HHS, as part of the U.S. Global Change Research Program (USGCRP), is announcing the release of the Fifth National Climate Assessment (NCA5).

“It is emotionally and physically draining.”

Natasha Lazartes

39, Brooklyn, New YorkTherapist

I am 39 years old. I had to care for my father, who passed from cancer in 2019; my mother, who passed in November 2021 from cancer; and since my mother’s passing, I have inherited the care of my grandmother. She is 97, diagnosed with moderate dementia, and considered high risk to be left home alone. We had been applying for Medicaid long-term care to receive a home health aide since early November 2021. She finally got a home health aide in January 2022, but it’s been a nightmare. They are so desperate to hire workers that they will take anyone. She was left without an aide on many random days with a late-notice telephone call or text message from the aide needing the day off and the agencies not able to find a replacement in time. I have changed agencies multiple times. My husband has been a great support the entire time. We rely on security cameras we installed in our apartment to see how she is doing while we are at work. How is it on a daily basis? It is emotionally and physically draining. The health care system for the elderly is neglected, broken, and inadequate to meet any demands, even the basic needs.

“When I signed the lease, I felt like I was breaking my promise.”

Robert Ingenito

44, Mamaroneck, New YorkPublic information officer

My father, who is now 93, had me late in life, at age 49. My mother died from cancer when I was 19. Literally on her deathbed, she said to me, “Don’t put your father in a nursing home.” Now, at 44, I’m married, I have a 6-year-old daughter, and for the past five years my dad has lived with us. I work about 20 hours a week, which allowed me to do something other than being his caregiver. If I had to put a price tag on the quality of care I provided to my dad, it would probably be the equivalent of a high-end assisted living facility. But it was becoming really hard for myself, my wife, and our daughter. His level of care was getting to the point of something I just could not sustain. He couldn’t be left alone. I wasn’t getting any sleep. Recently, I made the extremely difficult decision to move him into an assisted living facility. Fortunately, he has the financial resources to do that. For most people, that’s not even an option. I have been happy with the level of care that he’s getting, but when I signed the lease, I felt like I was breaking my promise. I tried my best to follow my mom’s wishes. But there’s only so much I could do, and I had to do it.

“I was a rebellious teen and she never gave up on me, so how am I going to give up on her?”

Karina Ortega

43, DallasCaregiver

My mother was diagnosed with Alzheimer’s in March 2020, but even before then, I knew something was wrong. One day, she went to visit a family friend and was going to donate some clothes to her. Seven hours later, we still hadn’t heard from her. She got lost. Eventually she found a supermarket that was familiar to her and got home. I’m no longer working at all. This has all taken a toll on my life. I do have a younger brother and an older sister, but my sister has a daughter in college and my brother has a 7-year-old. I’m the only one with no children and have always been the one who would take care of my parents. If Mom gets worse and I can’t care for her? That’s something I struggle with. Putting her in a home? In our culture, that’s looked down upon. I was a rebellious teen, and she never gave up on me, so how am I going to give up on her? I just can’t see it in me to leave my mom because she needs me.

“She passed in October. The state says we still owe close to $20,000 for the year Medicaid paid for her nursing home.”

Gay Glenn

61, Topeka, KansasActor

It was costing us $8,000 out-of-pocket to have people come into my mom’s house to help her, and that was only eight hours a day. I’m watching her savings just dwindle. And then she fell. And then she fell again overnight. At the hospital, they found she had a cracked sacrum. She was in rehab for the maximum number of days that Medicare will cover and couldn’t return home. Because she owned a house, had two rentals, savings, and two cars, she had to pay long-term care costs out of her pocket. I think my mom had about $18,000 in the bank. She had five life insurance policies in her children’s names. We cashed out the policies. In one year, she had to pay $65,000 for her care at the nursing home and spend down an additional $37,000 to be able to be eligible for Medicaid. We just sold her house. She passed in October. The state says we still owe close to $20,000 for the year Medicaid paid for her nursing home. I moved here in February of 2019. I certainly didn’t expect to be here going on five years. It was awful — personally all the time and energy and money to do this for her — and it was great. I was able to protect her and make sure everything was OK for her. I said at the memorial service that my mom was there when I took my first breath, and I was there when she took her last. If that’s not the circle of life, I don’t know what is.

“I’m going to take on some extra work to cover the costs.”

Bryan Ness

62, Angwin, CaliforniaBiology professor

We had it all planned. My mom was going to live with us. She has some cognitive issues from the stroke. All of her long-term memory is just fine. Her short-term memory is just nonexistent. We looked at what it would cost for home care. Even if we limited it to just eight hours a day, it’s more expensive than the assisted living place that’s 10 minutes from our house. It’s a wonderful little place. It’s $4,500 a month. That’s still a lot. She’s run out of her own money. There’s no more than the $1,500 she gets from Social Security. We talked to the place and got it down to $4,000. I got really good responses from GoFundMe. A lot of my former students and friends put in some chunks. I hate begging for money. My wife and I are at least at the age where we don’t have kids we’re supporting anymore. But we’re concerned we are going to hurt our own retirement savings. My wife is already 65. We need to keep our retirement plan going, too. They told us: Don’t ruin your own retirement over this. Well, agreed, but we’ve got to take care of my mom, too. We have a relative who’s giving $500 a month. I’m going to take on some extra work to cover the costs. I felt my career could wind down over the next few years, and now I’ve got an $1,800 bill added to my finances from now until whenever.

“I wish I had known that no one was going to help me.”

Stacey Wheeler

60, Greenville, South CarolinaRetiree

My mom was in independent living. I had someone coming in the morning to get her up. Nobody is getting paid enough to say: “Now, come on, you really want to get dressed. Let’s pick out some earrings.” I should have tried 20 people in hopes of finding one who did that. No one is going to waste time with an old person who doesn’t want to do what they don’t want to do. It’s hard to care about grumpy people when you’re barely putting food on the table. My mom got sick and then needed to be in a wheelchair in assisted living. When she sold her condo, she had about $2,500 a month in retirement and she had about $120,000 in the bank. That starts going fast when you hit $7,000 or $8,000 a month. Everyone’s so worried about being sued by people that every time something happened, they wanted her to go to the ER. I wish I had known that no one was going to help me. I would have kept her in independent living and gone through hiring people until I found one. My husband and I were both retired, fortunately. We couldn’t leave town. We tried twice and had to come back. Ironically, the last place she was in, because she was going to run out of money, was the best place. The room wasn’t as big, but the staff were the best there. Mom died in August 2022.

“They had to send her home with us and we had to keep her chemically sedated.”

Jeanette Landin

55, Brattleboro, VermontAssociate professor

There were wildfires where my mother lived out in California that were getting very close and were causing her health problems. Between that and a series of in-home falls and her inability to drive herself to different places, she finally called in November of 2017 and said, “I think I need to come live with you.” We found a house that would be adequate for both my family and her needs. Her dementia started to get worse. We looked at adult day care and found a local place. It was tremendously expensive to do that. But they were good until they got to a point where they contacted me and said she’s not following directions, she’s refusing to do appropriate hygiene. This was early 2022, and we had to pull her out of that service. In early April, she started getting violent and would threaten my husband that she was going to kill him by chopping his head off. And then she would tell me she was going to kill my daughters. One night I had her taken to the hospital and they found she had been in kidney failure. She was still very violent. They looked at placement in a nursing home. Because of the fact she was violent, she couldn’t be placed anywhere. They had to send her home with us, and we had to keep her chemically sedated. From the time she came home till the time she died, it was seven days. We kept our daughters from coming upstairs. We didn’t want them hearing and seeing what was happening because it’s not something I would wish anybody to ever go through. It was awful.

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

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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.

Feylyn Lewis, 35, sacrificed a promising career as a research director in England to return home to Nashville after her mother had a debilitating stroke. They ran up $15,000 in medical and credit card debt while she took on the role of caretaker.

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.

US Health and Retirement Study Analysis

The New York Times-KFF Health News data analysis was based on the Health and Retirement Study, a nationally representative longitudinal survey of about 20,000 people age 50 and older. The analysis defined people age 65 and above as likely to need long-term care if they were assessed to have dementia, or if they reported having difficulty with two or more of six specified activities of daily living: bathing, dressing, eating, getting in and out of bed, walking across a room, and using the toilet. The Langa-Weir classification of cognitive function, a related data set, was used to identify respondents with dementia. The analysis’s definition of needing long-term care assistance is conservative and in line with the criteria most long-term care insurers use in determining whether they will pay for services.

People were described as recipients of long-term care help if they reported receiving assistance in the month before the interview for the study or if they lived in a nursing home. The analysis was developed in consultation with Norma Coe, an associate professor of medical ethics and health policy at the Perelman School of Medicine at the University of Pennsylvania.

The financial toll on middle-class and upper-income people needing long-term care was examined by reviewing data that the HRS collected from 2000 to 2021 on wealthy Americans, those whose net worth at age 65 was in the 50th to 95th percentile, totaling anywhere from $171,365 to $1,827,765 in inflation-adjusted 2020 dollars. This group excludes the super-wealthy. Each individual’s wealth at age 65 was compared with their wealth just before they died to calculate the percentage of affluent people who exhausted their financial resources and the likelihood that would occur among different groups.

To calculate how many people were likely to need long-term care, how many people needing long-term care services were receiving them, and who was providing care to people receiving help, we looked at people age 65 and older of all wealth levels in the 2020-21 survey, the most recent.

The U.S. Health and Retirement Study is conducted by the University of Michigan and funded by the National Institute on Aging and the Social Security Administration.

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

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This story can be republished for free (details).

Around the world, wealthy countries are struggling to afford long-term care for rapidly aging populations. Most spend more than the United States through government funding or insurance that individuals are legally required to obtain. Some protect individuals from exhausting all their income or wealth paying for long-term care. But as in the United States, middle-class and affluent individuals in many countries can bear a substantial portion of the costs. Here’s how five other countries pay for long-term care.

Japan

Long-term care insurance is mandatory for Japanese citizens age 40 and over, while in the United States only a small portion of people voluntarily obtain coverage. Half the funding for Japan’s program comes from tax revenues and half from premiums. Older adults contribute 10% to 30% of the cost of services, depending on their income, and insurance picks up the rest. There is a maximum amount people must spend from their income before the insurance covers the remainder of the cost. Workers can also take up to 93 days of paid leave to help relatives with long-term care needs. Japan assigns a care manager to each person using services; each manager oversees about 40 older adults. In 2020, Japan spent 2% of its gross domestic product on long-term care, 67% more than the United States spent that year.

The Netherlands

The Dutch have included long-term care in their universal health care system since 1968. One public insurance program pays for nursing homes and other institutional settings, and another pays for nursing and personal care at home. Enrollment is mandatory. Dutch taxpayers contribute nearly 10% of their income toward insurance premiums, up to a set amount.Out-of-pocket payments amount to about 7% of the cost of institutional care. General taxes pay for a third program in which municipalities provide financial assistance and social support for older people living at home. There is no private long-term care insurance. The Netherlands spent 4.1% of its gross domestic product on long-term care in 2021, more than any other country tracked by the Organization for Economic Cooperation and Development, and four times the amount the United States spent.

Canada

Provinces and territories fund long-term care services through general tax revenue. Money budgeted is not always enough to cover all services, and some localities give priority to those with the greatest needs. The amount of subsidies people can receive, the costs they have to pay out-of-pocket, and the availability of services vary by province and territory, as they do in the United States with state Medicaid programs. The mix of providers also varies regionally: For instance, nursing home care in Quebec is mostly run by a public system while homes in Ontario are mostly for-profit. Notably, Canada’s long-term care system is separate from its national health care system, which pays for hospitals and doctors with no out-of-pocket costs to patients. In 2021, Canada spent 1.8% of its GDP on long-term care, 80% more than the United States spent.

United Kingdom

Local authorities pay for most long-term care through taxes and central government grants. Private providers usually supply services. Government contributions are based on financial need, with copayments usually required. As in the United States, middle-class and wealthy people pay most or all of the costs themselves. Unlike in the United States, the government provides payments directly to lower-income people so they can hire workers to care for them in their homes. The U.K. has also taken steps to shield people from losing all their wealth to pay for long-term care. It subsidizes care for people with savings and property of less than about $30,000, while in the United States most people don’t qualify for Medicaid until they have run through all but $2,000 to $3,000 of their assets. In 2022, the British government proposed extending subsidies to people who have as much as $105,000 of wealth and property, with a lifetime cap of about $100,000 on how much anyone spends on long-term medical care, excluding room and board in a nursing home. But the plan has been postponed until 2025. In 2021, the United Kingdom spent 1.8% of its GDP on long-term care, 80% more than the United States did.

Singapore

Singapore recently instituted a system of mandatory long-term care insurance for those born in 1980 or later. Citizens and permanent residents are automatically enrolled in an insurance plan called CareShield Life starting at age 30. They must pay premiums until they retire or turn 67 (whichever comes later) or are approved to use services. The government subsidizes 20% to 30% of premiums for those who earn around $2,000 a month or less. Monthly payouts start at about $440. Government subsidies for nursing homes and other institutional care can range from 10% to 75%, depending on ability to pay. Those who make more than $2,000 a month receive no subsidies. CareShield is optional for Singaporeans born in 1979 or earlier; they are covered under an older, voluntary plan. Singapore also provides a means-tested monthly cash grant — this year about $290 — to help with caregiving expenses.

Sources: The National Bureau of Economic Research project on international comparisons of long-term care; Kathleen McGarry; The Commonwealth Fund; Organization for Economic Cooperation and Development; government websites.Note: Spending comparisons with the United States are based on the most recent OECD data and include spending from government and compulsory insurance programs as a percent of each country’s gross domestic product, which is the total monetary value of all the finished goods and services produced within a country’s borders. The comparisons cover people of all ages and exclude spending from voluntary insurance plans and out-of-pocket costs. All currency figures are in U.S. dollars.

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

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Republicans in Congress are “trying to wipe out federal funding to end the HIV epidemic.”

President Joe Biden on Oct. 14, 2023, in remarks at the 2023 Human Rights Campaign National Dinner.

Are Republicans threatening to stop spending federal money to end one of the world’s most pressing public health epidemics? That’s what President Joe Biden said during a dinner hosted by an LGBTQ+ advocacy group.

“In the United States Congress, extreme MAGA Republicans are trying to undo virtually every bit of progress we’ve made,” Biden said Oct. 14 at the Human Rights Campaign event. “They’re trying to wipe out federal funding to end the HIV epidemic.”

Programs to treat HIV and fight its spread have enjoyed bipartisan funding support in recent years, experts said, so Biden’s portrayal signals a significant departure.

When we asked the White House what Biden was referring to, it pointed us to reports of budget recommendations from House Republicans that call for large cuts to the Ending the HIV Epidemic initiative, a Trump administration-era program designed to reduce new HIV infections in the U.S., as well as other programs.

The Senate Appropriations Committee passed a separate spending plan. The recommendations will be subject to negotiation as the House and Senate face a Nov. 17 deadline to pass another spending bill.

We found that although Republicans are recommending significant cuts to HIV prevention efforts across a number of public health agencies, the proposal keeps core funding intact. Meanwhile, political differences are eroding bipartisan support for global HIV-prevention funding.

Despite great strides in prevention and treatment since HIV was first reported in the U.S. in the 1980s, HIV remains at epidemic levels in the U.S. today, with approximately 1.2 million people living with HIV and around 30,000 to 35,000 new infections each year. Experts said cases are rising in the South and in rural areas, and new infection statistics show it is disproportionately affecting Black and Hispanic populations.

What Are the Proposed Cuts?

The AIDS Budget and Appropriations Coalition, a group of more than 100 public health advocacy organizations that track changes in HIV-related federal spending, said a majority of the proposed cuts to domestic HIV funding stem from House Republicans’ effort to eliminate the Ending the HIV Epidemic initiative.

The program started in 2019 with the goal of reducing new HIV infections in the U.S. by 75% by 2025 and 90% by 2030. The program so far worked regionally, targeting areas that have the highest rates of HIV cases for funding.

In 2023, about $573 million was allocated for the program across various agencies, according to KFF’s funding tracker.

• $220 million to the Centers for Disease Control and Prevention.

• $165 million to the Ryan White HIV/AIDS program. (It was named for a 13-year-old diagnosed with HIV in 1984 and is overseen by the Health Resources and Services Administration.)

• $5 million to the Indian Health Service.

• $26 million to the National Institutes of Health for research.

• $157.3 million to community health centers, which have treated around 200,000 HIV patients annually.

The program lags its goals as it approaches the 2025 benchmark. “It’s well designed, well planned, it has targets that makes sense,” said Jeffrey Sturchio, a lead researcher on a Center for Strategic and International Studies report.

Sturchio said the problem is not a fault of design, but funding, adding, “Congress has never fully funded the initiative.”

Sturchio pointed to a range of local and state “bureaucratic hurdles.” Jurisdictions that have pulled together sufficient resources have seen “tremendous progress,” he said, and overall indicators seem to be moving in the right direction.

But covid-19 reduced HIV testing and may have diverted public health efforts, CDC administrators said. KFF Health News reported in April that stakeholders saw progress but worried that it won’t be enough to make the 2030 deadline.

Democrats appear to share this concern. The spending bill proposed by the Democratic-controlled Senate Appropriations Committee maintained or slightly increased funding levels to all HIV-related programs. The committee requested more data about the program, describing its “lack of quantifiable data showing outcomes.”

The House has not yet passed the bill out of committee. We know of some proposed cuts from the bill, which the Republican-led House Appropriations Subcommittee released in July.

It outlines a $1.6 billion cut to the CDC, including a $220 million reduction in “HIV/AIDS, viral hepatitis, sexually transmitted diseases, and tuberculosis prevention” and a $238.5 million cut from the Ryan White HIV/AIDS program. The Ryan White program provides medical care and support services to low-income HIV patients and serves more than half of those diagnosed in the U.S.

The bill also proposes cutting funding to the Minority HIV/AIDS fund by more than half — from $60 million to $28 million. According to HIV.gov, the fund supports prevention and care projects targeting disparities that affect communities of color.

Additional details about how these cuts could affect programs are detailed in a committee report that has not been made public. PolitiFact and some advocacy organizations obtained copies of the report, but the House Appropriations Committee did not respond to questions about it. The report we saw recommended cutting all funding for the Ending the HIV Epidemic initiative.

And House Democrats, advocacy organizations, and KFF Health News have each reported that the Ryan White program and CDC cuts result from a plan to eliminate the Ending the HIV Epidemic initiative.

“If they cut funding, it’s going to have a dramatic and draconian impact on the ability of all of the people who are working in these jurisdictions to improve public health,” said Sturchio, the researcher.

Although the cuts would be dramatic, experts said, they would not eliminate all domestic HIV funding.

“There is certainly a demonstration and a commitment to some of the core HIV programs, but there are millions of dollars of proposed cuts in other areas,” said Lindsey Dawson, associate director for HIV policy at KFF. “These cuts would have a meaningful impact on the ability of programs to provide lifesaving interventions for both HIV care and treatment, as well as prevention.”

The cuts would mean a 16% cut to the CDC’s division of STD prevention, a 9% cut to the Ryan White HIV/AIDS program, and a 53% cut to the Minority HIV/AIDS Fund from fiscal year 2023 to 2024.

These funding cuts are only proposals. They require a vote from the full appropriations committee and would have to pass the House and be negotiated with a Democratic-controlled Senate.

“We’ve heard for a long time that HIV is a bipartisan issue. But what some people forget, is that that bipartisanship was hard fought for over the first decade of the HIV epidemic,” said Dawson.

Other Challenges to HIV/AIDS Spending

The U.S. commitment to global HIV prevention, meanwhile, is also under scrutiny. Rep. Chris Smith (R-N.J.) challenged reauthorizing the President’s Emergency Plan for AIDS Relief, also known as PEPFAR, without first making some changes. Started in 2003 by President George W. Bush, the program distributes funds in more than 50 countries for HIV testing, prevention, treatment, and medications. It also strengthens health care systems to fight AIDS.

Funding for the program has grown over the past 20 years, totaling more than $110 billion. The program reported 25 million lives saved by medical intervention.

Smith, who chairs the House Foreign Affairs subcommittee on Global Health, has expressed concerns that money is being given to nongovernmental organizations that support abortion rights and access.

U.S. law prohibits the direct use of overseas funding to provide abortions or to lobby for access to abortions. This has been the case since 1973. However, organizations that receive U.S. funding can do so with their own non-U.S. funding.

An official from the State Department, which runs the program, confirmed to PolitiFact that PEPFAR is legally restricted from funding abortion or lobbying for abortion access; the official cited the training of staff and partners and the monitoring of procedures to ensure compliance.

Other anti-abortion groups have favored a “Mexico City Policy,’‘ which has required foreign nongovernmental organizations to certify that they would not perform or promote abortion with funds from any source to be eligible for U.S. government funding. Trump applied the policy to PEPFAR, but Biden rescinded it.

The failure to reauthorize PEPFAR would not eliminate the program, and Congress can continue to fund the program without reauthorization, but it could cause some provisions to lapse over the next few years.

The lack of a reauthorization would have significant symbolic impact, said Kellie Moss, KFF’s associate director of global health and HIV policy. “It could make the program more vulnerable during funding discussions without a clear signal of bipartisan support.”

Although reauthorization is being held up, funding has progressed. On Sept. 28, the House passed a State Department and Foreign Operations Appropriations bill, which would fund PEPFAR for another year but implement a Mexico City-like policy provision on all global health funding. This bill would also extend the lapsing provisions for another year.

Our Ruling

Biden said that Republicans in Congress are “trying to wipe out federal funding to end the HIV epidemic.”

A subcommittee of House Republicans has proposed cutting some HIV prevention programs anywhere from 53% to 9% in fiscal 2024, depending on the program.

A committee’s draft report cited by advocacy and policy groups shows these cuts stem from the elimination of the Trump-era Ending the HIV Epidemic initiative, although the committee did not respond to questions about that.

Taken together, these cuts would not eliminate — or “wipe out” — all federal domestic HIV spending, but they do represent a significant cut.

Meanwhile, the House has not moved ahead to reauthorize PEPFAR, which supplies U.S. dollars for global HIV prevention, over Republican concerns about where organizations that receive the money stand on abortion access. But the House has passed one year of PEPFAR funding with some conditions about how it is distributed, which it can do without reauthorizing the program.

Biden’s statement is partially accurate in that significant funding cuts have been proposed by House Republicans, but he exaggerates by saying these efforts would “wipe out” federal funding.

We rate this claim Half True.

KFF Health News Southern correspondent Sam Whitehead contributed to this report.

Our Sources

Email interview with a White House spokesperson, Oct. 17, 2023 

Email interview with a State Department official, Oct. 18, 2023 

Email interview with Michael Finan, communications director for Rep. Chris Smith, Oct. 16, 2023

Interview with Kellie Moss, associate director of Global Health & HIV policy at KFF, Oct. 17, 2023

Interview with Lindsey Dawson, associate director of HIV policy at KFF, Oct. 18, 2023

Interview with Nick Armstrong, manager of advocacy and government affairs at the AIDS Institute, Oct. 18, 2023

Interview with Carl Schmid, executive director of the HIV + Hepatitis Policy Institute, Oct. 18, 2023

Interview with Jeffrey Sturchio, senior associate of the Global Health Policy Center at the Center for Strategic and International Studies, Oct. 25, 2023

AHEAD, “The Six EHE Indicators — Incidence,” accessed Oct. 31, 2023

AIDS United, “The HIV Safety Net Is Under Attack,” accessed Oct. 31, 2023

The Associated Press, “Republican Opposition to Abortion Threatens Global HIV/AIDS Program That Has Saved 25 Million Lives,” Sept. 11, 2023

Center for Family and Human Rights, “Dear Colleague, President Biden has hijacked PEPFAR, the $6 billion a year foreign aid program designed to mitigate,” June 6, 2023

Center for Family and Human Rights, “PEPFAR Coalition Letter,” May 1, 2023

Center for Strategic and International Studies, “Can the Ending the HIV Epidemic in the U.S. Initiative Succeed?” Aug. 26, 2022

Centers for Disease Control and Prevention, “Core Indicators for Monitoring the Ending the HIV Epidemic Initiative,” Oct. 17, 2023

Centers for Disease Control and Prevention, “Dear Colleagues: What’s New | About the Division of HIV/AIDS Prevention,” May 24, 2022

Centers for Disease Control and Prevention, “EHE Accomplishments,” Sept. 21, 2023

Centers for Disease Control and Prevention, “Transgender Women Urgently Need More HIV Prevention and Treatment Services, New CDC Data Show,” April 15, 2021

Centers for Disease Control and Prevention, “2021 HIV Incidence | NCHHSTP Newsroom,” May 23, 2023

Centers for Disease Control and Prevention, “Estimated HIV Incidence and Prevalence in the United States, 2017-2021: National Profile,” May 23, 2023

Congress.gov, “Senate Appropriations LHHSE Committee Report,” July 27, 2023 

Fox News, “Biden Administration ‘Hijacking’ George Bush AIDS Program to Push Abortion in Africa: GOP Congressman,” June 10, 2023

HIV.gov, “Ending the HIV Epidemic,” Aug. 1, 2023

HIV.gov, “Expanding PrEP Coverage in the United States to Achieve EHE Goals,” Oct. 18, 2023

HIV.gov, “HIV & AIDS Trends and U.S. Statistics Overview,” Oct. 3, 2023

HIV.gov, “Minority HIV/AIDS Fund in Action,” May 16, 2023 

HIV.gov, “What Is the Minority HIV/AIDS Fund?,” Sept. 25, 2019

House Appropriations Committee, “FY24 LHHSE Appropriations Bill Summary,” July 13, 2023

House Appropriations Committee, “House Approves H.R. 4665, The Department of State, Foreign Operations, and Related Programs Appropriations Act,” Sept. 28, 2023

House Democrats Appropriations Committee, “House Republican Funding Bill Kicks Teachers Out of Classrooms, Takes Away Job Opportunities, and Harms Women and Children,” July 13, 2023 

KFF, “PEPFAR Reauthorization: The Debate About Abortion,” Sept. 21, 2023

KFF, “PEPFAR Reauthorization 2023: Key Issues,” March 13, 2023

KFF, “The Mexico City Policy: An Explainer,” Jan. 28, 2021

KFF, “The U.S. Ending the HIV Epidemic (EHE) Initiative: What You Need to Know,” Feb. 9, 2021

KFF, “The U.S. Government and International Family Planning & Reproductive Health: Statutory Requirements and Policies,” Oct. 27, 2023

KFF, “The U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) ,” July 26, 2023

KFF, “U.S. Federal Funding for HIV/AIDS: Trends Over Time,” March 5, 2019

KFF Health News, “In Move to Slash CDC Budget, House Republicans Target Major HIV Program Trump Launched,” Sept. 8, 2023

KFF Health News, “US Officials Want to End the HIV Epidemic by 2030. Many Stakeholders Think They Won’t,” April 24, 2023

National Alliance of State and Territorial AIDS Directors, “FY2024 Appropriations for Federal HIV/AIDS Programs,” July 28, 2023

NBC News, “How Tennessee Axed Millions in HIV Funds Amid Scrutiny From Far-Right Provocateurs,” Feb. 2, 2023

NBC News, “Tennessee Blocked $8 Million for HIV, Now Ends Up With $13 Million, Stunning Advocates,” April 21, 2023

NBC News, “U.S. Progress in HIV Fight Continues to Trail Many Other Rich Nations,” May 23, 2023

NPR, “What’s Behind the Debate to Re-Authorize PEPFAR, the Widely Hailed Anti-HIV Effort?” Sept. 29, 2023

Planned Parenthood, “The Quickie: Tennessee to Pull Federal Funding for HIV Prevention to Avoid Giving Grants to Planned Parenthood,” Jan. 27, 2023 

Reuters, “US State Dept Slams Congress for Failure to Renew Anti-AIDS Program,” Oct. 3, 2023

Roll Call, “PEPFAR Reauthorization Debate Highlights Splits in GOP,” Sept. 21, 2023

Ryan White HIV/AIDS Program, “Available Care & Services | Ryan White HIV/AIDS Program,” Feb. 2022

Ryan White HIV/AIDS Program, “Home page,” accessed Oct. 31, 2023

Ryan White HIV/AIDS Program, “Ryan White HIV/AIDS Program Annual Client-Level Data Report 2020,” December 2021

San Francisco AIDS Foundation, “Devastating Cuts Proposed to Federal HIV Budget — San Francisco AIDS Foundation,”  July 14, 2023

The Heritage Foundation, “Reassessing America’s $30 Billion Global AIDS Relief Program,” May 1, 2023

The New Yorker, “Abortion Opponents Are Targeting a Signature G.O.P. Public-Health Initiative,” Aug. 24, 2023

The New York Times, “Tennessee’s Rejection of Federal Funds to Curb HIV Alarms Prevention Groups,” March 24, 2023

The Washington Post, “Lifesaving PEPFAR Program Faces a New Threat: U.S. Abortion Politics,” July 29, 2023

The Washington Post, “Opinion | George W. Bush: Michael Gerson’s Words Make the Case for Saving PEPFAR,” Sept. 13, 2023

The White House, “Remarks by President Biden and First Lady Jill Biden at the 2023 Human Rights Campaign National Dinner,” Oct. 14, 2023

U.S. Congressman Chris Smith (R-N.J.), “Biden Has Hijacked PEPFAR to Promote Abortion,” Sept. 28, 2023

U.S. Senate Committee on Appropriations, “FY 24 LHHS Report,” July 27, 2023

U.S. Senate Committee on Appropriations, “Senate Appropriations Committee Approves Defense, Interior-Environment, LHHS, and Homeland Security Bills,” July 27, 2023

U.S. State Department, “Results and Impact — PEPFAR,” accessed Oct. 31, 2023

U.S. State Department, “The United States President’s Emergency Plan for AIDS Relief,” accessed Oct. 31, 2023

YouTube, “Biden Has Hijacked PEPFAR to Promote Abortion,” Sept. 28, 2023

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

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Today we bring you the story of a patient seeking the RSV vaccine — and how her frustrating journey illustrates why it can be so hard in the United States to get an important medicine recommended by federal regulators.

Hannah Fegley of Silver Spring, Md., says she spent seven hours on the phone last month — the eighth month of her pregnancy — with insurers, pharmacy benefit managers and half a dozen pharmacies trying to obtain Pfizer’s new RSV shot, called Abrysvo.

The Health 202 is a coproduction of The Washington Post and KFF Health News.

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Respiratory syncytial virus puts up to 2 percent of babies in the hospital each year because their tiny airways don’t tolerate the inflammation. While most recover with supportive care, as many as 300 kids under 5 years old die each year and the majority of them are under 1. A bad case of RSV in infancy can mean a lifetime of asthma.  

Fegley says two of her friends saw their babies land in intensive care last year, a bad one for RSV. So she was eager to get the shot; she has a 4-year-old in preschool who, she says, “brings home every virus.” 

One of KFF Health News’ signature projects is the Bill of the Month, where readers and listeners send us stories about how the U.S. health system is failing them. Often, the problems they encounter connect directly to holes in government policy. Fegley’s story shows how regulators’ recommendations trickle down into a fragmented health system — leaving patients in the lurch.   

The Pfizer vaccine (list price: about $300), confers immunity to the fetus through the mother. As an alternative, the Advisory Committee on Immunization Practices also recommended AstraZeneca’s Beyfortus (about $500), a monoclonal antibody against the virus to administer to babies after birth. Fegley’s obstetrician didn’t carry the vaccine. So she gave Fegley a prescription to get it at a pharmacy, predicting (correctly) that many pediatricians wouldn’t stock Beyfortus.

Pharmacies typically stock RSV vaccines because the CDC also recommends them for people over 60 — a large and lucrative market, even though scientists and public health authorities agree the more obvious use is in infants. There are two different RSV vaccines approved for older Americans: the Pfizer shot, which is also approved for pregnant women, and a GlaxoSmithKline shot that is not. 

Fegley’s insurer uses CVS-Caremark as its pharmacy benefits manager, which of course uses CVS Pharmacy. (Both are part of CVS Health Corp.) And CVS, she discovered, only stocks the GSK vaccine. 

(Is your head spinning yet? Hers was. And she is health-care literate —  a social worker whose husband is a doctor. “We’re told we have choice, but we really do not,” she said.) 

After a phone complaint, a Caremark representative granted Fegley an “override” allowing her to try other pharmacies. She called them, but many said they’d only give the Pfizer shot to people 60 and over.

“We’re currently completing the final steps needed to offer the maternal RSV vaccine and hope to make it available at our pharmacies soon,” said Matt Blanchette, a CVS Health spokesman representing Caremark and the pharmacy. “Patients should check with their insurer to confirm if the vaccine is covered by their individual plan.”

One smaller pharmacy said by phone it had a dose for Fegley, but when they checked her insurance at the counter, it was denied. She filled out forms to get a shot at both Costco and Walgreens. Denied. 

She didn’t want to pay $300 or more for the shot out-of-pocket because she knew that under Obamacare, most insurers must cover all ACIP-recommended vaccines free of charge. So how can it be so hard to obtain a shot that the FDA and CDC say can save babies’ lives? Let us count the ways.

• One: The Affordable Care Act gives insurers more than a year after a new vaccine wins ACIP’s stamp of approval to start covering it. 
• Two: To keep costs down, pharmacies try to get deals on similar products by contracting with just one drugmaker. GSK didn’t finish its application to the FDA for approval to give its shot to pregnant women.
• Three: Many pharmacies don’t like giving pregnant women shots, fearing liability.
• Four: Both obstetricians (for the Pfizer shot) and pediatricians (the monoclonal antibody) have a hard time stocking such expensive medicines  — particularly with insurance reimbursement uncertain.

“Cost is the big issue,” said Steven Abelowitz of Coastal Kids, a big California group practice. “For us, it was a tough, risky decision: We’ve spent millions to order batches and we don’t know if we’ll get reimbursed,” he said. “Smaller practices just don’t have the money.”

There’s a happy-ish ending: This month, a Caremark representative left Fegley a voice mail saying she had an override to get the Pfizer vaccine at Costco for $105 out of pocket. If she wanted it free, the rep added, she should contact her husband’s employer. 

With some resentment, she says, she paid for the shot.

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

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The U.S. spends huge amounts of money on health care that does little or nothing to help patients, and may even harm them. In Colorado, a new analysis shows that the number of tests and treatments conducted for which the risks and costs exceed the benefits has barely budged despite a decade-long attempt to tamp down on such care.

The state — including the government, insurers, and patients themselves — spent $134 million last year on what is called low-value care, according to the report by the Center for Improving Value in Health Care, a Denver nonprofit that collects billing data from health plans across Colorado. The top low-value items in terms of spending in each of the past three years were prescriptions for opiates, prescriptions for multiple antipsychotics, and screenings for vitamin D deficiency, according to the analysis.

Nationwide, those treatments raise costs, lead to health complications, and interfere with more appropriate care. But the structure of the U.S. health system, which rewards doctors for providing more care rather than the right care, has made it difficult to stop such waste. Even in places that have reduced or eliminated the financial incentive for additional testing, such as Los Angeles County, low-value care remains a problem.

And when patients are told by physicians or health plans that tests or treatments aren’t needed, they often question whether they are being denied care.

While some highly motivated clinicians have championed effective interventions at their own hospitals or clinics, those efforts have barely moved the needle on low-value care. Of the $3 trillion spent each year on health care in the U.S., 10% to 30% consists of this low-value care, according to multiple estimates.

“There’s a culture of ‘more is better,’” said Mark Fendrick, director of the University of Michigan Center for Value-Based Insurance Design. “And ‘more is better’ is very hard to overcome.”

To conduct its study, the Center for Improving Value in Health Care used a calculator developed by Fendrick and others that quantifies spending for services identified as low-value care by the Choosing Wisely campaign, a collaborative effort of the American Board of Internal Medicine Foundation and now more than 80 medical specialty societies.

Fendrick said the $134 million tallied in the report represents just “a small piece of the universe of no- and low-value care” in Colorado. The calculator tracks only the 58 services that developers were most confident reflected low-value care and does not include the costs of the cascade of care that often follows. Every dollar spent on prostate cancer testing in men over 70, for example, results in $6 in follow-up tests and treatments, according to an analysis published in JAMA Network Open in 2022.

In 2013, Children’s Hospital Colorado learned it had the second-highest rate of CT abdominal scans — a low-value service — among U.S. children’s hospitals, with about 45% of kids coming to the emergency room with abdominal pain getting the imaging. Research had shown that those scans were not helpful in most cases and exposed the children to unnecessary radiation.

Digging into the problem, clinicians there found that if ER physicians could not find the appendix on an ultrasound, they swiftly ordered a CT scan.

New protocols implemented in 2016 have surgeons come to the ER to evaluate the patient before a CT scan is ordered. The surgeons and emergency doctors can then decide whether the child is at high risk of appendicitis and needs to be admitted, or at low risk and can be sent home. Within two years, the hospital cut its rate of CT scans on children with abdominal pain to 10%, with no increase in complications.

“One of the hardest things to do in this work is to align financial incentives,” said Lalit Bajaj, an emergency physician at Children’s Colorado who championed the effort, “because in our health care system, we get paid for what we do.”

Cutting CT scans meant less revenue. But Children’s Colorado worked with an insurance plan to create an incentive program. If the hospital could hold down the rate of high-cost imaging, saving the health plan money, it could earn a bonus from the insurer at the end of the year that would partly offset the lost revenue.

But Bajaj said it’s tough for doctors to deal with patient expectations for testing or treatment. “It’s not a great feeling for a parent to come in and I tell them how to support their child through the illness,” Bajaj said. “They don’t really feel like they got testing done. ‘Did they really evaluate my child?’”

That was a major hurdle in treating kids with bronchiolitis. That respiratory condition, most often caused by a virus, sends thousands of kids every winter to the ER at Children’s, where unneeded chest X-rays were often ordered.

“The data was telling us that they really didn’t provide any change in care,” Bajaj said. “What they did was add unnecessary expense.”

Too often, doctors reading the X-rays mistakenly thought they saw a bacterial infection and prescribed antibiotics. They would also prescribe bronchodilators, like albuterol, they thought would help the kids breathe easier. But studies have shown those medicines don’t relieve bronchiolitis.

Bajaj and his colleagues implemented new protocols in 2015 to educate parents on the condition, how to manage symptoms until kids get better, and why imaging or medication is unlikely to help.

“These are hard concepts for folks,” Bajaj said. Parents want to feel their child has been fully evaluated when they come to the ER, especially since they are often footing more of the bill.

The hospital reduced its X-ray rate from 40% in the 17 months before the new protocols to 29% in the 17 months after implementation, according to Bajaj. The use of bronchodilators dropped from 36% to 22%.

Part of the secret of Children’s success is that they “brand” their interventions. The hospital’s quality improvement team gathers staff members from various disciplines to brainstorm ways to reduce low-value care and assign a catchy slogan to the effort: “Image gently” for appendicitis or “Rest is best” for bronchiolitis.

“And then we get T-shirts made. We get mouse pads and water bottles made,” Bajaj said. “People really do enjoy T-shirts.”

In California, the Los Angeles County Department of Health Services, one of the largest safety-net health systems in the country, typically receives a fixed dollar amount for each person it covers regardless of how many services it provides. But the staff found that 90% of patients undergoing cataract surgery were getting extensive preoperative testing, a low-value service. In other health systems, that would normally reflect a do-more-to-get-paid-more scenario.

“That wasn’t the case here in LA County. Doctors didn’t make more money,” said John Mafi, an associate professor of medicine at UCLA. “It suggests that there’s many other factors other than finances that can be in play.”

As quality improvement staffers at the county health system looked into the reasons, they found the system had instituted a protocol requiring an X-ray, electrocardiograms, and a full set of laboratory tests before the surgery. A records review showed those extra tests weren’t identifying problems that would interfere with an operation, but they did often lead to unnecessary follow-up visits. An anomaly on an EKG might lead to a referral to a cardiologist, and since there was often a backlog of patients waiting for cardiology visits, the surgery could be delayed for months.

In response, the health system developed new guidelines for preoperative screenings and relied on a nurse trained in quality improvement to advise surgeons when preoperative testing was warranted. The initiative drove down the rates of chest X-rays, EKGs, and lab tests by two-thirds, with no increase in adverse events.

The initiative lost money in its first year because of high startup costs. But over three years, it resulted in modest savings of about $60,000.

“A fee-for-service-driven health system where they make more money if they order more tests, they would have lost money,” Mafi said, because they make a profit on each test.

Even though the savings were minimal, patients got needed surgeries faster and did not face a further cascade of unnecessary testing and treatment.

Fendrick said some hospitals make more money providing all those tests in preparation for cataract surgery than they do from the surgeries themselves.

“These are older people. They get EKGs, they get chest X-rays, and they get bloodwork,” he said. “Some people need those things, but many don’t.”

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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!”

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

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