Every time Ashton Alexander sees an ad for Georgia Pathways to Coverage, it feels like a “kick in the face.”

Alexander tried signing up for Pathways, the state’s limited Medicaid expansion, multiple times and got denied each time, he said, even though he met the qualifying terms because he’s a full-time student.

Georgia is one of 10 states that haven’t expanded Medicaid health coverage to a broader pool of low-income adults. Instead, it offers coverage to those who can prove they’re working or completing 80 hours a month of other qualifying activities, like going to school or volunteering. And it is the only state currently doing so.

“Why is this marketing out here?” said the 20-year-old, who lives in Conyers, east of Atlanta. “It’s truly not accessible.”

Each denial used the same boilerplate language, Alexander said, and his calls to caseworkers were not returned. State offices couldn’t connect him with caseworkers assigned to him from the same state agency. And when he requested contact information for a supervisor to appeal his denial, he said, the number rang to a fax machine.

“It’s impenetrable,” Alexander said. “I’ve literally tried everything, and there’s no way.”

Millions of Americans trying to access Medicaid benefits could soon find themselves navigating similar byzantine state systems and work rules. Legislation signed into law by President Donald Trump on July 4 allocates $200 million to help states that expanded Medicaid create systems by the end of next year to verify whether some enrollees are meeting the requirements.

Conservative lawmakers have long argued that public benefits should go only to those actively working to get off of government assistance. But the nation’s only Medicaid work requirement program shows they can be costly for states to run, frustrating for enrollees to navigate, and disruptive to other public benefit systems. Georgia’s budget for marketing is nearly as much as it has spent on health benefits. Meanwhile, most enrollees under age 65 are already working or have a barrier that prevents them from doing so.

What Georgia shows is “just how costly setting up these administrative systems of red tape can be,” said Joan Alker, executive director of Georgetown University’s Center for Children and Families.

Over the past two years, KFF Health News has documented the issues riddling Georgia’s Pathways program, launched in July 2023. More than 100,000 Georgians have applied to the program through March. Just over 8,000 were enrolled at the end of June, though about 300,000 would be eligible if the state fully expanded Medicaid under the terms of the Affordable Care Act.

The program has cost more than $100 million, with only $26 million spent on health benefits and more than $20 million allocated to marketing contracts, according to a KFF Health News analysis of state reports.

“That was truly a pretty shocking waste of taxpayer dollars,” Alker said.

The Government Accountability Office is investigating the costs of the program after a group of Democratic senators — including both members of the Georgia delegation — asked the government watchdog to look into the program. Findings are expected this fall.

A state report to the federal government from March said Georgia couldn’t effectively determine if applicants meet the qualifying activities criteria. The report also said the state hadn’t suspended anyone for failing to work, a key philosophical pillar of the program. Meanwhile, as of March, more than 5,000 people were waiting to have their eligibility verified for Pathways.

The Pathways program has strained Georgia’s eligibility system for other public benefits, such as food stamps and cash assistance.

In April, the state applied to the federal government to renew Pathways. In its application, officials scaled back key elements, such as the requirement that enrollees document work every month. Critics of the program also say the red tape doesn’t help enrollees find jobs.

“Georgia’s experience shows that administrative complexity is the primary outcome, not job readiness,” said Natalie Crawford, executive director of Georgia First, which advocates for fiscal responsibility and access to affordable health care.

Despite the struggles, Garrison Douglas, a spokesperson for Georgia’s Republican governor, Brian Kemp, defended the program. “Georgia Pathways is doing what it was designed to do: provide free healthcare coverage to low-income, able-bodied Georgians who are willing to engage in one of our many qualifying activities,” he said in an emailed statement.

New federal requirements in the tax and spending legislation mean that the 40 states (plus Washington, D.C.) that expanded Medicaid will need to prepare technology to process the documentation some Medicaid recipients will now have to regularly file.

The federal law includes exemptions for people with disabilities, in addiction treatment, or caring for kids under 14, among others.

The Trump administration said other states won’t face a bumpy rollout like Georgia’s.

“We are fully confident that technology already exists that could enable all parties involved to implement work and community engagement requirements,” said Mehmet Oz, head of the Centers for Medicare & Medicaid Services, in an emailed statement.

In a written public comment on Georgia’s application to extend the program, Yvonne Taylor of Austell detailed the difficulties she faced trying to enroll.

She said she tried to sign up several times but that her application was not accepted. “Not once, not twice,  but 3 times. With no response from customer service,” she wrote in February. “So now I am without coverage.”

Victoria Helmly of Marietta wrote in a January comment that she and her family members take care of their dad, but the state law doesn’t exempt caregivers of older adults.

“Georgia should recognize their sacrifices by supporting them with health insurance,” she wrote. “Let’s simplify this system and in the end, save money and lives.”

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 Rural Health Transformation Program calls for federal regulators to hand states $10 billion a year for five years starting in fiscal year 2026.

But the “devil’s in the details in terms of implementing,” said Sarah Hohman, director of government affairs at the National Association of Rural Health Clinics.

“An investment of this amount and this style into rural — hopefully it goes to rural — is the type of investment that we and other advocates have been working on for a long time,” said Hohman, whose organization represents 5,600 rural health clinics.

People who live in the nation’s rural expanses have more chronic diseases, die younger, and make less money. Those compounding factors have financially pummeled rural health infrastructure, triggering hospital closures and widespread discontinuation of critical health services like obstetrics and mental health care.

Nearly 1 in 4 people in rural America use Medicaid, the state and federal program for low-income and disabled people. So, as Senate Republicans heatedly debated Medicaid spending reductions, lawmakers added the $50 billion program to quell opposition. But health advocates and researchers doubt it will be enough to offset expected cuts in federal funding.

Senate Majority Leader John Thune, a Republican from South Dakota, which has one of the largest percentages of rural residents in the nation, led the push to pass the budget bill. His website touts support for strengthening access to care in rural areas. But his office declined to respond on the record to questions about the rural health program included in the bill.

Sen. Susan Collins, a Republican from Maine who introduced an initial amendment to add the rural program, also did not respond to a request for comment. On July 15, Sen. Josh Hawley, a Republican from Missouri, introduced a bill to reverse future cuts to Medicaid and add to the rural program.

Michael Cannon, director of health policy studies at the Cato Institute, a libertarian think tank headquartered in Washington, D.C., said the money was set aside because of politics and not necessarily for rural patients.

“As long as it’s a government slush fund where politics decides where the money goes, then there’s going to be a mismatch between where those funds go and what it is consumers need,” Cannon said.

The nonpartisan Congressional Budget Office estimates federal Medicaid spending will be reduced by about $1 trillion over the next decade.

“These dollar amounts translate to actual people,” said Fredric Blavin, a senior fellow and researcher at the Urban Institute, a Washington D.C.-based think tank that focuses on social and economic research.

Most states expanded their Medicaid programs to cover more low-income adults under the Affordable Care Act. That has lowered medical debt, improved health, and even reduced death rates, Blavin said.

By 2034, about 11.8 million people are expected to lose their health insurance from this bill, said Alice Burns, an associate director for KFF’s Program on Medicaid and the Uninsured. And she said the Medicaid rollback may have an outsize impact on rural areas.

In rural areas, federal Medicaid spending is expected to decline by $155 billion over 10 years, according to an analysis by KFF, a health information nonprofit that includes KFF Health News.

If the goal of the rural program was to transform rural health care, as its name suggests, it will fall short, Burns said. The $50 billion rural program distributed over five years won’t offset the losses expected over a decade of Medicaid reductions, she said.

In Kansas, Holton Community Hospital Chief Executive Carrie Lutz said she doesn’t “feel that the sky is falling right now.”

Lutz, whose 14-bed hospital is on the northern plains of the state, said she is bracing for the potential loss of Medicaid-covered patients and limits to provider taxes, which nearly all states use to get extra federal Medicaid money.

The reduction in provider taxes has been delayed until fiscal year 2028, Lutz said, but she still wants her state’s leaders to apply for a portion of the rural program funding, which is expected to be distributed sooner.

“Every little penny helps when you’ve got very negative margins to begin with,” Lutz said.

The program’s $50 billion will be spread over five years and may not be limited to bolstering rural areas or their hospitals. Half of the money will be distributed “equally” among states that apply to and win approval from the Centers for Medicare & Medicaid Services. The law’s current language “raises the possibility” that a small state like Vermont could receive the same amount as a large state like Texas, Burns said.

States are required to submit a “detailed rural health transformation plan” by the end of this year, according to the law.

The law says states should use the funds to pursue goals including improving access to hospitals and other providers, improving health outcomes, enhancing economic opportunity for health care workers, and prioritizing the use of emerging technologies.

Mehmet Oz, a Trump appointee leading Medicare and Medicaid, will determine how to distribute the other half, or $25 billion, using a formula based on states’ rural population and need. The law says the money is to be used for such things as increasing use of robotics, upgrading cybersecurity, and helping rural communities “to right size their health care delivery systems.”

Spokespeople for CMS did not respond to a list of questions.

Kyle Zebley, senior vice president of public policy at the American Telemedicine Association, said there is “a pretty significant degree of discretion” for the White House and the Medicare and Medicaid administrator in approving state plans.

“We will urge states to include robust telehealth and virtual care options within their proposals going up to the federal government,” Zebley said.

Alexa McKinley Abel, government affairs and policy director for the National Rural Health Association, said that while the law calls for states to create and submit plans, it’s unclear what state agencies will perform the task, McKinley Abel said.

“There are a lot of gaps around application and implementation,” she said, noting that an earlier version of the bill called for state plans to be developed in consultation with federally funded state offices of rural health.

But those offices are proposed to be eliminated in Trump’s federal budget, which will face congressional approval in the fall. McKinley Abel said her organization supports state offices of rural health helping develop the plans and working with states to disburse the money, “since they intimately know the rural health community.”

Hohman, with the rural health clinic association, said she is not sure money from the transformation program will even reach her members. About 27% of the patients treated at rural health clinics are enrolled in Medicaid, she said.

“There’s just some confusion about who actually gets this money at the end of the day,” Hohman said. “What is it actually going to be used for?”

KFF Health News senior correspondent Phil Galewitz contributed to this report.

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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SHREVEPORT, La. — When Robert Smith met his future girlfriend in 2010, he wanted to take things slowly. For Smith, no relationship had been easy in the years since he was diagnosed with the human immunodeficiency virus, or HIV. People often became afraid when they learned his status, even running away when he coughed.

The couple waited months to have sex until Smith felt he could share his medical status. To prepare her, Smith said, he took his girlfriend to his job in HIV prevention at the Philadelphia Center, a northwestern Louisiana nonprofit that offers resources to people with HIV, which also provided him housing at the time.

Finally, he revealed the news: Smith was diagnosed with HIV in 1994 and started taking daily antiviral pills in 2006. The virus could no longer be detected in his blood, and he couldn’t transmit it to a sexual partner.

Smith said his girlfriend seemed comfortable knowing his status. When it came to sex, there was no hesitation, he said. But a couple of years later, when Smith wanted to break up, he said, her tone shifted.

“She was like, ‘If you try to leave me, I’m gonna put you in jail,’” recalled Smith, now 68. “At the time, I really didn’t know the sincerity of it.”

After they broke up, she reported him to the police, accusing him of violating a little-known law in Louisiana — a felony called “intentional exposure to HIV.” He disputed the allegations, but in 2013 accepted a plea deal to spend six months in prison on the charge. He had a few months left on parole from a past conviction on different charges, and Smith thought this option would let him move past the relationship faster. He didn’t realize the conviction would also land him on the state’s sex offender registry.

For nearly two decades, Smith had dealt with the stigma associated with having HIV; the registry added another layer of exclusion, severely restricting where he could live and work to avoid minors. Not many people want to hire a sex offender, he said. Smith has been told by the local sheriff’s office he’s not allowed to do simple things, like go to a public park or a high school football game, since the conviction.

“I’ve been undetectable for 15 years, but that law still punishes us,” Smith said.

Louisiana is one of 30 states with criminal penalties related to exposing or transmitting HIV. Most of the laws were passed in the 1980s during the emergence of the AIDS epidemic. Since then, several states have amended their laws to make them less punitive or repealed them outright, including Maryland and North Dakota this year.

But Louisiana’s law remains among the harshest. The state is one of five that may require people such as Smith to register as a sex offender if convicted, a label that can follow them for over a decade. And state lawmakers considered a bill to expand the law to apply to other sexually transmitted infections, then failed to pass it before the session ended.

Meanwhile, people with HIV also face the threat that federal funding cuts will affect their access to treatment, along with prevention efforts, supportive services, and outreach. Such strategies have proved to slow the HIV/AIDS epidemic, unlike the laws’ punitive approach.

The tax and domestic policy law previously known as the “One Big Beautiful Bill” will likely affect HIV-positive people enrolled in Medicaid by reducing federal support for Medicaid and restricting eligibility. About 40% of adults under 65 with HIV rely on Medicaid.

The Trump administration proposed in its fiscal 2026 budget request to eliminate HIV prevention programs at the Centers for Disease Control and Prevention and to cancel a grant that helps fund housing for people with HIV. The Ryan White HIV/AIDS program, the largest federal fund dedicated to supporting HIV-positive people, also faces cuts. The program serves more than half of the people in the U.S. diagnosed with HIV, including in Louisiana, according to KFF, a health information nonprofit that includes KFF Health News.

Public health officials maintain that state laws criminalizing HIV exposure hurt efforts to end the HIV epidemic. Epidemiologists and other experts on AIDS agree that the enforcement of such laws is often shaped by fear, not science. For example, in many states that criminalize HIV exposure, people living with HIV can face heightened criminal penalties for actions that can’t transmit the virus, such as spitting on someone. The laws further stigmatize and deter people from getting tested and treatment, undermining response to the epidemic, experts say.

At least 4,400 people in 14 states have been arrested under these laws, though data is limited and the actual number is likely higher, and the arrests aren’t decreasing, according to analyses by UCLA’s Williams Institute.

“ Some people think it’s an issue that’s gone away, and that simply isn’t the case,” said Nathan Cisneros, a researcher at the Williams Institute.

In Louisiana, a 2022 Williams Institute analysis found at least 147 allegations reported to law enforcement under the state’s HIV law from 2011 to mid-2022. Black people made up nearly three-quarters of the people convicted and placed on the sex offender registry. Most were Black men, like Smith. At the time of the analysis, Black people made up about two-thirds of HIV diagnoses in the state.

“ We see over and over that Black people are disproportionately affected by the HIV epidemic and disproportionately affected by policing and incarceration in the United States,” Cisneros said.

Nationally, other marginalized groups such as women, sex workers, the queer community, or people who overlap across more than one group are also disproportionately arrested and prosecuted under similar criminalization laws, Cisneros said.

Ensnared in the System

Louisiana’s law hinges on the requirement that if a person knows they have HIV, they must disclose their HIV status and receive consent before exposing someone to the virus.

Louisiana District Attorneys Association Executive Director Zach Daniels said these cases don’t come up often and can be difficult to prosecute. Daniels said the intimate nature of the cases can lead to little evidence in support of either side, especially if the accuser doesn’t contract HIV.

When it comes to talking about one’s sex life, Daniels said, “there are often no other witnesses, besides the two participants.”

Louisiana’s law is written so that “intentional exposure” can occur through “any means or contact.” That includes sex and needle-sharing, practices known to transmit the virus. But the language of the law is so broad that actions known not to transmit the virus — like biting or scratching — could be included, said Dietz, the statewide coordinator for the Louisiana Coalition on Criminalization and Health, an advocacy network founded by people living with HIV that has opposed the law.

The broad nature of the law creates opportunities for abuse, as the threat of being reported under the law can be used as a coercive tool in relationships, said Dietz, who goes by one name and uses they/them pronouns. Such threats, Dietz said, have kept people in abusive relationships and loomed over child custody battles. Dietz said they’ve supported people accused of exposing their children to HIV in ways that are not medically possible.

“ ‘Any means or contact’ could be just merely being around your kids,” they said.

The prosecutors’ organization still supports the law as a recourse for emergency responders who, in rare instances, come into contact with blood or syringes containing the virus. In one recent high-profile case in New Orleans, the law was used against a local DJ accused of knowingly transmitting HIV to several women without informing them of his status or using a condom.

The person accused of violating the law, not the accuser, must prove their case — that they disclosed their HIV status beforehand. Without a signed affidavit or tape recording, courts can end up basing their decisions on conflicting testimonies with little supporting evidence.

That’s what Smith alleged happened to him.

After his relationship ended, he said, he remembered being called into a meeting with his parole officer where a detective waited for him, asking about his former relationship and whether his girlfriend had known about his HIV status.

Smith said yes. But that’s not what she had told police.

Verite News could not find a working phone number for Smith’s former girlfriend but corroborated the story with the incident’s police report. His attorney at the time, a public defender named Carlos Prudhomme, said he didn’t remember much about the case, and court documents are sealed because it was a sex offense.

In court, it was her word against his. So when he was offered six months in prison instead of the 10-year maximum, he switched his plea from not guilty to guilty. But he said he didn’t know his new conviction would require him to register as a sex offender once he got out — worsening the stigma.

“When people see ‘sex offender,’ the first thing that comes to their mind is rape, child molester, predator,” Smith said. “This law puts me in a category that I don’t care to be in.”

He has tried to make the most of it, despite the expense of paying fees each year to reregister. After being rejected from jobs, he started a catering business and built a loyal clientele. But he said he’s still stuck living in a poorly maintained apartment complex primarily inhabited by sex offenders.

“I understand their strategy for creating this law to prevent the spread, but it’s not helping. It’s hurting; it’s hindering. It’s destroying people’s lives instead of helping people’s lives, especially the HIV community,” he said. “They don’t care about us.”

The Case for Reform

Since 2014, there has been a nationwide effort to update or repeal state laws that criminalize HIV nondisclosure, exposure, or transmission. A dozen states have changed their laws to align more closely with modern science, and four have gotten rid of them completely in hopes of reducing stigma and improving public health outcomes, according to the Center for HIV Law and Policy.

Sean McCormick, an attorney with the center, said these changes are influenced partly by a growing body of evidence showing the laws’ negative consequences.

McCormick said the laws offer a “clear disincentive” for people to get tested for HIV. If they don’t know their status, there’s no criminal liability for transmission or exposure.

A 2024 survey by Centers for Disease Control and Prevention and DLH Corp. researchers found that after California updated its HIV criminalization law in 2018, respondents were more likely to get tested. Meanwhile, survey respondents in Nevada, which still had a more punitive law on the books, were less likely to get tested.

There’s no one-size-fits-all solution, McCormick said. His center works with HIV-positive people across the country to determine what legislative changes would work best in their states.

Texas was the first to repeal its HIV law in 1994.

“As a person living with HIV in Texas, I’m deeply appreciative that we don’t have an HIV-specific statute that puts a target on my back,” said Michael Elizabeth, the public health policy director for the Equality Federation.

But Elizabeth points out that Texans living with HIV still face steeper penalties under general felony laws for charges such as aggravated assault or aggravated sexual assault after state courts in Texas equated the bodily fluids of a person with HIV with a “deadly weapon.”

Louisiana activists have pushed lawmakers in the state to amend the law in three ways: removing the sex offender registration requirement, requiring transmission to have occurred, and requiring clear intent to transmit the virus.

“Our strategy, as opposed to repeal, is to create a law that actually addresses the kind of boogeyman that they ostensibly created the law for: the person who successfully, maliciously, intentionally transmits HIV,” said Dietz with the Louisiana Coalition on Criminalization and Health.

In 2018, a bill to narrow the statute was amended in ways that expanded the law. For example, the updated law no longer had any definition of which actions “expose” someone to HIV.

In 2023, state lawmakers created a task force that recommended updating Louisiana’s law to align with the latest public health guidelines, limit the potential for unintended consequences, and give previously convicted people a way to clear their record.

Lawmakers in the state House pushed forward a bill this year to criminalize other sexually transmitted infections, including hepatitis B and the herpes simplex virus. That bill died in the Senate, but it spurred the creation of another legislative task force with a nearly identical mission to that of the first.

“ This state has no idea how closely we just dodged a bullet,” Dietz said.

In the meantime, the Louisiana coalition is helping Smith petition the state to take his name off the sex offender registry. Louisiana law allows people to petition to have their names removed from the registry after 10 years without any new sex crime convictions. Smith expects his case to be approved by the end of the year.

Despite the difficulty of the past 12 years, he said, he’s grateful for the chance to be free from the registry’s restrictions.

“It’s like a breath of fresh air,” Smith said. “I can do stuff that I wanted to do that I couldn’t. Like, go to a football game. Simple stuff like that, I’m going to be ready to 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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Every time Ashton Alexander sees an ad for Georgia Pathways to Coverage, it feels like a “kick in the face.”

Alexander tried signing up for Pathways, the state’s limited Medicaid expansion, multiple times and got denied each time, he said, even though he met the qualifying terms because he’s a full-time student.

Georgia is one of 10 states that haven’t expanded Medicaid health coverage to a broader pool of low-income adults. Instead, it offers coverage to those who can prove they’re working or completing 80 hours a month of other qualifying activities, like going to school or volunteering. And it is the only state currently doing so.

“Why is this marketing out here?” said the 20-year-old, who lives in Conyers, east of Atlanta. “It’s truly not accessible.”

Each denial used the same boilerplate language, Alexander said, and his calls to caseworkers were not returned. State offices couldn’t connect him with caseworkers assigned to him from the same state agency. And when he requested contact information for a supervisor to appeal his denial, he said, the number rang to a fax machine.

“It’s impenetrable,” Alexander said. “I’ve literally tried everything, and there’s no way.”

Millions of Americans trying to access Medicaid benefits could soon find themselves navigating similar byzantine state systems and work rules. Legislation signed into law by President Donald Trump on July 4 allocates $200 million to help states that expanded Medicaid create systems by the end of next year to verify whether some enrollees are meeting the requirements.

Conservative lawmakers have long argued that public benefits should go only to those actively working to get off of government assistance. But the nation’s only Medicaid work requirement program shows they can be costly for states to run, frustrating for enrollees to navigate, and disruptive to other public benefit systems. Georgia’s budget for marketing is nearly as much as it has spent on health benefits. Meanwhile, most enrollees under age 65 are already working or have a barrier that prevents them from doing so.

What Georgia shows is “just how costly setting up these administrative systems of red tape can be,” said Joan Alker, executive director of Georgetown University’s Center for Children and Families.

Over the past two years, KFF Health News has documented the issues riddling Georgia’s Pathways program, launched in July 2023. More than 100,000 Georgians have applied to the program through March. Just over 8,000 were enrolled at the end of June, though about 300,000 would be eligible if the state fully expanded Medicaid under the terms of the Affordable Care Act.

The program has cost more than $100 million, with only $26 million spent on health benefits and more than $20 million allocated to marketing contracts, according to a KFF Health News analysis of state reports.

“That was truly a pretty shocking waste of taxpayer dollars,” Alker said.

The Government Accountability Office is investigating the costs of the program after a group of Democratic senators — including both members of the Georgia delegation — asked the government watchdog to look into the program. Findings are expected this fall.

A state report to the federal government from March said Georgia couldn’t effectively determine if applicants meet the qualifying activities criteria. The report also said the state hadn’t suspended anyone for failing to work, a key philosophical pillar of the program. Meanwhile, as of March, more than 5,000 people were waiting to have their eligibility verified for Pathways.

The Pathways program has strained Georgia’s eligibility system for other public benefits, such as food stamps and cash assistance.

In April, the state applied to the federal government to renew Pathways. In its application, officials scaled back key elements, such as the requirement that enrollees document work every month. Critics of the program also say the red tape doesn’t help enrollees find jobs.

“Georgia’s experience shows that administrative complexity is the primary outcome, not job readiness,” said Natalie Crawford, executive director of Georgia First, which advocates for fiscal responsibility and access to affordable health care.

Despite the struggles, Garrison Douglas, a spokesperson for Georgia’s Republican governor, Brian Kemp, defended the program. “Georgia Pathways is doing what it was designed to do: provide free healthcare coverage to low-income, able-bodied Georgians who are willing to engage in one of our many qualifying activities,” he said in an emailed statement.

New federal requirements in the tax and spending legislation mean that the 40 states (plus Washington, D.C.) that expanded Medicaid will need to prepare technology to process the documentation some Medicaid recipients will now have to regularly file.

The federal law includes exemptions for people with disabilities, in addiction treatment, or caring for kids under 14, among others.

The Trump administration said other states won’t face a bumpy rollout like Georgia’s.

“We are fully confident that technology already exists that could enable all parties involved to implement work and community engagement requirements,” said Mehmet Oz, head of the Centers for Medicare & Medicaid Services, in an emailed statement.

In a written public comment on Georgia’s application to extend the program, Yvonne Taylor of Austell detailed the difficulties she faced trying to enroll.

She said she tried to sign up several times but that her application was not accepted. “Not once, not twice,  but 3 times. With no response from customer service,” she wrote in February. “So now I am without coverage.”

Victoria Helmly of Marietta wrote in a January comment that she and her family members take care of their dad, but the state law doesn’t exempt caregivers of older adults.

“Georgia should recognize their sacrifices by supporting them with health insurance,” she wrote. “Let’s simplify this system and in the end, save money and lives.”

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 Rural Health Transformation Program calls for federal regulators to hand states $10 billion a year for five years starting in fiscal year 2026.

But the “devil’s in the details in terms of implementing,” said Sarah Hohman, director of government affairs at the National Association of Rural Health Clinics.

“An investment of this amount and this style into rural — hopefully it goes to rural — is the type of investment that we and other advocates have been working on for a long time,” said Hohman, whose organization represents 5,600 rural health clinics.

People who live in the nation’s rural expanses have more chronic diseases, die younger, and make less money. Those compounding factors have financially pummeled rural health infrastructure, triggering hospital closures and widespread discontinuation of critical health services like obstetrics and mental health care.

Nearly 1 in 4 people in rural America use Medicaid, the state and federal program for low-income and disabled people. So, as Senate Republicans heatedly debated Medicaid spending reductions, lawmakers added the $50 billion program to quell opposition. But health advocates and researchers doubt it will be enough to offset expected cuts in federal funding.

Senate Majority Leader John Thune, a Republican from South Dakota, which has one of the largest percentages of rural residents in the nation, led the push to pass the budget bill. His website touts support for strengthening access to care in rural areas. But his office declined to respond on the record to questions about the rural health program included in the bill.

Sen. Susan Collins, a Republican from Maine who introduced an initial amendment to add the rural program, also did not respond to a request for comment. On July 15, Sen. Josh Hawley, a Republican from Missouri, introduced a bill to reverse future cuts to Medicaid and add to the rural program.

Michael Cannon, director of health policy studies at the Cato Institute, a libertarian think tank headquartered in Washington, D.C., said the money was set aside because of politics and not necessarily for rural patients.

“As long as it’s a government slush fund where politics decides where the money goes, then there’s going to be a mismatch between where those funds go and what it is consumers need,” Cannon said.

The nonpartisan Congressional Budget Office estimates federal Medicaid spending will be reduced by about $1 trillion over the next decade.

“These dollar amounts translate to actual people,” said Fredric Blavin, a senior fellow and researcher at the Urban Institute, a Washington D.C.-based think tank that focuses on social and economic research.

Most states expanded their Medicaid programs to cover more low-income adults under the Affordable Care Act. That has lowered medical debt, improved health, and even reduced death rates, Blavin said.

By 2034, about 11.8 million people are expected to lose their health insurance from this bill, said Alice Burns, an associate director for KFF’s Program on Medicaid and the Uninsured. And she said the Medicaid rollback may have an outsize impact on rural areas.

In rural areas, federal Medicaid spending is expected to decline by $155 billion over 10 years, according to an analysis by KFF, a health information nonprofit that includes KFF Health News.

If the goal of the rural program was to transform rural health care, as its name suggests, it will fall short, Burns said. The $50 billion rural program distributed over five years won’t offset the losses expected over a decade of Medicaid reductions, she said.

In Kansas, Holton Community Hospital Chief Executive Carrie Lutz said she doesn’t “feel that the sky is falling right now.”

Lutz, whose 14-bed hospital is on the northern plains of the state, said she is bracing for the potential loss of Medicaid-covered patients and limits to provider taxes, which nearly all states use to get extra federal Medicaid money.

The reduction in provider taxes has been delayed until fiscal year 2028, Lutz said, but she still wants her state’s leaders to apply for a portion of the rural program funding, which is expected to be distributed sooner.

“Every little penny helps when you’ve got very negative margins to begin with,” Lutz said.

The program’s $50 billion will be spread over five years and may not be limited to bolstering rural areas or their hospitals. Half of the money will be distributed “equally” among states that apply to and win approval from the Centers for Medicare & Medicaid Services. The law’s current language “raises the possibility” that a small state like Vermont could receive the same amount as a large state like Texas, Burns said.

States are required to submit a “detailed rural health transformation plan” by the end of this year, according to the law.

The law says states should use the funds to pursue goals including improving access to hospitals and other providers, improving health outcomes, enhancing economic opportunity for health care workers, and prioritizing the use of emerging technologies.

Mehmet Oz, a Trump appointee leading Medicare and Medicaid, will determine how to distribute the other half, or $25 billion, using a formula based on states’ rural population and need. The law says the money is to be used for such things as increasing use of robotics, upgrading cybersecurity, and helping rural communities “to right size their health care delivery systems.”

Spokespeople for CMS did not respond to a list of questions.

Kyle Zebley, senior vice president of public policy at the American Telemedicine Association, said there is “a pretty significant degree of discretion” for the White House and the Medicare and Medicaid administrator in approving state plans.

“We will urge states to include robust telehealth and virtual care options within their proposals going up to the federal government,” Zebley said.

Alexa McKinley Abel, government affairs and policy director for the National Rural Health Association, said that while the law calls for states to create and submit plans, it’s unclear what state agencies will perform the task, McKinley Abel said.

“There are a lot of gaps around application and implementation,” she said, noting that an earlier version of the bill called for state plans to be developed in consultation with federally funded state offices of rural health.

But those offices are proposed to be eliminated in Trump’s federal budget, which will face congressional approval in the fall. McKinley Abel said her organization supports state offices of rural health helping develop the plans and working with states to disburse the money, “since they intimately know the rural health community.”

Hohman, with the rural health clinic association, said she is not sure money from the transformation program will even reach her members. About 27% of the patients treated at rural health clinics are enrolled in Medicaid, she said.

“There’s just some confusion about who actually gets this money at the end of the day,” Hohman said. “What is it actually going to be used for?”

KFF Health News senior correspondent Phil Galewitz contributed to this report.

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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KFF Health News Nevada correspondent Jazmin Orozco Rodriguez discussed the potential impact of Medicaid cuts on rural hospitals on KNPR’s “State of Nevada” on July 17.

• Click here to hear Orozco Rodriguez on “State of Nevada.”
• Read Orozco Rodriguez’s “‘One Big Beautiful Bill’ Would Batter Rural Hospital Finances, Researchers Say.”

KFF Health News chief Washington correspondent Julie Rovner discussed Medicaid cuts in President Donald Trump’s megabill on WAMU’s “1A” on July 16. Rovner also discussed immigrant health coverage on MSNBC’s “Velshi” on July 13.

• Click here to hear Rovner on “1A.”
• Click here to watch Rovner on “Velshi.”

Céline Gounder, KFF Health News’ editor-at-large for public health, discussed how artificial food dyes can affect health on CBS News’ “CBS Mornings” on July 15. She also discussed how to prevent tick bites on CBS News’ “CBS Mornings” on July 11.

• Click here to watch Gounder discuss food dyes on “CBS Mornings.”
• Click here to watch Gounder discuss tick bite prevention on “CBS Mornings.”

KFF Health News chief rural correspondent Sarah Jane Tribble discussed the impact of Trump’s tax and spending bill on rural health on Ideastream Public Media’s “Sound of Ideas” on July 15.

• Click here to hear Tribble on “Sound of Ideas.”

KFF Health News senior correspondent Renuka Rayasam discussed Medicaid work requirements on WUGA’s “The Georgia Health Report” on July 11.

• Click here to hear Rayasam on “The Georgia Health Report.”

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).

Federal health officials do not inform consumers about severe safety violations in hospitals that specialize in physical rehabilitation. Nor does Medicare impose fines as it does for nursing homes, or provide easy-to-understand five-star ratings as it does for general hospitals, according to an investigation by KFF Health News and The New York Times. 

Medical rehab hospitals have become a highly lucrative niche within the health care industry, collectively generating profits of 10%, more than general hospitals, which earn about 6%, and far more than skilled nursing homes, which make less than 0.5%, according to the most recent data from the Medicare Payment Advisory Commission, an independent congressional agency known as MedPAC. 

But MedPAC and independent researchers have found that for-profit rehabs tend to have higher rates of patients being readmitted to general hospitals than nonprofits do. 

In 2023, stand-alone for-profit rehabilitation hospitals overtook nonprofits as the places where most annual patient admissions occur, a KFF Health News and New York Times analysis found. These facilities are required to provide three hours of physical, occupational, or speech therapy a day, five days a week. 

Congress has not authorized Medicare to fine rehab hospitals for violations uncovered during inspections, even ones that resulted in death, as it has done with nearly 8,000 nursing homes during the last three years, imposing average fines of about $28,000. 

The only option is to entirely cut off a rehab hospital’s reimbursement for all services by Medicare and Medicaid, which cover most patients. That step would most likely put it out of business and is almost never used. Even the most serious violations effectively carry no punishments so long as the hospital puts steps in place to avert future problems. 

The federal government’s overall quality oversight efforts are limited. Medicare docks payment to rehab facilities for patients readmitted to a general hospital during shorter-than-average rehab stays, but unlike at general hospitals, there are no financial penalties when recently discharged rehab patients are hospitalized for critical health issues. 

The Biden administration announced last year it intended to develop a rating scale of 1 to 5 stars for rehab facilities on its Care Compare website. The industry’s trade association, the American Medical Rehabilitation Providers Association, requested a delay in the creation of star ratings until the current quality measures were refined. The Trump administration has not determined whether it will continue the effort to rate rehab facilities. 

Also read our consumer guide to finding the right place to get physical, occupational or speech therapy.

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.

USE OUR CONTENT

This story can be republished for free (details).

Federal health officials do not inform consumers about severe safety violations in hospitals that specialize in physical rehabilitation. Nor does Medicare impose fines as it does for nursing homes, or provide easy-to-understand five-star ratings as it does for general hospitals, according to an investigation by KFF Health News and The New York Times. 

Medical rehab hospitals have become a highly lucrative niche within the health care industry, collectively generating profits of 10%, more than general hospitals, which earn about 6%, and far more than skilled nursing homes, which make less than 0.5%, according to the most recent data from the Medicare Payment Advisory Commission, an independent congressional agency known as MedPAC. 

But MedPAC and independent researchers have found that for-profit rehabs tend to have higher rates of patients being readmitted to general hospitals than nonprofits do. 

In 2023, stand-alone for-profit rehabilitation hospitals overtook nonprofits as the places where most annual patient admissions occur, a KFF Health News and New York Times analysis found. These facilities are required to provide three hours of physical, occupational, or speech therapy a day, five days a week. 

Congress has not authorized Medicare to fine rehab hospitals for violations uncovered during inspections, even ones that resulted in death, as it has done with nearly 8,000 nursing homes during the last three years, imposing average fines of about $28,000. 

The only option is to entirely cut off a rehab hospital’s reimbursement for all services by Medicare and Medicaid, which cover most patients. That step would most likely put it out of business and is almost never used. Even the most serious violations effectively carry no punishments so long as the hospital puts steps in place to avert future problems. 

The federal government’s overall quality oversight efforts are limited. Medicare docks payment to rehab facilities for patients readmitted to a general hospital during shorter-than-average rehab stays, but unlike at general hospitals, there are no financial penalties when recently discharged rehab patients are hospitalized for critical health issues. 

The Biden administration announced last year it intended to develop a rating scale of 1 to 5 stars for rehab facilities on its Care Compare website. The industry’s trade association, the American Medical Rehabilitation Providers Association, requested a delay in the creation of star ratings until the current quality measures were refined. The Trump administration has not determined whether it will continue the effort to rate rehab facilities. 

Also read our consumer guide to finding the right place to get physical, occupational or speech therapy.

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.

USE OUR CONTENT

This story can be republished for free (details).

HHS Secretary and Secretary of State issued a joint statement of formal U.S. rejection of the 2024 International Heath Regulations (IHR) Amendments by the WHO.

The State Department and HHS issued a joint statement of official U.S. rejection of the 2024 amendments to the International Heath Regulations (IHR).

Most of the 24 million people in Affordable Care Act health plans face a potential one-two punch next year — double-digit premium increases along with a sharp drop in the federal subsidies that most consumers depend on to buy the coverage, also known as Obamacare.

Insurers want higher premiums to cover the usual culprits — rising medical and labor costs and usage — but are tacking on extra percentage point increases in their 2026 rate proposals to cover effects of policy changes advanced by the Trump administration and the Republican-controlled Congress. One key factor built into their filings with state insurance departments: uncertainty over whether Congress allows more generous, covid-era ACA tax subsidies to expire at the end of December.

“The out-of-pocket change for individuals will be immense, and many won’t actually be able to make ends meet and pay premiums, so they will go uninsured,” said JoAnn Volk, co-director of the Center on Health Insurance Reforms at Georgetown University.

Especially if the higher subsidies expire, insurance premiums will be among the first financial pains felt by health care consumers after policy priorities put forward by President Donald Trump and the GOP. Many other changes — such as additional paperwork requirements and spending cuts to Medicaid — won’t occur for at least another year. But spiking ACA premiums, as the nation heads into key midterm elections, invites political pushback. Some on Capitol Hill are exploring ways to temper the subsidy reductions.

“I am hearing on both sides — more from Republicans, but from both the House and Senate” — that they are looking for levers they can pull, said Pennsylvania-based insurance broker Joshua Brooker, who follows legislative actions as part of his job and sits on several insurance advisory groups.

In initial filings, insurers nationally are seeking a median rate increase — meaning half of the proposed increases are lower and half higher — of 15%, according to an analysis for the Peterson-KFF Health System Tracker covering 19 states and the District of Columbia. KFF is a national health information nonprofit that includes KFF Health News.

That’s up sharply from the last few years. For the 2025 plan year, for example, KFF found that the median proposed increase was 7%.

Health insurers “are doing everything in their power to shield consumers from the rising costs of care and the uncertainty in the market driven by recent policy changes,” wrote Chris Bond, a spokesperson for AHIP, the industry’s lobbying group. The emailed response also called on lawmakers “to take action to extend the health care tax credits to prevent skyrocketing cost increases for millions of Americans in 2026.”

Neither the White House nor the Department of Health and Human Services responded to requests for comment.

These are initial numbers and insurance commissioners in some states may alter requests before approval.

Still, “it’s the biggest increase we’ve seen in over five years,” said analysis co-author Cynthia Cox, a KFF vice president and director of its Program on the ACA.

Premiums will vary based on where consumers live, the type of plan they choose, and their insurer.

For example, Maryland insurers have requested increases ranging from 8.1% to 18.7% for the upcoming plan year, according to an analysis of a smaller set of insurers by Georgetown University researchers. A much larger swing is seen in New York, where one carrier is asking for less than a 1% increase, while another wants 66%. Maryland rate filings indicated the average statewide increase would shrink to 7.9% from 17.1% — if the ACA’s enhanced tax credits are extended.

Most insurers are asking for 10% to 20% increases, the KFF report says, with several factors driving those increases. For instance, insurers say underlying medical costs — including the use of expensive obesity drugs — will add about 8% to premiums for next year. And most insurers are also adding 4% above what they would have charged had the enhanced tax credits been renewed.

But rising premiums are just part of the picture.

A bigger potential change for consumers’ pocketbooks hinges on whether Congress decides to extend more generous tax credits first put in place during President Joe Biden’s term as part of the American Rescue Plan Act in 2021, then extended through the Inflation Reduction Act in 2022.

Those laws raised the subsidy amounts people could receive based on their household income and local premium costs and removed a cap that had barred higher earners from even partial subsidy assistance. Higher earners could still qualify for some subsidy but first had to chip in 8.5% of their household income toward the premiums.

Across the board, but especially among lower-income policyholders, bigger subsidies helped fuel record enrollment in ACA plans.

But they’re also costly.

A permanent extension could cost $335 billion over the next decade, according to the Congressional Budget Office.

Such an extension was left out of the policy law Trump signed on July 4 that he called the “One Big Beautiful Bill.” Without action, the extra subsidies will expire at the end of this year, after which the tax credits will revert to less generous pre-pandemic levels.

That means two things: Most enrollees will be on the hook to pay a larger share of their premiums as assistance from federal tax credits declines. Secondly, people whose household income exceeds four times the federal poverty level — $84,600 for a couple or $128,600 for a family of four this year — won’t get any subsidies at all.

If the subsidies expire, policy experts estimate, the average amount people pay for coverage could rise by an average of more than 75%. In some states, ACA premiums could double.

“There will be sticker shock,” said Josh Schultz, strategic engagement manager at Softheon, a New York consulting firm that provides enrollment, billing, and other services to about 200 health insurers, many of which are bracing for enrollment losses.

And enrollment could fall sharply. The Wakely Consulting Group estimates that the combination of expiring tax credits, the Trump law’s new paperwork, and other requirements will result in ACA enrollment dropping by as much as 57%.

According to KFF, insurers added premium increases of around 4% just to cover the expiration of the enhanced tax credits, which they fear will lead to lower enrollment. That would further raise costs, insurers say, because people who are less healthy are more likely to grit their teeth and reenroll, leaving insurers with a smaller, but sicker, pool of members.

Less common in the filings submitted so far, but noticeable, are increases pegged to Trump administration tariffs, Cox said.

“What they are assuming is tariffs will drive drug costs up significantly, with some saying that can have around a 3-percentage-point increase” in premiums as a result, she said.

Consumers will learn their new premium prices only late in the fall, or when open enrollment for the ACA begins on Nov. 1 and they can start shopping around.

Congress could still act, and discussions are ongoing, said insurance broker Brooker.

Some lawmakers, he said, are consulting with the CBO about the fiscal and coverage effects of various scenarios that don’t extend the subsidies as they currently exist but may offer a middle ground. One possibility involves allowing subsidies for families earning as much as five or six times the poverty level, he said.

But any such effort will draw pushback.

Some conservative think tanks, such as the Paragon Health Institute, say the more generous subsides led people to fudge their incomes to qualify and led to other types of fraud, such as brokers signing people up for ACA plans without authorization.

But others note that many consumers — Democratic and Republican — have come to rely on the additional assistance. Not extending it could be risky politically. In 2024, 56% of ACA enrollees lived in Republican congressional districts, and 76% were in states won by Trump.

Allowing the enhanced subsidies to expire could also reshape the market.

Brooker said some people may drop coverage. Others will shift to plans with lower premiums but higher deductibles. One provision of Trump’s new tax law allows people enrolled in either “bronze” or “catastrophic”-level ACA plans, which are usually the cheapest, to qualify for health savings accounts, which allow people to set aside money, tax-free, to cover health care costs.

“Naturally, if rates do start going up the way we anticipate, there will be a migration to lower-cost options,” Brooker said.

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).

Last year in Massachusetts, after finding lumps in her breast, Jessica Chen went to Lowell General Hospital-Saints Campus, part of Tufts Medicine, for a mammogram and sonogram. Before the screenings, she asked the hospital for the estimated patient responsibility for the bill using her insurance, Tufts Health Plan. Her portion, she was told, would be $359 — and she paid it. She was more than a little surprised weeks later to receive a bill asking her to pay an additional $1,677.51. “I was already trying to stomach $359, and this was many times higher,” Chen, a physician assistant, told me.

The No Surprises Act, which took effect in 2022, was rightly heralded as a landmark piece of legislation, which “protects people covered under group and individual health plans from receiving surprise medical bills,” according to the Centers for Medicare & Medicaid Services. And yet bills that take patients like Chen by surprise just keep coming.

With the help of her software-wise boyfriend, she found the complicated “machine-readable” master price list that hospitals are required to post online and looked up the negotiated rate between Lowell General and her insurer. It was $302.56 — less than she had paid out-of-pocket.

CMS is charged with enforcing the law, so Chen sent a complaint about the surprising bill to the agency. She received a terse email in return: “We have reviewed your complaint and have determined that the rights and protections of the No Surprises Act do not apply.”

When I asked the health system to explain how such a surprising off-estimate bill could be generated, Tufts Medicine spokesperson Jeremy Lechan responded by email: “Healthcare billing is complex and includes various factors and data points, so actual charges for care provided may differ from initial estimates. We understand the frustration these discrepancies can cause.”

Here’s the problem: While the No Surprises Act has been a phenomenal success in taking on some unfair practices in the wild West of medical billing, it was hardly a panacea.

In fact, the measure protected patients primarily from only one particularly egregious type of surprise bill that had become increasingly common before the law’s enactment: When patients unknowingly got out-of-network care at an in-network facility, or when they had no choice but to get out-of-network care in an emergency. In either case, before President Donald Trump signed the law late in his first term, patients could be hit with tens or hundreds of thousands of dollars in out-of-network bills that their insurance wouldn’t pay.

The No Surprises Act also provided some protection from above-estimate bills, but at the moment, the protection is only for uninsured and self-pay patients, so it wouldn’t apply in Chen’s case since she was using health insurance.

But patients who do qualify generally are entitled to an up-front, good-faith estimate for treatment they schedule at least three business days in advance or if they request one. Patients can dispute a bill if it is more than $400 over the estimate. (The No Surprises Act also required what amounted to a good-faith estimate of out-of-pocket costs for patients with insurance, but that provision has not been implemented, since, nearly five years later, the government still has not issued rules about exactly what form it should take.)

So, surprising medical bills — bills that the patient could not have anticipated and never consented to — are still stunning countless Americans.

Jessica Robbins, who works in product development in Chicago, was certainly surprised when, out of the blue, she was recently billed $3,300 by Endeavor Health for a breast MRI she had received two years earlier, with prior authorization from her then-insurer, Blue Cross and Blue Shield of Illinois. In trying to resolve the problem, she found herself caught in a Kafkaesque circle involving dozens of calls and emails. The clinic where she had the procedure no longer existed, having been bought by Endeavor. And she no longer had Blue Cross.

“We are actively working with the patient and their insurer to resolve this matter,” Endeavor spokesperson Allie Burke said in an emailed response to my questions.

Mary Ann Bonita of Fresno, California, was starting school this year to become a nursing assistant when, on a Friday, she received a positive skin test for tuberculosis. Her school’s administration said she couldn’t return to class until she had a negative chest X-ray. When her doctor from Kaiser Permanente didn’t answer requests to order the test for several days, Bonita went to an emergency room and paid $595 up front for the X-ray, which showed no TB. So she and her husband were surprised to receive another bill, for $1,039, a month later, “with no explanation of what it was for,” said Joel Pickford, Bonita’s husband.

In the cases above, each patient questioned an expensive, unexpected medical charge that came as a shock — only to find that the No Surprises Act didn’t apply.

“There are many billing problems out there that are surprising but are not technically surprise bills,” Zack Cooper, an associate professor of economics at Yale University, told me. The No Surprises Act fixed a specific kind of charge, he said, “and that’s great. But, of course, we need to address others.”

Cooper’s research has found that before the No Surprises Act was passed, more than 25% of emergency room visits yielded a surprise out-of-network bill.

CMS’ official No Surprises Help Desk has received tens of thousands of complaints, which it investigates, said Catherine Howden, a CMS spokesperson. “While some billing practices, such as delayed bills, are not currently regulated” by the No Surprises Act, Howden said, complaint trends nonetheless help “inform potential areas for future improvements.” And they are needed.

Michelle Rodio, a teacher in Lakewood, Ohio, had a lingering cough weeks after a bout of pneumonia that required treatment with a course of antibiotics. She went to Cleveland Clinic’s Lakewood Family Health Center for an examination. Her X-ray was fine. As was her nasal swab — except for the stunning $2,700 bill it generated.

“I said, ‘This is a surprise bill!’” Rodio recalled telling the provider’s finance office. The agent said it was not.

“So I said, ‘Next time I’ll be sure to ask the doctor for an estimate when I get a nose swab.’”

“The doctors wouldn’t know that,” the agent replied, as Rodio recalled — and indeed physicians generally have no idea how much the tests they order will cost. And in any case, Rodio was not legally entitled to a binding estimate, since the part of the No Surprises Act that grants patients with insurance that right has not been implemented yet.

So she was stuck with a bill of $471 (the patient responsibility portion of the $2,700 charge) that she couldn’t have consented to (or rejected) in advance. It was surprising — shocking to her, even — but not a “surprise bill,” according to the current law. But shouldn’t it be?

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).

Most of the 24 million people in Affordable Care Act health plans face a potential one-two punch next year — double-digit premium increases along with a sharp drop in the federal subsidies that most consumers depend on to buy the coverage, also known as Obamacare.

Insurers want higher premiums to cover the usual culprits — rising medical and labor costs and usage — but are tacking on extra percentage point increases in their 2026 rate proposals to cover effects of policy changes advanced by the Trump administration and the Republican-controlled Congress. One key factor built into their filings with state insurance departments: uncertainty over whether Congress allows more generous, covid-era ACA tax subsidies to expire at the end of December.

“The out-of-pocket change for individuals will be immense, and many won’t actually be able to make ends meet and pay premiums, so they will go uninsured,” said JoAnn Volk, co-director of the Center on Health Insurance Reforms at Georgetown University.

Especially if the higher subsidies expire, insurance premiums will be among the first financial pains felt by health care consumers after policy priorities put forward by President Donald Trump and the GOP. Many other changes — such as additional paperwork requirements and spending cuts to Medicaid — won’t occur for at least another year. But spiking ACA premiums, as the nation heads into key midterm elections, invites political pushback. Some on Capitol Hill are exploring ways to temper the subsidy reductions.

“I am hearing on both sides — more from Republicans, but from both the House and Senate” — that they are looking for levers they can pull, said Pennsylvania-based insurance broker Joshua Brooker, who follows legislative actions as part of his job and sits on several insurance advisory groups.

In initial filings, insurers nationally are seeking a median rate increase — meaning half of the proposed increases are lower and half higher — of 15%, according to an analysis for the Peterson-KFF Health System Tracker covering 19 states and the District of Columbia. KFF is a national health information nonprofit that includes KFF Health News.

That’s up sharply from the last few years. For the 2025 plan year, for example, KFF found that the median proposed increase was 7%.

Health insurers “are doing everything in their power to shield consumers from the rising costs of care and the uncertainty in the market driven by recent policy changes,” wrote Chris Bond, a spokesperson for AHIP, the industry’s lobbying group. The emailed response also called on lawmakers “to take action to extend the health care tax credits to prevent skyrocketing cost increases for millions of Americans in 2026.”

Neither the White House nor the Department of Health and Human Services responded to requests for comment.

These are initial numbers and insurance commissioners in some states may alter requests before approval.

Still, “it’s the biggest increase we’ve seen in over five years,” said analysis co-author Cynthia Cox, a KFF vice president and director of its Program on the ACA.

Premiums will vary based on where consumers live, the type of plan they choose, and their insurer.

For example, Maryland insurers have requested increases ranging from 8.1% to 18.7% for the upcoming plan year, according to an analysis of a smaller set of insurers by Georgetown University researchers. A much larger swing is seen in New York, where one carrier is asking for less than a 1% increase, while another wants 66%. Maryland rate filings indicated the average statewide increase would shrink to 7.9% from 17.1% — if the ACA’s enhanced tax credits are extended.

Most insurers are asking for 10% to 20% increases, the KFF report says, with several factors driving those increases. For instance, insurers say underlying medical costs — including the use of expensive obesity drugs — will add about 8% to premiums for next year. And most insurers are also adding 4% above what they would have charged had the enhanced tax credits been renewed.

But rising premiums are just part of the picture.

A bigger potential change for consumers’ pocketbooks hinges on whether Congress decides to extend more generous tax credits first put in place during President Joe Biden’s term as part of the American Rescue Plan Act in 2021, then extended through the Inflation Reduction Act in 2022.

Those laws raised the subsidy amounts people could receive based on their household income and local premium costs and removed a cap that had barred higher earners from even partial subsidy assistance. Higher earners could still qualify for some subsidy but first had to chip in 8.5% of their household income toward the premiums.

Across the board, but especially among lower-income policyholders, bigger subsidies helped fuel record enrollment in ACA plans.

But they’re also costly.

A permanent extension could cost $335 billion over the next decade, according to the Congressional Budget Office.

Such an extension was left out of the policy law Trump signed on July 4 that he called the “One Big Beautiful Bill.” Without action, the extra subsidies will expire at the end of this year, after which the tax credits will revert to less generous pre-pandemic levels.

That means two things: Most enrollees will be on the hook to pay a larger share of their premiums as assistance from federal tax credits declines. Secondly, people whose household income exceeds four times the federal poverty level — $84,600 for a couple or $128,600 for a family of four this year — won’t get any subsidies at all.

If the subsidies expire, policy experts estimate, the average amount people pay for coverage could rise by an average of more than 75%. In some states, ACA premiums could double.

“There will be sticker shock,” said Josh Schultz, strategic engagement manager at Softheon, a New York consulting firm that provides enrollment, billing, and other services to about 200 health insurers, many of which are bracing for enrollment losses.

And enrollment could fall sharply. The Wakely Consulting Group estimates that the combination of expiring tax credits, the Trump law’s new paperwork, and other requirements will result in ACA enrollment dropping by as much as 57%.

According to KFF, insurers added premium increases of around 4% just to cover the expiration of the enhanced tax credits, which they fear will lead to lower enrollment. That would further raise costs, insurers say, because people who are less healthy are more likely to grit their teeth and reenroll, leaving insurers with a smaller, but sicker, pool of members.

Less common in the filings submitted so far, but noticeable, are increases pegged to Trump administration tariffs, Cox said.

“What they are assuming is tariffs will drive drug costs up significantly, with some saying that can have around a 3-percentage-point increase” in premiums as a result, she said.

Consumers will learn their new premium prices only late in the fall, or when open enrollment for the ACA begins on Nov. 1 and they can start shopping around.

Congress could still act, and discussions are ongoing, said insurance broker Brooker.

Some lawmakers, he said, are consulting with the CBO about the fiscal and coverage effects of various scenarios that don’t extend the subsidies as they currently exist but may offer a middle ground. One possibility involves allowing subsidies for families earning as much as five or six times the poverty level, he said.

But any such effort will draw pushback.

Some conservative think tanks, such as the Paragon Health Institute, say the more generous subsides led people to fudge their incomes to qualify and led to other types of fraud, such as brokers signing people up for ACA plans without authorization.

But others note that many consumers — Democratic and Republican — have come to rely on the additional assistance. Not extending it could be risky politically. In 2024, 56% of ACA enrollees lived in Republican congressional districts, and 76% were in states won by Trump.

Allowing the enhanced subsidies to expire could also reshape the market.

Brooker said some people may drop coverage. Others will shift to plans with lower premiums but higher deductibles. One provision of Trump’s new tax law allows people enrolled in either “bronze” or “catastrophic”-level ACA plans, which are usually the cheapest, to qualify for health savings accounts, which allow people to set aside money, tax-free, to cover health care costs.

“Naturally, if rates do start going up the way we anticipate, there will be a migration to lower-cost options,” Brooker said.

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.

USE OUR CONTENT

This story can be republished for free (details).

The Centers for Medicare & Medicaid Services (CMS) continue to crush fraud, waste, and abuse in America’s healthcare programs

The Host Julie Rovner KFF Health News @jrovner @julierovner.bsky.social Read Julie's stories. Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

The Senate has passed — and sent back to the House — a bill that would allow the Trump administration to claw back some $9 billion in previously approved funding for foreign aid and public broadcasting. But first, senators removed from the bill a request to cut funding for the President’s Emergency Plan for AIDS Relief, President George W. Bush’s international AIDS/HIV program. The House has until Friday to approve the bill, or else the funding remains in place.

Meanwhile, a federal appeals court has ruled that West Virginia can ban the abortion pill mifepristone despite its approval by the Food and Drug Administration. If the ruling is upheld by the Supreme Court, it could allow states to limit access to other FDA-approved drugs.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, Shefali Luthra of The 19th, and Sandhya Raman of CQ Roll Call.

Panelists Joanne Kenen Johns Hopkins University and Politico @JoanneKenen @joannekenen.bsky.social Read Joanne's bio. Shefali Luthra The 19th @shefali.bsky.social Read Shefali's stories. Sandhya Raman CQ Roll Call @SandhyaWrites @SandhyaWrites.bsky.social Read Sandhya's stories.

Among the takeaways from this week’s episode:

• The Senate approved the Trump administration’s cuts to foreign aid and public broadcasting, a remarkable yielding of congressional spending power to the president. Before the vote, Senate GOP leaders removed President Donald Trump’s request to cut PEPFAR, sparing the funding for that global health effort, which has support from both parties.
• Next Congress will need to pass annual appropriations bills to keep the government funded, but that is expected to be a bigger challenge than the recent spending fights. Appropriations bills need 60 votes to pass in the Senate, meaning Republican leaders will have to make bipartisan compromises. House leaders are already delaying health spending bills until the fall, saying they need more time to work out deals — and those bills tend to attract culture-war issues that make it difficult to negotiate across the aisle.
• The Trump administration is planning to destroy — rather than distribute — food, medical supplies, contraceptives, and other items intended for foreign aid. The plan follows the removal of workers and dismantling of aid infrastructure around the world, but the waste of needed goods the U.S. government has already purchased is expected to further erode global trust.
• And soon after the passage of Trump’s tax and spending law, at least one Republican is proposing to reverse the cuts the party approved to health programs — specifically Medicaid. It’s hardly the first time lawmakers have tried to change course on their own policies, though time will tell whether it’s enough to mitigate any political (or actual) damage from the law.

Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too: 

Julie Rovner: The New York Times’ “UnitedHealth’s Campaign to Quiet Critics,” by David Enrich.

Joanne Kenen: The New Yorker’s “Can A.I. Find Cures for Untreatable Diseases — Using Drugs We Already Have?” by Dhruv Khullar.

Shefali Luthra: The New York Times’ “Trump Official Accused PEPFAR of Funding Abortions in Russia. It Wasn’t True,” by Apoorva Mandavilli.

Sandhya Raman: The Nation’s “‘We’re Creating Miscarriages With Medicine’: Abortion Lessons from Sweden,” by Cecilia Nowell.

Also mentioned in this week’s podcast:

• The Atlantic’s “The Trump Administration Is About To Incinerate 500 Tons of Emergency Food,” by Hana Kiros.
• KFF Health News’ “Vested Interests. Influence Muscle. At RFK Jr.’s HHS, It’s Not Pharma. It’s Wellness,” by Stephanie Armour.
• The Washington Post’s “A Clinic Blames Its Closing on Trump’s Medicaid Cuts. Patients Don’t Buy It,” by Hannah Knowles.

Click to open the transcript Transcript: The Senate Saves PEPFAR Funding — For Now

[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.] 

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, July 17, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So, here we go. 

Today we are joined via videoconference by Sandhya Raman of CQ Roll Call. 

Sandhya Raman: Hello, everyone. 

Rovner: Shefali Luthra of The 19th. 

Shefali Luthra: Hello. 

Rovner: And Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine. 

Joanne Kenen: Hi, everybody. 

Rovner: No interview this week, but more than enough news. So we will get right to it. 

We’re going to start on Capitol Hill, where in the very wee hours of Thursday morning, the Senate approved the $9 billion package of rescissions of money already appropriated. It was largely for foreign aid and the Corporation for Public Broadcasting, which oversees NPR and PBS. Now, this bill represents pennies compared to the entire federal budget and even to the total of dollars that are appropriated every year, but it’s still a big deal because it’s basically Congress ceding more of its spending power back to the president. And even this small package was controversial. Before even bringing it to the floor, senators took out the rescission of funds for PEPFAR [the President’s Emergency Plan for AIDS Relief], the bipartisanly popular international AIDS/HIV program begun under President George W. Bush. So now it has to go back to the House, and the clock on this whole process runs out on Friday. Sandhya, what’s likely to happen next? 

Raman: I think that the House has been more amenable. They got this through quicker, but if you look— 

Rovner: By one vote. 

Raman: Yeah. But I think if you look at what else has been happening in the House this week that isn’t in the health sphere, they’ve been having issues getting other things done, because of some pushback from the Freedom Caucus, who’s been kind of stalling the votes and having them to go back. And other things that should have been smoother are taking a lot longer and having a lot more issues. So it’s more difficult to say without seeing how all of that plays out, if those folks are going to make a stink again about something here because some of this money was taken out. It’s a work in progress this week in the House. 

Rovner: Yeah, that’s a very kind way to put it. The House has basically been stalled for the last 24 hours over, as you say, many things, completely unrelated, but there is actually a clock ticking on this. They had 45 days from when the administration sent up this rescission request, and we’re now on Day 43 because Congress is the world’s largest group of high school students that never do anything until the last minute. So Democrats warned that this bill represents yet another dangerous precedent. They reached a bipartisan agreement on this year of spending bills in the spring, and this basically rolls at least some of that back using a straight party-line vote. What does this bode for the rest of Congress’ appropriations work for the fiscal year that starts in just a couple of months? 

Raman: I think that the sense has been that once this goes through, I think a lot of people have just been assuming that it’ll take time but that things will get passed on rescissions. It really puts a damper on the bipartisan appropriations process, and it’s going to make it a lot harder to get people to come to the table. So earlier this week we had the chair of the Appropriations Committee and the chair of the Labor, HHS [Health and Human Services], Education subcommittee in the House say that the health appropriations they were going to do next week for the House are going to get pushed back until September because they’re not ready. And I think that health is also one of the hardest ones to get through. There’s a lot more controversial stuff. It’s setting us up to go, kind of like usual at this point, for another CR [continuing resolution], because it’s going to be a really short timeline before the end of the fiscal year. But if you look at some— 

Rovner: Every year they say they’re going to do the spending bills separately, and every year they don’t. 

Raman: Yeah, and I think if you look at how they’ve been approaching some of the things that have been generally a little bit less controversial and how much pushback and how much more difficulties they’ve been having with that, even this week, I think that it’s going to be much more difficult to get that done. And the rescissions, pulling back on Congress’ power of the purse, is not going to make that any easier. 

Rovner: I think what people don’t appreciate, and I don’t think I appreciated it either until this came up, is that the rescissions process is part of the budget act, which is one of these things that Congress can do on an expedited basis in the Senate with just a straight majority. But the regular appropriations bills, unlike the budget reconciliation bill that we just did, need 60 votes. They can be filibustered. So the only way to get appropriations done is on a bipartisan basis, and yet they’re using this rather partisan process to take back some of the deal that they made. The Democrats keep saying it, and everybody’s like, Oh, process, process. But that actually could be a gigantic roadblock, to stopping everything in its tracks, right? 

Raman: I really think so. And if you look at who are the two Republicans in the Senate that voted against the rescissions, one of them is the Senate Appropriations chair, Susan Collins. And throughout this, one of her main concerns was when we still had the PEPFAR in there. But it just takes back her power as the highest-ranking appropriator in the Senate to do it through this process, especially when she wasn’t in favor of the rescissions package. 

So it’s going to make things, I think, a lot more complicated, and one of her concerns throughout has just been that there wasn’t enough information. She was pulling out examples of rescissions in the past and how it was kind of a different process. They were really briefed on why this was necessary. And it was just different now. So I think what happens with appropriations and how long it’ll take this year is going to be interesting to watch. 

Rovner: And it’s worth remembering that it’s when the appropriations don’t happen that the government shuts down. So, but that doesn’t happen until October. Well, separately we learned that — oh, go ahead, Joanne. 

Kenen: There’s also sort of a whole new wrinkle, is that rescissions is, if you’re a Republican and you don’t like something and you end up, to avoid a government shutdown or whatever reason, you end up having to vote for a bill, you just have the president put out a statement saying, If this goes through, I’m going to cut it afterwards. And then the Republican who doesn’t like it can give a floor speech saying, I’m voting for it because I like this in it and I know that the president’s going to take care of that. It really — appropriations is always messy, but there’s this whole unknown. The constitutional balance of who does what in the American government is shifting. And at the end of the day, the only thing we do know after both the first term and what’s happened so far even more so in the second term, is what [President Donald] Trump wants, Trump tends to get. 

So, Labor-H [the appropriations for Labor, HHS, Education and related agencies], like Sandhya just pointed out, the health bill is one of the hardest because there’s so much culture-war stuff in it. But, although, the Supreme Court has put some of that off the table. But I just don’t know how things play out in the current dynamic, which is unprecedented. 

Rovner: And of course, Labor-HHS also has the Department of Education in it. 

Kenen: The former Department of Education. 

Rovner: To say, which is in the process of being dismantled. So that’s going to make that even more controversial this year. Moving back to the present, separately we learned this week that the administration plans to spend hundreds of thousands of dollars of taxpayer money to destroy stocks of food and contraceptives and other medical devices rather than distribute them through some of the international aid programs that they’re canceling. Now, in the case of an estimated 500 tons of high-energy biscuits bought by USAID [the U.S. Agency for International Development] at the end of the Biden administration, you can almost understand it because they’re literally about to expire next week. According to The Atlantic, which first reported this story, this is only a small part of 60,000 metric tons of food already purchased from U.S. farmers and sitting in warehouses around the world, where the personnel who’d be in charge of distributing them would’ve been fired or transferred or called back to the U.S. 

At the same time, there are apparently also plans to destroy an estimated $12 million worth of HIV prevention supplies and contraceptives originally purchased as part of foreign aid programs rather than turn them over or even sell them to other countries or nonprofits. This feels like maybe the not most efficient use of taxpayer dollars? 

Luthra: I think this is something we’ve talked about before, but it really bears repeating. As a media ecosphere, we’ve sort of moved on from the really rapid dismantling of USAID. And it was not only without precedent. It was incredibly wasteful with the sudden way it was done, all of these things that were already purchased no longer able to be used, leases literally broken. And people had to pay more to break leases for offices set up in other countries, all these sorts of things that really could have already been used because they had been paid for. And instead, the money is simply lost. 

And I think the important thing for us to remember here is not only the immense waste financially to taxpayers but the real trust that has been lost, because these were promises made, things purchased, programs initiated, and when other countries see us pulling back in such a, again, I keep saying wasteful, but truly wasteful manner, it’s just really hard to ever imagine that the U.S. will be a reliable partner moving forward. 

Rovner: Yeah, absolutely. I understand the food thing to some extent because the food’s going to expire, but the medical supplies that could be distributed by somebody else? I’m still sort of searching for why that would make any sense in any universe, but yeah I guess this is the continuation of, We’re going to get rid of this aid and pretend that it never happened. 

Well, meanwhile, it’s only been a couple of weeks, but we’re starting to see the politics of that big Trump tax and spending measure play out. One big question is: Why didn’t Republicans listen to the usually very powerful hospital industry that usually gets its way but did not this time? And relatedly, will those Republicans who voted with Trump but against those powerful hospital interests do an about-face between now and when these Medicaid cuts are supposed to take effect? We’ve already seen Sen. Josh Hawley, the Republican from Missouri who loudly proclaimed his opposition to those Medicaid cuts before he voted for them anyway, introduce legislation to rescind them. So is this the new normal? I think, Joanne, you were sort of alluding to this, that you can now sort of vote for something and then immediately say: Didn’t mean to vote for that. Let’s undo it. 

Kenen: You could even do it before you vote for it, if they play it right. If Congress passes these things, we’re not going to pay attention. We’re already in that moment. But also, when I was working on a Medicaid piece, the magazine piece like four or five months ago, one of the most cynical people I know in Washington told me, he said, Oh, they’ll pass these huge cuts because they need the budget score to get the taxes through, and then they’ll start repealing it. And it seemed so cynical at the time, only he might’ve been right. 

So I don’t think they’re going to cut all of it. Republicans ideologically want a smaller Medicaid program. They want less spending. They want work requirements. You’re not going to see the whole thing go away. Could you see some retroactive tinkering or postponement or something? Yeah, you could. It’s too soon to know. Hospitals are the biggest employer in many, many congressional districts. This is a power— 

Rovner: Most of them. 

Kenen: Most, yeah. I don’t think it’s quite all, but like a lot. It’s the biggest single employer, and Medicaid is a big part of their income. And they still by law have to stabilize people who come in sick, and there’s emergency care and all sorts of other things, right? They do charity care. They do uninsured people. They do all sorts. They still treat people under certain circumstances even when they can’t pay. But right now, the threat of a primary opponent is more powerful than the threat of your local hospital being mad at you and harming health care access in your community. So much in the Republican world revolves around not getting the president mad enough that he threatens to get you beaten in a primary. We’ve seen that time and again already. 

Rovner: Right. And I will also say there’s precedent for this, for passing something and then unpassing it. Joanne and I covered in 19— 

Kenen: But it wasn’t the plan. 

Rovner: Yeah, I know. But remember, back in 1997 when they passed the Balanced Budget Act, every year for the next — was it three or four years? They did what we came to call “give back” bills. 

Kenen: Or punting, right? 

Rovner: Yeah, where they basically undid, they unspooled, some of those cuts, mostly because they’d cut more deeply than they’d intended to. And then we know with the Affordable Care Act, I’ve said this several times, they passed all of these financing mechanisms for it and then one by one repealed them. 

Kenen: And the individual mandate — I mean everything- 

Rovner: And the individual mandate, right. 

Kenen: They kept the dessert and they gave away everything. They undid everything that paid for the dessert, basically. 

Rovner: Right. Right. 

Kenen: And so it was the Cadillac — because people don’t remember anymore — the Cadillac tax, the insurance tax, the device tax. They all were like, One at a time! And they were repealed because lobbying works. 

Rovner: The tanning tax just went. 

Kenen: Right, right. So that dynamic existed, passing something unpopular and then redoing it, but the dynamic now really just comes — basically this is Donald Trump’s town. He has had a remarkable success in not only getting Congress to do what he wants but getting Congress to surrender some of its own powers, which have been around since Congress began. This is the way our government was set up. So there’s a very, very different dynamic, and it’s still unpredictable. None of us thought that the biggest crisis would be the [Jeffrey] Epstein case, right? Which is not a health story, and we don’t have to spend any time on it except to acknowledge— 

Rovner: Please. 

Kenen: —that there’s stuff going on in the background that people who had been extremely loyal to the president are now mad. And we don’t know how long. He’s very good at neutralizing things, too. He’s blaming it on the Democrats. 

But there is a different dynamic. Congress has less power because Congress gave up some of its power. Are they going to want to reassert themselves? There is no sign of it right now, but who knows what happens. I thought they would cut Medicaid. I thought they would do work requirements. I thought they would let the enhanced ACA subsidies expire. But I did not think the cuts would go this deep and this extensive — really transformationally pretty historic cuts. 

Rovner: Shefali, you wanted to say something? 

Kenen: Not pretty historic cuts, very historic cuts. Unprecedented. 

Luthra: I was thinking Joanne made such a good point about how, for all of the talk now about trying to mitigate that backlash, a lot of this is in line ideologically with what Republicans want. They do want a smaller Medicaid program. And I think a really interesting and still open question is whether they are willing and able to actually create policy that does reverse some of these cuts or not, and even if they do, if it’s sufficient to change voters’ perception, because we know that these cuts are very unpopular. Democrats are talking about them a lot. Hospitals are talking about them a lot. And just the failed attempt to repeal the ACA led to the 2018 midterms. And I think there is a real chance that this is the dominant topic when we head into next year’s elections. And it’s hard to say if Josh Hawley putting out a bill can undo that damage, so—. 

Rovner: Well, I’m so glad you mentioned that, because The Washington Post has a really interesting story about a clinic closing in rural Nebraska, with its owners publicly blaming the impending Medicaid cuts. Yet its Trump-supporting patients are just not buying it. Now in 2010, Republicans managed to hang the Affordable Care Act around Democrats’ necks well before the vast majority of the changes took place. Are Democrats going to be able to do that now? There’s a lot of people saying, Oh, well, they’re not going to be able to blame this on the Republicans, because most of it won’t have happened yet. This is really going to be a who-manages-to-push-their-narrative, right? 

Kenen: This really striking thing about that story is that the people who were losing access, they’re not losing their Medicaid yet, but they’re losing access to the only clinic within several — they have to drive hours now to get medical care. And when they were told this was because the Republican Congress and President Trump, they said, Oh no, it can’t be. First of all, a lot of people just don’t pay attention to the news. We know that. And then if you’re paying attention to news that never says anything negative about the president, that blames everything on Joe Biden no matter — if it rains yesterday, it was his fault, right? 

So the sort of gap between — there are certain things that are matters of opinion and interpretation, and there are certain things that are matters of fact, but those facts are not getting through. And we do not know whether the Democrats will be able to get them through, because the resistance, it’s almost magical, right? My clinic closed because of a Republican Medicaid bill? Oh no, it’s hospital greed. They just don’t want to treat us anymore. They just, it doesn’t compute, because it doesn’t fit into what they have been reading and hearing, to the extent that they read and hear. 

Rovner: Sandhya, you want to add something? 

Raman: The one thing that as I’ve been asking around on Capitol Hill about the Hawley bill — and there was one from Sen. Rand Paul, and a House counterpart, from [Rep.] Greg Steube, does sort of the opposite — it wants to move up the timeline for one of the provisions. So one important thing to consider is neither of these bills have had a lot of buy-in from other members of Congress. They’ve been introduced, but the people that I’ve talked to have said, I’m not sure. 

And I think something interesting that Sen. Thom Tillis had said was: If Republicans had a problem with what some of the impacts would be, then why were they denying that there would be an effect on rural health or some of those things to begin with? And I think a lot of it will take some time to judge to see if people will move the needle, but if we’re going to change any of these deadlines through not reconciliation, you need 60 votes in the Senate and you’ll need Democrats on board as well as Republicans. And I think one interesting thing to watch there is that I think some of the Democrats are also looking at this in a political way. If there’s a Republican that has a bill that is trying to tamp down some of the effects of their signature reconciliation law, do they want to help them and sign on to that bill or kind of illustrate the effects of the bill before the midterms or whatever? 

Rovner: A lot more politics to come. 

Raman: Yeah. Yeah. 

Rovner: Meanwhile, over at HHS [the Department of Health and Human Services], there is also plenty of news. Many of the workers who’ve been basically in limbo since April when a judge temporarily halted the Trump administration’s efforts to downsize have now been formally let go after the Supreme Court last week lifted that injunction. What are we hearing about how things are going over at HHS? We’ve talked sort of every week about this sort of continuing chaos. I assume that the hammer falling is not helping. It’s not adding to things settling down. 

Kenen: No. And then Secretary [Robert F.] Kennedy [Jr.] just fired two top aides because — no one knows exactly the full story but it’s — and I certainly do not know the full story. But what I have read is that the personality conflict with his top aide — and that happens in offices, and he’s not the first person in the history of HHS to have people who don’t get along with one another. But it’s just more unsettled stuff in an agency already in flux, because now in addition to all these people being let go in all sorts of programs and programs being rolled back, you also have some leadership chaos at the top. 

Rovner: Well, meanwhile, HHS Secretary Kennedy took office with vows to eliminate the financial influence of Big Pharma, Big Food, and other industries with potential conflicts of interests. But shoutout here to my KFF Health News colleague Stephanie Armour, who has a story this week about how the new vested interests at HHS are the wellness industry. Kennedy and four top advisers, three of whom have been hired into the department, wrote Stephanie, quote, “earned at least $3.2 million in fees and salaries from their work opposing Big Pharma and promoting wellness in 2022 and 2023, according to a KFF Health News review of financial disclosure forms filed with the U.S. Office of Government Ethics and the Department of Health and Human Services; published media reports; and tax forms filed with the IRS. That total doesn’t include revenue from speaking fees, the sale of wellness products, or other income sources for which data is not publicly available.” Have we basically just traded one form of regulatory capture for another form of regulatory capture? 

Kenen: And one isn’t covered by insurance. Some of it is, but there’s a lot of stuff in the, quote, “wellness” industry that providers and so forth, certain services are covered if there’s licensed people and an evidence base for them, but a lot of it isn’t. And these providers charge a lot of money out-of-pocket, too. 

Rovner: And they make a lot of money. This is a totally — unlike Big Pharma, Big Food, and Big Medicine, which is regulated, Big Wellness is largely not regulated. 

Kenen: I think Stephanie — that was a really good piece — and I think Stephanie said it was, what, $6.3 trillion industry? Was that— 

Rovner: Yeah, it’s huge. 

Kenen: Am I remembering that number right? It’s largely unregulated. Many of the products have never gone through any review for safety or efficacy. And insurance doesn’t cover a lot of it. It doesn’t mean it’s all bad. There are certain things that are helpful, but as an industry overall, it leaves something for us to worry about. 

Rovner: Well, in HHS-adjacent breaking news that could turn out to be nothing or something really big, an appeals court in Richmond on Tuesday ruled 2-1 that West Virginia may in fact limit access to the abortion pill, even though it’s approved by the FDA [Food and Drug Administration]. It’s the first time a federal appeals court has basically said that states can effectively override the FDA’s nationwide drug approval authority. And it’s the question that the Supreme Court has already ducked once, in that case out of Texas last year where the justices ruled that the doctors who were suing didn’t have standing, so they didn’t have to get to that question. But, Shefali, this has implications well beyond abortion, right? 

Luthra: Oh, absolutely. We are seeing efforts across the country to restrict access to certain medications that are FDA-approved. Abortion pills are the obvious one, but, of course, we can think about gender-affirming care. We can think about access to all sorts of other therapeutics and even vaccines that are now sort of coming under political fire. And if FDA approval means less than state restrictions, as we are seeing in this case, as we very possibly could see as these kinds of arguments and challenges make their way to the Supreme Court. The case you alluded to earlier with the doctors who didn’t have standing is still alive, just with different plaintiffs now. And so these questions will probably come back. There are just such vast ramifications for any kind of medication that could be politicized, and it’s something that industry at large has been very worried about since this abortion pill became such a big question. And it is something that this decision is not going to alleviate. 

Rovner: Yes. Speaking of Big Pharma, they’re completely freaked out by this possibility because it does have implications for every FDA-approved drug. 

Luthra: And they invest so much money in trying to get products that have FDA approval. There’s a real promise that with this global gold standard, you will be able to keep a drug on the market and really make a lot of money on it. There’s also obviously concerns for birth control, which we aren’t seeing legally restricted in the same way as abortion yet, but it is something that is so deeply subject to politics and culture-war issues that that’s something that we could see coming down the line if trends continue the way they are. 

Rovner: Well, we will watch that space. Moving on. Wednesday was the third anniversary of the federal 988 federal crisis line, which has so far served an estimated 16 million people with mental health crises via call, text, or chat. An estimated 10% of those calls were routed through a special service for LGBTQ+ youth, which is being cut off today by the Trump administration, which accused the program, run by the Trevor Project, as, quote, “radical gender ideology.” Now, LGBTQ+ youth are among those at the highest risk for suicide, which is exactly what the 988 program was created to prevent. Yet there’s been very little coverage of this. I had to actually go searching to find out exactly what happened here. Is this just kind of another day in the Trump administration? 

Raman: I think a lot of it stems back to some of those initial executive orders related to gender ideology and DEI [diversity, equity, and inclusion] and things like that. The Trump administration’s kind of argument is that it shouldn’t be siloed. It should be all general. There shouldn’t be sort of special treatment, even though we do have specialized services for veterans who call in to these services and things. But I— 

Rovner: Although that was only saved when members of Congress complained. 

Raman: Yeah. But I do think that when we have so much happening in this space focused on LGBTQ issues, it’s easier for things to get missed. I think the one thing that I did notice was that California announced yesterday that they were going to step up to do a partnership with the Trevor Project to at least — the LGBTQ youth calling from California to any of those local 988 centers would be reaching people that have been trained a little bit more in cultural competency and dealing with LGBTQ youth. But that’s not going to be all the states and it’s going to take time. Yeah. 

Rovner: Yeah, we’re going to continue to see this cobbled together state by state. It feels like increasingly what services are available to you are going to be very much dependent on where you live. That’s always been true, but it feels like it’s getting more and more and more true. Shefali, I see you nodding. 

Luthra: Something you alluded to that I think bears making explicit is public health interventions are typically targeted toward people who are in greater danger or are at greater risk. That’s not discrimination — that’s public health efficiency. And suggesting that we shouldn’t have resources targeted toward people at higher risk of suicide is counter to what public health experts have been arguing for a very long time. And that’s just something that I think really bears noting and keeping in mind as we see what the impact of this is moving forward. 

Rovner: Yeah, I think that’s a very good point. Thank you. 

Well, speaking of popular things that are going away, a federal judge appointed by President Trump last week struck down the last-minute Biden administration rule from the Consumer Financial Protection Bureau that tried to bar medical debt from appearing on credit reports. This had been hailed as a major step for the 100 million Americans with medical debt, which is not exactly the same as buying a car or a TV that you really can’t afford. People don’t go into medical debt saying, Oh, I think I’m going to go run up a big medical bill that I can’t pay. But this strikes me as yet another way this administration is basically inflicting punishment on its own voters. Yes? 

Kenen: Yes, except we just don’t know. Some red states are so red that you don’t need every voter. We don’t know who actually votes, and we don’t know whether people make these connections, right? What we were talking about before with Medicaid — do they understand that this is something that President Trump not just urged but basically ordered Congress to do? So do people pay attention? How many people even know if their medical debt is or is not on their credit report? They know they have the medical debt, but I’m not sure everybody understands all the implication, particularly if you’re used to being in debt. You may be somebody who’s lost a job or couldn’t pay your mortgage or couldn’t pay your rent. Some of the people who have medical debt have so many other financial — not all — that it’s just part of a debt soup and it’s just one more ingredient. 

So how it plays out and how it’s perceived? It’s part of this unpredictable mix. Trump is openly talking about gerrymandering more, and so it won’t matter what voters do, because they’ll have more Republican seats. That’s just something he’s floating. We don’t know whether it’ll actually happen, but he floated it in public, so— 

Rovner: So much of this is flooding the zone, that people — there’s so much happening that people have no idea who’s responsible for what. There’s always the pollster question: Is your life better or worse than it was last year? Or four years ago, whatever. And I think that when you do so much so fast, it’s pretty hard to affix blame to anybody. 

Raman: And most people aren’t single-issue voters. They’re not going to the polls saying, My medical debt is back on my credit report. There’s so many other things, even if with the last election, health care was not the number one issue for most voters. So it’s difficult to say if it will be the top issue for the next election or the next one after that. 

And I guess just piggybacking that a lot of the times when there’s these big changes, they don’t take effect for a while. So it’s easier to rationalize, Oh, it may have been this person or that person or the senator then, or who was president at a different time, just because of how long it takes to see the effects in your daily life. 

Rovner: Politics is messy. All right, well, this is as much time for the news as we have this week? Now it’s time for our extra-credit segment. That’s where we each recognize a story we read this week we think you should read, too. Don’t worry if you miss it. We’ll put the links in our show notes on your phone or other mobile device. Shefali, why don’t you go first this week? 

Luthra: Sure. My piece is from The New York Times, by Apoorva Mandavilli. The headline is “Trump Official Accused PEPFAR of Funding Abortions in Russia. It Wasn’t True.” And she takes a look at when the head of the OMB [Office of Management and Budget] told the Senate that PEPFAR had spent almost $10 million advising Russian doctors on abortions and gender analysis. And she goes through and says this isn’t true. PEPFAR hasn’t been in Russia. They cannot fund abortions. And she talks with people who were there and can say this simply isn’t true and this is very easy to disprove. And I like this piece because it’s just a reminder that a lot of things are being said about government spending that are not true. And it is a public service to remind readers that they are very easily disproven. 

Rovner: Yeah, and to go ahead and do that. Sandhya. 

Raman: My extra credit is “‘We’re Creating Miscarriages With Medicine’: Abortion Lessons From Sweden,” and it’s from Cecilia Nowell for The Nation, my co-fellow through AHCJ [the Association of Health Care Journalists] this year. Cecilia went to Kiruna, which is an Arctic village in Sweden, to look at how they’re using mifepristone for abortions up to 22 weeks in pregnancy, compared to up to 10 weeks in the U.S. And it’s a really interesting look at how they’re navigating rural access to abortion in very remote areas. Almost all abortions in Sweden are done through medication abortion, and while the majority here are in the 60% versus high 90s. So just interesting how they’re taking their approach there as rural access is limited here. 

Rovner: Really interesting story. Joanne. 

Kenen: This is a piece in The New Yorker by Dhruv Khullar, and it’s “Can A.I. Find Cures for Untreatable Diseases — Using Drugs We Already Have?” And what I found interesting, we’ve been hearing about: Can AI do this? It’s sort of been in the air since AI came around. But what was so interesting about this article is there’s a nonprofit that is actually doing it, and they have this sort of whole sort of hierarchy of why a drug may be promising and why a disease may be a good target. And then the AI look at genetics and diseases, and they have four or five factors they look at. And then there’s this just sort of hierarchy of which are the ones we can make accessible. 

So A, it’s actually happening. B, it has promise. It’s not a panacea, but there’s promise. And C, it’s being done by a nonprofit. It’s not a cocktail for an individual patient. It’s trying to figure out: What are the smartest drugs to be looking at and what can they treat? And they give examples of people who have gone into remission from rare diseases. And also it says there are 18,000 diseases and only 9,000 have treatment. So this is huge, right? Rare diseases may only affect a few people, but there are lots of rare diseases. So cumulatively some of the people they strike are young. So for someone who doesn’t always read about AI, I found this one interesting. 

Rovner: Also, we read somebody’s story about how AI is terrible for this, that, and the other thing. It is very promising for an awful lot of things. 

Kenen: No. Right. 

Rovner: There’s a reason that everybody’s looking at it. 

All right, my extra credit this week is also from The New York Times. It’s called “UnitedHealth’s Campaign to Quiet Critics,” by David Enrich, who’s The Times’ deputy investigations editor and, notably, author of a book on attacks on press freedoms. That’s because the story chronicles how UnitedHealth, the mega health company we have talked about a lot on this show, is taking a cue from President Trump and increasingly taking its critics to court, in part by claiming that critical reporting about the company risks inciting further violence like the Midtown Manhattan murder of United executive Brian Thompson last year. 

I hasten to add, this isn’t a matter of publications making stuff up. United, as we have pointed out, is a subject of myriad civil and criminal investigations into potential Medicare fraud as well as antitrust violations. This is still another chapter unfolding in the big United story. 

OK, that is this week’s show. Thanks as always to our editor, Emmarie Huetteman, and our producer-engineer, Francis Ying. If you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us to review. That helps other people find us, too. Also, as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can find me on X, @jrovner, or on Bluesky, @julierovner. Where are you folks hanging these days? Shefali? 

Raman: I’m at Bluesky, @shefali. 

Rovner: Sandhya. 

Raman: I’m at X and at Bluesky, @SandhyaWrites. 

Rovner: Joanne? 

Kenen: I’m mostly at Bluesky, @joannekenen.bsky, and I’ve been posting things more on LinkedIn, and there are more health people hanging out there. 

Rovner: So we are hearing. We will be back in your feed next week. Until then, be healthy. 

Credits Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

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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 Host Julie Rovner KFF Health News @jrovner @julierovner.bsky.social Read Julie's stories. Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.

The Senate has passed — and sent back to the House — a bill that would allow the Trump administration to claw back some $9 billion in previously approved funding for foreign aid and public broadcasting. But first, senators removed from the bill a request to cut funding for the President’s Emergency Plan for AIDS Relief, President George W. Bush’s international AIDS/HIV program. The House has until Friday to approve the bill, or else the funding remains in place.

Meanwhile, a federal appeals court has ruled that West Virginia can ban the abortion pill mifepristone despite its approval by the Food and Drug Administration. If the ruling is upheld by the Supreme Court, it could allow states to limit access to other FDA-approved drugs.

This week’s panelists are Julie Rovner of KFF Health News, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico Magazine, Shefali Luthra of The 19th, and Sandhya Raman of CQ Roll Call.

Panelists Joanne Kenen Johns Hopkins University and Politico @JoanneKenen @joannekenen.bsky.social Read Joanne's bio. Shefali Luthra The 19th @shefali.bsky.social Read Shefali's stories. Sandhya Raman CQ Roll Call @SandhyaWrites @SandhyaWrites.bsky.social Read Sandhya's stories.

Among the takeaways from this week’s episode:

• The Senate approved the Trump administration’s cuts to foreign aid and public broadcasting, a remarkable yielding of congressional spending power to the president. Before the vote, Senate GOP leaders removed President Donald Trump’s request to cut PEPFAR, sparing the funding for that global health effort, which has support from both parties.
• Next Congress will need to pass annual appropriations bills to keep the government funded, but that is expected to be a bigger challenge than the recent spending fights. Appropriations bills need 60 votes to pass in the Senate, meaning Republican leaders will have to make bipartisan compromises. House leaders are already delaying health spending bills until the fall, saying they need more time to work out deals — and those bills tend to attract culture-war issues that make it difficult to negotiate across the aisle.
• The Trump administration is planning to destroy — rather than distribute — food, medical supplies, contraceptives, and other items intended for foreign aid. The plan follows the removal of workers and dismantling of aid infrastructure around the world, but the waste of needed goods the U.S. government has already purchased is expected to further erode global trust.
• And soon after the passage of Trump’s tax and spending law, at least one Republican is proposing to reverse the cuts the party approved to health programs — specifically Medicaid. It’s hardly the first time lawmakers have tried to change course on their own policies, though time will tell whether it’s enough to mitigate any political (or actual) damage from the law.

Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too: 

Julie Rovner: The New York Times’ “UnitedHealth’s Campaign to Quiet Critics,” by David Enrich.

Joanne Kenen: The New Yorker’s “Can A.I. Find Cures for Untreatable Diseases — Using Drugs We Already Have?” by Dhruv Khullar.

Shefali Luthra: The New York Times’ “Trump Official Accused PEPFAR of Funding Abortions in Russia. It Wasn’t True,” by Apoorva Mandavilli.

Sandhya Raman: The Nation’s “‘We’re Creating Miscarriages With Medicine’: Abortion Lessons from Sweden,” by Cecilia Nowell.

Also mentioned in this week’s podcast:

• The Atlantic’s “The Trump Administration Is About To Incinerate 500 Tons of Emergency Food,” by Hana Kiros.
• KFF Health News’ “Vested Interests. Influence Muscle. At RFK Jr.’s HHS, It’s Not Pharma. It’s Wellness,” by Stephanie Armour.
• The Washington Post’s “A Clinic Blames Its Closing on Trump’s Medicaid Cuts. Patients Don’t Buy It,” by Hannah Knowles.

Credits Francis Ying Audio producer Emmarie Huetteman Editor

To hear all our podcasts, click here.

And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.

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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In the wake of January’s deadly wildfires, Los Angeles County leaders are weighing a disaster registry intended to help disabled and senior residents get connected to emergency responders to bring them to safety during disasters.

County supervisors approved a feasibility study this spring for such a voluntary database. Supporters applauded the effort to give more notice and assistance to the more than 1 million county residents with some type of disability, such as cognitive impairment or limited mobility.

“If we know that people perish in these situations, what are our answers?” said Hilary Norton, who runs FASTLinkDTLA, a nonprofit focused on mobility issues. “This is the time for people to really understand the magnitude for people in need when things like this happen.”

Amid the increasing frequency of natural disasters across the U.S. — brought into sharp relief by the recent deadly floods in Texas — state and local governments from Oregon to North Carolina have turned to disaster registries to prioritize help for vulnerable residents when fires, hurricanes, and other environmental catastrophes strike. But while some politicians say these registries are a potential solution to a public health problem, many disability advocates see them as ineffective tools that give people a false sense of security because there is no guarantee of evacuation help.

“They’re described in a way that communicates that if you place your information in this registry and you will need assistance, they will be able to plan for it, so in a disaster you will be safer. And in reality, that is simply not the case,” said Maria Town, president and CEO of the American Association of People with Disabilities.

Town, who has cerebral palsy, had been in Houston for six months when Hurricane Harvey hit in 2017. Texas makes a free registry called the State of Texas Emergency Assistance Registry available to cities and counties to help them identify needs in their communities, but how or if they use it is up to them. Fewer than 5% of people who registered were contacted during Harvey, and even fewer got evacuation assistance, according to a 2023 study by the National Council on Disability, a federal agency that advises on disability policies and programs. The hurricane took 89 lives.

“I heard people say, ‘I thought I was safe. I registered,’” Town said of the calls she got during and after Harvey.

Neither the Texas Division of Emergency Management nor officials in Kerr County, the area hit hardest by the recent floods in Texas Hill Country, responded to questions about whether any accommodations were made for residents on the registry during the early July catastrophe.

Many registries, like Florida’s Special Needs Registry, expressly tell participants they still must make their own evacuation plans. The Florida Department of Health oversees the registry and, like in Texas, shares the information with local emergency management officials for their use. In North Carolina’s Rockingham County, individuals must apply to be on the registry, and inclusion is not guaranteed. The registry page for Jackson and Josephine counties in Oregon warns that it can take up to three months for residents’ information to be made available to rescue workers.

The National Council on Disability says registries are harmful. “They are ineffective and provide a false sense of security of future guaranteed assistance,” Nicholas Sabula, a spokesperson for the organization, said in a statement.

The California Governor’s Office of Emergency Services also “strongly discourages” using registries, saying they can deter people from making their own disaster plans and raise privacy concerns. Disability advocates have also cited privacy as a concern.

But Los Angeles politicians behind the registry effort insist they are worth looking into — at least a third of those who died in the Eaton Fire had issues that could affect their mobility and therefore their ability to flee in the face of disaster, according to a Los Angeles Times analysis. Anthony Mitchell Sr., an amputee in a wheelchair, and his 35-year-old son, Justin, who had cerebral palsy, were among the 18 people killed when the wildfire ripped through the Los Angeles County community of Altadena in January.

Further driving the initiative is the aging of L.A. County’s population: The California Department of Finance’s Demographic Research Unit has estimated that more than a quarter of Los Angeles County residents will be 60 or over by 2030 — about 2.5 million people.

Supervisor Kathryn Barger, who represents Altadena and proposed the registry study along with Supervisor Janice Hahn, “wants to drill down and explore its usefulness,” according to her communications director, Helen Chavez Garcia. Barger had not yet talked to the first responder community or had conversations about how emergency services would use the registry, according to Chavez Garcia.

Victoria Jump, an assistant director at the county’s Aging & Disabilities Department, is conducting the feasibility study — which she noted does not include cost estimates — and will make a recommendation to the Board of Supervisors this month on whether to support the project. The board will decide whether to move forward. Jump said she’s gotten largely positive feedback in more than a dozen community sessions.

It’s not the first time Los Angeles has considered and even implemented a disaster registry. The county maintained a voluntary disaster registry called Specific Needs Awareness Planning, but acknowledged in 2016 that the program did “not guarantee priority service to those who register” and had a “low return on investment.” It was discontinued, and registrants were migrated to a mass emergency alert system called Alert LA County.

“We’ve been through this before with the county. It didn’t work. It hasn’t worked around the country,” said Los Angeles resident June Kailes, a disability advocate who uses a power scooter.

Kailes sees what happened in the Eaton Fire as a problem with emergency planning, saying that the county needs to better understand how to offer people with disabilities emergency transportation. She pointed to Galen Buckwalter, a paralyzed Eaton Fire survivor who reportedly drove his motorized wheelchair a mile in the dark to evacuate when he realized it would be impossible for a ride-hailing service to pick him up given the conditions.

Norton, of the mobility nonprofit FASTLinkDTLA, said the registry needs to be about more than just collecting names of disabled residents. “No one wants to create false hope,” Norton said. “It’s an agreement to explore the possibilities. It’s that balance of asking now, in order to make sure in the next disaster they are not left behind.”

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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LISTEN: Federal law entitles patients to interpreters if they don’t have a strong grasp of English. KFF Health News correspondent Vanessa G. Sánchez appeared on WAMU’s “Health Hub” on July 9 to explain why some Trump administration policies are leaving patients fearful to ask for language services. 

Patients need to communicate clearly with their health care provider. But that’s getting more difficult for those in the U.S. who don’t speak English. 

Budget cuts by the Trump administration have left some providers scrambling to keep qualified medical interpreters. And an executive order designating English the official language of the United States has created confusion among providers about what services should be offered. 

Patients who don’t speak English are left afraid, and perhaps at risk for medical mistakes. What happens when those who need help are too frightened to ask? 

In WAMU’s July 9 “Health Hub” segment, KFF Health News correspondent Vanessa G. Sánchez explained why health advocates worry these changes could lead to worse patient outcomes. 

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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One of the world’s biggest genetic databases comprises DNA data donated over the years by more than a million retired military service members. It’s part of a project run by the Department of Veterans Affairs.

The initiative, dubbed the Million Veteran Program, is a “crown jewel of the country,” said David Shulkin, a physician who served as VA secretary during the first Trump administration. Data from the project has contributed to research on the genetics of anxiety and peripheral artery disease, for instance, and has resulted in hundreds of published papers. Researchers say the repository has the potential to help answer health questions not only specific to veterans — like who is most vulnerable to post-service mental health issues, or why they seem more prone to cancer — but also relevant to the nation as a whole.

“When the VA does research, it helps veterans, but it helps all Americans,” Shulkin said in an interview.  

Researchers now say they fear the program is in limbo, jeopardizing the years of work it took to gather the veterans’ genetic data and other information, like surveys and blood samples.

“There’s sort of this cone of silence,” said Amy Justice, a Yale epidemiologist with a VA appointment as a staff physician. “We’ve got to make sure this survives.”

Genetic data is enormously complex, and analyzing it requires vast computing power that VA doesn’t possess. Instead, it has relied on a partnership with the Energy Department, which provides its supercomputers for research purposes.

In late April, VA Secretary Doug Collins disclosed to Sen. Richard Blumenthal, the top Democrat on the Senate Veterans’ Affairs Committee, that agreements authorizing use of the computers for the genomics project remained unsigned, with some expiring in September, according to materials shared with KFF Health News by congressional Democrats.

Spokespeople for the two agencies did not reply to multiple requests for comment. Other current and former employees within the agencies — who asked not to be identified, for fear of reprisal from the Trump administration — said they don’t know whether the critical agreements will be renewed.

One researcher called computing “a key ingredient” to major advances in health research, such as the discovery of new drugs.

The agreement with the Energy Department “should be extended for the next 10 years,” the researcher said.

The uncertainty has caused “incremental” damage, Justice said, pointing to some Million Veteran Program grants that have lapsed. As the year progresses, she predicted, “people are going to be feeling it a lot.”

Because of their military experience, maintaining veterans’ health poses different challenges compared with caring for civilians. The program’s examinations of genetic and clinical data allow researchers to investigate questions that have bedeviled veterans for years. As examples, Shulkin cited “how we might be able to better diagnose earlier and start thinking about effective treatments for these toxic exposures” — such as to burn pits used to dispose of trash at military outposts overseas — as well as predispositions to post-traumatic stress disorder.

“The rest of the research community isn’t likely to focus specifically” on veterans, he said. The VA community, however, has delivered discoveries of importance to the world: Three VA researchers have won Nobel Prizes, and the agency created the first pacemaker. Its efforts also helped ignite the boom in GLP-1 weight loss drugs.

Yet turbulence has been felt throughout VA’s research enterprise. Like other government scientific agencies, it’s been buffeted by layoffs, contract cuts, and canceled research.

“There are planned trials that have not started, there are ongoing trials that have been stopped, and there are trials that have fallen apart due to staff layoffs — yes or no?” said Sen. Patty Murray (D-Wash.), pressing Collins in a May hearing of the Senate Veterans’ Affairs Committee.

The agency, which has a budget of roughly $1 billion for its research arm this fiscal year, has slashed infrastructure that supports scientific inquiry, according to documents shared with KFF Health News by Senate Democrats on the Veterans’ Affairs Committee. It has canceled at least 37 research-related contracts, including for genomic sequencing and for library and biostatistics services. The department has separately canceled four contracts for cancer registries for veterans, creating potential gaps in the nation’s statistics.

Job worries also consume many scientists at the VA.

According to agency estimates in May, about 4,000 of its workers are on term limits, with contracts that expire after certain periods. Many of these individuals worked not only for the VA’s research groups but also with clinical teams or local medical centers.

When the new leaders first entered the agency, they instituted a hiring freeze, current and former VA researchers told KFF Health News. That prevented the agency’s research offices from renewing contracts for their scientists and support staff, which in previous years had frequently been a pro forma step. Some of those individuals who had been around for decades haven’t been rehired, one former researcher told KFF Health News.

The freeze and the uncertainty around it led to people simply departing the agency, a current VA researcher said.

The losses, the individual said, include some people who “had years of experience and expertise that can’t be replaced.”

Preserving jobs — or some jobs — has been a congressional focus. In May, after inquiries from Sen. Jerry Moran, the Republican who chairs the Veterans’ Affairs Committee, about staffing for agency research and the Million Veteran Program, Collins wrote in a letter that he was extending the terms of research employees for 90 days and developing exemptions to the hiring freeze for the genomics project and other research initiatives.

Holding jobs is one thing — doing them is another. In June, at the annual research meeting of AcademyHealth — an organization of researchers, policymakers, and others who study how U.S. health care is delivered — some VA researchers were unable to deliver a presentation touching on psychedelics and mental health disparities and another on discrimination against LGBTQ+ patients, Aaron Carroll, the organization’s president, told KFF Health News.

At that conference, reflecting a trend across the federal government, researchers from the Centers for Medicare & Medicaid Services and the Agency for Healthcare Research and Quality also dropped out of presenting. “This drop in federal participation is deeply concerning, not only for our community of researchers and practitioners but for the public, who rely on transparency, collaboration, and evidence-based policy grounded in rigorous science,” Carroll said.

We’d like to speak with current and former personnel from the Department of Health and Human Services or its component agencies who believe the public should understand the impact of what’s happening within the federal health bureaucracy. Please message KFF Health News on Signal at (415) 519-8778 or get in touch here.

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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Participating states to test outcomes-based payments for sickle cell disease treatments, improving care while lowering long-term costs