Rachel Werner, executive director of the Leonard Davis Institute of Health Economics at the University of Pennsylvania. "We don't have a financing and insurance system for long-term care," she said. "There isn't the political will to spend that much money."

Despite medical advances that have added years to the average life span and allowed people to survive decades more after getting cancer or suffering from heart disease or strokes, federal long-term care for older people has not fundamentally changed in the decades since President Lyndon Johnson signed Medicare and Medicaid into law in 1965. From 1960 to 2021, the number of Americans age 85 and older increased at more than six times the rate of the general population, according to census records.

Medicare, the federal health insurance program for Americans 65 and older, covers the costs of medical care, but generally pays for a home aide or a stay in a nursing home only for a limited time during a recovery from a surgery or a fall or for short-term rehabilitation.

Medicaid, the federal-state program, covers long-term care, usually in a nursing home, but only for the poor. Middle-class people must exhaust their assets to qualify, forcing them to sell much of their property and to empty their bank accounts. If they go into a nursing home, they are permitted to keep a pittance of their retirement income: $50 or less a month in a majority of states. And spouses can hold onto only a modest amount of income and assets, often leaving their children and grandchildren to shoulder some of the financial burden.

"You basically want people to destitute themselves and then you take everything else that they have," said Gay Glenn, whose mother lived in a nursing home in Kansas until she died in October at age 96.

Her mother, Betty Mae Glenn, had to spend down her savings, paying the home more than $10,000 a month, until she qualified for Medicaid. Glenn, 61, relocated from Chicago to Topeka more than four years ago, moving into one of her mother's two rental properties and overseeing her care and finances.

Under the state Medicaid program's byzantine rules, she had to pay rent to her mother, and that income went toward her mother's care. Glenn sold the family's house just before her mother's death in October. Her lawyer told her the estate had to pay Medicaid back about $20,000 from the proceeds.

A play she wrote about her relationship with her mother, titled "If You See Panic in My Eyes," was read this year at a theater festival.

At any given time, skilled nursing homes house roughly 630,000 older residents whose average age is about 77, according to recent estimates. A long-term resident's care can easily cost more than $100,000 a year without Medicaid coverage at these institutions, which are supposed to provide round-the-clock nursing coverage.

Nine in 10 people said it would be impossible or very difficult to pay that much, according to a KFF public opinion poll conducted during the pandemic.

Efforts to create a national long-term care system have repeatedly collapsed. Democrats have argued that the federal government needs to take a much stronger hand in subsidizing care. The Biden administration sought to improve wages and working conditions for paid caregivers. But a $150 billion proposal in the Build Back Better Act for in-home and community-based services under Medicaid was dropped to lower the price tag of the final legislation.

"This is an issue that's coming to the front door of members of Congress," said Sen. Bob Casey, a Pennsylvania Democrat and chair of the Senate Special Committee on Aging. "No matter where you're representing — if you're representing a blue state or red state — families are not going to settle for just having one option," he said, referring to nursing homes funded under Medicaid. "The federal government has got to do its part, which it hasn't."

But leading Republicans in Congress say the federal government cannot be expected to step in more than it already does. Americans need to save for when they will inevitably need care, said Sen. Mike Braun of Indiana, the ranking Republican on the aging committee.

"So often people just think it's just going to work out," he said. "Too many people get to the point where they're 65 and then say, ‘I don't have that much there.'"

Private Companies' Prices Have Skyrocketed

The boomer generation is jogging and cycling into retirement, equipped with hip and knee replacements that have slowed their aging. And they are loath to enter the institutional setting of a nursing home.

But they face major expenses for the in-between years: falling along a spectrum between good health and needing round-the-clock care in a nursing home.

That has led them to assisted living centers run by for-profit companies and private equity funds enjoying robust profits in this growing market. Some 850,000 people age 65 or older now live in these facilities that are largely ineligible for federal funds and run the gamut, with some providing only basics like help getting dressed and taking medication and others offering luxury amenities like day trips, gourmet meals, yoga, and spas.

The bills can be staggering.

Half of the nation's assisted living facilities cost at least $54,000 a year, according to Genworth, a long-term care insurer. That rises substantially in many metropolitan areas with lofty real estate prices. Specialized settings, like locked memory care units for those with dementia, can cost twice as much.

Home care is costly, too. Agencies charge about $27 an hour for a home health aide, according to Genworth. Hiring someone who spends six or seven hours a day cleaning and helping an older person get out of bed or take medications can add up to $60,000 a year.

As Americans live longer, the number who develop dementia, a condition of aging, has soared, as have their needs. Five million to 7 million Americans age 65 and up have dementia, and their ranks are projected to grow to nearly 12 million by 2040. The condition robs people of their memories, mars the ability to speak and understand, and can alter their personalities.

In Seattle, Margaret and Tim Newcomb sleep on separate floors of their two-story cottage, with Margaret ever mindful that her husband, who has dementia, can hallucinate and become aggressive if medication fails to tame his symptoms.

"The anger has diminished from the early days," she said last year.

But earlier on, she had resorted to calling the police when he acted erratically.

"He was hating me and angry, and I didn't feel safe," she said.

She considered memory care units, but the least expensive option cost around $8,000 a month and some could reach nearly twice that amount. The couple's monthly income, with his pension from Seattle City Light, the utility company, and their combined Social Security, is $6,000.

Placing her husband in such a place would have gutted the $500,000 they had saved before she retired from 35 years teaching art and French at a parochial school.

"I'll let go of everything if I have to, but it's a very unfair system," she said. "If you didn't see ahead or didn't have the right type of job that provides for you, it's tough luck."

In the last year, medication has quelled Tim's anger, but his health has declined so much that he no longer poses a physical threat. Margaret said she's reconciled to caring for him as long as she can.

"When I see him sitting out on the porch and appreciating the sun coming on his face, it's really sweet," she said.

The financial threat posed by dementia also weighs heavily on adult children who have become guardians of aged parents and have watched their slow, expensive declines.

Claudia Morrell, 64, of Parkville, Maryland, estimated her mother, Regine Hayes, spent more than $1 million during the eight years she needed residential care for dementia. That was possible only because her mother had two pensions, one from her husband's military service and another from his job at an insurance company, plus savings and Social Security.

Morrell paid legal fees required as her mother's guardian, as well as $6,000 on a special bed so her mother wouldn't fall out and on private aides after she suffered repeated small strokes. Her mother died last December at age 87.

"I will never have those kinds of resources," Morrell, an education consultant, said. "My children will never have those kinds of resources. We didn't inherit enough or aren't going to earn enough to have the quality of care she got. You certainly can't live that way on Social Security."

Women Bear the Burden of Care

For seven years, Annie Reid abandoned her life in Colorado to sleep in her childhood bedroom in Maryland, living out of her suitcase and caring for her mother, Frances Sampogna, who had dementia. "No one else in my family was able to do this," she said.

"It just dawned on me, I have to actually unpack and live here," Reid, 61, remembered thinking. "And how long? There's no timeline on it."

After Sampogna died at the end of September 2022, her daughter returned to Colorado and started a furniture redesign business, a craft she taught herself in her mother's basement. Reid recently had her knee replaced, something she could not do in Maryland because her insurance didn't cover doctors there.

"It's amazing how much time went by," she said. "I'm so grateful to be back in my life again."

Studies are now calculating the toll of caregiving on children, especially women. The median lost wages for women providing intensive care for their mothers is $24,500 over two years, according to a study led by Norma Coe, an associate professor at the Perelman School of Medicine at the University of Pennsylvania.

Lewis moved back from England to Nashville to care for her mother, a former nurse who had a stroke that put her in a wheelchair.

"I was thrust back into a caregiving role full time," she said. She gave up a post as a research director for a nonprofit organization. She is also tending to her 87-year-old grandfather, ill with prostate cancer and kidney disease.

Making up for lost income seems daunting while she continues to support her mother.

But she is regaining hope: She was promoted to assistant dean for student affairs at Vanderbilt School of Nursing and was recently married. She and her husband plan to stay in the same apartment with her mother until they can save enough to move into a larger place.

Government Solutions Are Elusive

Over the years, lawmakers in Congress and government officials have sought to ease the financial burdens on individuals, but little has been achieved.

The CLASS Act, part of the Obamacare legislation of 2010, was supposed to give people the option of paying into a long-term insurance program. It was repealed two years later amid compelling evidence that it would never be economically viable.

Two years ago, another proposal, called the WISH Act, outlined a long-term care trust fund, but it never gained traction.

On the home care front, the scarcity of workers has led to a flurry of attempts to improve wages and working conditions for paid caregivers. A provision in the Build Back Better Act to provide more funding for home care under Medicaid was not included in the final Inflation Reduction Act, a less costly version of the original bill that Democrats sought to pass last year.

The labor shortages are largely attributed to low wages for difficult work. In the Medicaid program, demand has clearly outstripped supply, according to a recent analysis. While the number of home aides in the Medicaid program has increased to 1.4 million in 2019 from 840,000 in 2008, the number of aides per 100 people who qualify for home or community care has declined nearly 12%.

In April, President Joe Biden signed an executive order calling for changes to government programs that would improve conditions for workers and encourage initiatives that would relieve some of the burdens on families providing care.

Turning to Medicaid, a Shredded Safety Net

The only true safety net for many Americans is Medicaid, which represents, by far, the largest single source of funding for long-term care.

More than 4 in 5 middle-class people 65 or older who need long-term care for five years or more will eventually enroll, according to an analysis for the federal government by the Urban Institute. Almost half of upper-middle-class couples with lifetime earnings of more than $4.75 million will also end up on Medicaid.

But gaps in Medicaid coverage leave many people without care. Under federal law, the program is obliged to offer nursing home care in every state. In-home care, which is not guaranteed, is provided under state waivers, and the number of participants is limited. Many states have long waiting lists, and it can be extremely difficult to find aides willing to work at the low-paying Medicaid rate.

Qualifying for a slot in a nursing home paid by Medicaid can be formidable, with many families spending thousands of dollars on lawyers and consultants to navigate state rules. Homes may be sold or couples may contemplate divorce to become eligible.

And recipients and their spouses may still have to contribute significant sums. After Stan Markowitz, a former history professor in Baltimore with Parkinson's disease, and his wife, Dottye Burt, 78, exhausted their savings on his two-year stay in an assisted living facility, he qualified for Medicaid and moved into a nursing home.

He was required to contribute $2,700 a month, which ate up 45% of the couple's retirement income. Burt, who was a racial justice consultant for nonprofits, rented a modest apartment near the home, all she could afford on what was left of their income.

Markowitz died in September at age 86, easing the financial pressure on her. "I won't be having to pay the nursing home," she said.

Even finding a place willing to take someone can be a struggle. Harold Murray, Sheila Littleton's grandfather, could no longer live safely in rural North Carolina because his worsening dementia led him to wander. She brought him to Houston in November 2020, then spent months trying to enroll him in the state's Medicaid program so he could be in a locked unit at a nursing home.

She felt she was getting the runaround. Nursing home after nursing home told her there were no beds, or quibbled over when and how he would be eligible for a bed under Medicaid. In desperation, she left him at a psychiatric hospital so it would find him a spot.

"I had to refuse to take him back home," she said. "They had no choice but to place him."

He was finally approved for coverage in early 2022, at age 83.

A few months later, he died.

Reed Abelson is a health care reporter for The New York Times. The New York Times' Kirsten Noyes and graphics editor Albert Sun, KFF Health News data editor Holly K. Hacker, and JoNel Aleccia, formerly of KFF Health News, contributed to this report.

The shift in health information trails rhetoric from Republican politicians who have reversed their positions on COVID vaccines.

This article was published on Monday, November 13, 2023 in KFF Health News.

By Amy Maxmen

Katherine Wells wants to urge her Lubbock, Texas, community to get vaccinated against COVID-19. "That could really save people from severe illness," said Wells, the city's public health director.

But she can't.

A rule added to Texas' budget that went into effect Sept. 1 forbids health departments and other organizations funded by the state government to advertise, recommend, or even list COVID vaccines alone. "Clinics may inform patients that COVID-19 vaccinations are available," the rule allows, "if it is not being singled out from other vaccines."

Texas isn't the only state curtailing the public conversation about COVID vaccines. Tennessee's health department homepage, for example, features the flu, vaping, and cancer screening but leaves out COVID and COVID vaccines. Florida is an extreme case, where the health department has issued guidance against COVID vaccines that runs counter to scientific studies and advice from the Centers for Disease Control and Prevention.

Notably, the shift in health information trails rhetoric from primarily Republican politicians who have reversed their positions on COVID vaccines. Fierce opposition to measures like masking and business closures early in the pandemic fueled a mistrust of the CDC and other scientific institutions and often falls along party lines: Last month, a KFF poll found that 84% of Democrats said they were confident in the safety of COVID vaccines, compared with 36% of Republicans. It's a dramatic drop from 2021, when two-thirds of Republicans were vaccinated.

As new vaccines roll out ahead of the expected winter surge of COVID, some health officials are treading carefully to avoid blowback from the public and policymakers. So far, vaccine uptake is low, with less than 5% of Americans receiving an updated shot, according to the Department of Health and Human Services. Wells fears the consequences will be dire: "We will see a huge disparity in health outcomes because of changes in language."

A study published in July found that Republicans and Democrats in Ohio and Florida died at roughly similar rates before COVID vaccines emerged, but a disparity between parties grew once the first vaccines were widely available in 2021 and uptake diverged. By year's end, Republicans had a 43% higher rate of excess deaths than Democrats.

Public health initiatives have long been divisive — water fluoridation, needle exchanges, and universal health care, to name a few. But the pandemic turned up the volume to painful levels, public health officials say. More than 500 left their jobs under duress in 2020 and 2021, and legislators in at least 26 states passed laws to prevent public officials from setting health policies. Republican Arkansas state Sen. Trent Garner told KFF Health News in 2021, "It's time to take the power away from the so-called experts."

At first, vaccine mandates were contentious but the shots themselves were not. Scott Rivkees, Florida's former surgeon general, now at Brown University, traces the shift to the months after Joe Biden was elected president. Though Florida Gov. Ron DeSantis initially promoted COVID vaccination, his stance changed as resistance to COVID measures became central to his presidential campaign. In late 2021, he appointed Joseph Ladapo surgeon general. By then, Ladapo had penned Wall Street Journal op-eds skeptical of mainstream medical advice, such as one asking, "Are COVID Vaccines Riskier Than Advertised?"

As bivalent boosters rolled out last year, the Florida health department's homepage removed information on COVID vaccines. In its place were rules against mandates and details on how to obtain vaccine exemptions. Then, early this year, the department advised against vaccinating children and teens.

The state's advice changed once more when the CDC recommended updated COVID vaccines in September. DeSantis incorrectly said the vaccines had "not been proven to be safe or effective." And the health department amended its guidance to say men under age 40 should not be vaccinated because the department had conducted research and deemed the risk of heart complications like myocarditis unacceptable. It refers to a short, authorless document posted online rather than in a scientific journal where it would have been vetted for accuracy. The report uses an unusual method to analyze health records of vaccinated Floridians. Citing serious flaws, most other researchers call it misinformation.

Scientifically vetted studies, and the CDC's own review, contradict Florida's conclusion against vaccination. Cases of myocarditis following mRNA vaccines have occurred but are much less frequent than cases triggered by COVID. The risk is sevenfold higher from the disease than from mRNA vaccines, according to an analysis published in a medical journal based on a review of 22 other studies.

Since leaving his post, Rivkees has been stunned to see the state health department subsumed by political meddling.

About 28,700 children and adults from birth to age 39 have died of COVID in the United States. Florida's anti-vaccine messaging affects people of all ages, Rivkees added, not just those who are younger.

He points out that Florida performed well compared with other states in 2020 and 2021, ranking 38th in COVID deaths per capita despite a large population of older adults. Now it has the sixth-highest rate of COVID deaths in the country.

"There is no question that the rise of misinformation and the politicization of the response has taken a toll on public health," he said.

As in Florida, the Texas health department initially promoted COVID vaccines, warning that Texans who weren't vaccinated were about 20 times as likely to suffer a COVID-associated death. Such sentiments faded last year, as state leaders passed policies to block vaccine mandates and other public health measures. The latest is a prohibition against the use of government funds to promote COVID vaccines. Uptake in Texas is already low, with fewer than 4% of residents getting the bivalent booster that rolled out last year.

At Lubbock's health department, Wells managed to put out a press release saying the city offers COVID vaccines but stopped short of recommending them. "We aren't able to do as big a push as other states," she said.

Some health officials are altering their recommendations, given the current climate. Janet Hamilton, executive director at the Council of State and Territorial Epidemiologists, said clear-cut advice to get vaccinated against COVID works when people trust the scientific establishment, but it risks driving others away from all vaccines. "It's important for public health to meet people where they are," Hamilton said.

Missouri's health department took this tack on X, formerly known as Twitter: "COVID vaccines will be available in Missouri soon, if you're in to that sort of thing. If not, just keep scrolling!"

California is the 14th state to provide some protection against balance billing for ground ambulance rides.

This article was published on Tuesday, November 7, 2023 in KFF Health News.

By Bernard J. Wolfson

Last year, Jennifer Reisz's college-age daughter, Megan, was kicked in the chest multiple times by the family's horse. Megan fell to the ground, unable to move or speak. Though she was alone, her Apple Watch detected her distress and called 911.

She was taken to a hospital in Clovis, a city in Fresno County, near where the Reisz family lives. But the severity of Megan's injuries — four broken ribs and a partially collapsed lung — prompted doctors to transport her 12 miles by ambulance to the Level I trauma center at Community Regional Medical Center in Fresno.

While Megan was still recovering at home from her injuries, she received a $2,400 bill from the ambulance company — after the family's health plan had paid nearly $2,200.

"When we received the bill, I thought our insurance company was processing the claim incorrectly," says Jennifer Reisz. An attorney, Reisz says she then spent hours on the phone with the health plan, the ambulance company, and a few consumer advocates. She learned that the ambulance company was not in the health plan's network and was permitted to bill patients for any uncovered portion of its charges — a practice known as balance billing.

Starting Jan. 1, ground ambulance operators will be barred from doing that because of a new law signed by Democratic Gov. Gavin Newsom. California is the 14th state to provide some protection against balance billing for ground ambulance rides.

At the federal level, an advisory committee established under the No Surprises Act is working on a plan to address the problem nationally.

Both the federal law, which took effect in 2022, and a California law that predates it largely banned balance billing for hospital care and air ambulance services, but not ground ambulance services.

And that is hardly fair, since patients have zero control in a medical emergency over which ambulance company responds, whether it is in network, or how much it will charge.

In California, nearly three-quarters of emergency ground ambulance rides result in out-of-network bills. The average surprise bill for a ground ambulance ride in California is $1,209, the highest in the nation, according to a December study.

The new law, which applies to about 14 million Californians enrolled in state-regulated commercial health plans, limits how much a non-network ambulance operator can charge patients to the amount they would pay for an in-network ambulance.

The law also caps bills for uninsured people, stipulating they can't be charged more than the Medi-Cal or Medicare rate, whichever is greater. (Medi-Cal is California's Medicaid program, providing coverage to people with low incomes or disabilities.) And it prohibits ambulance operators and debt collectors from reporting patients to a credit rating agency or taking legal action against them for at least 12 months after the initial bill.

Under current law, people in distress sometimes decline to call an ambulance for fear of a huge bill, putting themselves or a loved one at risk, says Katie Van Deynze, policy and legislative advocate for Health Access California, which sponsored the legislation. With the new law, she says, "they will have peace of mind."

Existing laws already protect Medicare and Medi-Cal beneficiaries from surprise ground ambulance bills. The new law does not cover the nearly 6 million Californians enrolled in the subset of employer-sponsored health plans that are federally regulated.

The advisory committee working on a federal fix agreed last week on nonbinding proposals that would, among other things, prohibit balance billing for the vast majority of ambulance rides and cap patients' financial liability at $100. The committee plans to formally report its recommendations to Congress early next year for potential legislation.

Under California's new law, patients can expect to save an average of nearly $1,100 per emergency ambulance ride and over $800 per nonemergency ride in the first year, according to a legislative analysis conducted this year.

Health plans will be required to pay ambulance operators the rates set by county authorities, which the study said would increase the average amount insurers pay per ride by around $2,000.

Since ambulance rides account for a tiny percentage of overall health plan spending, those increases should not raise premiums by much.

But local authorities might be tempted to hike ambulance rates over time to increase revenue for publicly run ambulance operators, such as fire departments, says Loren Adler, associate director of the Brookings Schaeffer Initiative on Health Policy. That could prompt health plans to raise ambulance copays, offsetting some of the consumer savings from the new law, Adler says.

Jenn Engstrom, director of CalPIRG, an advocacy group that helped shepherd the law through the legislature, notes there will be built-in accountability, since the legislation requires public reporting of ambulance rates. "If we notice that things start to skyrocket, there will be a need for legislative action or local action," Engstrom says.

Reisz says the ambulance company that transported her daughter wrote off the bill after she made it clear she had no intention of paying it — and after her health plan ponied up a little more. But as she notes, not everyone is a lawyer adept at arguing their cause.

Even if you are no rhetorical wizard, you can take simple steps to protect yourself against errors or ambulance operators that disregard the new law.

Check your insurance policy to know your deductible and any copay or coinsurance should you ever need an ambulance. If you get an ambulance bill, don't pay it right away. Check your insurer's explanation of benefits to make sure what it says you owe matches what you think your cost-sharing amount should be. If the bill is higher, the ambulance company may be trying to pull a fast one. Call the ambulance company and tell them they need to knock the bill down. If they don't, file a complaint with your health plan and include a copy of the bill.

If you disagree with your plan's decision, or it takes more than 30 days for the plan to respond, take your complaint to the regulator.

The new law requires your insurer to tell you if your health plan is regulated by the state and thus subject to the statute. If it is, the regulator is likely to be the Department of Managed Health Care. You can contact that agency online (www.healthhelp.ca.gov) or by phone at 1-888-466-2219. If your health plan is regulated by the Department of Insurance, you can file a complaint online (www.insurance.ca.gov) or call 1-800-927-4357.

Another good resource is the Health Consumer Alliance, which offers free legal assistance in multiple languages. Call 1-888-804-3536.

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

Bernard J. Wolfson: bwolfson@kff.org, @bjwolfson

Rural residents make up about 14% of the U.S. population but fewer than 5% of incoming medical students.

This article was published on Wednesday, November 1, 2023 in Kaiser Health News.

By Arielle Zionts

TAHLEQUAH, OK — Ashton Glover Gatewood decided to give medical school a second try after learning about a new campus designed for Indigenous students like herself.

Gatewood is now set to be part of the first graduating class at Oklahoma State University's College of Osteopathic Medicine at the Cherokee Nation. Leaders say the physician training program is the only one on a Native American reservation and affiliated with a tribal government.

"This is the school that is everything that I need to be successful," said Gatewood, a member of the Choctaw Nation who also has Cherokee and Chickasaw ancestry. "Literally, the campus, the curriculum, the staff — everything was built and hired and prepared and planned for you."

The program in Tahlequah, the capital of the Cherokee Nation, aims to increase the number of Cherokee and other Indigenous physicians. It's also focused on expanding the number of doctors from all backgrounds who serve rural or tribal communities.

Natasha Bray, an osteopathic physician and dean of the program, said most medical schools teach about barriers that can make it difficult for rural or Indigenous patients to get care and improve their health.

But she said students in Tahlequah get to see these barriers firsthand by studying on the Cherokee Reservation and doing rotations in tiny communities and within facilities run by the federal Indian Health Service.

"Unless you are living in that community, you're part of that community, you're seeing patients from that community — you can't begin to understand what those barriers to care are," said Bray, who is not Native American.

For example, Bray knows that one town on the reservation is a 50-minute drive to the nearest delivery room, and that some patients trying to eat healthier live far from supermarkets and settle for convenience store food.

Rural America has a shortage of health care providers. The Indian Health Service, which serves Indigenous patients in mostly rural areas, has also struggled to recruit and retain staff.

Rural residents make up about 14% of the U.S. population but fewer than 5% of incoming medical students, according to a study of 2017 data. Native Americans are 3% of the population but represented only 0.2% of those accepted to medical school for the 2018-19 school year, according to the Association of American Medical Colleges.

Gatewood, 34, who grew up in a city between the Chickasaw Reservation and Oklahoma City, first attended medical school at the University of Missouri. She said it was a great program, but it didn't match her learning style. And with few Native American students, it left her feeling disconnected from her culture.

She ended up leaving after three semesters. Gatewood went on to become a nurse and earned a master's degree in public health.

Then, in 2019, six years after dropping out of the Missouri medical school, Gatewood learned about Oklahoma State's new campus in Tahlequah. She decided to once more pursue her dream of becoming a doctor. After taking classes in Oklahoma, she's now getting hands-on experience through a family medicine rotation in Baltimore.

Half the 202 medical students in Tahlequah are from rural areas, and nearly a quarter are Native American. Most of the Indigenous students are from Oklahoma tribes. Others come from tribes outside the state, including from Alaska and New Mexico.

Tahlequah has about 16,800 residents. It's more than an hour east of Tulsa, home to Oklahoma State's other osteopathic medicine campus.

Osteopathic physicians, or DOs, attend separate medical schools from allopathic doctors, or MDs. The schools have similar curricula, but osteopathic colleges also teach how to ease patient discomfort through physical manipulation of muscles and bones. Osteopathic schools graduate more students who decide to work in primary care and in rural areas.

The Cherokee Reservation spreads across roughly 7,000 square miles in eastern Oklahoma. It's home to about 150,000 Cherokee citizens, most of whom live in rural areas, said Principal Chief Chuck Hoskin Jr. Hoskin grew up in a small town that was once served by a doctor who traveled across the reservation, treating patients in a recreational vehicle.

The Cherokee Nation now operates 10 hospitals and clinics to ensure that all citizens live within a 30-minute drive of care. Hoskin said this means the reservation has better access to health care than much of rural America.

"There are not many communities in this country in which you would see that sort of investment," he said.

Still, access to care remains challenging for some rural residents on the reservation, Bray said. The reservation has significant poverty, and some people lack cars or cell or internet service. Cherokee residents have high rates of diabetes, obesity, addiction, and heart disease, Bray said.

The Cherokee Nation spent $40 million of its own revenue — including from casinos and federal contracts — to construct the college building on its medical campus, which includes a hospital and outpatient center. The tribe is responsible for maintenance, while Oklahoma State pays for the faculty and equipment.

The college building features large windows, Cherokee symbols etched into concrete, and orange accents — a shoutout to the university's colors. Inside, signs are written in both English and Cherokee.

On a recent afternoon, students practiced osteopathic manipulative therapy on one another inside a classroom. Down the hall in a simulation center, lifelike patient models lay with their mouths agape on hospital beds.

Next door at the hospital, medical student Mackenzie Hattabaugh checked on Chyna Chupco, who was recovering after giving birth to her first baby. Hattabaugh asked Chupco questions to make sure she was reaching recovery milestones and not showing signs of complications. She also felt Chupco's uterus to make sure it was healing properly.

Hattabaugh, who is not Native American, grew up in Muldrow, a town of about 3,300 on the reservation. The 24-year-old said the town sometimes had a doctor but never a hospital or urgent care clinic.

"I would like to go back to around my hometown and perhaps be a staple in my community, to become a physician and provide people health care who usually have to drive 30 minutes or more to get it," said Hattabaugh, a first-generation college student.

Students said studying at the Tahlequah campus prepares them to work in tribal and rural areas in ways that might not be possible at other medical schools.

Charlee Dawson, a 27-year-old medical student and citizen of the Cherokee Nation, said rotations within the Indian Health Service help students understand how the system's care and complex billing procedures differ from those of other health facilities.

The program helps students understand what health problems are more common among Native Americans, Gatewood said. She said her previous medical school taught students about the high rate of diabetes among Black patients, but not the rate for Native Americans, which is the highest of all U.S. racial groups.

The students also said they've learned to ask Indigenous patients not just what pharmaceutical drugs and supplements they're taking, but also whether they're using traditional medications or working with a healer.

Native Americans have long received inadequate, discriminatory, and unethical health care. Children died of infectious disease outbreaks during the boarding school era. The Indian Health Service sterilized thousands of women in the 1960s and '70s. Today, the agency remains chronically underfunded.

This has led some Indigenous people to mistrust the health care system. But several of the Tahlequah students said they've bonded with patients who share similar backgrounds.

"It really comforts patients to know that someone like them is taking care of them," said Caitlin Cosby, a member of the Choctaw Nation.

Cosby, 24, said she once had a patient who asked, "‘Are you Native?' And I said, ‘I am!'"

The patient told Cosby he was proud of her.

Arielle Zionts: azionts@kff.org, @Ajzionts