Money talks.

The United States faces a serious shortage of primary care physicians for many reasons, but one, in particular, is inescapable: compensation.

Substantial disparities between what primary care physicians earn relative to specialists like orthopedists and cardiologists can weigh into medical students’ decisions about which field to choose. Plus, the system that Medicare and other health plans use to pay doctors generally places more value on doing procedures like replacing a knee or inserting a stent than on delivering the whole-person, long-term health care management that primary care physicians provide.

As a result of those pay disparities, and the punishing workload typically faced by primary care physicians, more new doctors are becoming specialists, often leaving patients with fewer choices for primary care.

“There is a public out there that is dissatisfied with the lack of access to a routine source of care,” said Christopher Koller, president of the Milbank Memorial Fund, a foundation that focuses on improving population health and health equity. “That’s not going to be addressed until we pay for it.”

Primary care is the foundation of our health care system, the only area in which providing more services — such as childhood vaccines and regular blood pressure screenings — is linked to better population health and more equitable outcomes, according to the National Academies of Sciences, Engineering, and Medicine, in a recently published report on how to rebuild primary care. Without it, the national academies wrote, “minor health problems can spiral into chronic disease,” with poor disease management, emergency room overuse, and unsustainable costs. Yet for decades, the United States has underinvested in primary care. It accounted for less than 5% of health care spending in 2020 — significantly less than the average spending by countries that are members of the Organization for Economic Cooperation and Development, according to the report.

A $26 billion piece of bipartisan legislation proposed last month by Sen. Bernie Sanders (I-Vt.), chair of the Senate Health, Education, Labor, and Pensions Committee, and Sen. Roger Marshall (R-Kan.) would bolster primary care by increasing training opportunities for doctors and nurses and expanding access to community health centers. Policy experts say the bill would provide important support, but it’s not enough. It doesn’t touch compensation.

“We need primary care to be paid differently and to be paid more, and that starts with Medicare,” Koller said.

How Medicare Drives Payment

Medicare, which covers 65 million people who are 65 and older or who have certain long-term disabilities, finances more than a fifth of all health care spending — giving it significant muscle in the health care market. Private health plans typically base their payment amounts on the Medicare system, so what Medicare pays is crucial.

Under the Medicare payment system, the amount the program pays for a medical service is determined by three geographically weighted components: a physician’s work, including time and intensity; the practice’s expense, such as overhead and equipment; and professional insurance. It tends to reward specialties that emphasize procedures, such as repairing a hernia or removing a tumor, more than primary care, where the focus is on talking with patients, answering questions, and educating them about managing their chronic conditions.

Medical students may not be familiar with the particulars of how the payment system works, but their clinical training exposes them to a punishing workload and burnout that is contributing to the shortage of primary care physicians, projected to reach up to 48,000 by 2034, according to estimates from the Association of American Medical Colleges.

The earnings differential between primary care and other specialists is also not lost on them. Average annual compensation for doctors who focus on primary care — family medicine, internists, and pediatricians — ranges from an average of about $250,000 to $275,000, according to Medscape’s annual physician compensation report. Many specialists make more than twice as much: Plastic surgeons top the compensation list at $619,000 annually, followed by orthopedists ($573,000) and cardiologists ($507,000).

“I think the major issues in terms of the primary care physician pipeline are the compensation and the work of primary care,” said Russ Phillips, an internist and the director of the Harvard Medical School Center for Primary Care. “You have to really want to be a primary care physician when that student will make one-third of what students going into dermatology will make,” he said.

According to statistics from the National Resident Matching Program, which tracks the number of residency slots available for graduating medical students and the number of slots filled, 89% of 5,088 family medicine residency slots were filled in 2023, compared with a 93% residency fill rate overall. Internists had a higher fill rate, 96%, but a significant proportion of internal medicine residents eventually practice in a specialty area rather than in primary care.

No one would claim that doctors are poorly paid, but with the average medical student graduating with just over $200,000 in medical school debt, making a good salary matters.

Not in It for the Money

Still, it’s a misperception that student debt always drives the decision whether to go into primary care, said Len Marquez, senior director of government relations and legislative advocacy at the Association of American Medical Colleges.

For Anitza Quintero, 24, a second-year medical student at the Geisinger Commonwealth School of Medicine in rural Pennsylvania, primary care is a logical extension of her interest in helping children and immigrants. Quintero’s family came to the United States on a raft from Cuba before she was born. She plans to focus on internal medicine and pediatrics.

“I want to keep going to help my family and other families,” she said. “There’s obviously something attractive about having a specialty and a high pay grade,” Quintero said. Still, she wants to work “where the whole body is involved,” she said, adding that long-term doctor-patient relationships are “also attractive.”

Quintero is part of the Abigail Geisinger Scholars Program, which aims to recruit primary care physicians and psychiatrists to the rural health system in part with a promise of medical school loan forgiveness. Health care shortages tend to be more acute in rural areas.

These students’ education costs are covered, and they receive a $2,000 monthly stipend. They can do their residency elsewhere, but upon completing it they return to Geisinger for a primary care job with the health care system. Every year of work there erases one year of the debt covered by their award. If they don’t take a job with the health care system, they must repay the amount they received.

Payment Imbalances a Source of Tension

In recent years, the Centers for Medicare & Medicaid Services, which administers the Medicare program, has made changes to address some of the payment imbalances between primary care and specialist services. The agency has expanded the office visit services for which providers can bill to manage their patients, including adding non-procedural billing codes for providing transitional care, chronic care management, and advance care planning.

In next year’s final physician fee schedule, the agency plans to allow another new code to take effect, G2211. It would let physicians bill for complex patient evaluation and management services. Any physician could use the code, but it is expected that primary care physicians would use it more frequently than specialists. Congress has delayed implementation of the code since 2021.

The new code is a tiny piece of overall payment reform, “but it is critically important, and it is our top priority on the Hill right now,” said Shari Erickson, chief advocacy officer for the American College of Physicians.

It also triggered a tussle that highlights ongoing tension in Medicare physician payment rules.

The American College of Surgeons and 18 other specialty groups published a statement describing the new code as “unnecessary.” They oppose its implementation because it would primarily benefit primary care providers who, they say, already have the flexibility to bill more for more complex visits.

But the real issue is that, under federal law, changes to Medicare physician payments must preserve budget neutrality, a zero-sum arrangement in which payment increases for primary care providers mean payment decreases elsewhere.

“If they want to keep it, they need to pay for it,” said Christian Shalgian, director of the division of advocacy and health policy for the American College of Surgeons, noting that his organization will continue to oppose implementation otherwise.

Still, there’s general agreement that strengthening the primary care system through payment reform won’t be accomplished by tinkering with billing codes.

The current fee-for-service system doesn’t fully accommodate the time and effort primary care physicians put into “small-ticket” activities like emails and phone calls, reviews of lab results, and consultation reports. A better arrangement, they say, would be to pay primary care physicians a set monthly amount per patient to provide all their care, a system called capitation.

“We’re much better off paying on a per capita basis, get that monthly payment paid in advance plus some extra amount for other things,” said Paul Ginsburg, a senior fellow at the University of Southern California Schaeffer Center for Health Policy and Economics and former commissioner of the Medicare Payment Advisory Commission.

But if adding a single five-character code to Medicare’s payment rules has proved challenging, imagine the heavy lift involved in overhauling the program’s entire physician payment system. MedPAC and the national academies, both of which provide advice to Congress, have weighed in on the broad outlines of what such a transformation might look like. And there are targeted efforts in Congress: for instance, a bill that would add an annual inflation update to Medicare physician payments and a proposal to address budget neutrality. But it’s unclear whether lawmakers have strong interest in taking action.

“The fact that Medicare has been squeezing physician payment rates for two decades is making reforming their structure more difficult,” said Ginsburg. “The losers are more sensitive to reductions in the rates for the procedures they do.”

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

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The Biden administration’s first major step toward imposing limits on the pharmacy benefit managers who act as the drug industry’s price negotiators is backfiring, pharmacists say. Instead, it’s adding to the woes of the independent drugstores it was partly designed to help.

The so-called PBMs have long clawed back a fee from pharmacies weeks or months after they dispense a drug. A new rule, which governs Medicare’s drug program, is set to take effect Jan. 1 and requires PBMs to take most of their “performance fees” at the time prescriptions are filled.

The clawbacks have ballooned from about $9 million in 2010 to $12.6 billion in 2021, according to the Medicare Payment Advisory Commission, an agency created to advise Congress on the program for people who are 65 and older or have disabilities.

Performance fees have also boosted Medicare patients’ prescription costs at the pharmacy counter by hundreds of millions of dollars, although insurers assert that the fees enable them to charge lower premiums.

Pharmacist groups supported the Medicare rule change, but they didn’t anticipate the PBMs’ response, which has been to demand they accept new contracts with draconian cuts to their payments for dispensing medicines, said Ronna Hauser, vice president of the National Community Pharmacists Association, which represents independent drugstores. If pharmacies refuse the contracts, they risk losing Medicare customers — likely to the same giant PBM conglomerates, which have absorbed a growing share of the pharmacy business in recent years.

PBMs sit at the center of the U.S. supply chain for drugs, where they say they negotiate lower prices for insurers — including Medicare — and for employers and their workers. But the organizations are loathed by independent drugstores, drugmakers, and patients alike, who accuse them of siphoning money from what is already the world’s most expensive health care system without providing additional value.

PBM practices even put the squeeze on national chains like Rite Aid, Kroger, and Walgreens, which aren’t part of the conglomerates. Even CVS Health, which owns one of the three leading PBMs, has closed stores or trimmed staff as it pushes consumers to mail-order pharmacy services.

The pressure on in-store pharmacists and technicians has led to a series of walkouts this fall by CVS and Walgreens employees who say tight staffing has caused burnout and threatened patients’ safety.

Misery for Small Pharmacies

Under the current system, when a pharmacy fills a prescription, the PBM tells it what the patient owes and what the PBM will pay the pharmacy. The PBM aggregates these payments and sends a check later. Often, however, the PBM will deduct a performance fee from the pharmacy, said Doug Hoey, CEO of the National Community Pharmacists Association.

“When you’re filling the prescription, the PBM tells you the patient pays $20 for this drug, we’ll pay you $100,” Hoey said. “As the pharmacist, I say, OK, I get a total of $120 for a drug that cost me $110 from the wholesaler. Then three months later, the PBM says, ‘Actually, I’m only going to pay you $83.’ So I lost $17 on the sale and I have no ability to object.”

One performance measure is patient adherence. If patients don’t take all their drugs, pharmacists can be slapped with a fee for poor performance, although they have no control over the patient’s actions. Sometimes pharmacists are dinged for the prescribing physician’s mistakes, Hoey said.

In the early fall, PBM giant Express Scripts sent out confidential contracts announcing that in 2024 it will pay pharmacies roughly 10% below what they typically pay to buy wholesale brand-name drugs — meaning they could lose money on every prescription they fill, according to two independent pharmacists who received the documents. They declined to share the contracts because they are subject to nondisclosure agreements with Express Scripts.

In a statement, Express Scripts said that “our reimbursement rates to pharmacies for brand drugs vary based on a number of factors.” The company said nearly 90% of the nation’s 20,000 or so independent pharmacies had accepted its terms.  

Kare Drugs, which runs two New Mexico pharmacies, was among those that refused the Express Scripts contract. As a result, the pharmacy is “preparing for the hardest part, which will be potentially transferring patients away,” said owner Ashley Seyfarth.

Seniors who are currently enrolling in Medicare plans for next year may be confused when they discover that their insurance will no longer allow them to pick up medications at their usual pharmacy, said Ben Jolley, a Salt Lake City pharmacist and consultant to other independent pharmacists. Jolley said his drugstore expects to lose at least 100 customers after refusing a contract with a large PBM.

A Double Whammy

For the first months of 2024, pharmacies will face a double whammy. PBMs will pay them less for the drugs they dispense, while the pharmacies also face clawbacks on drugs dispensed in the last quarter of 2023.

The Jan. 1 rule change was partly designed to relieve Medicare patients, who often pay a fixed percentage of a drug’s price as a copayment. That copay is based on the price the drug plan or PBM promises the pharmacy at the moment of sale. But the clawbacks have resulted in patients overpaying by hundreds of millions of dollars, Hoey said. That’s because their copays at the counter ended up being a higher percentage of the drug’s final pharmacy price, once the performance fees were deducted.

Seyfarth, who said she paid more than half a million dollars in PBM fees last year, said that to deal with the pending pinch her pharmacy was coming up with new ways to earn cash, including charging patients for delivery services and starting an all-cash concierge clinic.

Some pharmacies are setting aside savings or taking out short-term loans to cover losses in the early months of next year. “I’m hoping we’ve made the right calculations and will get through this,” said Marc Ost, co-owner of Eric’s Rx Shoppe in Horsham, Pennsylvania.

The unintended consequences of the rule are likely to aggravate the problems of community pharmacists, who find it increasingly difficult to carry the most popular, expensive new drugs, Hauser said.

Integrated PBM-insurance companies — particularly UnitedHealth Group, CVS Health, and Cigna, each of which is composed of a major insurer, PBM, and other companies — have gained an increasing share of their revenues from specialty pharmacy drugs, which account for more than half of U.S. drug spending.

These behemoth companies have negotiating power with drugmakers that enables them to sell a diabetes drug like Ozempic (sold under the name Wegovy for weight loss), for example, for about $900 a month. “An independent pharmacy can’t even buy it at that price,” Hauser said. “If they dispense Ozempic, they are losing money.”

Express Scripts has said it wants to help independent pharmacies survive, Hoey said, but hasn’t responded to a June letter in which he asked the company to provide breathing space by imposing the 2023 clawbacks gradually over 12 months. CMS this month said it “strongly recommends” but does not require PBMs to come up with payment plans for pharmacies.

In its statement, Express Scripts said it was “committed to reimbursing pharmacies fairly, ensuring Medicare beneficiaries have safe, quality pharmacies in their network, and giving beneficiaries all available discounts at the pharmacy counter.”

After a parade of hearings — and an ad campaign from drugmakers — attacking the PBMs, Senate and House committees have advanced bipartisan bills to tighten controls on the companies. Senate Finance Committee bills would require the Department of Health and Human Services to issue rules ensuring that PBM payments to pharmacies and other contract terms are reasonable, and that PBMs no longer impose unfair pharmacy performance requirements, said Julie Allen, a law firm lobbyist representing the National Association of Specialty Pharmacy. 

“These statutory changes are essential to addressing problems with the Medicare Part D program and to saving specialty pharmacies and other pharmacies,” she said in an email.

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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A Catholic hospital system is suing several California patients and their advocates because the patients allegedly refused to be discharged. The suits invoke a novel legal approach: accusing them of trespassing under a California law intended to stop anti-abortion protesters from blocking access to health facilities.

Dignity Health has filed three lawsuits in Sacramento County accusing patients of “commercial blockade” for refusing to vacate hospital beds even though the health care provider had deemed them medically and legally eligible to either go home or go to another facility. Dignity alleges the patients “unreasonably and unlawfully” refused discharge, disrupting its ability to serve others at a time when health facilities were overwhelmed by covid-19.

Relatives and advocates say the patients were exercising their right to be discharged to a facility that offered appropriate care and that they could afford, not simply sent home without the ability to take care of themselves.

The lawsuits, one of which is scheduled to begin trial proceedings Nov. 15, could set important precedents for both the use of the California commercial blockade statute to go after patients and their advocates and, more broadly, the handling of cases in which the hospital and patient can’t agree on a plan for discharge.

The state’s hospital lobby recently highlighted discharge delays as a growing problem costing the industry $2.9 billion a year. The California Hospital Association estimates at least 5,000 patients every day experience such delays, often in trying to identify skilled nursing facilities.

Patient advocates, who typically charge patients a fee to help them navigate the health care system, warn that a decision in favor of Dignity could chill their entire profession and give hospitals a new avenue to seek money from patients.

“It could be a watershed case if it goes in either direction,” said Tony Chicotel, senior staff attorney with the Berkeley-based California Advocates for Nursing Home Reform, who has worked on hospital discharge cases. “If it’s a defense verdict, we’ll know our laws are somewhat protective of patients. And if it’s a plaintiff’s verdict, patients around the state could be dumped and us advocates will have to figure out what we can talk about without getting sued.”

San Francisco-based Dignity Health, a tax-exempt organization with $9.5 billion in revenue, was founded by nuns to serve the sick and the poor. Spokesperson William Hodges said the health system doesn’t comment on pending litigation.

A 68-year-old patient, Daphne Muehlendorf, who is blind, began suffering a series of seizures in 2021 and was in and out of the hospital. Each time she went home, her daughters say, her health declined, with slurred speech and the inability to carry a cup, despite receiving in-home physical therapy. By the time she entered the acute rehabilitation unit at Dignity’s Mercy General Hospital in Sacramento, she had already applied for Medi-Cal, the state’s Medicaid program, which covers the cost of nursing homes if the patient demonstrates both financial and medical need.

Dignity, which has not specified an amount it seeks in damages, contends in its lawsuit that doctors determined Muehlendorf was eligible to go home but the family refused for weeks while waiting for her Medi-Cal assisted living waiver to be approved. Once that came through, Muehlendorf was transferred to Bruceville Terrace, one of Dignity’s skilled nursing facilities in Sacramento.

“I don’t see what the case is and that’s what’s scary for me,” said one of Muehlendorf’s two daughters, Terra Khan, about Dignity’s legal argument. She is also being sued by Dignity. “I have no idea what’s going to happen. I’m terrified.”

Dennis McPherson, the attorney representing Dignity, said the hospital made the decision to sue after serious deliberation. Muehlendorf “did cause a significant disruption,” McPherson said. “It took a lot more manpower and our unit was full. There were patients wait-listed who couldn’t get into this unit.”

The family and their patient advocate, Carol Costa-Smith, who runs the company The Light for Seniors in San Diego, said it wasn’t safe for Muehlendorf to return home and accused the hospital of delaying filing paperwork for Muehlendorf’s Medi-Cal application. State and federal laws require hospitals to arrange care for patients who are likely to suffer adverse health consequences upon discharge, and patients have a right to appeal discharge decisions.

Likening themselves to tax advisers, independent advocates with legal, finance, and insurance backgrounds fill a cottage industry helping patients and their families navigate the health system and long-term care facilities, which often includes applying for Medi-Cal.

Costa-Smith, who charges each client $2,000 to $3,000 a year, said Dignity is trying to put patient advocates out of business so there is less pushback against hospital discharges and other decisions. “I’m the pit bull and I’m not going to let them do a home discharge if it’s not safe,” she said.

Muehlendorf’s trial is scheduled to begin this week.

Dignity’s use of the commercial blockade law appears to be new. California lawmakers passed a bill in 1994 allowing civil claims against trespassers at health facilities, authored by then-Assembly member Jackie Speier, who recently retired from Congress and is now running for the San Mateo County Board of Supervisors. The legislature’s analysis of the proposed bill from that time showed it was intended to dissuade anti-abortion protesters from blocking people entering or exiting health care facilities by threatening a lawsuit.

The analysis said it could also stop other disruptive activities such as excessive phone calls to tie up phone lines, the use of stink bombs to evacuate health facilities, and fake fire calls that prompt emergency evacuation. It was backed by the American College of Obstetricians and Gynecologists, California NOW, and Planned Parenthood Affiliates of California.

Anti-abortion groups opposed the bill, arguing “those who impede access in order to save babies should not be treated differently than those who might do so to save animals, or to block access to government buildings or bridges.” Opponents suggested that pro-choice groups could seek to exploit the bill for profit.

Patient advocates are alarmed by the Dignity lawsuits and say they have never heard of hospitals filing such claims. Dignity is also suing Craig Smedley, who operates Estate Advisory Group in Murrieta. According to a June 30, 2021, complaint, Smedley advised a patient at Mercy Hospital of Folsom “refusal to accept safe and lawful placement and be discharged” even though the patient had been medically eligible for discharge since May 9, 2021.

Dignity contends it lost money because the patient’s insurance denied payment, and it accuses Smedley of directing the hospital to send her to a skilled nursing facility when doctors said she had no need for that level of care. Dignity has not specified an amount it seeks in damages. Smedley, who is defending himself, said disagreeing with a hospital’s discharge plan was hardly a commercial blockade.

“I’m not chaining myself to the front door to prevent people from passing through to the hospital like an anti-abortion protester,” Smedley said. “I’ve never visited the hospital. I give advice by phone. My clients were the ones communicating with the hospital.”

Chicotel, the attorney with the nursing home reform group, said he did not believe Dignity’s claims were supported by the law. Hospitals, he said, have a duty to discharge patients to a safe facility they can afford.

“In my experience, the Catholic hospitals are focused on the bottom line,” Chicotel said. “We see finances become much more important than the spiritual mission. I see that over and over again.”

McPherson argued that the commercial blockade law was written broadly to include any disruption to the normal functions of a health care facility that renders it temporarily or permanently unavailable.

“The outcome of the trial will dictate to the client what we’re going to do with respect to the others,” he said. Dignity has filed a third lawsuit, against Costa-Smith and another client.

As a registered nurse who has worked for various hospitals, Khan believes she was doing what any person would do in advocating for a loved one. She said her mother, who once lived independently despite her disability, wouldn’t have asked for help if she didn’t really need it. “I know we moved through this honorably,” she said.

Khan is both troubled and comforted knowing that Dignity is going after other patients and patient advocates.

“It makes me feel like, OK, it wasn’t that we did something wrong — there’s something else at play that we’re not privy to.”

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

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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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

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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.

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

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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.”

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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